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Tourettes or PANDAS? Doctor can't tell me


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Hello all! I have been posting on the pandas forums for several months now, but am wondering if I need to be here instead? My son is 7. He had H1N1 in October and shortly after, he began to have vocal and motor tics, severe seperation anxiety, difficulties in school, OCD (mainly obsessive thoughts), will not sleep, etc... This escalated rapidly to extreme behavioral outbursts that became violent - directed at me. He was diagnosed with PANDAS by our family doctor. He did have a positive strep culture at the time. She gave us antibiotics and he improved quite a bit. He was on them for about 6 weeks. When they ended, he escalated again. Went to a neurologist who said it's not pandas, but tourettes and there is no treatment. Once he became aggressive again, my family doctor agreed to give long term abx. However, his culture at the time was negative.

 

Subsequent blood work showed he has an immune subclass dificiency. We went to a pandas doctor and he is on long term ABX high dose. He also recently tried a steroid burst and it made him much worse.

 

Went to CHOP this week and the doctor there feels he has Tourettes as he isn't responding to pandas protocol. HOwever, she questions which it is herself as he had 1. rapid onset and 2. does respond somewhat to abx, especially since his tics are very minimal with it. But of course, steroids would make TS worse...

 

So I have many questions. Is it common for a child to have such a dramatic appearance of TS? I know he is the right age group for this, but so suddenly? He did have very minimal transient tics since age 2, but none of the behavioral issues. He did NOT have any signs of ADHD until October and it is extreme at this point. I know they can be comorbid but the time frame just seems so suspicious.

 

What kind of doctor do I need to see? We've been to two neurologists, a rheumatologist and an immunologist. Going back to the immunologist tomorrow actually to ask her about the subclass deficiency and if that is playing any part in this. What I wonder is - if illness can increase TS symptoms, is being on abx just keeping him from getting ill which is why some of it has improved.

 

We are also in counseling and I have agreed to a psychiatric evaluation at this point. I have stopped giving ABX since they aren't helping (and we tried 4 different ones).

 

Any guidance is helpful!!

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hi tantrums,

you are asking very good questions here and doing all you can to explore whatever may or may not be the issue. that is all you can do. I am kind of in the same boat as you, for me its a toss up, I don't have definitive evidence of PANDAS, yet I've had docs willing to treat as such, and like you, no real improvement. Pandas is a long road, its no quick fix. I know some think it might be a good thing to have this as a direction, but the fact is that not all kids respond, and for what is called pandas right now may encompass a miriad of other autoimmune issues, and they are not very easy to pinpoint. I can tell you I've been here, there, and everywhere. my son's issues are not as bad as what you describe, I deal mostly with tics, mainly vocal, and yes, some other comorbid issues such as attention/focus (which I see as obsessive compulsive in nature), irritability due to sensory, and some plain ocd, but notne of this ever hit the fan except for the vocals, which I am dealing with right now, and this after trying out a yeast regimen and then vacationing in California (dang that Katy Perry, lol), but I don't know what happened, maybe coincidence, maybe reaction to a few weeks on these antifungal/abx, exciteement, allergens, don't know, could be anything (the trigger, the exacerbator, the contributoer, who knows.)..

 

So basically, what I'll tell you is go ahead and explore whatever else you can, our kids have somehting genetic going on no doubt, what ever else is contributing, who knows, but there are many things to explore, i.e. allergies, supplements, yeast, clostridium, dietary, I could go on. you will have to find that golden ticket. For me, I've sort of dead ended on PANDAS, altho I do feel there is something autoimmune going on, we don't have the strep per se, and so do we have those antibodies circulating? don't know. I opted not to do the steroid, as my research pointed to not wanting to take a chance of things getting worse, and I am confident with thate decision. Abx do not seem to help. and even tho this yeast regimen did not seem to help, I was going to change the abx to flagyl for a trial, wondering if clostridium could be our problem. I gave it to him last night and dang, his vocals went to constant within two hours. so I am now deciding not to continue. My bad is that I have not really done testing for these things (yeast/clostridium) I am just going by gut and instinct. I do have DAN doc guiding me on this, and he beleives these tests are not that useful, as they may show false negatives, they just go in and treat due to clinical symptoms. I'm okay with taht, but now I think I am not going to continue this route until I do have something definitive to go on. if I see negative reaction, I don't think it wise to continue.

 

So what am I talking about? I think my best advice to you is try a DAN doc, for they are well versed in biomedical approaches, and you can try a few different things with their guidance. we have done this over the years, can't say anything remarkable has come of it, but doesn't matter, you never know what will be YOUR child's issue. DAN's are used to treating autism, and most of the things they do for autism are the very things we here have looked at for our kids, its all neurologica, its all autoimmune (DANS believe tourettes,pandas, etc. are autoimmune in nature, something is going on).....So I say, find one of those, they know autoimmune, they know PANDAS, they know biomedical. this will give you the oppty to explore other options besides pandas. not saying to abandon pandas, I still keep on top of wht I need to, but abx doesn't seem to help here, and my son's issues are not in the severe category, so I am not going near IVIG until I know more. I do have a PANDAS doc that I trust and he agrees with my decisions. If my son's problem is tourettes, well than its tourettes, we can still find ways to manage it.

 

don't know if that helps,...altho I can say it does sound like your child's history is more pointing toward pandas than we, but I still think you have to explore more, not get stuck on abx and whatever treatements are for PANDAS, I just don't think it's a one size fits all here.

 

Regards

Faith

Edited by faith
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  • 2 weeks later...

Our journey is similar to yours. Strep started my son's tics and compulsions at age 1 but over time even fevers and ear infecions and flu seemed to bring them out worse. Then after shots his behaviors really exploded a age 4. He began the urinary frequency, and toe cracking, butt picking, crying tantrums and obsessions. We have went down every avenue from DAN! to neurology to immunology to psychiatry. We have been told TS, ADHD, Aspergers, PANDAS OCD. It is all comorbid. We did do the steroids last summer and he got worse in his behaviors, we have treated with longterm antibiotics and saw no real improvement. WE have tried GF CF diets and supplements. The tics still wax and wane and the obsessions and compulsions seem constant. However the behaviors and impulse seems to always be an issue. We have seen neurology and psychiatry specialist all over the countryfor PANDAS , he had a PET scan, and did Cunningham tests. He seems to have genetic TS and anxiety, but it manifested with strep and shots. My son was violent last summer, he did have seperation anxieties, had trouble with sleep, poop and urination issues, school issues, motor delays. I have him seeing a psychologist and psychiatrist and an OT and he is on three meds daily. I have started going to an Aspergers group and we seem to fit in there well. This summer he went to a special needs camp and did well with the routine. If you PM me I can tell you more about his treatments that have helped. I have deal with this for 7 and a half yrs and it is still a struggle everyday.

 

Hello all! I have been posting on the pandas forums for several months now, but am wondering if I need to be here instead? My son is 7. He had H1N1 in October and shortly after, he began to have vocal and motor tics, severe seperation anxiety, difficulties in school, OCD (mainly obsessive thoughts), will not sleep, etc... This escalated rapidly to extreme behavioral outbursts that became violent - directed at me. He was diagnosed with PANDAS by our family doctor. He did have a positive strep culture at the time. She gave us antibiotics and he improved quite a bit. He was on them for about 6 weeks. When they ended, he escalated again. Went to a neurologist who said it's not pandas, but tourettes and there is no treatment. Once he became aggressive again, my family doctor agreed to give long term abx. However, his culture at the time was negative.

 

Subsequent blood work showed he has an immune subclass dificiency. We went to a pandas doctor and he is on long term ABX high dose. He also recently tried a steroid burst and it made him much worse.

 

Went to CHOP this week and the doctor there feels he has Tourettes as he isn't responding to pandas protocol. HOwever, she questions which it is herself as he had 1. rapid onset and 2. does respond somewhat to abx, especially since his tics are very minimal with it. But of course, steroids would make TS worse...

 

So I have many questions. Is it common for a child to have such a dramatic appearance of TS? I know he is the right age group for this, but so suddenly? He did have very minimal transient tics since age 2, but none of the behavioral issues. He did NOT have any signs of ADHD until October and it is extreme at this point. I know they can be comorbid but the time frame just seems so suspicious.

 

What kind of doctor do I need to see? We've been to two neurologists, a rheumatologist and an immunologist. Going back to the immunologist tomorrow actually to ask her about the subclass deficiency and if that is playing any part in this. What I wonder is - if illness can increase TS symptoms, is being on abx just keeping him from getting ill which is why some of it has improved.

 

We are also in counseling and I have agreed to a psychiatric evaluation at this point. I have stopped giving ABX since they aren't helping (and we tried 4 different ones).

 

Any guidance is helpful!!

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I encourage you to seek an opinion from a Lyme specialist (not an infectious disease doctor). This could be a treatable tiickborne illness and the key to getting well might be the right combo and doses of meds. Interrupted sleep and rage are red flags for Lyme and boys between 8 and 15 are statistically at higher risk to get Lyme and or confections. We are in an epidemic of Lyme so it is not a rare illness. Good luck.

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I feel we have alot of the same issues. My dd 8 also had H1N1 DEC 2009 that was the trigger that became severe (progressive,then drastic start of April 2009) Also had elevated strep ab but no symptoms of a recent infection just prior. Had strep <1 yr,and transient tics/OCD/sensory (mild)since. It is best to rule out other co-infections (lyme, mycoplasma) before just accepting tourettes. How long did you try abx. We have had the problem of trying to wean, then symptoms come back, and I believe she is building resistance. We are also on 3rd abx, and tics have improved, but rage is out of control. Still some atypical OCD. I have heard that each time you wean/ switch it takes longer for abx to take effect (???) We have also done IVIG and will be doing 2nd dose this week. It is slow, but we will watch and hope for improvement. Some children do well on psych meds,some worse. I wish you all the best.

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Every parent has to decide which avenue to persue or follow several....

but a couple of things...just because you tried abx...you may not have been on them long enough..months, sometimes several months.then switch or combine abx's like a lyme protocal to see a change....

 

next...just because the infection is cleared doesn't mean the body realizes it..or if it does the autoimmune component is on full throtle....just like asthma..just because you walked away from the trigger, smog, allergens...doesn't mean the attack will stop and you may need an inhaler or more......same with pandas/pitands...

this is something parents don't catch onto for a while....

and some do not neccessarily respond to the steroid..as per doc K..doesn't mean they will not respond to other treatments...

and some parents have posted that the steriods did little to none...but have had success with LLLOONNNGGG term abx, ivig other...

 

i am not suggesting i have the answers...but it is more complex than just taking abx....

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