Neurologists in Houston TX area?

[GraceUnderPressure]

Can anyone here recommend a neurologist in the Houston area? My son just turned 18 this month so I don't know if that rules out a pedi neurologist or not - he's had tics since he was at least 4 and they've gotten increasingly worse over time (in fact, last night was the worst ever - he almost couldn't stop & there was absolutely nothing I could do to help him & I had to run to another room & close the door so he wouldn't hear me sobbing).

 

We've never had PANDAS checked out (didn't even learn about it till recent years) & now I'm wondering if it's too late because he would have had it so long

 

(I saw in the post history here that someone was going to try a Dr. Joshua Rotenberg - any feedback on him? He doesn't appear to be covered by my insurance plan, but if he's good, we'll try to afford him)

[saidie10]

Can anyone here recommend a neurologist in the Houston area? My son just turned 18 this month so I don't know if that rules out a pedi neurologist or not - he's had tics since he was at least 4 and they've gotten increasingly worse over time (in fact, last night was the worst ever - he almost couldn't stop & there was absolutely nothing I could do to help him & I had to run to another room & close the door so he wouldn't hear me sobbing).

 

We've never had PANDAS checked out (didn't even learn about it till recent years) & now I'm wondering if it's too late because he would have had it so long

 

(I saw in the post history here that someone was going to try a Dr. Joshua Rotenberg - any feedback on him? He doesn't appear to be covered by my insurance plan, but if he's good, we'll try to afford him)

 

Hi! Joshua Rotenberg is great, but he will only treat the symptoms of PANDAS if he thinks your son has it. It is the "evidence based medicine" thing. He is awesome for traditional neurological issues and has a specialty in Tourrettes, but if you really think it is PANDAS then you might want to find a doctor that is treating the root of the problem, not just the symptoms. I don't know about the fact that he is 18 already. I mean, it is so sad to me me how many unfortunate young people probably had PANDAS but never got diagnosed, and instead got diagnosed with a Tic Disorder and/or OCD. Good luck to you. There are some doctors in the Dallas area that are diagnosing and treating the root of PANDAS so if you are interested let me know.

[Fixit]

Hopefully some of the adults who are currently trying to address pandas can help you....there are a few.

 

there should be/or is a list of tests you can get done asap with a regular doc

 

strep

aso

antidnase a/b

mycoplasma pneumoniae igg/igm

tsh panel

vitamin/mineral levels....d,b,mag,iron

cdc panel

 

lymes by igenex

 

and maybe start by removing dairy and gluten to see how it goes.....

see if you can get some other food test done

there are more and maybe others can add to a first go round list....

and try to get to a PANDAS doc soon!!

 

i have some fires here,,,thing are not great...i'm sure others will jump in

[GraceUnderPressure]

So if I want to find out if my son has PANDAS, would Rotenberg be good to use then, or should I be looking for an allergist/immunologist who is open to the theory or what?

 

Thanks for the list of tests, Fixit! We've been struggling with trying to keep to a gluten/casein (+ eliminate IgG allergen positive foods) free diet for a while now & never been able to maintain it for more than maybe 2 mos at the most before something sends us off track. I have a suspicion that the back & forth thing with our diet is probably hurting our son more than if we were just either doing it or not.

 

In my panic now, I'm trying hard not to do too much and make things worse for him just because his body is trying to cope with too many changes at once. This is so hard. And so expensive. And now my DH has just learned that they're cutting his hours at work.

[Fixit]

its the least i could do..to pass the little i know forward...by eht way it should be cbc

also test ebv....

an easy thing to add that should be mininal in any problems...but beneficial in the long term would be to add probiotcs even if you are not on abx..(.now that i know better)

and add bentonite clay if you can squeeze it in schedule.....only add one thing at a time and wait 4 days or so to make sure no neg side effects....

there are many on the board who have a better understanding of these things, but i've found them more beneficail than some other supplements...(ithink)...the more i know...digestion is a big player.....

I can say that if you can get ahold of scott smith...a pa in a dan office in fl....he is on lynn johnsons site that was mentiioned.....and very knowledgable...at least call him and see if he would suggest a phone consult or a visit....he will need a vistit to do certain things...he also does blood work and ignex and the cunningham in his office....if decieded upon he can also do ivig.....

some of the tests he may want to run you may have to go off bentonie and other things.....

 

ps most on the board are used to my fat fingering, no spell checking...sorry..lazy and busy....every second counts...

 

So if I want to find out if my son has PANDAS, would Rotenberg be good to use then, or should I be looking for an allergist/immunologist who is open to the theory or what?

 

Thanks for the list of tests, Fixit! We've been struggling with trying to keep to a gluten/casein (+ eliminate IgG allergen positive foods) free diet for a while now & never been able to maintain it for more than maybe 2 mos at the most before something sends us off track. I have a suspicion that the back & forth thing with our diet is probably hurting our son more than if we were just either doing it or not.

 

In my panic now, I'm trying hard not to do too much and make things worse for him just because his body is trying to cope with too many changes at once. This is so hard. And so expensive. And now my DH has just learned that they're cutting his hours at work.

[tpotter]

Check out this study. Another parent posted it a few days ago, and a different one forwarded it to me (my children are 14 and 17, and both just recently diagnosed.) It was a study done in Turkey, using Plasmapharesis as compared to other meds, in young adults (18 - early 20's). PEX was very successful. We have used IVIG and PEX on my now 14 yo (last year), and PEX on my now 17 yo (was just identified and diagnosed last year,) and we were very pleased with the outcome. We are, hopefully, repeating PEX in both boys soon. I do feel that, particularly at this age, we have to be very aggressive. What I would like to do is PEX followed by IVIG.

 

http://www.turkpsikiyatri.com/en/default.a...icle&id=592

[Fixit]

Check out this study. Another parent posted it a few days ago, and a different one forwarded it to me (my children are 14 and 17, and both just recently diagnosed.) It was a study done in Turkey, using Plasmapharesis as compared to other meds, in young adults (18 - early 20's). PEX was very successful. We have used IVIG and PEX on my now 14 yo (last year), and PEX on my now 17 yo (was just identified and diagnosed last year,) and we were very pleased with the outcome. We are, hopefully, repeating PEX in both boys soon. I do feel that, particularly at this age, we have to be very aggressive. What I would like to do is PEX followed by IVIG.[/u]http://www.turkpsikiyatri.com/en/default.a...icle&id=592

 

Me TOO!!....i don't know why...i think that is the combo...doc k may have mentioned it earely on....it seems like you 2 ivigs are needed in general...i think for those with tics that may be the perfect procedure....

[EAMom]

definitely get a throat culture on your son as well as family members to check for strep carriers.

[tired mom]

Know that all you are going through is heartfelt on this forum. Many of us also know the financial strain and the disappointment of being failed by the medical system. My child is also 18 and I still hold much hope. You maybe can consider a phone consult with one of the doctors on this forum. The cost is much less then a visit and then you will have a better idea where to go from there. Good luck!