Could this be PANDAS ?

[searching]

Hi, I am new to this I am looking for answers. My son has developed some major tics and changed his personality overnight

[searching]

Hi, I am new to this I am looking for answers. My son has developed some major tics and changed his personality overnight

My son is 16 and has Down's Syndrome. He got sick with a virus. The virus affected his muscles and made him dizzy. His personality changed. This happened on New Year's day. He has had an MRI, EEG, numerous blood tests, and also a strep test. All the tests came back normal. I was told by the neurologist that he was psycotic. And also the pediatrician. I was refered to a phycologist. My son is now on Inveg 3mg and Zoloft. I do not believe the diagnosis. His personality changed instantly. I believe that because he can not speak for him self he is being written off. One thing that led me to this site is one of the many pediatricians that we have seen said that she noticed he was having alot of tics. I then looked up tics on the web and found this site. Thank you for being here and helping others. The thing is alot of his symptoms match PANDAS. The only one that does not match is that the strep test came back negative. Is it posible that other viruses could also cause PANDAS? He did have a virus when his personality changed. Now that it has been 3 months, he is getting better. He is talking more and is doing things more for himself. Please help me figure this out I feel alone. Even the pediatrician that has seen him since he was 3 isn't much help. His only reply to the problem was that yes, my son has gone through quite a personality change, but didn't I know that having Down's puts him at a high risk for dementia? My son has never taken any medications before. He was high functioning. I do not believe he just became psycotic in the blink of an eye. Thank You for taking the time to read this. I hope that someone can help me.

[bronxmom2]

Hi searching,

It would not have to be strep to trigger the behavior change-- trying looking up PITAND. I'm not sure what that stands for, but I know the original researchers into this believed it could be triggered by any illness, even a virus.

 

Good luck.

[searching]

Hi searching,

It would not have to be strep to trigger the behavior change-- trying looking up PITAND. I'm not sure what that stands for, but I know the original researchers into this believed it could be triggered by any illness, even a virus.

 

Good luck.

Thank You! I looked up PITAND and was able to find out more information. We have an appointment with the neurologist tommorrow. My son meets all of the criteria for PANDAS except I am unsure of the strep since his test was negative. I am so thankful for this site, and your kindness. I asked the Lord to point me in the right direction so I could help my son and it does not seem a coincidence to me that I found this! Matthew 21:22

[EAMom]

Hi and welcome...

 

I don't know if I would call what your son went through as PANDAS per se (mainly b/c I assume he is post puberty at 16 and PANDAS, by definition has an onset before puberty)...not to say he couldn't have had an initial episode before puberty (milder undiagnosed ...could be ocd, tics, anxiety, urinary frequency, adhd...).

 

Yes, do look up PITAND...it is also possible that strep (undiagnosed) was the initial trigger/start of PANDAS...and a virus has cause a 2nd more severe episode. My PANDAS dd has reacted to fifth's dz (a virus) in addition to strep. Others on this forum have had PANDAS kids react to viruses as well.

 

If everything did indeed all start post puberty...this link talks about a possible adult/adolescent variant of PANDAS (at the bottom of the page). http://www.webpediatrics.com/pandasclinicalcases.html

 

It is also possible this is truly post-puberty and truly not strep related...

 

Viral infections can also trigger immune-mediated disease of the brain...for example, there is ADEM ...here's a link. http://en.wikipedia.org/wiki/Acute_dissemi...cephalomyelitis

 

Has your son been tested for Lyme dz??...that can cause neuropsychiatric symtpms as well.

 

I don't know what Inveg is? Do be careful about psych. drugs (assuming your son is PANDAS or PANDAS-like) as PANDAS kids can be very sensitive to psych. drugs (some react very badly to them)....can you tell if they are helping?

 

Many PANDAS parents find that Ibuprofin helps with symptoms (maybe 20%...can help with mood/sleep etc). I think b/c this decreases inflammation in the brain. Ibuprofen has also been shown to help prevent dementia (I don't know much about the type of dementia in Down's though) http://www.webwire.com/ViewPressRel.asp?aId=64868 ....something that might be worth trying though?

 

What are your son's symptoms?? ...I know you mentioned tics..any ocd, separation anxiety, tantrums, moody, defiance, urinary frequency, trouble sleeping, anorexia etc.?

 

I would also consider starting your son on a good quality fish oil (omega 3's, dha...help with brain repair). I know some of the folks on the tourettes board find fish oil makes the tics worse, in which case you should switch to a veggie omega 3. Fish oil is supposed to lower one's risk of dementia as well.

[peglem]

So sorry to hear what your son and you are going through. My daughter is autistic and nonverbal- I know when something is wrong, but most doctors don't know what her "normal" is so jsut attribute problems to her condition. It makes me feel so horrible- I know if the same thing happened to a typical child they'd be trying to figure out what happened. Although, even typical children with PANDAS are frequently dismissed as mentally ill. I was just wondering if your son was swabbed for a strep culture when he was sick in January. I'm asking because many of our kids do not present with typical strep symptoms and sometimes doctors will assume its a virus w/o actually checking. Then they try to check later by doing a blood test for titers- but it is not at all uncommon for PANDAS kids to have low titers, even though they've had a recent srep infection.

[EAMom]

Yes, I totally agree with peglem about the swab. If they didn't do one (or even if they did), I would do one now (do another even if they did one in Jan). I would also insist on a 48-72 hour if the rapid is negative...sometimes the rapid is neg but the 48 hour culture picks it up.

[EAMom]

Hi searching...I ran accross this online. Maybe it has some helpful info. for you? http://www.down-syndrome.org/reviews/2096/