Back from the Neurologist

[Mike]

So we went to the neurologist today and after running some basic tests (reflex and running exercises and some similar to drunk driving tests) he just said our son was normal and should be fine. He said tics were normal and could have been brought on by the strep, but one can never really know. He said that titer counts usually take 30 days or so to go down so it's hard to tell if they are causing the tics. He had an attitude like it was no big deal, but did offer to prescribe Tenex if we wanted. He said it was a mild drug his own son took and actually stopped ticcing after using it, but mentioned he will never know if the tics would have ended anyway. He seemed to think there are too many chances at coincidence to claim something is really a cure for anything. For example we told him the Zithromax seemed to help the tics go down after a few days and he thought it was possible they could have gone down anyway. He thought it wasn't an issue unless it was really bothering our son. When I mentioned PANDAS I could tell he was familiar, but still up in the air if it is just a coincidence or not. He also said a colleague of his (a Dr. Swedo) specialized in PANDAS. I have seen her name here before, but he was actually impressed I had so much info on the subject. He said most people just come in and say "my kid has these tics".... not "I think my kid has PANDAS". But I told him if it weren't for me looking up info on the internet we would never have brought our son in for the strep test he was positive for. He said pediatricians and neurologists don't look for that and I told him, "THEY SHOULD!!". He smiled, chuckled a bit and said I was right.

 

So our next step will be to go in on Friday and get another blood test to check for strep and titer count. Not sure about going with the Tenex option. He said the only real side effects could be drowsiness and he would need to check blood pressure after 4 weeks. The dosage was small so he thought it would be a safe start if we wanted to try it. He seemed very pleased we were going to take our son to a psychologist to deal with some anxiety issues and thought that to be the best medicine. He has a few issues, but nothing close to OCD. I think he has developed a fear of confinement. He doesn't like elevators and even feels confined in a movie theater which he now avoids (what is odd is he went to his school play in a dark auditorium and didn't object at all). But no behaviors besides the tics that stand out. We are relieved he thinks it will all be fine, but he had an attitude that tics are no big deal and most kids will outgrow them. His tics still double during baseball, but are down compared to his peak episodes before anti-biotics. I asked if we should pull him from baseball and he said not to if he liked playing. He didn't think the tics actually hurt anything or did any damage. Sometimes I feel like sending Dr. Swedo an email to see if she has a 2nd opinion of her colleagues assessment.

[kim]

He said pediatricians and neurologists don't look for that and I told them "THEY SHOULD!!". He smiled, chuckled a bit and said I was right

.

 

Good for you Mike.

 

I asked the Dr. that we saw this weekend for strep if he was familiar with PANDAs too. He wasn't. He said that he knew of neurological sequelae being associated with strep, but had not heard the phrase PANDAS.

 

He prescribed amox.

 

I asked him about the failure rate. He said it was increasing, but if it didn't clear, another antibiotic would just be prescribed. I told him, I really didn't want my son on antibiotics at all, not to mention 2 in a row. He asked me, if there was one that I preferred. I asked how he felt about zithromax. He said "fine with me," Then I asked if he had any opinion on probiotics. He said they were ok in some circumstances. I asked if there was any certain strain that he thought was helpful. He just shook his head "no."

 

I don't think I was his favorite Mom of the day. He seemed uncomfortable, and I really don't know why. I was just truly curious to hear if he was still seeing amox. clear strep most of the time, and what his views were on probiotics. He was a pretty young looking Dr. but no new views on anything.

[Guest]

That's great that you got your doctor to check strep titers. I would hold off on the Tenex since your son may possibly have PANDAS. Even if he doesn't have PANDAS there are many other options to try before Tenex.

 

Carolyn

[Cum Passus]

Mike,

 

Last year my son was jumping and yelling all over the baseball field. We though about pulling him too. I was so nervous, I was sure he would be hit in the face because his head turned, but he always made the plays when the ball came to him. (he plays second) Right now he is not doing good, first year in Babe Ruth, and he has been lifting weights all winter. He can't wait to get out there a show how strong he is. He is a little guy only 4'10 and 90 lb (at 13) but is a good ball player. I think it is one of the best outlets for him, and he gets alot of respect from other boys because of his talent. I do believe that helps in a hugh way for the self-esteem.

 

Good luck and I hope he has a great season.

C.P.

[Mike]

That's great that you got your doctor to check strep titers. I would hold off on the Tenex since your son may possibly have PANDAS. Even if he doesn't have PANDAS there are many other options to try before Tenex.

 

Carolyn

 

Hi Carolyne, what would you try before Tenex?

[Guest]

Hi Mike,

 

If your son has PANDAS then I'd start with the zithromax and probiotics. If he doesn't turn out to have PANDAS, I'd start going down the list of:

looking for tic triggers

testing supplement levels

adding in supplements

check for dust, mold, pollen, and food allergies

try the No TV experiment

check amino acid levels

check for yeast

check for pyroluria

check heavy metals

etc....

 

Here's a post about the different tests: http://www.latitudes.org/forums/index.php?...755&hl=test

 

I would suggest going this route before trying any medications for tics other than the antibiotics for PANDAS. Some do well on medications, but many do not. I believe it's best to first try and find the source of the problems and not just treat the symptoms.

 

Carolyn