pr40

to second TiredMom and to add 5htp. works for us

skidoodles, can you please say more about "Dr Szakacs comes to MA as often as once a month." where does he/she come? thanks

long term steroids have been used for a long time, like last 50 years or so. there should be a lot of data on them and long term effects. Are her checks going to stay puffy for ever? If not, it's just the selfimage which in the larger scheme of things is, well, . . . Immunosuppressants are just too scary to me to consider them.

sounds like our ds. he also had mycoplasma. he is on long term abx and supplements similar to yours. he is the care of dr pasternack at mass general. I would at least try abx for a few months just to see if there is any change. quick way would be to try steroid burst. i think you have a pans case.

want to second dcmom. if 14, he could take more. 3-6mg helps me (adult). 5-htp was very useful when our dd had her worse insomnias.

I want to second what Dasu suggested. You can get anything online, including augmentin. What are the long term sideeffects of augmentin? Our immunologist suggested that they are minimal bc the dose our ds takes is prophylactic, i.e. small. if K doesn't want to prescribe it, would he change to another abx? it's a good idea to try others

on vit d. we have similar Mao and Comt mutations to yours. I find that the roundabout way with vit d works better for us, using fish oil. so, we no longer take vt d at all but do fish oil instead. i forget what the mechanism is exactly that fish oil helps with vit d.

We thought we were almost out of the woods last spring when ds8 had his first exacerbation in some time. summer was difficult -- moody, irritable, by himself -- and last two weeks have been . he is very aggressive and has almost no self control. there was no specific illness we can point to as a start of the most recent downturn. the only thing I can think of is chocolate which we avoided in the past and suddenly introduced. We did not change his treatment at all -- he is on long term abx, many supplements, and gluten and casine free diet. My thoughts are going now toward ADAH medication and I wanted to ask if you all have experience with it and what kind. why and why not?

Pandas is included http://thedianerehmshow.org/shows/2015-11-24/exploring-the-link-between-infection-and-mental-illness

do forums search. there were some posts about dr dr

if I remember correctly, there was a recent post about high IgE. did you do forum search?

i don't get one thing, why did you go to the neuro in the first place. You had the diagnosis. is it to be get tests done to rule out something? what do you want to rule out? and why? what's is the new info you are looking for? why not do tests through your regular pandas friendly dr?

here is the study http://www.medicalnewstoday.com/articles/302451.php?page=2 it's not directly relevant for pandas but often, when you have one autoimmune condition, you have another as well in some form. what's most interesting here is that they finally know which blood tests to do.

just to define what the previous posters said in different terms, inflammation lowering diet is what you want. I am not sure how one can choose btw SCD and Gluten/Casine/Sugar Free diets. there are important differences btw them. for us, the second one work BUT that was because me and ds have celiac. what I want to say is that the two diets will show you a good direction and you need to experiment and see what works. Time frame is important, diet should be regular for a year or two or more. if you have specific questions, I think there are many of us here who will try to answer them.

this note is about the destination, college, not about treatment. perhaps, you should consider a local college with him staying at home and commuting. Speaking as a professor, I would start by taking two classes. Anything else seems to me unrealistic, setting him up for a failiure. He'll have to deal not only with strep but also living away from home, pressures of a new place, other kids who will not understand his condition. And he'll have 4 YEARS of that.

indeed, they were not "symptom Free" for ever. BUT in ALL cases, that is 100%, IVIG was effective. there was significant diminishment of symptoms. In all cases -- if I remember correctly -- kids are almost symtptom free. And, conversley, there are no cases in which IVIG did not work at all. that is absolutely AMAZING.

hi jan251 -- if you have a specific question, i would e-mail study authors. please, post their response if you do contact them.

here is the study http://online.liebertpub.com/doi/pdf/10.1089/cap.2014.0067 I cannot believe these results. they are 100% positive. all kids seem to be SYMPTOM FREE.

an another article relevant for PANDAS/Pans that suggest schizophrenia is caused by infammation in the brain http://www.webmd.com/schizophrenia/news/20151016/brain-inflammation-may-be-linked-to-schizophrenia

this may be the one mechanism that makes immune reaction into autoimmune disaster. at any rate, quite promissing http://www.medicalnewstoday.com/articles/301016.php

when there is a immune reaction there can also be negative (auto-immune) effect on his system. being cut by glass should provoke an immune reaction. there is also some pscyhological effect of being wounded. all these should not last too long.

aleve can trigger another autoimmune condition, psoriasis. so, perhaps, it is responsible for the aggression you describe. aleve is prescrbed because it is easier on the stomach than ibuprofen.

there was another person from croatia on the forum under the tag croatian mum. you may want to search her posts -- some sypmtons her son had are similar to your son's. she might be able to point local drs (I think she also went to Italy). you ds's condition seems very complex and I am not sure what to suggest. I do agree with you that all symtoms can be easily connected. You may want to work on those things you can, like change diet (usually gluten and dairy free). There is a theory that l-glutamine helps with leaky gut -- lots of soup made from bones, if you cannot find the supplement. it seems that this seratonin levels are low. do research on the web of how to increase seratonin production and work on that. when his organism becomes stronger, he'll be able to better fight infections. do test for lyme I hope others will chime in. Sretno!

it seems sci are very close to figuring out the enzyme and so one mechanism of autoimmune diseases. now, we just have to hope that this is the PANDAS mechanism. My understanding is that with this discovery, if it applies to PANDAS, we will be able to neutralize the symptoms of PANDAS -- too hopeful? Here is the article http://www.medicalnewstoday.com/articles/299719.php

just a rection to something posted above -- that Sweedo recommends IVIG only when child's life is in danger. I am pretty sure that this is incorrect. There was a whole NIH study of which Sweedo was a part that qualifed kids for IVIG not by that criterium but by more usual OCD etc. criterium Moreover, you should read about IVIG -- it is a common procedure! Like all blood transfusions, it is not 100% safe but no medecine ever is 100% safe.