Re: Darla

[Guest guest]

The mom doesn't want to join any of these groups because she feels it would be too hard to hear the suffering and still be able to handle her son's problems. I think she is struggling with acceptance issues.

Darla, You are such a great person for helping this family! I feel sad that she feels this way, I can't imagine it is any easier being isolated. When Chelsea was first dx'd with mito, all the drs, her neuro included, told me they didn't know what to expect, but it was going to be bad and she probably was not going to survive long after her gtube placement. Boy! Were they wrong! I found this group a few months after and it really helped me to put perspective on Chelsea's condition that I had not had before. And suddenly, I had a whole gaggle of friends who were dealing with the same things I was. This groups has changed my life and I don't know where I would be without all the information you all provide here.

Accepting this disease is VERY hard, but it can also be very liberating. I will keep this family in my prayers and hope they find some peace.

Have a great Holiday!

e, Chelsea's mom(nonspecific mito)

[Guest guest]

The mom doesn't want to join any of these groups because she feels it would be too hard to hear the suffering and still be able to handle her son's problems. I think she is struggling with acceptance issues.

Darla, You are such a great person for helping this family! I feel sad that she feels this way, I can't imagine it is any easier being isolated. When Chelsea was first dx'd with mito, all the drs, her neuro included, told me they didn't know what to expect, but it was going to be bad and she probably was not going to survive long after her gtube placement. Boy! Were they wrong! I found this group a few months after and it really helped me to put perspective on Chelsea's condition that I had not had before. And suddenly, I had a whole gaggle of friends who were dealing with the same things I was. This groups has changed my life and I don't know where I would be without all the information you all provide here.

Accepting this disease is VERY hard, but it can also be very liberating. I will keep this family in my prayers and hope they find some peace.

Have a great Holiday!

e, Chelsea's mom(nonspecific mito)

[Guest guest]

The mom doesn't want to join any of these groups because she feels it would be too hard to hear the suffering and still be able to handle her son's problems. I think she is struggling with acceptance issues.

Darla, You are such a great person for helping this family! I feel sad that she feels this way, I can't imagine it is any easier being isolated. When Chelsea was first dx'd with mito, all the drs, her neuro included, told me they didn't know what to expect, but it was going to be bad and she probably was not going to survive long after her gtube placement. Boy! Were they wrong! I found this group a few months after and it really helped me to put perspective on Chelsea's condition that I had not had before. And suddenly, I had a whole gaggle of friends who were dealing with the same things I was. This groups has changed my life and I don't know where I would be without all the information you all provide here.

Accepting this disease is VERY hard, but it can also be very liberating. I will keep this family in my prayers and hope they find some peace.

Have a great Holiday!

e, Chelsea's mom(nonspecific mito)

[Guest guest]

How old is ? Asenath had something in her muscle biopsy that indicated a possibility of MNGIE and the specialist was supposed to test for MNGIE with a special blood test. I haven't heard anything further on the issue and her biopsy was in March of this year. What does your doctor say about it since the test was normal? Dr. Whiteman assumes Mito is Asenath's issue and treats her for the condition and we basically call her an unknown Mito case. We have other children with soft signs and I also have had issues since 1990 and have had recent testing with Dr. Whiteman also pointing at Mito. I hope you get answers sooner than us on the issue. Darla: mommy to Asenath Darla My son, , was tested for MNGIE. It is the one that, up until now, most closely resembles his symptomology. However, is Thymidine Deficiency test was normal. AlisonPlease contact mito-owner with any problems or questions.

[Guest guest]

How old is ? Asenath had something in her muscle biopsy that indicated a possibility of MNGIE and the specialist was supposed to test for MNGIE with a special blood test. I haven't heard anything further on the issue and her biopsy was in March of this year. What does your doctor say about it since the test was normal? Dr. Whiteman assumes Mito is Asenath's issue and treats her for the condition and we basically call her an unknown Mito case. We have other children with soft signs and I also have had issues since 1990 and have had recent testing with Dr. Whiteman also pointing at Mito. I hope you get answers sooner than us on the issue. Darla: mommy to Asenath Darla My son, , was tested for MNGIE. It is the one that, up until now, most closely resembles his symptomology. However, is Thymidine Deficiency test was normal. AlisonPlease contact mito-owner with any problems or questions.

[Guest guest]

How old is ? Asenath had something in her muscle biopsy that indicated a possibility of MNGIE and the specialist was supposed to test for MNGIE with a special blood test. I haven't heard anything further on the issue and her biopsy was in March of this year. What does your doctor say about it since the test was normal? Dr. Whiteman assumes Mito is Asenath's issue and treats her for the condition and we basically call her an unknown Mito case. We have other children with soft signs and I also have had issues since 1990 and have had recent testing with Dr. Whiteman also pointing at Mito. I hope you get answers sooner than us on the issue. Darla: mommy to Asenath Darla My son, , was tested for MNGIE. It is the one that, up until now, most closely resembles his symptomology. However, is Thymidine Deficiency test was normal. AlisonPlease contact mito-owner with any problems or questions.

[Guest guest]

Darla, No time to read about this extensively--- is undergoing the 24

ph probe for reflux and I have to watch him constantly. But, wanted to say

that probably the first tip-off that there was something wrong with

was the fact that his toes " overlapped. " In other words, the third toes

were lower than the others (not exactly overlapping). Also, he held his

hands the exact same way, with thumb tucked in as you describe. He had

other anomalies as well--ears rotate backward a little and are somewhat

lower set, and fingernail on right index finger not fully formed. Because

of the above, it was first thought had a chromosomal syndrome.

Later, the doctors confirmed that in some cases, mito causes these

abnormalities because the disease can affect the developing embryo from the

earliest weeks.

Other first signs were severe reflux and difficulty feeding. I was always

worried that he wasn't eating enough. Plus, it seemed he was intolerant to

formula and we switched around a little before settling on soy formula. He

also became very sick and dehydrated during a normal virus, necessitating

hospital admission. Developmental milestones were normal until 3-4 months

at which time, he lost the ability to roll over which he had done at 2

months. It was at this time that the proverbial sh*t hit the fan and we

started seeing specialists and searching for a diagnosis.

I remember those early days so well as they were the most difficult of my

life. God bless, Lori

and (4 1/2, complex I and IV)

Re: eyelashes and other characteristics

> > >

> > > When Dr. Cohen did his first evaluation of Grace they spent a

> long

> > time studying her facial features. They made many comments about

> > her eyes/eyelashes, and other features. The Drs. commented that

> her

> > ears were flat and had a nic at the top. At first I thought they

> > were crazy, but I guess it is some of the hereditary signs. I am

> > learning new every day about this crazy disease.

> > >

> > >

> > >

> > > Please contact mito-owner with any problems or

> > questions.

> > >

> > >

> > >

[Guest guest]

It has been rough at times but I am doing ok. I would probably be going nuts if it weren't for my relationship with God. And, of course, you guys have been so precious to me as well. It has really helped me to be able to talk to all of you about my concerns and know you understand and will be there for me and pray for my family. I have found that bubble baths are a major respite for me and try to relax for a while in the tub and clear my mind. Getting out has been a little harder recently but my husband and I still try to get out on a date (With Porrah) once every couple of weeks or even weekly when we can. It has really been helpful to get away for a while. I have been trying to release my worries to God and must admit it has been hard to not worry about this virus and what it could do. Asenath has went downhill today and I can tell she is really struggling with this virus. Hopefully the antibiotics will help her to not get to bad and prevent a stroke from occurring. You are so kind to write to me and encouraging me. Thank you SO much. I will try to rest in God. It's a good reminder to me. I also called my sister-in-law earlier today (she has been my closest friend since I was 17) just to ask her to pray for me as I was feeling quite panicked. She is a jewel to me and always brings great encouragement and comfort to me. One of these days we will meet in person! Darla: mommy to Asenath Re: -stress issue> > Darla,> > I printed all of your emails and thought I would respond to all three > in this one.> > Luke- Yes pursue, when you have time, giving him the opportunity to > speak with some one outside of the family. It make take more than one > visit for him to feel comfortable enough with that person to really > open up. I'm so sorry that they are still ill with the lingering > unknown virus. How frustrating and scary to have that lingering in > your home. Ada, also had a difficult time kicking it. I supplemented > her with mega Vit C & Fish Oil & Zinc Lozenges. and lots of Rest, > rest, rest. > > As far as Asenath & Porrah catching it, oh my, let's hope......, > watch carefully. IV's really helped pull Lily back from the brink of > the illness/seizure cycle a few times. > > How is Zipporrah doing with the nursing/eating? did you get any > advice/help from whiteman when you spoke with him?> > I'm sorry Dr whiteman reported back to you with the news that he did.> Thankful that the MRI etc was normal. Lily had high lactic acid. I > remember reading an E Medicine article on Lactic acidosis and pretty > much panicking! That was near the beginning of the journey, we > become "use to " so many things that one shouldn't. Anyways, Lily's > levels were quite high off and on, more high than low. We never did > have it "treated" per se. Hopefully Whiteman will take a more pro-> active course with her, since he is the expert. > > My thoughts are with you and yours, > > > Please contact mito-owner with any problems or questions. > >

[Guest guest]

It has been rough at times but I am doing ok. I would probably be going nuts if it weren't for my relationship with God. And, of course, you guys have been so precious to me as well. It has really helped me to be able to talk to all of you about my concerns and know you understand and will be there for me and pray for my family. I have found that bubble baths are a major respite for me and try to relax for a while in the tub and clear my mind. Getting out has been a little harder recently but my husband and I still try to get out on a date (With Porrah) once every couple of weeks or even weekly when we can. It has really been helpful to get away for a while. I have been trying to release my worries to God and must admit it has been hard to not worry about this virus and what it could do. Asenath has went downhill today and I can tell she is really struggling with this virus. Hopefully the antibiotics will help her to not get to bad and prevent a stroke from occurring. You are so kind to write to me and encouraging me. Thank you SO much. I will try to rest in God. It's a good reminder to me. I also called my sister-in-law earlier today (she has been my closest friend since I was 17) just to ask her to pray for me as I was feeling quite panicked. She is a jewel to me and always brings great encouragement and comfort to me. One of these days we will meet in person! Darla: mommy to Asenath Re: -stress issue> > Darla,> > I printed all of your emails and thought I would respond to all three > in this one.> > Luke- Yes pursue, when you have time, giving him the opportunity to > speak with some one outside of the family. It make take more than one > visit for him to feel comfortable enough with that person to really > open up. I'm so sorry that they are still ill with the lingering > unknown virus. How frustrating and scary to have that lingering in > your home. Ada, also had a difficult time kicking it. I supplemented > her with mega Vit C & Fish Oil & Zinc Lozenges. and lots of Rest, > rest, rest. > > As far as Asenath & Porrah catching it, oh my, let's hope......, > watch carefully. IV's really helped pull Lily back from the brink of > the illness/seizure cycle a few times. > > How is Zipporrah doing with the nursing/eating? did you get any > advice/help from whiteman when you spoke with him?> > I'm sorry Dr whiteman reported back to you with the news that he did.> Thankful that the MRI etc was normal. Lily had high lactic acid. I > remember reading an E Medicine article on Lactic acidosis and pretty > much panicking! That was near the beginning of the journey, we > become "use to " so many things that one shouldn't. Anyways, Lily's > levels were quite high off and on, more high than low. We never did > have it "treated" per se. Hopefully Whiteman will take a more pro-> active course with her, since he is the expert. > > My thoughts are with you and yours, > > > Please contact mito-owner with any problems or questions. > >

[Guest guest]

It has been rough at times but I am doing ok. I would probably be going nuts if it weren't for my relationship with God. And, of course, you guys have been so precious to me as well. It has really helped me to be able to talk to all of you about my concerns and know you understand and will be there for me and pray for my family. I have found that bubble baths are a major respite for me and try to relax for a while in the tub and clear my mind. Getting out has been a little harder recently but my husband and I still try to get out on a date (With Porrah) once every couple of weeks or even weekly when we can. It has really been helpful to get away for a while. I have been trying to release my worries to God and must admit it has been hard to not worry about this virus and what it could do. Asenath has went downhill today and I can tell she is really struggling with this virus. Hopefully the antibiotics will help her to not get to bad and prevent a stroke from occurring. You are so kind to write to me and encouraging me. Thank you SO much. I will try to rest in God. It's a good reminder to me. I also called my sister-in-law earlier today (she has been my closest friend since I was 17) just to ask her to pray for me as I was feeling quite panicked. She is a jewel to me and always brings great encouragement and comfort to me. One of these days we will meet in person! Darla: mommy to Asenath Re: -stress issue> > Darla,> > I printed all of your emails and thought I would respond to all three > in this one.> > Luke- Yes pursue, when you have time, giving him the opportunity to > speak with some one outside of the family. It make take more than one > visit for him to feel comfortable enough with that person to really > open up. I'm so sorry that they are still ill with the lingering > unknown virus. How frustrating and scary to have that lingering in > your home. Ada, also had a difficult time kicking it. I supplemented > her with mega Vit C & Fish Oil & Zinc Lozenges. and lots of Rest, > rest, rest. > > As far as Asenath & Porrah catching it, oh my, let's hope......, > watch carefully. IV's really helped pull Lily back from the brink of > the illness/seizure cycle a few times. > > How is Zipporrah doing with the nursing/eating? did you get any > advice/help from whiteman when you spoke with him?> > I'm sorry Dr whiteman reported back to you with the news that he did.> Thankful that the MRI etc was normal. Lily had high lactic acid. I > remember reading an E Medicine article on Lactic acidosis and pretty > much panicking! That was near the beginning of the journey, we > become "use to " so many things that one shouldn't. Anyways, Lily's > levels were quite high off and on, more high than low. We never did > have it "treated" per se. Hopefully Whiteman will take a more pro-> active course with her, since he is the expert. > > My thoughts are with you and yours, > > > Please contact mito-owner with any problems or questions. > >

[Guest guest]

Darla, I hope everything goes okay with Asenath and Zipporah!

[Guest guest]

Darla, I hope everything goes okay with Asenath and Zipporah!

[Guest guest]

Darla, I hope everything goes okay with Asenath and Zipporah!

[Guest guest]

He said something about malignant migraines being similar at least to vasculitis. He was confusing to me though because I think he thought SLE was lupus rather than stroke-like-episode. I guess I didn't get that he said there were Mito's that cause vasculitis. Sorry I'm not much help. Darla Darla Darla,on the chat Boles mentioned there are some mito syndromes associated with vasculitis but did he ever say which ones?Is MNGIE associated with vasculitis, he also said it can be a certain type of migrane I thought..thanks Please contact mito-owner with any problems or questions.