Looooong Exacerbation

[SurfMom]

Elaborating further on my thoughts

 

While most kids get sick with strep, colds, flu, walking pneumonia, bronchitis, etc. some kids like mine suppress the illnesses with their over-vigilant immune systems and never appear to be sick. Instead the bacteria and viruses go undetected for months giving them ample opportunity to mimic healthy cells, reproduce at alarming rates and in some cases possibly mutate. What we get instead are bodies wracked with asymptomatic diseases and systems going haywire causing encephalitis. Their then overloaded immune systems weaken resulting in susceptibility to even more pathogens. My daughter, for example, exhibited allergy symptoms for the first time in her life which I believe was due to her weakened state and then an over-zealous histamine response. What we are looking for is immune modulation or stasis that will allow for a normal pathogenic response. It also means we are going to have to figure out whether they are "sick" with pathogens through frequent periodic titers and blood screenings.

Edited January 21, 2013 by SurfMom

[SurfMom]

Updating....

 

DD15 saw the ped neurologist yesterday and like me, her gut is telling her that with the specifics of her abnormal EEG (the results of which we just got yesterday GRRR), we need to move on to the next level of diagnostics since we cannot break this flare after weeks of penicillin, azythromycin, cefdinir, and amoxicillin (which worked the first time).

 

The neurologist is recommending Duke as they are both PANDAS/PANS experienced, have a new autoimmune center and would be more than willing to broaden the circle to see if there is indeed something more going on.

 

We are going for the big enchilada of testing before moving on with steroids and IVIG but we are rapidly moving in that direction too.

 

DD15 is worse today. Tics are now becoming choreiform movements and she can't process many simple instructions (like take this towel to the bathroom).

Edited January 24, 2013 by SurfMom

[LNN]

I'm so sorry for her continued decline. One caution - unless something dramatic has happened in the past few months, Duke is neither Pandas experienced nor Pandas friendly - at least not in their mental health departments. Perhaps you'll have better luck via the autoimmune route. But if you happen to get the feeling they're steering you in a direction you don't want to go, don't assume it's because they know Pandas. Trust your gut. You might want to schedule an appt. with dr Latimer in Bethesda MD - a neurologist with ties to Georgetown and exceptionally Pandas knowledgeable. It's worth the travel.

 

Good luck!

[SurfMom]

LLM, thank you for your honest input. That is exactly the kind of opinion I am looking for. We have been spending the day researching centers and doctors that we think will be DD15-centered instead of data-centered (which was our experience with the disinterested, outgoing physician we saw in our 50 minute appt. for which we flew to Rothman).

 

 

Thanks for the recommendation on Dr. L. about whom I have been reading this morning.

[LNN]

I have enormous respect for Dr L and owe her a ton of gratitude. She saved my sanity more than once in the early days. She is awesome when you're with her. But do realize that her achilles heel is returning calls. If you do see her, be very prepared with your questions and make sure you have everything you need before you leave her office (a full understanding of scripts, renewals, what Plan B is if Plan A doesn't work before you see her at a follow-up appt...) It's very difficult to make contact in-between appts. I don't say this to dis her. She's very balanced and wise. But everyone has their weak points and returning calls is hers. So just go in knowing that. You often need to call several times in a week. We stopped seeing her because she's 600 miles away and because DS was eventually dx'd with Lyme, which she doesn't treat. But she was my lifeboat for the first two years.

[tpotter]

I'm so sorry for her continued decline. One caution - unless something dramatic has happened in the past few months, Duke is neither Pandas experienced nor Pandas friendly - at least not in their mental health departments. Perhaps you'll have better luck via the autoimmune route. But if you happen to get the feeling they're steering you in a direction you don't want to go, don't assume it's because they know Pandas. Trust your gut. You might want to schedule an appt. with dr Latimer in Bethesda MD - a neurologist with ties to Georgetown and exceptionally Pandas knowledgeable. It's worth the travel.

 

Good luck!

 

 

I will second LLM's responses 100%. When you see her, make a followup appointment immediately. And, if you feel that you need to talk to her in between appointments, I would go ahead, and get an appointment (you can ask the office staff if there are any cancellations to get in sooner at that point.)

Edited January 23, 2013 by tpotter