kimballot

It sounds like you are doing great and are really on top of things. I have heard good things about dragonspeak, but we found it to be glitchy on our computer (the computer was not very new).... and it was a turn off for my son. I wish I would have perfected it myself first so he could have made a more successful transition to it. Your OT might find some information useful on the NY state OT association website at http://www.nysota.org/node/334 Keep us posted!

My son has refused the alpha smart since elementary school - which drives me crazy!! My son is older now and I am thinking more and more about having him use a smart pen for notetaking. Is anyone else using this? I don't think it will help with generating essays, but it should help with taking notes in class. Here's a video

Burnell - first off, I am so very sorry that your daughter is having a post-IVIG exacerbation. My son had a severe exacerbation after his IVIG as well, and we did not begin to see improvement until about 3 months post IVIG, and then improvement was gradual for the next 3 months. He is now 6 months Post IVIG and I can say that he is still not at his "best", but we are continuing to see improvement. The OCD and rituals are the residual problems for us, and we begin CBT next week - though not in Florida (due to scheduing). My son was evaluated in Florida a few weeks ago and the evaluation was excellent. I also recently learned about an inpatient unit at Rogers Memorial Hospital in Wisconsin. I believe it is the only adolescent inpatient unit for CBT/ERP for OCD. I looked into it briefly for my son. The have a 6-8 week wait list, and the length of stay is usually at least a month. BUT the program really looked excellent. It brought me comfort to know that there is SOMEPLACE he can go if he ever gets really bad... and I believe my insurance participates with them.... just something to keep in mind if Florida does not work out as you anticipated!

You might be able to find some nubby fidget toys that he can touch/ manipulate (if it is in the school plan) in place of the cowlick. Also, some OTs put rough-surfaced velcro under the student's chair or on the underside of the desk for the child to touch during class for touch input.... just a couple of ideas. I hope the OT can help you! do listen to Lucy Miller's podcast it was very good.

LOL... unfortunately... it is SO true. If our kids don't have OCD to start with, we give it to them... oh--- and best of luck next week with IVIG. Keep us posted on how it goes!

The book "the out of sync child" may help you to deal with sensory issues. (http://out-of-sync-child.com/). You can also request a consult from the school OT if it is interfering with school function (glue in art class? wearing shoes in school? Being close to other kids in line?). Lucy Miller recently spoke on blogtalk - coffee klatch, and it is podcasted here http://www.blogtalkradio.com/thecoffeeklatch/2011/07/28/dr-lucy-miller--the-sensory-processing-disorder-foundation Her organization, Sensory Processing Disorder Foundation, (http://www.sinetwork.org/) may have some ideas for you also. Also, the New York State OT Association has some PANDAS/PITAND information that may be helpful for home or school: http://www.nysota.org/node/334 Good luck! I remember that this was the reason my son stopped playing hockey in elementary school - he simply could NOT tolerate the uniform and the skates!

A few months ago I sat down and wrote a very long letter to the neurologist that told us 3 times over a 6 year period (age 6-12) that my son did not have PANDAS because he did not have strep throat and - even if it was PANDAS- he would not treat it any differently. Over those 6 years we stopped looking for signs of infection because we were told we were "looking for a needle in a haystack". We stopped seeking blood work and immune work ups. Finally, at age 12 when my son could barely walk due to joint pain and fatigue and he could not concentrate in school and kept falling asleep in class - the neurologist suggested an ssri. The neurologist actually refused to do blood work that was suggested by a PANDAS doc. We declined the SSRI and got the blood work ordered by another doc. My son had become immune deficient and had been fighting mycoplasma. We went to a PANDAS doc who ordered a CT scan and found a huge cyst in his sinus that had been brewing for over a year and was eroding the bone. His C3D levels were 8 times the upper limit because his immune system was in overload. His cam Kinase was 156. I am sorry - we CAN NOT treat this the same way you would treat simple short-lived tics or small bouts of anxiety. The neurologist ended up with a 6 page letter (really, nicely worded - all things considered!), several articles, and a bunch of my son's blood results - along with pictures of the sinus cyst- delivered to his office. I know he received them because he had to sign for them. I don't know if he ever read them. I can only hope he did and hope it has benefitted other children. I suggest that if any of us find a few moments we take the time to get in touch with former doctors who told us that our kids were fine and not to worry, to let them know the outcome and educate them a bit about PANDAS/PITAND

I also fear that doctors will think kids outgrow it and limit treatment. I have heard from several mainstream doctors that PANDAS is "self limiting" and that we should just use psych meds alone to alleviate symptoms until he outgrows it or overcomes an exacerbation. While I have no doubt that some children have had only one or two exacerbations, I don't think we want to send a message that this is a disorder that can be outgrown if left untreated. Furthermore I think we are coming to understand (as EA Mom has said) that oftentimes our kids DO NOT return to their pre-exacerbation baseline and there is a gradual loss of function with each exacerbation. I really think we need to hope for the best (that our own children will not continue to battle this for the rest of their lives), but prepare for the worst - by treating infections and autoimmune dysfunction aggressively and teaching our children how to recognize PANDAS symptoms to get biological help when needed, as well as using CBT to cope with remaining symptoms. Bees - this is not to discredit what you have said in any way. I think you are saying the same thing in saying that some children will not go on to continue to have exacerbations as adults. ... but recognizing that not all children will be so fortunate.

My son gets tics and cognitive fog after swimming in chlorine - not to mention his eyes are very red and his nose bleeds.

You have me literally laughing out loud! I don't know if there are long-term side effects either and I hope there are not. I don't think they could be any worse than the long-term side effects of ritalin, strattera, or SSRIs- all of which my son would need in substantial doses if he did not get sleep or if he spent the night worrying about someone breaking in and hurting his family. The idea that we may be making some neuroplastic changes is interesting, though, and I am wondering if I should try to switch him at some point to valerian root or 5 htp for a while... any thoughts?

I want to ditto LLMs idea about herxing and detox. My son had a horrible exacerbation after his first IVIG. I really did see a difference when we used charcoal regularly (which is difficult to do becuase it has to be 2 hours away from antibiotics and probiotics). WE also started B vitamins, which helped, and Coq 10, which helped - and all of these were recommended by the lyme doctor. FYI - we did do pretty exhaustive amounts of lyme and coinfection testing and he came up negative all around. Nonetheless - the supplements she suggested did help!

Ok... I need some help understanding how stem cells might help with PANDAS. What are you thinking?

Vicki- Thank you for sharing!

Have you done any cognitive behavioral therapy yet? I think we are at a point where we have achieved what we can from IVIG - we will continue to prevent illness and exacerbations, but we are now moving to more CBT to work with what we have. If we can keep him healthy, we will have a stable baseline and can move forward.

I don't know if it helps, but we started seeing positive changes around the 3rd IVIG (all wer 8 weeks apart). It has now been nearly 6 months since my son's first IVIG and he is doing very well. Not perfect - still have lots of work to do, but definitely on the right track, and at least I am hopeful that we can move forward (if we can keep him healthy!)

Lisa - thank you for updating us. How long has it been since your son't first HDIVIG?

Airial - I am so sorry that you are dealing with this. It is not fair for a little boy to be sick all the time. I wish I could give you solid answers about being more aggressive, but I really do not understand how you could be more aggressive. It sounds like you address illness very quickly. If he is not on prophylactic antibiotics then, yes, you should consider those and talk with the immunologist about that. It doesn't sound like there is any reason for steroids or IVIG if he is coming out of the exacerbation without a lengthy period of post-infectious autoimmune response. IVIG might help him to stay healthier if he were immune deficient, but even kids with IVIG get strep. In the end, I think for many of us "management" of a chronic disease is the best we can do - just like parents of children who are diabetic or asthmatic. The difference is that we do not have documented protocols to follow. It will be interesting to see if others have a different take on this. I do hope that he is feeling better soon and his fuzzy head goes away... and I hope that some day we can have well-documented protocols for parents to follow to manage their children's PANDAS so we are not constantly reinventing the wheel.

Alex - thank you for your excellent explanation of Cam Kinase and for these articles. I agree that if strep titers are high there is likely an infection somewhere... But here is my question - how do you know it is tonsils? I want to say that I am not opposed to tonsillectomy when needed - it put my own son in remission for about 4 years and I wish we'd done it sooner.... but I think you really need to have some clue that the tonsils are a problem. Also, if my son were having ANY surgery again I would request that he be put on very strong antibiotics for several weeks beforehand to reduce the risk of strep or other antigens being introduced into the blood. In retrospect, I think my son's first exacerbation was triggered by adenoidectomy at 18 months of age.

Thank you for posting! This is well written and very clear!

I don't think this is the new name for PANDAS. I believe that will be PANS (I think Dr. Cunningham said it was "pediatric acute neurologic syndrome" when she spoke at autism one). I think the post infectious cognitive idea spans several disorders, including PANDAS. From what I read it looked like Dr. Newell has done quite a bit of work in lyme disease, and I am gathering that this "post infection syndrome affecting cognition" has to do with changes in thinking, concentration, attention and such that can occur after infections. It will be interesting to see how PANDAS fits into this and how research done with other disorders might apply to PANDAS.

JAG— You go girl!

:D love it! :D

I have the same anger you feel. Don't worry about letting it go... instead, let it motivate you to heal your son and then help others.

Hi - Did you test them again after December? It could be that they were on the rise in December and continued to rise - resulting in the March exacerbation... Just a thought

:D LIKE :D