P.a.n.d.a.s

[HeatherL]

Does anyone have experience with this disorder? I suspect that my older ds might have it. He's seeing a specialist on Monday and I'm trying not to freak out in the meantime.

 

[ratlenhum]

Yup, ruined our lives I hate to say. My son also has autism so it was a double whammy. He was doing amazing all around with his autism until PANDAS hit and now he's still a mess 3 years later.

PANDAS would be clear cut. Your child should have changed dramatically, practically over night like a switch went off.

What doctor are you seeing? What signs are you seeing in your child?

 

[HeatherL]

Well, he's on his second course of abx for strep. We have seen dramatic behavior changes in the last month, but I didn't connect it with the strep until a week or so ago. He already has aspergers, so we thought he was just going through a rough patch. His anxiety has increased a lot, he's displayed OCD type behaviors, and outwardly defiant behaviors. He's typically anxious, but until now it hasn't disrupted his life. He's having a horrible time in school. Last night when he was going to bed, his covers touched his lips. We had an hour of him rinsing out his mouth-he was convinced that he had swallowed some string and he made himself gag and spit up from all the worry. I have an appointment with our allergist/immunologist tomorrow, and an immunologist at Children's Hosp of Philadelphia on Thursday. I've been trying to read about it, but still not sure how to treat it. DOes he need to see a psychiatrist too? He sees a private psychologist anyway. I'm freaking out because we leave for Disney on May 4 and I have no idea what he's going to be like there. We have been saving for this trip forever, and the kids have been counting the days. I'm trying to take it one step at a time and not freak out.

 

[clanmcculloch]

My daughter doesn't have PANDAS. She does have Asperger Syndrome as well as some health issues that are seen somewhat frequently in kids on the ASD spectrum. What I've found is that when she gets Strep, she doesn't get the typical symptoms. Her worst symptom seems to be joint pains, but her anxiety and generally all of her ASD issues become much more pronounced. The joint pain goes away relatively quickly with antibiotics but the rest takes time. The strep has a couple times required more than one course of antibiotics which explained why the increased ASD issues didn't seem to go back to normal. Also, any time she's been on antibiotics she seems to have more obsessive compulsive issues. Knock on wood, she hasn't had strep in well over a year now but of course now we've got puberty to deal with so of course the moodiness and anxiety are back at record highs.

Any time she's sick, her ASD issues become more pronounced. Just like neuro-typical folks, ASD folks become cranky and irritable when sick and the ability to cope with ordinary things goes out the window. Unfortunately, ASD folks already have difficulty coping and a series of issues like OCD like behaviours so being sick compounds these issues and coping abilities.

You have an allergist/immunilogist? Does he already have allergies or immune system issues? If he has food allergies, has your pharmacist made sure there aren't any of his allergens in the antibiotics?

Have you asked the pharmacist if there are any potential mood side effects of the antibiotics?

 

[ratlenhum]

It could be PANDAS. My son also developed vocal tics and was an emotional wreck. Antibiotics will kill the strep but after a while it's not going to help. Staying on a 2x a week prophylactic dose will keep strep at bay if exposed.

You have to keep in mind that the problem at this point is not the strep itself but what the body is doing. The autoimmune issue with PANDAS is that the body for some reason now thinks the basal ganglia portion of the brain is a strep infection and is fighting it. Since the basil ganglia is always there it takes time for the immune reaction to calm down. It took us 3 1/2 years, months of oral antibiotics, intramuscular antibiotics, 16 months of IVIG and homeopathy (which was most effective) to get my son's titers to normal range.


IMO, don't worry about your Disney trip, and I say this from experience. When my son was diagnosed 3 1/2 years ago it was a very little known disorder. It's come a long way in recognition since then. We flew from NY to CA to see the one doctor in the country who was the man to see back then. We decided while we were out there we would attempt Disneyland and Knott's Berry Farm. We figured worse comes to worse, we'll never see any of those people again. The plane ride out was a horror, I thought they'd ground the plane and throw us off. At Disneyland he was amazing and probably because he was so overwhelmed in a positive way that we really enjoyed it. Other than his vocal tics and this dropping to his knees thing he started doing (quickly resolved by sticking him in a rental stroller) he was great.

One thing that SERIOUSLY helped with the OCD for my son was inositol. You can even google "inositol OCD" and see that studies prove it works. It is just a form of a B vitamin but for some reason it helps. If you want to try it I highly recommend making sure you buy it in pure form, either a powder (tasteless in drinks) or in caps with no other ingredients or additives so if he doesn't do well you know its from the inositol and not from one of the added ingredients. We buy the Kirkman brand from ourkidsasd.com. My son was about your son's age when we started using it. We use 6 grams a day now. The kirkman powder comes with a scoop and he gets 2 scoops 3x a day. I stick it in his juice in the morning and at dinner at home. For lunch at school I either put it in his thermos and when he takes a water bottle I unscrew the cap, put it in and shake it, and recap. It doesn't taste like anything so he won't know its there. I would start with 1 scoop 1x a day, then 1 scoop 2x, then 1 scoop 3x, then work up to 2 scoops 3x. It truly made a big difference for my son.

You can see a psychiatrist if you want but you have to remember this is a medical issue and if the psychiatrist prescribes meds to treat the behaviors caused by PANDAS you are putting a band aid on the problem.

http://www.latitudes.org/forums/index.php?showforum=17

lots of knowledgeable and supportive people there.

Also, make sure you are loading him up on probiotics while on antibiotics or you end up with a whole other set of issues. Make sure there is no S. Thermophilis in the probiotics. It is a strep strain, and while a beneficial one, many kids with PANDAS react negatively to it since the body is already confused about how to handle strep. Also, NO YOGURT!!! Yogurt, all brands, contain S.thermophilis as an "active culture." I did not know this and my son who had been casein free for a year had a yogurt when we were testing his allergies and all hell broke lose. It was not from the dairy but from the yogurt cultures.



Kerrie

 

[HeatherL]

Thanks so much for all of the information! I'm a little relieved that his reaction to strep is not atypical for kids with ASD, and that it may not be full blown PANDAS. I will definitely be doing more research before his appointment tomorrow night. Clanmcculloch: when your daughter gets strep, do you treat it with anything else other than abx? I'm glad you mentioned joint pain because he's been complaining that his legs hurt and it was worrying me. Ratlenhum: how was your son actually diagnosed with PANDAS? My son is allergic to nuts, eggs and dairy so no yogurt for him anyway. Thanks for the reminder about probiotics. I used to give them daily but ran out. The brand I like for him (dairy free) is sometimes hard to find. I will try the local health food store (again) tomorrow.
We do have an allergist/immunologist for seasonal and food allergies as well as asthma. He is on daily asthma meds already. THe dr. knows him and I well, and I figured she would be a good place to start. I made an appt. with an immunologist at Children's Hosp of Philadelphia in case I want or need a second opinion. We are only 20 minutes outside of Philly, and CHOP is one of the very best, so I hope to get good care there.
It's so hard because I know he can't help these behaviors. Today was a better day, but he's just not himself. He's having such a hard time in school too. As soon as he sees the dr. I will call a meeting at school to address it. He already has an IEP, but if this is an ongoing medical issue he will need more accomdations. Again, trying not to get too far ahead of myself or freaking out but also trying to be prepared.
Thanks again!

 

[ratlenhum]

My son was diagnosed based on symptoms that set in 6-8 weeks after strep which is the time frame for antibodies to kick in, strep titers, and a test called PANDAS Prolie which sadly is no lnger available. It tested for different strep antibodies and anti brain antibodies (D 8/17, myelin basic protein, tubulin and a few other I can't recall the name of right now). Every single number was elevated at least 400%.

 

[ratlenhum]

It s atypical for any child ASD or not. Most parents of typical kids write off symptoms as a phase unless it is severe. I think parents of ASD kids are just more in tune to changes like these and look mor for a reason for them because we are constantly evaluating our child's actions. That said, many ASD kids have screwed up immune systems and may be more prone to an autoimmune disorder, but there are just as many typical kids out there with PANDAS. My poor son was just recently diagnosed with his third autoimmune disorder, none related to the other.

 

[HeatherL]

The time frame for my ds is a little quicker. The first bout of strep was about 6 weeks ago, but the really bad behavioral symptoms have really been pronounced in the last 3 weeks or so. We found out 11 days ago that he had not beaten the strep with he started having nausea and low appetite (but no sore throat). I brought him back to the dr. and he had another postive throat culture. That's when I started connecting the strep to his behavior changes. We've really been noticing the OCD stuff a lot in the past week or so.

 

[clanmcculloch]

We just treat with abx. She seems to react badly to probiotics so we don't use them, though I've never heard that about S. Thermophilis so I'll have to take a look at the types we've tried to see if it was in them. I know I need to place an order with Kirkman Labs soon so I'll look through their GFCF probiotics to see if any of them are free of this particular strain. Interesting. I wonder if PB8 or the kids' Rhino version has that?

I'm not sure if my daughter's atypical presentation is so much an ASD type thing or more that she's already dealing with autoimmune issues and unusual presentations for health stuff. She does have the typical ASD issue of not really feeling all pain (she dislocated her elbow as a toddler and the only way we knew that something was wrong was because she wouldn't use that hand; she never told us she was in pain) so I suspect that's part of it which would be more ASD specific.

DD13's GI doctor specializes in treating autistic kids. According to some of the research he's read and some he's done himself, ASD kids with GI issues and food intollerances seem to respond well to adult doses of Singulair and Zyrtec. Singulair was doing well for DD13 when she was younger but then she started developing some agression issues so we took her off of it and the agression died down (it's an unfortunate side effect in some kids). Zyrtec seems to be working well. She was on Gastrocrom which is an allergy med specifically targetted to the GI tract but it's expensive and a pain to give and Zyrtec seems to be working just as well. Both are mast cell inhibitors. I'm mentioning all of this because of your son's specific list of issues. It's at least worth discussing with his doctors.

You know, I never should have said it's been a long time since we've dealt with strep. This weekend she's started getting all achy and sore, especially in her joints. She did have a sore throat a couple weeks ago but we wrote that off as post nasal drip since we all had colds around that time (when she's had strep in the past, there's always been a mild sore throat a couple weeks earlier but that's the extent of the sore throat). UGH!!! Of course she's also saying she's got a belly ache really low in her belly and she's feeling like she has to pee more than normal so maybe it's a UTI (she gets her fair share of these) so I should probably get her in to see her doctor to get tested for both. Sigh.....

 

[HeatherL]

Ugh! I hope it's not strep again for your dd. You know, my ds is usually on zyrtec for seasonal allergies in spring and fall. I had just started him back up on it when all of this anxiety, etc. got bad. I orginally connected the increase in these behaviors to possibly the zyrtec since anxiety is one of the more rare side effects. I spoke to the nurse at our allergist, who suggested we take him off of it until we see the dr as a precaution. That is one of the things on my list to talk about tonight. We tried singular a long time ago, but it gave ds diarrhea. I just bought some probiotics today and made sure it didn't have that strep strain in it. I hope to sneak it into his soy yogurt or smoothies asap!
I have a whole legal pad page full of questions/info for the dr. tonight.

 

[clanmcculloch]

Which version of Zyrtec are you using? The pills have lactose. The liquid is GFCF (not sure which food allergies you're dealing with but since you're doing soy yogurt I'm assuming milk) and the gel caps seem to be ok as well, at least all of us are doing fine on it.

Which brand of probiotics are you using?

 

[HeatherL]

I bought DDS junior probiotics. The appt. with our allergist was pretty much a bust. She said "well...I'll order bloodwork, but this is rare and I doubt we will see anything". And then she proceeded to say that she may refer us to psychiatry. For what? A bandaid in the form of an SSRI medication that won't actually solve the problem? So our appt. at CHOP (Children's Hosp of Philadelphia) is tomorrow. I'm hoping for a better outcome there.

 

[ratlenhum]

I hope to sneak it into his soy yogurt or

this almost 99.9% of the times will have s.thermophilis in it as well.

 

[HeatherL]

this almost 99.9% of the times will have s.thermophilis in it as well.

It doesn't...I checked!

 

[HeatherL]

We just got back from the dr. SO glad I went for a second opinion. She was so much more thorough than our regular allergiest-she spent a half an hour in the exam room with us. She took a detailed history and examined ds from head to toe. She doens't think it's PANDAS-he doesn't meet all the criteria. So that's a reliefe. And (knocking on every piece of wood I have) his behaviors have started in improve since the weekend. She feels that it was a horrible case of strep and this may be the way his body reacts. He is more sensitive to illness and sensory type things due to his aspergers, and is already prone to anxiety. She ordered blood work, including a strep titer, which we will repeat in 4-6 weeks to make sure it's going down. She also feels that if he gets one more infection, we should see an ENT to get tonsils/adenoids out. We saw an ENT for a consult last year because his tonsils are HUGE and his adenoids are enlarged as well. At that time, we elected to wait on the surgery since he wasn't prone to infections. Now that has changed. So we will keep close eye on it, and treat his seasonal allergies right now.
Thanks for all the input or advice.

 

[bookwormde]

It is always good to find a doctor who will take the time and has the knowledge to "do it right"

bookwormde

 

[clanmcculloch]

I'm so glad to hear that you've got a good doctor who will take the time with you and really listen and try to get answers. Way to go for following through!