Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 Dear List, Today (following days of phone tag), I finally spoke with a staff member of Dr. Swedo's office at NIMH (PANDAS group). After giving her 's history, she said she'd like to present to the team on Thursday for possible inclusion in their research. Has anyone on the list participated? It involves a substantial time commitment (travel back and forth to the DC area), and is very intrusive for (plasma exchange). They are in the phase of their research now where participants have a 50-50 chance of getting a placebo instead of the actual treatment. A month later, you return and the " blind " is broken. If the child received the placebo, and still seems to need treatment, it can be done again, with the real thing. The treatment involves sedating the child, putting a line in her neck, and separating the plasma for 2 to 3 hours. This happens every other day for ten days. She said there's no pain, but sometimes vomitting and headaches (which they premedicate for). She also said I need to be more vigilant about Strep infection.... when the OCD symptoms increase, etc... to get a culture. Even get a baseline. So, I was able to get into our pediatrician's office tonight. I filled him in on the diagnosis and my contact with NIMH. He cooperated with the culture request, but made me feel like an idiot. He was questionning everything and every decision (even considering the NIMH study) and telling me things that anyone who's read even a Reader's Digest article on OCD would know. This is the first time 's been to the office since the OCD diagnosis in June. And this is the first time since the diagnosis that anyone has been anything less than supportive. I'm sure there's more of that to look forward to, I just wish it hadn't come at a time when we have to make a fairly quick and serious decision. Thanks for the opportunity to vent a little.... any advice on handling pediatricians, and any connection with someone who's been through this study would be greatly appreciated. Rae Anne (Ohio) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Hi Rae Anne: You are doing a wonderful job of checking out PANDAS for ! Please keep us posted on your progress at NIMH. re: pediatricians, I would think it all depends. I really appreciate my kids' pediatrician but frankly she has been completely useless for Steve's OCD. Last time I saw her I took him in for an ear infection from a cold and she reminded him to wash his hands well to avoid germs! I just gently reminded her that he has a bit of a problem with washing his hands due to his OCD. There are probably parents on the list who have fairly knowledgeable pediatricians. I read something recently on the Internet about how pediatricians are starting to realize the importance of increased knowledge about anxiety disorders amd other mental disorders in children and they are developing a sub-speciality in pediatrics to ensure that new pediatricians have this important knowledge. I understand your concern about the invasive techniques that is facing. It is families like yours who are at the cutting edge of research into NBDs and this research is essential for progress to continue for those suffering from OCD and other disorders. Our family has participated in three research studies so far about OCD and I would be willing to do more if it would help. Steve had to give a blood sample - no easy task for a contamination OCDer - and my veins are shot from chemotherapy but we went for it anyway. Take care, aloha, Kathy (Ha) kathyh@... >From: RaeSeay@... > >Dear List, >Today (following days of phone tag), I finally spoke with a staff member of >Dr. Swedo's office at NIMH (PANDAS group). After giving her 's history, >she said she'd like to present to the team on Thursday for possible >inclusion in their research. Has anyone on the list participated? It >involves a substantial time commitment (travel back and forth to the DC >area), and is very intrusive for (plasma exchange). They are in the >phase of their research now where participants have a 50-50 chance of getting >a placebo instead of the actual treatment. A month later, you return and the > " blind " is broken. If the child received the placebo, and still seems to >need treatment, it can be done again, with the real thing. The treatment >involves sedating the child, putting a line in her neck, and separating the >plasma for 2 to 3 hours. This happens every other day for ten days. She >said there's no pain, but sometimes vomitting and headaches (which they >premedicate for). She also said I need to be more vigilant about Strep >infection.... when the OCD symptoms increase, etc... to get a culture. Even >get a baseline. So, I was able to get into our pediatrician's office >tonight. I filled him in on the diagnosis and my contact with NIMH. He >cooperated with the culture request, but made me feel like an idiot. He was >questionning everything and every decision (even considering the NIMH study) >and telling me things that anyone who's read even a Reader's Digest article >on OCD would know. This is the first time 's been to the office since >the OCD diagnosis in June. And this is the first time since the diagnosis >that anyone has been anything less than supportive. I'm sure there's more of >that to look forward to, I just wish it hadn't come at a time when we have to >make a fairly quick and serious decision. > >Thanks for the opportunity to vent a little.... any advice on handling >pediatricians, and any connection with someone who's been through this study >would be greatly appreciated. > >Rae Anne (Ohio) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Kathy, I just had to make a comment after reading your post(re- pediatricians). s allergist was instrumental in getting help for his depression. He learned about 's OCD,etc. The next time we go to see him, he takes 's hands in his and holds them up and shouts " my god what's wrong with your hands! I reminded him about the OCD, and again in a loud laugh shouts " my god, Looks like you have washed your skin right off!! " I really felt so bad for . Thank goodness we don't have to go back there again. Take Care Kathy and everyone! mary Kathy Hammes wrote: > From: kathyh@... (Kathy Hammes) > > Hi Rae Anne: > > You are doing a wonderful job of checking out PANDAS for ! Please > keep us posted on your progress at NIMH. > > re: pediatricians, I would think it all depends. I really appreciate my > kids' pediatrician but frankly she has been completely useless for Steve's > OCD. Last time I saw her I took him in for an ear infection from a cold > and she reminded him to wash his hands well to avoid germs! I just gently > reminded her that he has a bit of a problem with washing his hands due to > his OCD. > > There are probably parents on the list who have fairly knowledgeable > pediatricians. I read something recently on the Internet about how > pediatricians are starting to realize the importance of increased knowledge > about anxiety disorders amd other mental disorders in children and they are > developing a sub-speciality in pediatrics to ensure that new pediatricians > have this important knowledge. > > I understand your concern about the invasive techniques that is > facing. It is families like yours who are at the cutting edge of research > into NBDs and this research is essential for progress to continue for those > suffering from OCD and other disorders. Our family has participated in > three research studies so far about OCD and I would be willing to do more > if it would help. Steve had to give a blood sample - no easy task for a > contamination OCDer - and my veins are shot from chemotherapy but we went > for it anyway. > > Take care, aloha, Kathy (Ha) > kathyh@... > > >From: RaeSeay@... > > > >Dear List, > >Today (following days of phone tag), I finally spoke with a staff member of > >Dr. Swedo's office at NIMH (PANDAS group). After giving her 's history, > >she said she'd like to present to the team on Thursday for possible > >inclusion in their research. Has anyone on the list participated? It > >involves a substantial time commitment (travel back and forth to the DC > >area), and is very intrusive for (plasma exchange). They are in the > >phase of their research now where participants have a 50-50 chance of getting > >a placebo instead of the actual treatment. A month later, you return and the > > " blind " is broken. If the child received the placebo, and still seems to > >need treatment, it can be done again, with the real thing. The treatment > >involves sedating the child, putting a line in her neck, and separating the > >plasma for 2 to 3 hours. This happens every other day for ten days. She > >said there's no pain, but sometimes vomitting and headaches (which they > >premedicate for). She also said I need to be more vigilant about Strep > >infection.... when the OCD symptoms increase, etc... to get a culture. Even > >get a baseline. So, I was able to get into our pediatrician's office > >tonight. I filled him in on the diagnosis and my contact with NIMH. He > >cooperated with the culture request, but made me feel like an idiot. He was > >questionning everything and every decision (even considering the NIMH study) > >and telling me things that anyone who's read even a Reader's Digest article > >on OCD would know. This is the first time 's been to the office since > >the OCD diagnosis in June. And this is the first time since the diagnosis > >that anyone has been anything less than supportive. I'm sure there's more of > >that to look forward to, I just wish it hadn't come at a time when we have to > >make a fairly quick and serious decision. > > > >Thanks for the opportunity to vent a little.... any advice on handling > >pediatricians, and any connection with someone who's been through this study > >would be greatly appreciated. > > > >Rae Anne (Ohio) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 In a message dated 7/12/99 11:40:46 PM Pacific Daylight Time, maryth3@... writes: << I just had to make a comment after reading your post(re- pediatricians). s allergist was instrumental in getting help for his depression. He learned about 's OCD,etc. The next time we go to see him, he takes 's hands in his and holds them up and shouts " my god what's wrong with your hands! I reminded him about the OCD, and again in a loud laugh shouts " my god, Looks like you have washed your skin right off!! " I really felt so bad for . Thank goodness we don't have to go back there again. >> Talk about insensitive ! We had a similar experience. My daughter suffers from trichotillomania (compulsive hair pulling) especially her eyelashes. Her pediatrician had never heard of it, and didn't care to learn anything about it. I brought her in for her yearly checkup, and as he's examining her he exclaims " Wow!! She really DID pull out all her eyelashes!! You know she really shouldn't do that. " D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Geeeeeeeeesssssssseeeee! Oh how insitive. mary CGD219@... wrote: > From: CGD219@... > > In a message dated 7/12/99 11:40:46 PM Pacific Daylight Time, > maryth3@... writes: > > << I just had to make a comment after reading your post(re- > pediatricians). s allergist was instrumental in getting > help for his depression. He learned about 's OCD,etc. > The next time we go to see him, he takes 's hands in his > and holds them up and shouts " my god what's wrong with > your hands! I reminded him about the OCD, and again in a > loud laugh shouts " my god, Looks like you have washed your > skin right off!! " I really felt so bad for . Thank goodness > we don't have to go back there again. > >> > Talk about insensitive ! We had a similar experience. My daughter suffers > from trichotillomania (compulsive hair pulling) especially her eyelashes. Her > pediatrician had never heard of it, and didn't care to learn anything about > it. I brought her in for her yearly checkup, and as he's examining her he > exclaims " Wow!! She really DID pull out all her eyelashes!! You know she > really shouldn't do that. " > > D > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 HI : I hope 's handwashing is more manageable right now. It is hard for our kids when their rituals are recognized right out there, but it does help with their motivation to stop I guess. take care, aloha, Kathy (Ha) kathyh@... At 01:40 AM 7/13/99 -0500, you wrote: >From: <maryth3@...> > >Kathy, >I just had to make a comment after reading your post(re- >pediatricians). s allergist was instrumental in getting >help for his depression. He learned about 's OCD,etc. >The next time we go to see him, he takes 's hands in his >and holds them up and shouts " my god what's wrong with >your hands! I reminded him about the OCD, and again in a >loud laugh shouts " my god, Looks like you have washed your >skin right off!! " I really felt so bad for . Thank goodness >we don't have to go back there again. > >Take Care Kathy and everyone! >mary > > > >Kathy Hammes wrote: > >> From: kathyh@... (Kathy Hammes) >> >> Hi Rae Anne: >> >> You are doing a wonderful job of checking out PANDAS for ! Please >> keep us posted on your progress at NIMH. >> >> re: pediatricians, I would think it all depends. I really appreciate my >> kids' pediatrician but frankly she has been completely useless for Steve's >> OCD. Last time I saw her I took him in for an ear infection from a cold >> and she reminded him to wash his hands well to avoid germs! I just gently >> reminded her that he has a bit of a problem with washing his hands due to >> his OCD. >> >> There are probably parents on the list who have fairly knowledgeable >> pediatricians. I read something recently on the Internet about how >> pediatricians are starting to realize the importance of increased knowledge >> about anxiety disorders amd other mental disorders in children and they are >> developing a sub-speciality in pediatrics to ensure that new pediatricians >> have this important knowledge. >> >> I understand your concern about the invasive techniques that is >> facing. It is families like yours who are at the cutting edge of research >> into NBDs and this research is essential for progress to continue for those >> suffering from OCD and other disorders. Our family has participated in >> three research studies so far about OCD and I would be willing to do more >> if it would help. Steve had to give a blood sample - no easy task for a >> contamination OCDer - and my veins are shot from chemotherapy but we went >> for it anyway. >> >> Take care, aloha, Kathy (Ha) >> kathyh@... >> >> >From: RaeSeay@... >> > >> >Dear List, >> >Today (following days of phone tag), I finally spoke with a staff member of >> >Dr. Swedo's office at NIMH (PANDAS group). After giving her 's history, >> >she said she'd like to present to the team on Thursday for possible >> >inclusion in their research. Has anyone on the list participated? It >> >involves a substantial time commitment (travel back and forth to the DC >> >area), and is very intrusive for (plasma exchange). They are in the >> >phase of their research now where participants have a 50-50 chance of getting >> >a placebo instead of the actual treatment. A month later, you return and the >> > " blind " is broken. If the child received the placebo, and still seems to >> >need treatment, it can be done again, with the real thing. The treatment >> >involves sedating the child, putting a line in her neck, and separating the >> >plasma for 2 to 3 hours. This happens every other day for ten days. She >> >said there's no pain, but sometimes vomitting and headaches (which they >> >premedicate for). She also said I need to be more vigilant about Strep >> >infection.... when the OCD symptoms increase, etc... to get a culture. Even >> >get a baseline. So, I was able to get into our pediatrician's office >> >tonight. I filled him in on the diagnosis and my contact with NIMH. He >> >cooperated with the culture request, but made me feel like an idiot. He was >> >questionning everything and every decision (even considering the NIMH study) >> >and telling me things that anyone who's read even a Reader's Digest article >> >on OCD would know. This is the first time 's been to the office since >> >the OCD diagnosis in June. And this is the first time since the diagnosis >> >that anyone has been anything less than supportive. I'm sure there's more of >> >that to look forward to, I just wish it hadn't come at a time when we have to >> >make a fairly quick and serious decision. >> > >> >Thanks for the opportunity to vent a little.... any advice on handling >> >pediatricians, and any connection with someone who's been through this study >> >would be greatly appreciated. >> > >> >Rae Anne (Ohio) >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
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