thereishope
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Hm...I think they are all on PANDAS Network. If there is anything you need a link to, let me know.
THANK YOU so much for putting this together.
Are all these articles linked at pandasnetwork.org? Several of them I never saw!
This is such an inspiration to all of us, Vickie.
I hope I get to meet you in person some day~ what a great PANDAS advocate you are
Is there another PANDAS parent meeting in the works, by chance?
Maybe something coinciding with the OCD conference in Chicago next summer?
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For those in Chicago, it hit the Tribune too!
http://www.chicagotribune.com/health/la-he-ocd-strep-20111205,0,7586992.story?page=1
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Bumping this since the article technically just hit today on the LA Times.
This article was months in the making!
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Childhood disorder prompts study of infection link to mental illness
http://www.latimes.com/health/la-he-ocd-strep-20111205,0,1049449.story?page=1
PANDAS Network.org's take on the article (Diana was interviewed for the article)
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http://pandasnetwork.org/2011/12/ivig-study-needs-participants-asap/
It’s crunch time, everyone! We need every parent to step up to the plate and pass the word TODAY about the NIMH IVIG study.
PANDAS Network.org received notification that the NIMH needs only 3 more participants then they will be able to do an interim analysis of the progress of the study!
We know the determination of this community and the ability to network and communicate. If you know of any new onset cases (6 months into onset or less) and they fit the criteria of the IVIG study, tell them to contact the NIMH TODAY!
You do not have to pay to join the study. All travel expenses are covered.
CRITERIA REMINDER:
New onset cases. This means your child’s onset is 6 months or less at this point in time.
INCLUSION CRITERIA as noted on the Clincial Trial page:
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969
Male and female children 4-12 years of age.Presence of (Diagnostic and Statistical Manual of Mental Disorders Fourth Edition, Text Revision) DSM-IV TR OCD with or without a tic disorder. Moderate or greater severity of symptoms, with a score of greater than or equal to 20 on the Children’s Yale-Brown Obsessive-Compulsive Scale (CY-BOCS) and greater than or equal to 4 on the Clinical Global Impression Severity scale (CGI-S).
*The acute onset within the previous six months of symptoms in a child previously well, or the first acute recurrence within the previous six months, after a period of relatively complete remission of symptoms. The acuity of symptom onset/exacerbation is key and must be severe, dramatic in onset, and proceed from no/minimal symptoms to maximum severity within 24-48 hours.
*Symptom onset or first exacerbation temporally related to GAS infections, as documented by positive throat culture, exposure to documented GAS infection (in a close contact, such as a sibling sharing a bedroom), and/or documented two-fold rise in one or more anti-GAS antibody titers.
*Onset/exacerbation of OCD is accompanied by at least three of the following 7 clinical signs and symptoms. The acuity of the comorbid symptoms must be similar to the OCD symptoms and occur in the same time interval.
1.Markedly increased level of anxiety, particularly new onset of separation anxiety.
2.Emotional lability, irritability, aggressive behavior and/or personality change.
3.Sudden difficulties with concentration or learning.
4.Developmental regression (“baby-talk,” temper tantrums; behaviors atypical for actual chronological age).
5.Sleep disorder (insomnia, night terrors, refusal to sleep alone).
6.Handwriting deterioration or other sign of motoric dysfunction (including new onset of motor hyperactivity, or presence of choreiform finger movements).
7.Urinary frequency or increased urge to urinate; daytime or night-time secondary enuresis.
All other information can be found on the Clincial Trial Page.http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969
If you feel your child fits all criteria and you were dismissed as a possible participant, feel free to contact us at PANDAS Network at pandasnetwork@gmail.com. Tell us when you attempted to enroll, give us a brief history (following the criteria) and we’ll look at it. Again, only if you feel your child filled all the criteria and was passed up.
We really need to hit this milestone in the study and we are only 3 participants away from the NIMH being able to a interim analysis if the progress. Let do this!
If you read this post, share it!
Contact(s) for study:
Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
Fax: 301-480-9793
Electronic Mail:prpl@mail.cc.nih.gov
Or contact rachel.kuschner@yale.edu
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There may be a genetic factor to the autoimmune disorder, but it doesn't mean all children in the family will have it.
I have 3 kids. One is PANDAS. The other two have had strep and Mycoplasma Pneumonia with no associated PANDAS symptoms following infections. HOWEVER, that does not mean that I do not still worry. As stated in articles, I think one is Murphy's A Way Forward, it states that each child may have different thresholds for what their body can take before the autoimmune reaction finally activates. So, for that reason, I still worry.
You say your child that you thought was "non-PANDAS" is now having PANDAS symptoms? Well, it could be that the walking pneumonia was the the straw that broke the camel's back, but we also have to make sure there isn't another factor possibly causing the aggression and clinginess. Steroids can cause that and ceratin cough meds/allergy meds/decongestants can cause such behaviors. Did you chart when the symptoms started?
The bronchitis could still be the walking pneumonia. If a cough was present, that could take weeks to clear even if the bacteria was erradicated. If the doctor says the infection is still present, you can discuss another course of Azithro or try Biaxin. Biaxin is another antibiotic for Myco P that a decent portion of PANDAS/PITAND kids use. Obviously, any infection that is still present needs to be erradicated.
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agreed
Thanks so much for the great information.
My younger daughter still has many tics and some OCD behaviors, too. Her handwriting has deteriorated since June, and she does puzzling things like refusing to hold on to her paper with her free hand. She has some selective mutism and PDD-NOS, so it is sometimes hard to determine what her behaviors come down to.
I think its VERY possible, perhaps probable that the selective mutism and PDD-NOS are also symptoms of the same underlying problem that causes the tics and OCD, rather than separate conditions.
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Yes, there may be a genetic aspect to this autoimmune disorder. Not saying it is soley genetic, but it may play a role.
In a recent casual survey of some PANDAS families, 70% responded that BOTH autoimmune and/or severe strep-related illness was noted in family history.
Also,these reinforce the possibility of a genetic factor...
Autoimmune Disease in Moms Boosts Likelihood of Tics, OCD in Kids
Maternal history of autoimmune disease in children presenting with tics and/or obsessive-compulsive disorder.
http://www.ncbi.nlm.nih.gov/pubmed/20864184
I thought of another question. Do some people notice that this appears throughout several generations of a family? I am still open to the idea that this is Tourettes because my husband had similar experiences as a child (although his tics looked more like full blown seizures). However he has a number of autoimmune syndromes including celiac and psoriatic arthritis, which makes me wonder.
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Welcome. First, more than one child in a family can have PANDAS. Second, if more than one child is sick at the same time, then, yes, they could develop PANDAS at the same time.
IF it were PANDAS,it could be a few things. It could be that January, it was more than a cold. The background of strep is that it can appear in atypical symptoms, classic symptom or no physical symptoms at all. I am assuming no strep tests were run in January since at that time there was no concern about it?
It could be that if you saw OCD tendencies and/or tics prior to January and IF it were PANDAS, that the initial onset had occurred at an earlier time. Then the cold retriggered symptoms. With PANDAS/PITAND*, subsequent exacerbations can occur with other triggers as well.To further complicate things, other infections, such as walking pneumonia aka Mycoplasma Pneumonia, can be the original trigger/subsequent trigger in some kids too.
Now that you see that your daughter's symptoms improved with antibiotics, that would really urge me to look into the possibility of PANDAS more. What antibiotic was she given for the "fun" trial and what was she given for the sinus infection?
Now, look to your other child. Does she have tics and/or OCD tendencies still? I would test her for strep (even if no symptoms are present) AND I would tell my pediatrician that I would like to go on a trial of antibiotics as well (what your other daughter got for the sinus infection probably)so you can chart if there is any improvement in her too. Some people will also give short term Ibuprofen as that may take down enough inflammation to see temp improvement. However, that is just a band aid.
Will the antibiotic improvement be temporary....no set answer for that. Some PANDAS kids (IF it is PANDAS) will backslide when off antibiotics. Some, will continue to improve. The thing is even if they continue to improve, you cannot ignore that something triggered the symptoms. They can always come back and even worse if the child becomes ill with a trigger again. For that reason, a good portion of kids will stay on a prophylatic antibiotic.
*PITAND is when a different infection triggers the onset of symptoms. Technically PANDAS falls uner the umbrella of PITAND, but over the course of time it has just gotten more attention. Then there is PANS which will eventually be an overall name change to both PANDAS and PITAND. However, that official name change has not occured yet.
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I wish everyone a peaceful day tomorrow. Happy Thanksgiving!
Rx not working - Penicillin V
in PANS / PANDAS (Lyme included)
Posted · Edited by Vickie
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