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cwmom

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Posts posted by cwmom

  1. Thanks for sharing your story!

     

    I feel like we have similar kids. My son too plays travel sports (baseball and basketball)

    thank god because when he was in the worst of the PANDAS in 2008 basically

    fits of panic, anorexia, severe OCD the only thing he could do was play baseball.

    He couldn't interact with his team mates but he played. He was fine for 2 years (except for TICs after flu

    last winter) But this fall bad FLARE after virus - severe anxiety finally getting better.

    We are in the process of trying to get IVIG (denied x2 despite low IGG IGA...)

    I think think of this illness as a chronic condition that flares and remits but it is so nice to hear happy stories!

  2. Absolutely!!!!!

    My 13yo son has been a trooper. His guidance counselor does not see any of what we describe. At home he can be anxious , moody, irritable, sullen, quiet voice....

     

    She states He is even a bit of a class clown during the day. He is pretty popular.

    But when that bus pulls up and the pupils dilate I know it can be a rough afternoon. What seems to work for our son is to have a friend over in the afternoon

    he plays video games and basketball all in an effort to distract himself. He has had times where even with friends he will still become quiet and anxious ( the sign that the party is over time for friends to go) All in all I am so impressed with his tenacity but this flare has been going on since the fall and he is getting more frustrated and tired with the whole ordeal.

     

    btw, he is failing math at the moment but honestly we are just happy he is able to even go to school!

  3. Hi - I am so sorry. We also find that untreated episodes begin to wane around week 12-14 if we don't have a second exposure. It is my personal terror that it would ever come back. We also had a 3 year gap between episodes, and she was not on preventative abx during that time.

     

    I think the recommendation to go to one of the top PANDAS docs and get a plan established for the future is right on. It takes so long to get appointments, and local docs are often so uneducated, that I know how very easy it is for 10 weeks to fly by with no help or support. That just breaks my heart for both of you.

     

    On a practical level, we learned that cytokines are lowest in the afternoon & evening. So before we did homework in an exacerbation, we'd give a dose of Motrin right after school, then take a 30 minute break. After 30 minutes, she was able to concentrate and process what she was doing much better.

     

    We have found that having ERP therapy as a tool to manage during an exacerbation is a positive. It's hard to learn unless you have some residual OCD, so this might be a good time to have him learn the tools so that he has that training should this (God forbid) happen again. Also, I would suggest that you consider some sort of counseling for yourself, when you have time. This is such an awful disease, and it is so random on when it attacks, that it leaves many of us with a constant feeling of panic, fear or failure. This is horribly unfair, as the parents fighting this disease are on the forefront of a breakthough in fighting mental illness - we are the leaders for the future. But it's really hard to feel that way when your child is in pain or torment. So finding some support for yourself can be critical - grief counseling is a good option. Personally, I found that I needed support for both the decisions I was having to make, often against medical advice, and for the terror I was living everyday in our home.

  4. Hello to all,

     

    It has been a long time since I have posted on this site. My son had an extreme case of PANDAS in the summer of 08.

    He recovered completely (on prophylactic abx/tonsillectomy) ( Except for episode of tics when he had influenza A last winter)

     

    September 2010-

    Sudden onset obsessive thoughts/anxiety/ HUGE DILATED PUPILS just wasn't himself- we knew right away, but this time strep/ASO/AntiDNAse B all normal.

    last time he had classic rise in ASO...

     

    He had a virus trigger this episode (sore throat /diarrhea..) The problem has been that no one in the medical community wants to treat him. Neurology

    wants him to see psychiatry, Rheumatology "has nothing to offer" since IVIG denied. Our poor PCP is trying.

    IVIG was rx'd but our insurance denied x2. We were offered SSRIs and Klonopin and we used it- had to had no other options.

     

    It has been about 10 weeks and I think he is turning the corner (sense of humor coming back) he was able to go to school throughout and

    maintain friendships.... but grades have plummeted. His teachers are very kind but I am sure they do not know what to do with this type

    of learning issue. On low dose SSRI off klonopin. I will continue the SSRI because perhaps it is helping- It is certainly not hurting him at this point.

     

     

    It is funny after we went through this in 08 I promised him and myself that we would never be in medical limbo again and yet here we are

  5. Hi,

    Just for clarification this article is about my son- I was happy it was published because I feel like every bit of public exposure will help.

    The main point that was missed in the piece was that my son is under the care of a rheumatologist- Neurology felt exactly the way one of the responders described. " that he fit the criteria for pandas but prophylactic abx are not in his opinion indicated (based on the literature)

     

    I am not sure abut the ant inflammatory properties of antibiotics- What I do think antibiotics do are PREVENT future infection.

     

    How I view PANDAS is that it is an inflammatory process triggered by an immune response directed at the basal ganglia with resulting inflammation) Resolution depends on different factors ( # of previous infections,strain of bacteria in community, genetics, chronicity of exposure....) that is why I think some kids recover quicker some need alternate antibiotics if their particular strain is more resistant to pcn or amox.. because all immune systems are not created equally. Which may explain why some kids require IVIG or plasmapharesis....

     

    I would live to see more research into these factors so that a decision tree algorythim can be developed for primary care clinicians

  6. Do you monitor their titers over time? I guess this would be the only way to try to track.and trend over time. If the PANDAS was due to strep then you should see a rise in titers several weeks later ( no matter where the source of the strep was) Dr Fuhlbrige is an advocate of monitoring titers over time ( at the same lab for consistency) and prophylactic antibiotics for those that meet criteria -- he likened this disease to Rheumatic fever and spoke at length of not even missing one dose of the antibiotic because as with RF you are left susceptible.

     

    I think if anything he is giving credibility to this disease because he comes at it from an unbiased perspective -- I think Rheumatology is the one group in medicine that gets it.

    unfortunately the research has not caught up with what we as parents already know. I can't figure out why I have not found more from Dr. K in the literature since he seems to see a lot of patients.

  7. just to be clear -- I don't think the antibiotics had anythig to do with his clinical improvement -- I think it was time and resolution of the brain inflammation.

    What I think the antibiotics do is PREVENT further strep starting the whole process again. he is on 250mg bid ( he weighs about 68lbs) We did miss a dose this winter he went to a sleepover

    and he started having facial tics his titers did go up weeks later as well ( although not dramatically) the tics disappeared and never returned and we never miss a dose now.

    I hear you about struggling--- I am a fan of never upsetting the apple cart when you find something that works

  8. Hi Michele,

    Dr Fuhlbrigge is a Rheumatologist ( an expert in Autoimmune diseases) Our son was so severely panic stricken about medications ( or any chemical for that matter) that it took about 6 weeks into the illness to even get that started. We didn't get to Dr Fuhlbrigge until after that-- at this point his ASO titters were higher ( rising titer) unfortunately no one ever throat cultured him at onset of illness- ( even though he had a sore throat, headache and vomiting) The psych sx were just so severe that it clouded the diagnosis. He did a course of keflex initially when the titers were high ( we had thought he was penicillin allergic) he isn't .

    When we saw Dr Fuhlbrigge he gave us the option of monthly IM penicillin or twice a day amoxicillin 250mg-- our son chose the oral ( no surprise)

    He has been symptom free ( except for a week of facial tics this winter) no more OCD at all

    At his worst his emotions were all over the place angry crying..... NOT my easygoing funny child

    Although we no longer need to see the psychiatrist i keep in touch via email and sent him the link asking him to consider writing this case up with Dr F.

    Good luck

  9. I thought the article was not dismissive of PANDAS but rather supportive of the need for further research.

    A couple of things-- Dr. Fuhlbrigge is my son's doctor. He placed my son on prophylactic antibiotics for presumed PANDAS last September. Our appointments with him are always 2-3 hours. He is thorough and compassionate. BUT most importantly he knows the literature inside and out and is great at explaining his views on it. He knows it is controversial in the general medical community but he is willing to look at the big picture and give his impression based on the childs symptoms as well as the scientific body of work.

     

    My son had the most severe OCD imaginable along with signifigant weight loss ( due to contamination fears) Our psychiatrist was an extremely important team member not only for out son but he helped us deal with those issues.

    He was placed on celexa ( took him weeks o even take it due to contamination fears) his symptoms disappeared ( whether due to time, or antibiotics, or tonsillectomy we did not care we just did not want to upset the apple cart in any way, so with the guidance of the psychiatrist we weaned the celexa over a couple of months. He no longer has any psychiatry involvement and we see Dr Fuhlbrigge in june--

    My preference will be to keep him on the abx for at least another year ( until he is closer to 13)

     

    FYI Dr Torres (Neurologist at Boston Children's does not believe in prophylactic antibiotics)

     

    I guess my send home message is you know your child best you will meet may providers with differing opinions ( even within the same institution) I would be open to anyone who wants to help you move forward and deal with all of the horrible aspects of this illness and use everyones expertise to your child's benefit.

  10. I thought the article was not dismissive of PANDAS but rather supportive of the need for further research.

    A couple of things-- Dr. Fuhlbrigge is my son's doctor. He placed my son on prophylactic antibiotics for presumed PANDAS last September. Our appointments with him are always 2-3 hours. He is thorough and compassionate. BUT most importantly he knows the literature inside and out and is great at explaining his views on it. He knows it is controversial in the general medical community but he is willing to look at the big picture and give his impression based on the childs symptoms as well as the scientific body of work.

     

    My son had the most severe OCD imaginable along with signifigant weight loss ( due to contamination fears) Our psychiatrist was an extremely important team member not only for out son but he helped us deal with those issues.

    He was placed on celexa ( took him weeks o even take it due to contamination fears) his symptoms disappeared ( whether due to time, or antibiotics, or tonsillectomy we did not care we just did not want to upset the apple cart in any way, so with the guidance of the psychiatrist we weaned the celexa over a couple of months. He no longer has any psychiatry involvement and we see Dr Fuhlbrigge in june--

    My preference will be to keep him on the abx for at least another year ( until he is closer to 13)

     

    FYI Dr Torres (Neurologist at Boston Children's does not believe in prophylactic antibiotics)

     

    I guess my send home message is you know your child best you will meet may providers with differing opinions ( even within the same institution) I would be open to anyone who wants to help you move forward and deal with all of the horrible aspects of this illness and use everyones expertise to your child's benefit.

  11. I am actually a Pediatric Nurse Practitioner and chose tonsillectomy and adenoidectomy for my child. The ORL surgeon we sought ( because he had experience with it) has done about a dozen T&A's for PANDAS kids and notes improvements in all-- to varying degrees. I have found with PANDAS in general sometimes you have to weigh the risks and benefits--

    I feel for my childs case it was very worthwile however I realize that it may not be for everyone

    good luck!

  12. Have any you noticed your kids having any funny hand movements .

     

    My son had almost continuous piano playing like movements when his illness was at its worst but they went away. and recently returned ( at a much lesser level)

     

    Otherwise he is fine. His OCD is completely gone/ I have posted his labs in a separate post.

    Thanks!

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