introducing myself, looking for a place to start

[ladyd]

hi everyone.

i've been lurking on this forum for a few months now, seeking knowledge regarding my 8 year old son's tics.

since the holiday break at school, our son's tics have noticeably worsened, and have become quite a concern. we see an educational psychologist who has unofficially diagnosed him with tourettes and inattentive add. she has referred us to a 'trusted psychiatrist'. however, this is not a route i wish to pursue, because i suspect he'll recommend medication for the tourettes and/or the add, and i'd like to really exhaust all other options before going that route.

here's some background on our experience thus far:

nicholas was born by c-section. his developmental growth was typical, and he was a pretty healthy baby. just before he turned three, he had a strange medical event. he announced to me "mommy, get my [toy] car, i too dizzy," and then he started to walk around like a person who couldn't maintain his balance. we rushed him to the ER. he vomited a few times and experienced this lack of balance when walking for about 24 hours. he stayed in the hospital for a few days, had a contrast MRI, which showed a healthy brain -- no infection, no abnormalities; all other tests, including blood tests, came back normal as well. they said it was a virus, and this "dizzy event" never happened again. not sure if it's worth mentioning but he had strep followed by roseola many months before this occurred.

a few months after this hospital stay, which may or may not be related to his tics, he started with a sniffing tic. he'd take deep breaths over and over through his nose. the doctor said it was a tic, nothing to worry about; that tic went away, and small tics reappeared over the years, but they were mild, and only we seemed to notice them.

but that has changed recently. returning to school after the break brought his tics to a new level. he blinks, grimaces, nods his head up and down and side to side. i try to keep organic, but he has always been a very picky eater so his diet does include a lot of carbs and dairy (bread or pasta and cheese). i'm not sure what to do next. pediatric neurologist? naturopath? i really want to go to the HANDLE institute right away but my husband wants to wait for an official diagnosis (to tell us what we probably already know -- that he has tourette's.) where does one begin? it's so distressing to watch your child tic. i just want to jump right in and try to help him. thanks in advance for any advice you can give. is it possible that he could have PANDAS now, five years after this initial event? he has had only a few cases of strep in his life. do you have any pediatric neurologists with good knowledge of tics, tourettes, and PANDAS in the long island/NYC area?

thanks in advance!

[lyme_mom]

You should see a Lyme specialist (call or email ilads.org) so you can be certain there are no other infections you are not aware of. A good Lyme md may be able to figure this out even if it is not Lyme. The dizziness u mentioned can b a sign of Lyme as can the tics.

[lismom]

My son who is now 13, started with very mild ticcing. The first time we tested for allergies. Allergic for many things, including our cat at the time, and nothing helped so we started allergy shots. The ticcing went away completely. However, looking back now, he did have temp tics throughout the years. Only for week or so at a time. Probably from vaccines, and illness. Moving to 2 years ago the tics exploded. Tried for months,with diet and supplement and it did help some, but then son got very ill. Finally tested blood for strep titers. Numbers were high. His throat had been swabed months before and was negative. May have gotten strep in his gut. Antibiotics did help after a while. Tooks months with antibiotics, probiotics and diet, tics went. But something else would trigger, like H1n1 flu. He never got back to 100% in 2 years. I am now investigating Lyme disease because we have been to areas that are very infested. If Lyme is negative then I will persue some other options.

 

So, the road to discovery can be long and winding, but my advice would be to make a plan and just start testing what you can. One constant for us has been something with the gut. Any questions feel free. Kathy

[SarahJane]

You didn't really say if the tics had any temporal relationship to any strep or other illnesses/shots or Flu Mist (or illnesses of other family members or friends since exposure can make things worse & Flu Mist is a live virus that's caused some issues in PANDAS kids or seemingly been the catalyst). And do you see anything else other than ADD? Any OCD? Rages? Handwriting and/or math deterioration? Sleep issues? Age regression/immaturity? Sensory issues? From what I can tell, it seems that many things get lumped into an ADD dx for explanation, but if you dissected all the symptoms, what do you see? There's good info at the beginning of the PANDAS forum that has articles with lists of symptoms. When your ds is on antibiotics, how does he react? Do things get better? Those are just a few things I would consider, and I'm sure others will also chime in with more advice. And if you decide to pursue a PANDAS expert, for your area these are the closest docs: Dr. L/Bathesda & Dr. T/NJ.

 

Good luck.

[ladyd]

thanks so much for your feedback. i haven't noticed any pattern to the tics, they always appeared out of nowhere, or so it seemed, but i have noticed the mildest of runny noses does seem to accompany the return of the tics (when his tics first started at age three, the doctor would alternately say it was a tic, or say it was a sinus infection, and prescribe antibiotics, even though he didn't seem sick, maybe to make it seem like he was doing something? if anything, antibiotics seem to make him more tired, but it's been a very long time since he's been on any, probably over a year. he's a pretty healthy kid, thank God.)

but your other questions raise a red flag to me. he has handwriting issues, and has gotten OT since kindergarten (not that it's helped much); i noticed that his handwriting seemed worse before this latest flare up of tics, which are far and away the worst his tics have ever been. he struggles very much in math, too, and has been in remedial classes for math the past two years in school. on the other hand, he is an articulate and advanced reader, and a very sweet, empathic and sensitive boy. interestingly, again, nicholas hasn't been sick (has the most minor of sniffles, as i stated earlier) but his brother (who is five) has had a bad cough for about two weeks. noah has also been prone to strep (tested negative for it at the doctor's visit for the cough).

nicholas never received the flu mist, or any other flu vaccine.

now i'm really not sure where to begin. with a pediatric neurologist who specializes in tic disorders, his pediatrician, or go right to the pandas doctor? does my son's course seem familiar? i'm going to go back and read the articles you mentioned. thanks again so much, to all who responded, for your time.

[mom love]

thanks so much for your feedback. i haven't noticed any pattern to the tics, they always appeared out of nowhere, or so it seemed, but i have noticed the mildest of runny noses does seem to accompany the return of the tics (when his tics first started at age three, the doctor would alternately say it was a tic, or say it was a sinus infection, and prescribe antibiotics, even though he didn't seem sick, maybe to make it seem like he was doing something? if anything, antibiotics seem to make him more tired, but it's been a very long time since he's been on any, probably over a year. he's a pretty healthy kid, thank God.)

but your other questions raise a red flag to me. he has handwriting issues, and has gotten OT since kindergarten (not that it's helped much); i noticed that his handwriting seemed worse before this latest flare up of tics, which are far and away the worst his tics have ever been. he struggles very much in math, too, and has been in remedial classes for math the past two years in school. on the other hand, he is an articulate and advanced reader, and a very sweet, empathic and sensitive boy. interestingly, again, nicholas hasn't been sick (has the most minor of sniffles, as i stated earlier) but his brother (who is five) has had a bad cough for about two weeks. noah has also been prone to strep (tested negative for it at the doctor's visit for the cough).

nicholas never received the flu mist, or any other flu vaccine.

now i'm really not sure where to begin. with a pediatric neurologist who specializes in tic disorders, his pediatrician, or go right to the pandas doctor? does my son's course seem familiar? i'm going to go back and read the articles you mentioned. thanks again so much, to all who responded, for your time.

 

 

I would say start with your pediatrician. Have as much blood work done as she will order. Strep titers = ASO and Antidnase b, get a blood test for mycoplasma pneumonia, and request the lyme western blot. That lyme test may only run as the elisa which if negative they don't test for the western blot, but if your doctor asks specifically for the western blot they may run it.

 

That would be a start. I would print all the pinned threads here and buy a copy of Saving Sammy and bring it all to your doc. Tell her you have learned that these above infections can trigger tics etc. and want them ruled out.

 

Then you can decide which specialist you want to go to. Get some basic blood work going. CBC too and check iron. We did that after 5 years of symptoms for my dd and found mycoplasma pneumonia.

 

Out east you have lots of docs to choose from.

 

On the lyme board here they use Igenex for lyme testing.

[EAMom]

I think who you see first depends on your relationship with your ped. There is an advantage to seeing a PANDAS expert (such as Dr. T. who is in NJ, close to you...I also think he'll have an appt. sooner than Dr. L?). There is a lot of stress, time, and energy that goes into educating most peds about PANDAS, and telling them what tests to run. Some peds don't even want to run throat cultures if there aren't signs of pharyngitis (which I would rec. for your son and all family members btw.) Since you have a PANDAS/tic expert nearby (Dr. T. is a pediatric neurologist so he knows about non-pandas tics as well), I think it makes sense to "cut to the chase" and consulting an expert if you can get an appt. in the near future.

 

I would also (perhaps once blood tests/throat cultures/lyme tests are done), consider a 1-2 mo. trial of an antibiotic (such as Azith. or Augmentin)...to see if that has any impact on your son's behavior.

 

Also, some parents fine Advil (Ibuprofin) helps with PANDAS symptoms (probably ocd/mood for than tics), so that is something you could try for a few days (give with food 3x daily) to see if you notice a difference.

 

re the math problems.

Does your son have more problems with math concepts or memorization (facts) or both? How is spelling?

Edited January 24, 2011 by EAMom

[chodnett]

i agree see LLMD. My daughter presented with tics in 4th grade and she is in 7th grade now has been on antibiotics and had 3 IVIGs and still has tics. We are in the process of LYME testing. and looking for LYME dr.