Re: Our rollercoaster Continues-will it never end.......

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

October 2, 2003

Sorry about your roller coaster ride, ...you guys have been through a lot.

If Dr Youngs recommends a good metabolic clinic, I would go there. A lot of us go to Chicago for Pfeiffer, so it isn't unheard of to have to travel for the services our children need, despite it being inconvenient and expensive.

The way it looks to me, is not that you're coming unglued, but that Dr Youngs is being very thorough and not wanting to miss anything or leave you with easy answers...she wants you to have the right answers. I don't know her personally, but from what I have heard, Dr Youngs is very trustworthy, really knows her stuff , and goes the extra mile for her patients.

And even if isn't "truly autistic" and if his autistic-like symptoms are due to something else, you will always have this group for support. Our kids move in and out of the spectrum, but there is always a shared connection amongst us all, no matter what the exact diagnosis is. I wish I knew more about genetics/metabolic disorders but I don't....I'm sure someone out here does and can offer you more specific advice. Along the lines of what Penny has started taling about though...high-functioning vs low, PDD, Asperger's, autistic "traits"...whatEVER...as long as you are finding the appropriate help for your son, who cares what you call his diagnosis? We treat the symptoms and the problems, not the label. So you are always welcome to get support here.

--

Our rollercoaster Continues-will it never end.......

Some of you know our story.......but for those of you who don't.

I noticed that my son wasn't developing right at about 6 months, by 9 months our peds diagnosed him with hypotonia. He started PT within the month. He sat at 10.5 months, crawled at 12 months and walked at 19 months. He's been globally developmentally delayed, hypotonia and has had vomiting episodes thinking back from about 4 months. Well now at 29 months old has been through Brain MRI with and without contrast, MR Spectroscopy of the brain without contrast, Head CT without IV contrast , EEG, Abdominal Ultrasound, Muscle Biopsy, Hearing Tests, Upper GI and a ton and I mean a ton of blood and urine tests. All within the months of November 2002 to February 2003. So far all the test have feel within normal range. By April we had been in the hospital twice once in January due to vomiting and the second time in March due to a grand mal seizure. So this summer was diagnosed with mild to moderate autism, which explained his delays and this Sept. was diagnosed with Cyclic vomiting (http://www.cvsaonline.org/), so we thought all our ducks were in a row and everything was explained.

We went to see Dr. Youngs (for the second time) to begin biomedical and diet intervention, well we came away from the visit with even more unanswered questions. It seems we've taken 20 steps backwards now. The first think we did during this visit was get her caught up on his history. After that she asked some questions and observed , then she gave me her thoughts. Wow, our mouths dropped to the floor. The following aren't exact words, so here it goes. Her opinion of

Dr. Solomon was he hands out the autistic diagnoses very easy, she truly believes that may have autistic characteristics but she doesn't think he is and she believes that suffers from hypotonia, unexplained vomiting episodes and autistic characteristics due to a underlying medical issue (metabolic). My head just began to spin. She thinks we should go to a metabolic clinic, which Michigan has none. Dr. Youngs is going to call 's neurologist Dr. Martha Carlson before we go to see her next Thursday to bounce ideas off each other and try to put us in the correct direction. So now we have Dr. Youngs not agreeing with Dr. Solomon regarding the autistic diagnosis and Dr. Li regarding the Cyclic Vomiting Syndrome diagnosis, now what? Any comments, family/friend support including from this group has helped my husband and I keep it together, well now we're even more lost. We thought we had everything under control and now a doctor is tell us we don't

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