Help for pediatrician appt in the a.m.!

[PANDASmcnuggetsw/fry/coke]

Hi friends,

 

Tomorrow a.m. we have to meet with a local pediatrician who I think is a PANDAS skeptic, but at least gave us a two week rx for abx last time. I'd like him to give us another two weeks rx, but was hoping I could point him to a study that it takes at least a month to fully evaluate an abx's effectivness for a child with PANDAS.

 

Can you pont me to anything like that? She is doing a bit better with symptoms and I don't want to cut off what improvement we have seen so far.

 

Many thanks!

 

PANDAS McNuggetsw/fry/coke

[PANDASmcnuggetsw/fry/coke]

Anyone? Anyone know? Ferris Bueller...?:-)

[peglem]

Not Ferris, and not exactly what you asked for, but this is the only official study I know about for long term abx for PANDAS:

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

 

Have you seen any improvement on the abx, so far?

[dut]

Hi - have a look at this case study, only 1 child but recent (2010) and cites 3 months, successful treatment

 

http://turknoropsikiyatri.org/PDF/2010/haziran/169-170.pdf

[KaraM]

While it's not a study, the FAQ that is under the helpful threads at the top of the forum was what I brought to our pediatrician, who was also skeptical. You can also find it at www.pandasresourcenetwork.org

Our doc found the document very "well written and reasonable."

 

 

Have you considered participating in Dr. Cunningham's study? That's a two to three week process and cost $400. But if you can swing it, the results are very valuable. Those results along with the FAQ are what allowed our doctor to take the next step in prescribing abx prophylacticallly.

 

Kara

[mkur]

There is a website http://www.pandasnetwork.org you should checkout. I think it's Buster's. There is a link to a Swedo lecture. It might help. Ask the doctor to email Swedo to see if they made any changes this week or Dr L.

Edited July 23, 2010 by mkur

[Mary M]

Weren't you consultng with Dr K? He should be able to get the prescription you need if you've consulted with him.

Mary

from Michigan

[PANDASmcnuggetsw/fry/coke]

Thanks everybody for the links and info! I will pull those up this a.m. And Mary, we are with Dr. k also, but as you probably know, he does not believe in the effectiveness of abx and says our daughter should go straight to IVIG.

 

Initailly the abx seemed to clear her sinusitus which she had for over two months, but this a.m. as we go to the doctor she is full of mucous again! As far as the OCD, we have seen ups and downs so far and don't want to give up yet, as it has not even been a full two weeks on it.

 

She is on 2,000 mg 2 x a day augmentim XR. She is 115 pounds and 5'6". :-)

 

I really wanted to try azith first, but doc would not go for it.

 

Hope this goes well!

PANDAS McNuggetsw/fry/coke

[PANDASmcnuggetsw/fry/coke]

Thanks everyone for the studies! I went in with copies in hand and I have a refill for two more weeks. Doc wants to bring in an allergist as he does not believe it is PANDAS. Tested daughter for celiac today. She did test postive for a mycoplasma infection, so not sure where that leaves us.....

 

Anyway, thanks! you all are wonderful.

 

PANDASMcNuggets w/fry/coke

[matis_mom]

Thanks everyone for the studies! I went in with copies in hand and I have a refill for two more weeks. Doc wants to bring in an allergist as he does not believe it is PANDAS. Tested daughter for celiac today. She did test postive for a mycoplasma infection, so not sure where that leaves us.....

 

Anyway, thanks! you all are wonderful.

 

PANDASMcNuggets w/fry/coke

If I understand correctly Augmentin will not take care of the Mycoplasma... you might want to check it out, you might have to switch to Zithromax or something else.

[PANDASmcnuggetsw/fry/coke]

Mati's mom,

 

Thans for that info. I was wanting zithromax, thinking that may be what we needed. Also, spoke with a family that used Biaxin for myco. I don't know if it is current or past infection, still waiting on that.

We are almost at 2 weeks on the Aug. and she is still having dark days. :-( Hoping to give it a month on the Aug. then find someobody else I hope who will give us the zith.

 

PANDASMcNuggests w/fry/coke

[dut]

Hi - could you telephone consult with another PANDAS dr who will rx abx.. such as Dr T or Dr L. IMO, if you can afford it, never hurts to get more opinions and you can get an abx that will sort the myco...and consequently, hopefully, reduce your dd's PANDAS symptoms.

[PANDASmcnuggetsw/fry/coke]

Dut,

 

Yes that is a good idea. I think our next call will be to Dr. T if I strike out locally.

Thanks for your input! :-)

 

PANDASMcNuggests w/fry/coke

 

 

Hi - could you telephone consult with another PANDAS dr who will rx abx.. such as Dr T or Dr L. IMO, if you can afford it, never hurts to get more opinions and you can get an abx that will sort the myco...and consequently, hopefully, reduce your dd's PANDAS symptoms.

[peglem]

Dut,

 

Yes that is a good idea. I think our next call will be to Dr. T if I strike out locally.

Thanks for your input! :-)

 

PANDASMcNuggests w/fry/coke

 

 

Hi - could you telephone consult with another PANDAS dr who will rx abx.. such as Dr T or Dr L. IMO, if you can afford it, never hurts to get more opinions and you can get an abx that will sort the myco...and consequently, hopefully, reduce your dd's PANDAS symptoms.

Is Dr.T even around these days?

[kimballot]

Thanks everyone for the studies! I went in with copies in hand and I have a refill for two more weeks. Doc wants to bring in an allergist as he does not believe it is PANDAS. Tested daughter for celiac today. She did test postive for a mycoplasma infection, so not sure where that leaves us.....

 

Anyway, thanks! you all are wonderful.

 

PANDASMcNuggets w/fry/coke

 

An allergist is a good idea... but please know that having allergies does not rule out PANDAS - allergies and PANDAS often go hand in hand... both are immune system problems. For us, Dr. B said we should first get rid of any infection with antibiotics, then treat allergies aggressively, then do IVIG. I know all docs are different, but he is an allergist and knows PANDAS so we decided to follow his advice since we had years of allergies and sinusitis and we knew they led to PANDAS symptoms.

 

Are you seeing an ENT also - for the sinusitis? It sounds like it is not clearing well. An ENT would likely keep on on antibiotics longer and may be helpful in clearing the infection.

 

Also - ditto the azithromycin or biaxin for mycoplasma post.