Update on Dd..and we saw Dr. Trifiletti Wedneday

[faith]

Welcome. So upon seeing the titers were still elevated, did the ped at least put him back on antibiotics? If so, which one?

 

Have you tried giving Ibuprofen (advil, motrin)? Some have seen it help ease some PANDAS symtoms and from what I've read from other Dr T patients, he has even asked them at their appt if they have tried it and what the results were. So, something to try before seeing him.

 

 

Hi Angela and all.

This is my first post. We have an appointment with Dr. Trifiletti next week. Hard decision on who to go to.

My son Z will be 16 next week. He has been treated for tics for several years now on Clonidine. ADD and OCD were never treated because the meds could cause exacerbated tics. Z presents so "normal" that he was denied a section 504 even when appealed.

 

Last spring our wonderful pediatrician had him tested for strep after some odd behaviors in school occurred. Titers came back elevated and we was started on Penic. which his neurologist took him off of in August. Things seemed good until a couple of weeks ago when grades started falling and some behaviors were odd. Had him tested again and strep titer are again elevated. Neurologist will not treat for PANDAS. The pediatrician said we should find someone to treat the PANDAS.

 

After calling in many favors and speaking to several physicians, it seems that there are only a few folks who truly treat PANDAS. We look forward to the appt next week.

 

P.S. This feels really good to get it out and not feel like a crazy person when talking to friends and school officials who think I'm nuts!

 

-HeidiS

 

I just wanted to comment on the advil and Dr. T., and his asking about it at appointments, it is just because he heard that some parents were doing this, it is not his idea, just want to clarify that, hope you don't mind. when we saw him, he asked me and said he heard someone mention that, or perhaps he read it here. his take was that he thought it was interesting that some would think to do that, and that he wouldn't have thought of that one himself. perhaps he thinks its an okay thing to try, but just wanted to clarify that it isn't his suggestion.

 

Faith

[thereishope]

I remember that. He said he read it on here and that many had seen an easing of symptoms. I just viewed it as a bit more info one can supply to him to aid him in guiding them through diagnosis and treatment.

 

If I made it sound like he was telling his patients to take it, I didn't mean it that way.

[melanie]

I agree I spoke with Dr T he said we could try the Advil if we wanted to.He didnt tell us to use it I think he heard it from a parent too.Im still fighting the stupid insurace company I hate that they make you wait so long.I guess theres a lesson of patience I need to learn.But meanwhile the insurance company said his levels of Igg arent low enough and a stupid medical director is reviewing it again and they will call me later today.Well its 5:30 and no phone call again.This happens every monday and by thursday I start freaking out.Its been 2 months I think they are jerking me around until I get so frustrated that I give up.Well insurance company I will never NEVER give up so there.(I feel better whoo).

[momaine]

Hi Heidi,

Welcome to the group but sorry you have to be here. I think you'll find a visit with Dr. Trifiletti well worth it. Where are you driving from? It was 6 hours for us and we got in a visit to NYC which was fun. (took my niece becuz that makes it easier for dd) Any way you can get your pediatrician to give you a script for Azithromycin or Augmentin XR (high dose) while your waiting to see Dr. Trifiletti? Advil helps my dd a lot. Too soon to say really, but dd has seemed to improve some since starting the Zith friday evening. We're giving 2000mg Augmentin XR and 500mg Azith each day right now.

 

Let us know how it goes.

Angela

 

Hi Angela and all.

This is my first post. We have an appointment with Dr. Trifiletti next week. Hard decision on who to go to.

My son Z will be 16 next week. He has been treated for tics for several years now on Clonidine. ADD and OCD were never treated because the meds could cause exacerbated tics. Z presents so "normal" that he was denied a section 504 even when appealed.

 

Last spring our wonderful pediatrician had him tested for strep after some odd behaviors in school occurred. Titers came back elevated and we was started on Penic. which his neurologist took him off of in August. Things seemed good until a couple of weeks ago when grades started falling and some behaviors were odd. Had him tested again and strep titer are again elevated. Neurologist will not treat for PANDAS. The pediatrician said we should find someone to treat the PANDAS.

 

After calling in many favors and speaking to several physicians, it seems that there are only a few folks who truly treat PANDAS. We look forward to the appt next week.

 

P.S. This feels really good to get it out and not feel like a crazy person when talking to friends and school officials who think I'm nuts!

 

-HeidiS