Recent onset two weeks ago

[cdgalusha]

I believe my dd has PANDAS. It started about two weeks ago. Her Step titer level is 722. Unfortunately, her doctor does not know much about PANDAS. She did put my daughter on Cedifnir (forgive the spelling) 5ml daily for 10 days. Just wondering if this is an appropriate dose. She has been on it five days so far with no decrease in symptoms. I just want to make sure we do everything right especially with her onset being so recent. Any help would be greatly appreciated. I am just praying to GOD that she is back to herself soon. Thanks.

[nicklemama]

Welcome to our forum. How old is your daughter and how many milligrams are in 5mls of the cefdnir? You are fortunate that her doctor recognized PANDAS. That is a huger hurdle. I recommend going to pandasnetwork.org and choosing some of the articles and peer reviewed literature from that site, copy it and take it to your pediatrician. I also recommend you consider trying to get into the NIH research IVIG trial. Info is found at pandas network. Lastly, I would recommend you try and find a PANDAS knowledgable doctor in your area for treatment. Let us know where you are and maybe some names can be recommended.

 

I know you are eager to see your daughter get better. Five days is not long enough to see major improvement. Look for small improvements. She is going to need at least 30 days of antibiotics before you can expect to possibly see major change. It will happen slowly over the course of taking the cefdnir. If you don't, a different antibiotic needs to be considered.

 

I would also caution you not to count on a dramatic and lasting improvement. Take it one day at a time. You are ahead of the game by being diagnosed so quickly after onset. It took me a year to get my son diagnosed and treated. Prepare yourself for what may be the long haul. Some kid get better and move on, especially diagnosed early. Some don't and its a long process. I don't want to discourage you, but keep an open mind about how things may go.

[cdgalusha]

Thank you. I have OCD myself, so I first wondered if this could just be regular OCD, but had read about PANDAS while researching my OCD. I believe GOD had a reason for me reading that now! When my daughter starting having the OCD symptoms along with the hyperactivity, defiance, etc, I remembered she had Strep back in late December and remembered reading about PANDAS.. She is on 250 mg of Cefdinir once daily. It just breaks my heart to see the change in her. She will be four years old in three weeks. BTW, her culture was negative for Strep, although the titer was elevated. Is this common In PANDAS? Thank you so much for the information.

How is your son doing and what antibiotics did you use, if you don't mind me asking? My daughter is allergic to Augmentin, so she cannot take the regular Penicillin drugs.

[nicklemama]

Very common for the culture to be negative. My son was 5 when this started. He is now 9. He's doing pretty well right now. He started off taking biaxin. Took that and was then placed on azithromycin prophylactically. That wasn't enough and he started taking azithromycin treatment dose every day. Had IVIG 7 months after it all started and was placed on augmentin prophylactically. Had a few illness here and there and would go back to treatment dose for a while. Caught pneumonia last fall and had a terrible exacerbation. Had IVIG again. Discovered about a month ago that he has ehrlichia, anaplasma and babesia infections from a tick bite that we never knew about. Currently he is taking augmentin and biaxin.

[airial95]

I agree it may take a bit longer to see improvement, we saw changes about 2 weeks into our first month of treatment for our son. My daughter is also allergic to penicillin and uses cefdinir, and again, it usually takes her about 2 weeks from starting abx for us to see her start coming out of her flare.

 

I would recommend you start keeping a journal of symptoms and tracking daily progress. That helped us immensely in the early stages to not only see what was/wasn't helping, but also to identify strep related patterns. (for example - when ever my 5 yo son wets the bed he is + for strep - 100% of the time. Now if he wets the bed, we immediately take him in to be checked before symptoms get worse).

 

We used a numerical scale (helped take the emotion out of it) and tracked in on an excel spreadsheet. It helped us see that even with ups and downs, our bad days still were getting progressively better. If you are interested, I can email you a copy of the spreadsheet we used, just PM me your email address and I'll send it over.

[cdgalusha]

Thanks so much for your responses. It is so helpful to know we are not alone and to hear how other children are doing and what works. That spreadsheet would be nice. I will send you my email. BTW, I am in Little Rock Arkansas, in case anyone can recommend a doctor. Thanks again.

[peglem]

If you are NEW to PANDAS, you might be eligible for the ongoing NIH study!

For more information go to:

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

I have heard only good things from anybody who has participated.

[airial95]

Good call peglem - they only need 2-3 more families I believe...