Judy

[bmom]

Hi Judy, I had a question about the doctor your grandson saw in Las Vegas. We have an appointment with him in April, but I was wondering what he recommended for your grandson? I am thinking my son needs to be on propholactic antibiotic as this is his third go around with strep in a year and tics are in force now with this exposure. Did he put your grandson on daily Pen? What were his other recommendations? Did he mention anything on IVIG? Thanks.

[judy1270]

Hi Judy, I had a question about the doctor your grandson saw in Las Vegas. We have an appointment with him in April, but I was wondering what he recommended for your grandson? I am thinking my son needs to be on prophylactic antibiotic as this is his third go around with strep in a year and tics are in force now with this exposure. Did he put your grandson on daily Pen? What were his other recommendations? Did he mention anything on IVIG? Thanks.

 

Hi, bdcom.

 

He has my grandson on penicillin 3 times a day at 250mg and he has (CLONIDINE)0.1mg. 1 at night.

We go to see him on the 20th,, and I have lots of questions for him including IVIG.

This is very complicated and I am not sure want will happen at the appointment.

I don't like the clonidine it makes him to sleepy. So we have a lot to go over at his appointment.

I wish you luck.

Judy

[kkver]

Bmom

 

recurring strep reminds me my son had his tonsil and adnoids removed 2 years back as he was getting too much infection in them and they became large and caused sleep apnea.

[bmom]

Thanks both for replies. I am full of questions this month as everything is in full swing for us. Sorry.

Judy- I guess they put you to the head of the class at Dr. John's as they cant get us in until April. Good for you. Please let me know what you find out after your appointment as I am trying to figure out if he is a good match for my son.

kkver- Thanks also. My son had recurring strep when he was 3 and we saw a specialist who said his tonsils were actually small. He is now 9 so we are now heading back as it seems to be a problem again. Did removing the tonsils help with the strep reoccurance? I noticed you were the one who posted about Carol Matthews. That is the other doctor I am considering. Did you ever see her for PANDAS? If so, what did she recommend?

[kkver]

Dr Carol is one of the research doctors in SFO about PANDAS. Very hard to get into but if you can she is the one of the best on west cost. I spoke with her couple of times and when i told her about my son she said it matches with PANDAS. She does lot of research on it and keeps in touch with Dr Murphy in Fl.

Second if your kid is getting too much infections try using Xylitol, Xlear Nasal Wash frequently.

Xylitol is among bacteria’s natural enemies so can do prevention up to some extend. Use it once kids come back from school or playground , parties.

 

http://www.xlear.com/xlear/

[faith]

Judy,

Just curious, why did they give clonodine too? How do you know if it is the clonodine or the pen that is helping if you are giving both? Did his neck pain/tic resolve?

 

Faith

[bmom]

kkver- Well unfortunately the tics have never left. He started ticcing the same time that my strep was diagnosed. His was negative. His natropath tested 1 day later and said it was somewhere in his system. He has been on The Zithromax for 5 days and I did see a slight decrease yet they are there pretty strong still. Do you think the natropath would refill it??? How do you get it for 10 days? I have some Pen. that he never used. I could start him on that?

[P_Mom]

Bmom,

Did your son ever test positive for strep this time? PANDAS kids can have flair-ups from mere exposure to strep, not even having to actually contract the illness themselves. He could very possibly test negative to everything and still have a flair just from the exposure.

[bmom]

So, PANDAS moms, my sons titers were in the normal range. If his symptoms are an increase from my strep, would he still be in the normal range? Should I test again in a few weeks to see if they are going down?

[P_Mom]

"There may be at least TWO clinical reports on patients presenting with classic PANDAS symptoms, who tested negative on GABHS, but positive on Mycoplasma pneumonie. It has been our experience that the symptom recurrence can be induced by mere exposure to GABS with no clinical nor laboratory data confirming the infection."