I keep going between PANDAS and TS

[tantrums]

My son is 7. He was fine, although looking back, he DID have some transient tics since age 2. Things I didn't reckognize as tics, lip licking, shirt sucking, etc... He got H1N1 last october. Shortly after that, he developed severe seperation anxiety, vocal and motor tics aplenty, rage attacks, OCD - mainly thoughts of death and poisons, and other issues. He was diagnosed quickly with PANDAS. First round of ABX helped nearly completely. He was good for nearly 2 months after stopping them. Then he went downhill again.

 

This has basically been the pattern now for nearly a year. I have seen numerous doctors and have numerous diagnosis at this point. However, nearly all doctors have diagnosed pandas AND TS among other things - OCD, Intermittent Explosive and now Aspergers (which he did NOT have a year ago). I started Strattera for him about a month ago and he has responded minimally to it. I do see some improvement and it is only 10mg. We just agreed to increase it today.

 

He is just about out of ABX and I'm considering not renewing and seeing what happens. He's been on them for months now and just recently, despite ABX, his tics are increasing anyway.

 

I don't know how to know WHICH he has! I am going to do a cunningham blood test which may tell.

 

We did a steroid burst and it made him SOOOOO much worse! That's one of the key things that leads me again in the direction of TS.

 

My main question is though - does the onset sound plausible to you all here? Can TS develop so rapidly? I realize he is the right age.

 

What type of doctor may be able to REALLY help me!? I've gone to neuros, rheumatology, immunologist and am on a LONG wait list for a developmental pediatrician.

[CSP]

Hi tantrums,

 

My son aslo had very slight tics before age 12 that we did not even notice as a problem. They would come and go and were so light I just thought it was part of him being a boy since I have 2 girls too. But at 12yo he got 2 shots and BAM he exploded with screaming tics. I also have gone and looked into PANDAS and he always seems to be helped with abx, but not for a long time. My son also has no other issues with behavior, he just tics all the time.

 

I stopped using vitamins because they seem to not help either and I just used a clean diet to get him healthy.

 

I can tell he is ticcer this week because school started, football season is here and he is OCDish about his Steelers, and his braces were worked on yesterday. So I just up mom therapy and wait it out until he calms down. This is just how his pattern always goes.

 

Sorry I'm nohelp on what else you could try we feel like we tried everything and got no results good enough for very long. Natural calm, B6 and B12 were the best results that lasted about a year and then they did not seem to work anymore.

 

I wish you the best and continue to keep all of you in my prayers, hoping the Divine Physician will heal us all.

 

CP

[Chemar]

Hi

 

why was he diagnosed PANDAS? did he have strep history, titers etc to validate that? or was it rather a PITANDs type dx because of the onset after the flu?

 

was he given the steroid burst to try to diagnose the PANDAS or after the dx?

 

as you may know, this is something I have great concern about as some doctors seem to be using steroids as a diagnostic and they can make tics far worse in someone who may have TS!!

 

Do you have any family history of tics, TS and/or OCD

 

and yes, rapid onset can occur in TS . It is likely triggered by something (internal or external) that likely switches on the gene(s) that set the whole thing in motion. Not only infection causes rapid onset IMHO

[tantrums]

Yes, he was given a strep culture in December and it was postive. Later on, titers were drawn and they were high. So there was evidence of strep. Probably a secondary infection after H1N1.

 

He had a steroid burst and it was AWFUL!! We were planning on doing that prior to attempting to get IVIG. But both tics and behavior were unbelievable after the burst for quite some time and then it only calmed down to his "normal" level - no better.

[Chemar]

That is interesting then, as if this had been "just PANDAS" I would have thought the steroid would have helped.

 

the fact that he got worse is something a doctor really should evaluate as to why.

 

if he does also have Tourette Syndrome, in addition to the infection related symptoms, then that could be why the steroid increased the tics.

 

I dont think you need to have either TS or PANDAS, but that it is very possible to have both! Kids with TS predisposition genetically do also get strep infections and other microbial stuff so can also be PANDAS or PITANDs. All that means IMHO is that the treating physicians need to work carefully to optimize treatment taking both dx into consideration

 

we had to do that for my son when he got the Crohn's dx. Things that work for Crohn's (steroids and immuno - suppressive drugs) are not good for TS, so we decided to also take a "natural" and balanced approach to his healing there, which has been as successful as that for his TS,OCD etc

[faith]

hi tantrums,

I think I can relate to what you are asking and wondering. your son seems to have much of the same symptoms as mine, minus the rages, altho i might say he had tissy fits when younger, more of an 'I want MY way' type thing. (he is 11 now btw)....

 

I also saw tics as young as 3 1/2. we have no high titers ever and he ususally tests negative for sterep. we'v also explored PANDAS and have seen the PANDAS docs and have done abx, despite not really knowing where we fit in. that said, we were given the steroid by one of hte docs, and ultimately, i opted not to try it. i was afraid of jus what you are reporting, as i had another member tell me of her experience and it not being good. so i can't give a comparison to that, but just wanted to say i did not wind up doing it, it was my choice and glad i made it because really it would hve not been anything more than a temporary fix from what i am seeing by others experience.

 

I agree with Chemar above that some have a predispositon to tics or tourettes if you like, or ocd, and of course can either just be exacerbated by strep or some other illness, or come to develop a full blown autoimmune reaction, thus PANDAS.

 

I understand what you are saying, becaue no matter what they call it, there still has to be a course of action, (or not)...and does not mean whatever is supposed to work for it, will work.

 

I have been on this road for a while (tics mostly and some ocd)...I am not positive any one doctor can address it all. you may have to do piece work, something from doc a and another from doc b and yet another from doc c...all which will be trial and error. there really is no set course for these clinical dxs.

 

Could I ask what you may have tried in the way of natural means, diet, etc....(not for pandas, just for tics and symptoms)..

 

thanks, i would love to talk to you more, have to run now but i'll check back later on....

 

thankis

Faith

[cory2605]

Hi, I can understand your frustration and fear....it seems we have all either been there or are there now or a mixture of both. I have noticed in a lot of articles and forum posts a number of cases where the onset of tics came after the H1N1 or flu vaccine. This is the case with my son, or at least what I suspect at this point. I also had suspected Pandas as he has developed fears, OCD, nervousness and restlessness, some separation anxiety and an agressiveness at home I have never seen before. When I googled the vaccine, I found the injection vaccine (not the nose one) has mercury in it which acts as a preservative. This is the one my son had. And also from what I've read, mercury in the body can cause tics. We are currently on a Gluten free/Casein free/Soy Free diet. For the first time in months, I noticed he went 3 days without hardly ticcing at all. Then, after lunch on the 4th day, he started ticcing but not as badly as before. The 3 day reprieve seemed to coincide with beginning a Fish Oil supplement. But it's hard to say. We did have him on antibiotics for about 3 weeks. I didn't really notice much difference but the dosage was only 400mg when I think 800mg is the therapeutic dosage for Pandas. Anyway, that's my two cents for what it's worth. Like someone else said, we'll just keep praying and hope the 'Great Physician' heals them which I feel strongly he will.

 

Trish

[faith]

trish,

just to clarify....re the fish oil...did you mean that you started the fish oil and he seemed to be doing well. so the fish oil didn't increase tics from the first day, right? and you feel gluten free may be helping? you are doing both at same time, is that what you mean?

 

could i ask what brand and dose and what the ratio of epa and dha are? i want to try again with fish oil, but always feel me son has tic increase on it, so i've not used if for a long time.

 

thanks

Edited September 16, 2010 by faith