Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 jennie... I had a rotten ped once...who treated me like I was just a crappy mother, rather than a mother of a child with disabilities! In one visit.... was 5 at the time.... " why doesn't he talk? " .... what?? um, because he has mosaic down syndrome????::shrug::: she said, " children with down syndrome talk! " sigh... then she says, " why isn't he potty trained? " uuuh, well, because he has a bowel disease????::shrug:: to which she said, " people with Hirschsprung's Disease can be potty trained! " I left in tears that day too...just furious. Do I need to say that we NEVER went back to that pediatrician?? I'd find another. You should never have to feel like that... ever. Looks like she missed the lecture in college on bedside manner. ~ANGEL~ Mom to 13, Mosaic Down Syndrome/Hirschsprung's Disease Lance 18, Tyler 14, 11 Jaeda 10 and Shayne 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 In my opinion I would change doctors...it seems to me from what you have said that she is not really all into helping your son as a patient one on one...she is handling it as though you are a number on her little clip board and checking them off as she goes...I never had to go through all the tests and back and forth from each doctor with my daughter (MDS), they diagnoised her right from birth...they knew right away what she had by looking at her.... has the same sensory problem with food and many other things...I do not understand how this doctor is going to tell you that you should change your sons whole eating routine KNOWING that he has these issues...it seems like she is not looking at the whole picture very clearly...now for the Ritalin thing, I have never been a real fan on that medication only due to the fact that I have seen kids that are on that and what it actually does to them....they should take that medication off the market...now for the bathroom issue, the school will work with you... has the same problem, when she gets overstimulated or angry or just insecure she urinates....it is something that I think parents have to deal with and help them deal with it also...for taking you other child along for appointments should not become a problem for the doctor...she is not seeing her...I think it is wrong for the doctor to TELL you what you should do with your daughter...it is not her place at all...just re-reading your email makes me mad....I am sure there is a better doctor out there that is able to be one on one with your son...my daughter's pediatrician is the greatest man! he talks to one on one and tells her everything that he is going to do while she is there...he sits with her and helps her deal when she is scared...he talks to my son while he is along and loves to hear what he is doing in school....hope everything works out! Jennie wrote: This is one of those times when I wish I was physically talking to this group and not just typing in my thoughts. I've just returned from the neurologist and I am SO frustrated and SO upset and Gosh. I just don't think any parent should leave a neurologist's office in tears, not because the test results were bad, but because you're so frustrated with the physician! We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've been diagnosing since February. Our first chromosomal assay came back negative. We asked about the other assay tests, she said our insurance wouldn't pay for it. Today she ordered a specific MDS assay. Why the <BLEEP> couldn't she have ordered it three months ago? What changed? Then she says that the omega-3 supplements I'm using aren't good so I should feed my son grilled salmon twice a week. OK. Tell me how to get a child with sensory issues to eat salmon twice a week. Then she tells me we're just going to do ritalin and see how it goes from there. I had at least three other concerns that went unaddressed because she wants to see how the ritalin affects him first. Then she tells me to get rid of ALL white sugared foods and all processed foods and only feed him fresh fruit and veggies, no juice either because fresh fruit is better. Again, how do you get a child with sensory issues to eat pineapple? Or oranges? Or anything?!?! hello? Do ANY of your kids eat carrots?!?! Then she tells me not to bring my two year old to the appointments. I tell her there is no one else to watch her. She tells me to post a bulletin at church saying I need help and to get her into mom's day out programs. I know like five people at church and they work during the day and I can just barely scrape money together to keep food on the table and buy gas and hello!? Like I can afford mom's day out. She didn't address my son personally. She asked me the name of the other neurologist I'm seeing. I told her, you're the only neurologist I've EVER seen. She told me that the reason he has to urinate every time he gets overstimulated is because he's not intellectually smart enough to go when he should. If that's the case, how come he's not in diapers still? So she said the school would just have to figure that out then when he says he has to go at inopportune times. I told her he can remember cognitive things today and not tomorrow. She said we had to " wait and see " after he's on ritalin. But then she said not all kids respond to ritalin. I could go on, but right now I can't type because I can't see the words through my tears. All in favor of me switching neurologists, raise your hands.. er, type a response. Please help. If you live in the GA area, can I call you? I could really use a friend right now. Jennie Jessie (6), (5 - MDS?), Maren (2) --------------------------------- Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Jennie If you give me your number, I will be happy to call you and help you with this! Kristy Jennie wrote: This is one of those times when I wish I was physically talking to this group and not just typing in my thoughts. I've just returned from the neurologist and I am SO frustrated and SO upset and Gosh. I just don't think any parent should leave a neurologist's office in tears, not because the test results were bad, but because you're so frustrated with the physician! We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've been diagnosing since February. Our first chromosomal assay came back negative. We asked about the other assay tests, she said our insurance wouldn't pay for it. Today she ordered a specific MDS assay. Why the <BLEEP> couldn't she have ordered it three months ago? What changed? Then she says that the omega-3 supplements I'm using aren't good so I should feed my son grilled salmon twice a week. OK. Tell me how to get a child with sensory issues to eat salmon twice a week. Then she tells me we're just going to do ritalin and see how it goes from there. I had at least three other concerns that went unaddressed because she wants to see how the ritalin affects him first. Then she tells me to get rid of ALL white sugared foods and all processed foods and only feed him fresh fruit and veggies, no juice either because fresh fruit is better. Again, how do you get a child with sensory issues to eat pineapple? Or oranges? Or anything?!?! hello? Do ANY of your kids eat carrots?!?! Then she tells me not to bring my two year old to the appointments. I tell her there is no one else to watch her. She tells me to post a bulletin at church saying I need help and to get her into mom's day out programs. I know like five people at church and they work during the day and I can just barely scrape money together to keep food on the table and buy gas and hello!? Like I can afford mom's day out. She didn't address my son personally. She asked me the name of the other neurologist I'm seeing. I told her, you're the only neurologist I've EVER seen. She told me that the reason he has to urinate every time he gets overstimulated is because he's not intellectually smart enough to go when he should. If that's the case, how come he's not in diapers still? So she said the school would just have to figure that out then when he says he has to go at inopportune times. I told her he can remember cognitive things today and not tomorrow. She said we had to " wait and see " after he's on ritalin. But then she said not all kids respond to ritalin. I could go on, but right now I can't type because I can't see the words through my tears. All in favor of me switching neurologists, raise your hands.. er, type a response. Please help. If you live in the GA area, can I call you? I could really use a friend right now. Jennie Jessie (6), (5 - MDS?), Maren (2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Find a new doctor! Just my opinion. mom to 11, almost 9, 6 and 3 & 8 months Re: Please Help! > Jennie > If you give me your number, I will be happy to call you and help you with > this! > Kristy > > Jennie wrote: > This is one of those times when I wish I was physically talking > to > this group and not just typing in my thoughts. I've just returned > from the neurologist and I am SO frustrated and SO upset and Gosh. I > just don't think any parent should leave a neurologist's office in > tears, not because the test results were bad, but because you're so > frustrated with the physician! > > We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've > been diagnosing since February. Our first chromosomal assay came > back negative. We asked about the other assay tests, she said our > insurance wouldn't pay for it. Today she ordered a specific MDS > assay. Why the <BLEEP> couldn't she have ordered it three months ago? > What changed? > > Then she says that the omega-3 supplements I'm using aren't good so I > should feed my son grilled salmon twice a week. OK. Tell me how to > get a child with sensory issues to eat salmon twice a week. > > Then she tells me we're just going to do ritalin and see how it goes > from there. I had at least three other concerns that went > unaddressed because she wants to see how the ritalin affects him > first. > > Then she tells me to get rid of ALL white sugared foods and all > processed foods and only feed him fresh fruit and veggies, no juice > either because fresh fruit is better. Again, how do you get a child > with sensory issues to eat pineapple? Or oranges? Or anything?!?! > hello? Do ANY of your kids eat carrots?!?! > > Then she tells me not to bring my two year old to the appointments. > I tell her there is no one else to watch her. She tells me to post a > bulletin at church saying I need help and to get her into mom's day > out programs. I know like five people at church and they work during > the day and I can just barely scrape money together to keep food on > the table and buy gas and hello!? Like I can afford mom's day out. > > She didn't address my son personally. > > She asked me the name of the other neurologist I'm seeing. I told > her, you're the only neurologist I've EVER seen. > > She told me that the reason he has to urinate every time he gets > overstimulated is because he's not intellectually smart enough to go > when he should. If that's the case, how come he's not in diapers > still? So she said the school would just have to figure that out > then when he says he has to go at inopportune times. > > I told her he can remember cognitive things today and not tomorrow. > She said we had to " wait and see " after he's on ritalin. But then > she said not all kids respond to ritalin. > > I could go on, but right now I can't type because I can't see the > words through my tears. > > All in favor of me switching neurologists, raise your hands.. er, > type a response. > > Please help. If you live in the GA area, can I call you? I could > really use a friend right now. > Jennie > Jessie (6), (5 - MDS?), Maren (2) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Jennie, I didn't notice where you are in GA, but if you call the National Down Syndrome Congress' main office in Atlanta, I bet someone there can refer you to a physician who has more senstivity, and probably more experience. Hang in there. Having a child with any disability means a lifetime of educating others! Judie, mom to Christi, 27 and others Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 I am raising my hand, change the Dr. A good Dr. should listen to your concerns and work with you. Luanne Jennie wrote: This is one of those times when I wish I was physically talking to this group and not just typing in my thoughts. I've just returned from the neurologist and I am SO frustrated and SO upset and Gosh. I just don't think any parent should leave a neurologist's office in tears, not because the test results were bad, but because you're so frustrated with the physician! We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've been diagnosing since February. Our first chromosomal assay came back negative. We asked about the other assay tests, she said our insurance wouldn't pay for it. Today she ordered a specific MDS assay. Why the <BLEEP> couldn't she have ordered it three months ago? What changed? Then she says that the omega-3 supplements I'm using aren't good so I should feed my son grilled salmon twice a week. OK. Tell me how to get a child with sensory issues to eat salmon twice a week. Then she tells me we're just going to do ritalin and see how it goes from there. I had at least three other concerns that went unaddressed because she wants to see how the ritalin affects him first. Then she tells me to get rid of ALL white sugared foods and all processed foods and only feed him fresh fruit and veggies, no juice either because fresh fruit is better. Again, how do you get a child with sensory issues to eat pineapple? Or oranges? Or anything?!?! hello? Do ANY of your kids eat carrots?!?! Then she tells me not to bring my two year old to the appointments. I tell her there is no one else to watch her. She tells me to post a bulletin at church saying I need help and to get her into mom's day out programs. I know like five people at church and they work during the day and I can just barely scrape money together to keep food on the table and buy gas and hello!? Like I can afford mom's day out. She didn't address my son personally. She asked me the name of the other neurologist I'm seeing. I told her, you're the only neurologist I've EVER seen. She told me that the reason he has to urinate every time he gets overstimulated is because he's not intellectually smart enough to go when he should. If that's the case, how come he's not in diapers still? So she said the school would just have to figure that out then when he says he has to go at inopportune times. I told her he can remember cognitive things today and not tomorrow. She said we had to " wait and see " after he's on ritalin. But then she said not all kids respond to ritalin. I could go on, but right now I can't type because I can't see the words through my tears. All in favor of me switching neurologists, raise your hands.. er, type a response. Please help. If you live in the GA area, can I call you? I could really use a friend right now. Jennie Jessie (6), (5 - MDS?), Maren (2) --------------------------------- Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 I second the motion - both of my arms are up in the air swinging back and forth. Change your neurologist!!!! No doctor should ever make you feel like that! You are a great Mom!!!! , Mother of (25), (21), and (17 mds) > > This is one of those times when I wish I was physically talking to > this group and not just typing in my thoughts. I've just returned > from the neurologist and I am SO frustrated and SO upset and Gosh. I > just don't think any parent should leave a neurologist's office in > tears, not because the test results were bad, but because you're so > frustrated with the physician! > > We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've > been diagnosing since February. Our first chromosomal assay came > back negative. We asked about the other assay tests, she said our > insurance wouldn't pay for it. Today she ordered a specific MDS > assay. Why the <BLEEP> couldn't she have ordered it three months ago? > What changed? > > Then she says that the omega-3 supplements I'm using aren't good so I > should feed my son grilled salmon twice a week. OK. Tell me how to > get a child with sensory issues to eat salmon twice a week. > > Then she tells me we're just going to do ritalin and see how it goes > from there. I had at least three other concerns that went > unaddressed because she wants to see how the ritalin affects him > first. > > Then she tells me to get rid of ALL white sugared foods and all > processed foods and only feed him fresh fruit and veggies, no juice > either because fresh fruit is better. Again, how do you get a child > with sensory issues to eat pineapple? Or oranges? Or anything?!?! > hello? Do ANY of your kids eat carrots?!?! > > Then she tells me not to bring my two year old to the appointments. > I tell her there is no one else to watch her. She tells me to post a > bulletin at church saying I need help and to get her into mom's day > out programs. I know like five people at church and they work during > the day and I can just barely scrape money together to keep food on > the table and buy gas and hello!? Like I can afford mom's day out. > > She didn't address my son personally. > > She asked me the name of the other neurologist I'm seeing. I told > her, you're the only neurologist I've EVER seen. > > She told me that the reason he has to urinate every time he gets > overstimulated is because he's not intellectually smart enough to go > when he should. If that's the case, how come he's not in diapers > still? So she said the school would just have to figure that out > then when he says he has to go at inopportune times. > > I told her he can remember cognitive things today and not tomorrow. > She said we had to " wait and see " after he's on ritalin. But then > she said not all kids respond to ritalin. > > I could go on, but right now I can't type because I can't see the > words through my tears. > > All in favor of me switching neurologists, raise your hands.. er, > type a response. > > Please help. If you live in the GA area, can I call you? I could > really use a friend right now. > Jennie > Jessie (6), (5 - MDS?), Maren (2) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Jennie, I responded " reply " to your message from my email and not here without realizing it, so don't know if you recieved my two cents (smile). I am appalled at the callious approach that this doctor treated you and your son and your daughter. There is NO EXCUSE for such rudeness. She definitely missed the class on patient ethics. RUN, don't walk to a new doctor. Omega 3 capsules are a good source of omega 3! Salmon is a meaty fish and has amounts of mercury in it. (And some people are alergic to fish, so this doctor can't use the " eat salmon or it's not enough " excuse.) Also a good source of omega 3 is ground flaxmeal. You can put it in stuff you make. I have an excellent recipe for the picky eaters out there, which I will send when my daughter goes to sleep. (Grated carrot is in it. I feel if you eat a carrot does it matter if it's hidden in a healty muffin?) Flax should be in the ground form for your body to get the most benefit from. (there are flax seeds out there too, but ground is better.) As far as picky....I hid alot of veggies and fruits creatively in healthy muffins and cookies. Also veggie and fruit juice. When my daughter doesn't eat a vegetable I whip out the veggie juice and don't worry about it. Hope my two cents helps (smile). And hope you are feeling better. Donna > > This is one of those times when I wish I was physically talking to > this group and not just typing in my thoughts. I've just returned > from the neurologist and I am SO frustrated and SO upset and Gosh. I > just don't think any parent should leave a neurologist's office in > tears, not because the test results were bad, but because you're so > frustrated with the physician! > > We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've > been diagnosing since February. Our first chromosomal assay came > back negative. We asked about the other assay tests, she said our > insurance wouldn't pay for it. Today she ordered a specific MDS > assay. Why the <BLEEP> couldn't she have ordered it three months ago? > What changed? > > Then she says that the omega-3 supplements I'm using aren't good so I > should feed my son grilled salmon twice a week. OK. Tell me how to > get a child with sensory issues to eat salmon twice a week. > > Then she tells me we're just going to do ritalin and see how it goes > from there. I had at least three other concerns that went > unaddressed because she wants to see how the ritalin affects him > first. > > Then she tells me to get rid of ALL white sugared foods and all > processed foods and only feed him fresh fruit and veggies, no juice > either because fresh fruit is better. Again, how do you get a child > with sensory issues to eat pineapple? Or oranges? Or anything?!?! > hello? Do ANY of your kids eat carrots?!?! > > Then she tells me not to bring my two year old to the appointments. > I tell her there is no one else to watch her. She tells me to post a > bulletin at church saying I need help and to get her into mom's day > out programs. I know like five people at church and they work during > the day and I can just barely scrape money together to keep food on > the table and buy gas and hello!? Like I can afford mom's day out. > > She didn't address my son personally. > > She asked me the name of the other neurologist I'm seeing. I told > her, you're the only neurologist I've EVER seen. > > She told me that the reason he has to urinate every time he gets > overstimulated is because he's not intellectually smart enough to go > when he should. If that's the case, how come he's not in diapers > still? So she said the school would just have to figure that out > then when he says he has to go at inopportune times. > > I told her he can remember cognitive things today and not tomorrow. > She said we had to " wait and see " after he's on ritalin. But then > she said not all kids respond to ritalin. > > I could go on, but right now I can't type because I can't see the > words through my tears. > > All in favor of me switching neurologists, raise your hands.. er, > type a response. > > Please help. If you live in the GA area, can I call you? I could > really use a friend right now. > Jennie > Jessie (6), (5 - MDS?), Maren (2) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Not acceptable at all! Not only should you change doctors but you should call and complain or write a letter. Drs like that need to be put in their place. So often do drs forget that we are their customers and feel they can talk down to us and tell us what is right. My OB (who is retiring this February - sniff) told me NEVER to let a dr tell me about my body or my children. A woman and a mother knows best. You know there is something going on with your child and this dr saying let's see how the ritilan does - is not acceptable. As far as the physician telling you not to bring your other child - well I would tell them to _ I better not say what I would say. Your situation just burns me!!! I hate pompous people. I would love to come over for coffee, but Minnesota is a wee bit far from Georgia. If you want to give me your number also I will call you. I do not have all the wisdom like Kristy but I am good at listening. I have a good friend who's child is delayed - but doing much better with pre-school, but also has not been diagnosed, so I can empathize with your situation. Do you have a good peditrician? You may want to ask them for another neuro referral. My girlfriend was referred to a pediatric dentist for her son and she had a similar experience. This old son of a gun kept scolding her for not brushing her sons teeth and how could she feed him sugar and pop all the time. Her son does not even like sweets or pop!!! and I know for a fact that her son brushes his teeth way more then either of my kids do - but he kept telling her that she was doing something wrong for his teeth to be this bad at 5 years old. She called her dentist after she left there in tears and they quickly referred her to a new pediatric dentist who was astounded that she was treated that way and strongly felt that her son has some type of chromosome abnormality. They got them into the U of M and she is now waiting for more test results. She also called the office manager for the " RUDE " dentist and complained. Of course that was after a few days and she had calmed down. Unfortunately this seems to happen WAY too often! Kristy have you told her about the site for families with undiagnosed children? The one you gave me for my friend? I cannot think of it off the top of my head! - mom to Ella 5 and Caden - 3(MDS) IMDSA Fundraising Chairperson Please Help! This is one of those times when I wish I was physically talking to this group and not just typing in my thoughts. I've just returned from the neurologist and I am SO frustrated and SO upset and Gosh. I just don't think any parent should leave a neurologist's office in tears, not because the test results were bad, but because you're so frustrated with the physician! We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've been diagnosing since February. Our first chromosomal assay came back negative. We asked about the other assay tests, she said our insurance wouldn't pay for it. Today she ordered a specific MDS assay. Why the <BLEEP> couldn't she have ordered it three months ago? What changed? Then she says that the omega-3 supplements I'm using aren't good so I should feed my son grilled salmon twice a week. OK. Tell me how to get a child with sensory issues to eat salmon twice a week. Then she tells me we're just going to do ritalin and see how it goes from there. I had at least three other concerns that went unaddressed because she wants to see how the ritalin affects him first. Then she tells me to get rid of ALL white sugared foods and all processed foods and only feed him fresh fruit and veggies, no juice either because fresh fruit is better. Again, how do you get a child with sensory issues to eat pineapple? Or oranges? Or anything?!?! hello? Do ANY of your kids eat carrots?!?! Then she tells me not to bring my two year old to the appointments. I tell her there is no one else to watch her. She tells me to post a bulletin at church saying I need help and to get her into mom's day out programs. I know like five people at church and they work during the day and I can just barely scrape money together to keep food on the table and buy gas and hello!? Like I can afford mom's day out. She didn't address my son personally. She asked me the name of the other neurologist I'm seeing. I told her, you're the only neurologist I've EVER seen. She told me that the reason he has to urinate every time he gets overstimulated is because he's not intellectually smart enough to go when he should. If that's the case, how come he's not in diapers still? So she said the school would just have to figure that out then when he says he has to go at inopportune times. I told her he can remember cognitive things today and not tomorrow. She said we had to " wait and see " after he's on ritalin. But then she said not all kids respond to ritalin. I could go on, but right now I can't type because I can't see the words through my tears. All in favor of me switching neurologists, raise your hands.. er, type a response. Please help. If you live in the GA area, can I call you? I could really use a friend right now. Jennie Jessie (6), (5 - MDS?), Maren (2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 I haven't told Jennie about the site for undiagnosed children. So, Jennie if you want some feedback from parents whose children are undiagnosed the link is: http://health.groups.yahoo.com/group/undiagnosed_syndromes/ The are a great group of people and have a lot of doctor info. If you do not get a diagnosis soon, I was planning on giving you this info. I have information on a NIH study that could help you get a diagnosis. But, since we are almost 100% certain that he has MDS, I will wait until you have a doctor really rule that out. Kristy erika wrote: Not acceptable at all! Not only should you change doctors but you should call and complain or write a letter. Drs like that need to be put in their place. So often do drs forget that we are their customers and feel they can talk down to us and tell us what is right. My OB (who is retiring this February - sniff) told me NEVER to let a dr tell me about my body or my children. A woman and a mother knows best. You know there is something going on with your child and this dr saying let's see how the ritilan does - is not acceptable. As far as the physician telling you not to bring your other child - well I would tell them to _ I better not say what I would say. Your situation just burns me!!! I hate pompous people. I would love to come over for coffee, but Minnesota is a wee bit far from Georgia. If you want to give me your number also I will call you. I do not have all the wisdom like Kristy but I am good at listening. I have a good friend who's child is delayed - but doing much better with pre-school, but also has not been diagnosed, so I can empathize with your situation. Do you have a good peditrician? You may want to ask them for another neuro referral. My girlfriend was referred to a pediatric dentist for her son and she had a similar experience. This old son of a gun kept scolding her for not brushing her sons teeth and how could she feed him sugar and pop all the time. Her son does not even like sweets or pop!!! and I know for a fact that her son brushes his teeth way more then either of my kids do - but he kept telling her that she was doing something wrong for his teeth to be this bad at 5 years old. She called her dentist after she left there in tears and they quickly referred her to a new pediatric dentist who was astounded that she was treated that way and strongly felt that her son has some type of chromosome abnormality. They got them into the U of M and she is now waiting for more test results. She also called the office manager for the " RUDE " dentist and complained. Of course that was after a few days and she had calmed down. Unfortunately this seems to happen WAY too often! Kristy have you told her about the site for families with undiagnosed children? The one you gave me for my friend? I cannot think of it off the top of my head! - mom to Ella 5 and Caden - 3(MDS) IMDSA Fundraising Chairperson Please Help! This is one of those times when I wish I was physically talking to this group and not just typing in my thoughts. I've just returned from the neurologist and I am SO frustrated and SO upset and Gosh. I just don't think any parent should leave a neurologist's office in tears, not because the test results were bad, but because you're so frustrated with the physician! We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've been diagnosing since February. Our first chromosomal assay came back negative. We asked about the other assay tests, she said our insurance wouldn't pay for it. Today she ordered a specific MDS assay. Why the <BLEEP> couldn't she have ordered it three months ago? What changed? Then she says that the omega-3 supplements I'm using aren't good so I should feed my son grilled salmon twice a week. OK. Tell me how to get a child with sensory issues to eat salmon twice a week. Then she tells me we're just going to do ritalin and see how it goes from there. I had at least three other concerns that went unaddressed because she wants to see how the ritalin affects him first. Then she tells me to get rid of ALL white sugared foods and all processed foods and only feed him fresh fruit and veggies, no juice either because fresh fruit is better. Again, how do you get a child with sensory issues to eat pineapple? Or oranges? Or anything?!?! hello? Do ANY of your kids eat carrots?!?! Then she tells me not to bring my two year old to the appointments. I tell her there is no one else to watch her. She tells me to post a bulletin at church saying I need help and to get her into mom's day out programs. I know like five people at church and they work during the day and I can just barely scrape money together to keep food on the table and buy gas and hello!? Like I can afford mom's day out. She didn't address my son personally. She asked me the name of the other neurologist I'm seeing. I told her, you're the only neurologist I've EVER seen. She told me that the reason he has to urinate every time he gets overstimulated is because he's not intellectually smart enough to go when he should. If that's the case, how come he's not in diapers still? So she said the school would just have to figure that out then when he says he has to go at inopportune times. I told her he can remember cognitive things today and not tomorrow. She said we had to " wait and see " after he's on ritalin. But then she said not all kids respond to ritalin. I could go on, but right now I can't type because I can't see the words through my tears. All in favor of me switching neurologists, raise your hands.. er, type a response. Please help. If you live in the GA area, can I call you? I could really use a friend right now. Jennie Jessie (6), (5 - MDS?), Maren (2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 oh, that is good to remember, regarding the dentist. My pediatric dentist is very good with the kids but last visit, did have two very small cavities and I wondered, hmm, could that be the MDS? because matthew doesn't eat candy or drink soda and really, and despite his tactile issues, we are able to brush his teeth, albeit with some fussing. lol Thanks, I'll take that little nugget to the dentist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 I once had a doctor tell me to leave my off-spring at home during my appointments. I filed a report and complained to my insurance who reimbursed me for my co-pay. I don't know what area you are in, but if you are close I would offer to babysit your daughter for free! Moms need to stick together and help each other. When my kids were little we had a babysitting co-op. It worked out pretty good and no one ever was charged for babysitting. Patty w/ 3 kids: age 23, age 19 (mds) and age 18 Then she tells me not to bring my two year old to the appointments. I tell her there is no one else to watch her. She tells me to post a bulletin at church saying I need help and to get her into mom's day out programs. I know like five people at church and they work during the day and I can just barely scrape money together to keep food on the table and buy gas and hello!? Like I can afford mom's day out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Dear , Hi! I am Barb Martz from Western PA. I was just trying to do some catch up on here this evening and saw your posting from August 17th. WOW!!! I am really disgusted with your doctor, and I don't even have to deal with her! I would not ever stick with this nincompoop! You not only shouldn't have to leave your doctor's office crying (I have done it before), but it is unacceptable! Your instinct for your child, is the strongest thing that you have as a Mom. My instinct saved my child's life.quite literally. When I was pregnant with Sir Jonas (5 y.o. MDS), and was 7 months along, I took my only other son out Trick or Treating to family and friend's homes on Halloween. When I got home, I put my son to bed, and then I sat in a chair in the living room and was thinking that I had not felt my baby move much that day. My thought was that I would closely pay attention to how many movements I felt in one hour. I was thinking that perhaps the baby was asleep, or that things were getting crowded in there and he just was not moving much that day. I kept trying convince my self intellectually that I could just go to the doctor in the morning if I still was not feeling much movement. By the time 6 hours had passed and it was 3 a.m., I could not sleep. I felt that something was wrong and I kept feeling an inner voice telling me that tomorrow would be too late. I honestly tried to sleep, but could not. I woke my husband up at this awfully late hour and told him that I was going in to the hospital and they were going to put me on a monitor to make sure the baby was OK, but I did not want to wake due to school the following day. I drove myself into the hospital, and was put in a room with a monitor hooked up for the baby's heart beat. Soon I was calling Bob to come into the hospital because the baby's heart rate was dropping very low and they were taking me for a level 2 ultrasound. My husband arrived soon thereafter. The doctor came in, and told me that there seemed to be a blockage in the one artery of the umbilical cord, such as a blood clot. He wanted me to go in rapid fashion to a Pittsburgh, PA hospital in an ambulance. Jonas was delivered November 1st, one month early, and weighed 4 pounds 5 oz. He was not effected by the blood clot at all. The doctors all wanted to know how I could possibly have known to go to the hospital in the middle of the night when I was feeling no distress. I could only tell them that I felt it in my heart. I am a faithful person, and my own belief is that God sent me to that hospital. The physicians repeatedly said that Jonas " should not have lived " , " the blood clot was leading straight to his aorta and should have killed him " . I guess God did not get the memo about that because Jonas is very much alive! He will be 6 on Nov 1st this year and he is doing well. Imagine if I had been afraid of looking silly, or of what the nurses or doctors would say of me for coming in there just on a " feeling " or an " instinct " . On the other hand, I can not imagine how I would feel if I had the gut feeling to go and ignored it, and lost Jonas. It still gives me chills to think of it. The reason your letter really touched my heart is that Jonas has severe oral and tactile defensiveness and has since birth. I really understand what you are saying when you say how do you get a child with sensory issues to eat this or that! My goodness! The therapy that Jonas has had since birth to stimulate him has brought him a long way, but I will be darned if I have any idea how I would get salmon into him twice a week. Besides who is paying for all that salmon? YIKES! Why is that any different or better than the omega 3 supplement? Any doctor who would tell you that your other child is not welcome to come to the appointments is also pretty brazen if you ask me! Post a bulletin at the church. lovely to say, but is that what she would do for child care? It takes awhile to build a good trusting relationship at church or anywhere that would allow you to feel confident to leave your child with someone. This woman shows a complete lack of genuine concern or bedside manner. I hope you have already ditched her. I worked for a doctor for 10 years. If there was a sibling there and it was a bother to the doctor or an intrusion in some way to an exam or procedure, I would take the child out to my office for a sticker or lollipop if Mommy allowed. We would get out a few sheets of paper and let the child sit at my desk and draw or color. It was never a big deal, and under no circumstances would Doc have ever asked a parent to get a sitter for their other child! Nor would he have made the parent feel badly like this woman did. UUGH! Perhaps this woman should be somewhere milking venomous snakes instead of treating children! I could offer you many ideas for desensitizing 's gag reflex which is so strong. Jonas would throw up trying to eat jello, tapioca pudding, a tiny bit of cookie, stage three baby foods, you name it! He is the KING of yogurt still, but he is eating all of the above now and much more. He is drinking better too, and we still work on getting him to actually come to a point of eating regular food like we are having for supper. I feel like we will be dealing with this until forever, but thankfully we have made some real progress. His tactile defensiveness is pretty much overcome now. He used to hate to be in his bare feet in grass, would not touch textured things, etc. He plays in sand and dirt now! I do not always get a chance to keep up well with the group anymore. I became a member here before Jonas was a year old, but he is SOO busy now that I don't have much peace time to do this. It is terribly late and all are asleep now or I could not be on here at this moment. So, if you want to e-mail me at the home e-mail address I will respond very quickly to you. I would love to help you in any way if I can. I am not completely clear on what all of s issues are because I had 1,000 e-mails on here when I signed on this evening! I am deleting many without reading, so I am out of the loop, but please contact me here if you wish and I will help you all I can.. walker359@... Blessings, Barb Martz Mom to Jonas (5 MDS) & 11 Please Help! This is one of those times when I wish I was physically talking to this group and not just typing in my thoughts. I've just returned from the neurologist and I am SO frustrated and SO upset and Gosh. I just don't think any parent should leave a neurologist's office in tears, not because the test results were bad, but because you're so frustrated with the physician! We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've been diagnosing since February. Our first chromosomal assay came back negative. We asked about the other assay tests, she said our insurance wouldn't pay for it. Today she ordered a specific MDS assay. Why the <BLEEP> couldn't she have ordered it three months ago? What changed? Then she says that the omega-3 supplements I'm using aren't good so I should feed my son grilled salmon twice a week. OK. Tell me how to get a child with sensory issues to eat salmon twice a week. Then she tells me we're just going to do ritalin and see how it goes from there. I had at least three other concerns that went unaddressed because she wants to see how the ritalin affects him first. Then she tells me to get rid of ALL white sugared foods and all processed foods and only feed him fresh fruit and veggies, no juice either because fresh fruit is better. Again, how do you get a child with sensory issues to eat pineapple? Or oranges? Or anything?!?! hello? Do ANY of your kids eat carrots?!?! Then she tells me not to bring my two year old to the appointments. I tell her there is no one else to watch her. She tells me to post a bulletin at church saying I need help and to get her into mom's day out programs. I know like five people at church and they work during the day and I can just barely scrape money together to keep food on the table and buy gas and hello!? Like I can afford mom's day out. She didn't address my son personally. She asked me the name of the other neurologist I'm seeing. I told her, you're the only neurologist I've EVER seen. She told me that the reason he has to urinate every time he gets overstimulated is because he's not intellectually smart enough to go when he should. If that's the case, how come he's not in diapers still? So she said the school would just have to figure that out then when he says he has to go at inopportune times. I told her he can remember cognitive things today and not tomorrow. She said we had to " wait and see " after he's on ritalin. But then she said not all kids respond to ritalin. I could go on, but right now I can't type because I can't see the words through my tears. All in favor of me switching neurologists, raise your hands.. er, type a response. Please help. If you live in the GA area, can I call you? I could really use a friend right now. Jennie Jessie (6), (5 - MDS?), Maren (2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Hi Barb Totally off the subject. I just wanted to tell you I'm glad to hear from you. I miss stories of Sir Jonas. 5 years old already. Adam turned 4 in July. He is doing great. I hope we will get to hear from you more. Donna - Adam's gram Dear , Hi! I am Barb Martz from Western PA. I was just trying to do some catch up on here this evening and saw your posting from August 17th. WOW!!! I am really disgusted with your doctor, and I don't even have to deal with her! I would not ever stick with this nincompoop! You not only shouldn't have to leave your doctor's office crying (I have done it before), but it is unacceptable! Your instinct for your child, is the strongest thing that you have as a Mom. My instinct saved my child's life.quite literally. When I was pregnant with Sir Jonas (5 y.o. MDS), and was 7 months along, I took my only other son out Trick or Treating to family and friend's homes on Halloween. When I got home, I put my son to bed, and then I sat in a chair in the living room and was thinking that I had not felt my baby move much that day. My thought was that I would closely pay attention to how many movements I felt in one hour. I was thinking that perhaps the baby was asleep, or that things were getting crowded in there and he just was not moving much that day. I kept trying convince my self intellectually that I could just go to the doctor in the morning if I still was not feeling much movement. By the time 6 hours had passed and it was 3 a.m., I could not sleep. I felt that something was wrong and I kept feeling an inner voice telling me that tomorrow would be too late. I honestly tried to sleep, but could not. I woke my husband up at this awfully late hour and told him that I was going in to the hospital and they were going to put me on a monitor to make sure the baby was OK, but I did not want to wake due to school the following day. I drove myself into the hospital, and was put in a room with a monitor hooked up for the baby's heart beat. Soon I was calling Bob to come into the hospital because the baby's heart rate was dropping very low and they were taking me for a level 2 ultrasound. My husband arrived soon thereafter. The doctor came in, and told me that there seemed to be a blockage in the one artery of the umbilical cord, such as a blood clot. He wanted me to go in rapid fashion to a Pittsburgh, PA hospital in an ambulance. Jonas was delivered November 1st, one month early, and weighed 4 pounds 5 oz. He was not effected by the blood clot at all. The doctors all wanted to know how I could possibly have known to go to the hospital in the middle of the night when I was feeling no distress. I could only tell them that I felt it in my heart. I am a faithful person, and my own belief is that God sent me to that hospital. The physicians repeatedly said that Jonas " should not have lived " , " the blood clot was leading straight to his aorta and should have killed him " . I guess God did not get the memo about that because Jonas is very much alive! He will be 6 on Nov 1st this year and he is doing well. Imagine if I had been afraid of looking silly, or of what the nurses or doctors would say of me for coming in there just on a " feeling " or an " instinct " . On the other hand, I can not imagine how I would feel if I had the gut feeling to go and ignored it, and lost Jonas. It still gives me chills to think of it. The reason your letter really touched my heart is that Jonas has severe oral and tactile defensiveness and has since birth. I really understand what you are saying when you say how do you get a child with sensory issues to eat this or that! My goodness! The therapy that Jonas has had since birth to stimulate him has brought him a long way, but I will be darned if I have any idea how I would get salmon into him twice a week. Besides who is paying for all that salmon? YIKES! Why is that any different or better than the omega 3 supplement? Any doctor who would tell you that your other child is not welcome to come to the appointments is also pretty brazen if you ask me! Post a bulletin at the church. lovely to say, but is that what she would do for child care? It takes awhile to build a good trusting relationship at church or anywhere that would allow you to feel confident to leave your child with someone. This woman shows a complete lack of genuine concern or bedside manner. I hope you have already ditched her. I worked for a doctor for 10 years. If there was a sibling there and it was a bother to the doctor or an intrusion in some way to an exam or procedure, I would take the child out to my office for a sticker or lollipop if Mommy allowed. We would get out a few sheets of paper and let the child sit at my desk and draw or color. It was never a big deal, and under no circumstances would Doc have ever asked a parent to get a sitter for their other child! Nor would he have made the parent feel badly like this woman did. UUGH! Perhaps this woman should be somewhere milking venomous snakes instead of treating children! I could offer you many ideas for desensitizing 's gag reflex which is so strong. Jonas would throw up trying to eat jello, tapioca pudding, a tiny bit of cookie, stage three baby foods, you name it! He is the KING of yogurt still, but he is eating all of the above now and much more. He is drinking better too, and we still work on getting him to actually come to a point of eating regular food like we are having for supper. I feel like we will be dealing with this until forever, but thankfully we have made some real progress. His tactile defensiveness is pretty much overcome now. He used to hate to be in his bare feet in grass, would not touch textured things, etc. He plays in sand and dirt now! I do not always get a chance to keep up well with the group anymore. I became a member here before Jonas was a year old, but he is SOO busy now that I don't have much peace time to do this. It is terribly late and all are asleep now or I could not be on here at this moment. So, if you want to e-mail me at the home e-mail address I will respond very quickly to you. I would love to help you in any way if I can. I am not completely clear on what all of s issues are because I had 1,000 e-mails on here when I signed on this evening! I am deleting many without reading, so I am out of the loop, but please contact me here if you wish and I will help you all I can.. walker359@... Blessings, Barb Martz Mom to Jonas (5 MDS) & 11 Please Help! This is one of those times when I wish I was physically talking to this group and not just typing in my thoughts. I've just returned from the neurologist and I am SO frustrated and SO upset and Gosh. I just don't think any parent should leave a neurologist's office in tears, not because the test results were bad, but because you're so frustrated with the physician! We are still diagnosing, seems to be taking F.O.R.E.V.E.R. We've been diagnosing since February. Our first chromosomal assay came back negative. We asked about the other assay tests, she said our insurance wouldn't pay for it. Today she ordered a specific MDS assay. Why the <BLEEP> couldn't she have ordered it three months ago? What changed? Then she says that the omega-3 supplements I'm using aren't good so I should feed my son grilled salmon twice a week. OK. Tell me how to get a child with sensory issues to eat salmon twice a week. Then she tells me we're just going to do ritalin and see how it goes from there. I had at least three other concerns that went unaddressed because she wants to see how the ritalin affects him first. Then she tells me to get rid of ALL white sugared foods and all processed foods and only feed him fresh fruit and veggies, no juice either because fresh fruit is better. Again, how do you get a child with sensory issues to eat pineapple? Or oranges? Or anything?!?! hello? Do ANY of your kids eat carrots?!?! Then she tells me not to bring my two year old to the appointments. I tell her there is no one else to watch her. She tells me to post a bulletin at church saying I need help and to get her into mom's day out programs. I know like five people at church and they work during the day and I can just barely scrape money together to keep food on the table and buy gas and hello!? Like I can afford mom's day out. She didn't address my son personally. She asked me the name of the other neurologist I'm seeing. I told her, you're the only neurologist I've EVER seen. She told me that the reason he has to urinate every time he gets overstimulated is because he's not intellectually smart enough to go when he should. If that's the case, how come he's not in diapers still? So she said the school would just have to figure that out then when he says he has to go at inopportune times. I told her he can remember cognitive things today and not tomorrow. She said we had to " wait and see " after he's on ritalin. But then she said not all kids respond to ritalin. I could go on, but right now I can't type because I can't see the words through my tears. All in favor of me switching neurologists, raise your hands.. er, type a response. Please help. If you live in the GA area, can I call you? I could really use a friend right now. Jennie Jessie (6), (5 - MDS?), Maren (2) Quote Link to comment Share on other sites More sharing options...
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