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Just got back from the infectious disease md


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We just got back from the MD.He is a PANdS BELIEVER but that dosent mean he believes danny has it. He went through all of his blood work believes the titers need to be higher than they present.Also Dannys ticcing like mad using all the words .The MD wanted to know what I wanted to do.I truly think I knew as much as he does if not more Dan is showing signs of returning to baseoline symptoms are simular to before IV The Md did put him on clyndimicin for 10 days 3x per day we will see him in 12 days .We will then re evaluate what to do.I want to do the iV monthly what do you guys think.He did sooo well for 2 weeks almost no verbal tics and behavior and language, OCD was great!!!Md said tht IV runs out every 30 days Is that true? Im so upset I did drop some names witht his md he knows I know that your titers dont havre to be high.Is clyndymicin a good choice.

 

Please respond

 

Melanie

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We are in the middle of a 10 day of Clyndomycin now...seems to be working but too soon to really tell...just make sure your son drinks plenty of water with it...8oz with each dose...it is a pretty strong antibiotic.

 

I don't have any advice on the IV...but Alex's bloodwork originally came back pretty low too...but our neurologist said he wasn't going to just go by the lab results...he was looking at the whole picture...OCD symptoms and tics following strep infection...meant PANDAS or some subset...his labs just meant he was at the low end of the spectrum...he just got strep again...and is ticking like a madman after months being symptom free...

 

Good luck

--Lisa

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Melanie, did you ever do the Cunningham tests? It might be worthwhile if you haven't....even if your son just had IVIG, you might still have some kind of elevation that would convince the doc. Do it b-4 he has more IVIG though...

 

Lisa, what labs are you talking about, reg. strep titers or the Cunningham tests (CaM kinase ll)?

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Lisa, what labs are you talking about, reg. strep titers or the Cunningham tests (CaM kinase ll)?

 

I don't remember which ones specifically...but will have them in my hands soon enough and will let you know...I just remember his comments...the strep titers came up elevated...but he did have a confirmed positive strep culture 8 weeks prior...that was what convinced him it was PANDAS despite the other test results...in hindsight I should have paid more attention to the labs...but i had a doc, diagnosis...and a course of treatment, so I didn't.

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It could take 3 weeks to get the results once you mail in the serum.

 

Once you mail in the serum, you can go ahead and repeat IVIG, you don't need to wait for the results...if your doc is willing to do IVIG anyway. Once you get the results, then you can use them as evidence of PANDAS (if the results are still high).

 

If he wasn't PANDAS, did you ask your doc "why would he respond to azith. and IVIG?"

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It could take 3 weeks to get the results once you mail in the serum.

 

Once you mail in the serum, you can go ahead and repeat IVIG, you don't need to wait for the results...if your doc is willing to do IVIG anyway. Once you get the results, then you can use them as evidence of PANDAS (if the results are still high).

 

If he wasn't PANDAS, did you ask your doc "why would he respond to azith. and IVIG?"

 

 

So what your saying is if a child responds to the antibiotics and the IVIG then its proof enough ? Hes not saying its not PANdas hes just not positive,He never met danny before yesteday .I did see cunninghams office is closed does that mean no tests? Do you think clyndimicin is a good choice? Hes allergic to pennicillin.Zith was good but he wants to try this one.

Thank You

Melanie

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Melanie-

 

I think Clindamycin is a good choice. It is very similiar to Zithromax (Zith is a macrolide, Clindamycin is a lincosamide).

 

I would keep a detailed account of how Danny responds over the next week to the antibiotic. Then you can show your physician how well he responded as evidence to give you daily Zithromax. Maybe you could get your physician to call some other physicians who know that high titers are NOT needed to diagnose PANDAS (I forget who- is It Dr. Latimer?, Dr. Leckman?, Dr. Swedo?, Dr. K?)

 

Are you giving him Ibuprofen also? He could take 600mg every 6-8 hours.

 

Colleen

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Melanie...e-mail Kathy Alvarez at Dr. Cunningham's office TODAY and see if it is possible to squeeze in a test b-4 the lab closes.

 

If not, then you might ask her if it is possible to have the blood drawn, spun down, and refrigerated (maybe at home)...and then you could ship it in Jan once the lab reopens. Just a thought. That way you would have a sample b-4 he has more IVIG.

 

Melanie, if you son responds to antibiotics or IVIG, it is either 1) PANDAS 2) a big coincidence 3) some other neuropyschiatric dz that responds to the same treatments as PANDAS.

 

I think it is PANDAS.

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Melanie-

 

I think Clindamycin is a good choice. It is very similiar to Zithromax (Zith is a macrolide, Clindamycin is a lincosamide).

 

I would keep a detailed account of how Danny responds over the next week to the antibiotic. Then you can show your physician how well he responded as evidence to give you daily Zithromax. Maybe you could get your physician to call some other physicians who know that high titers are NOT needed to diagnose PANDAS (I forget who- is It Dr. Latimer?, Dr. Leckman?, Dr. Swedo?, Dr. K?)

 

Are you giving him Ibuprofen also? He could take 600mg every 6-8 hours.

 

Colleen

 

 

Im going to have to get some proof that titers dont have to be elevated.Does anyone have any written info published studies thay say that ! He does get advil but only 200mg in the am I will increase it after he gets off of the zoloft

 

Melanie

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