Our PANDAS story

[thereishope]

It's actually not uncommon to find doctors who will diagnosis PANDAS or agree to the diagnosis, but will only give an antibiotic for a + throat swab. Even then, you get 10 days and that's it. They say there's no research to show a longer dose is needed and tune you out when you explain to them they are wrong. Same w/ prophylactics.I know EAMom already posted the link about amoxicillan failure in strep, but some doctors are just convinced if they didn't find the info ,it's not worth reading.

 

 

I'm so sorry your family has gone through this! But I'm glad you posted here - you will find a lot of information and support.

 

Am I reading this correctly - several doctor's diagnosed PANDAS, but none ever prescribed antibiotics? Did they check titers, swab his throat or run immunology blood work? Unless I'm misreading your post, it sounds like you found doctors who believe in PANDAS and believe your son has it, but have no idea how to properly treat it.

 

I agree with others here - you should either consult with Dr. Elizabeth Latimer or Dr. Kovacevic in Chicago. Both will do phone consults and I believe Dr. Kovacevic is within driving distance for you. In the meantime, read as many old posts as you can on this forum and you will start to get a clearer picture of what needs to be done. Also, post specific questions that come up and someone WILL answer.

 

Here is their contact info:

 

Dr. Miroslav Kovacevic

Chicago, Illinois

www.webpediatrics.com

(630) 986-1010

 

Dr. M. Elizabeth Lattimer, MD

6420 Rockledge Drive

Suite 4920

Bethesda, MD 20817

(301) 530-9200

[Buster]

we increased his Citalopram 2 in Sept. 2007 to 10 mg. in the a.m. and 15 mg. in the p.m. The OCD almost completely went away with the increased Citalopram dosage and the passage of time.

...

 

Any thoughts, folks?

 

Tears well up in my eyes when I read your post. I can't believe how terrible your history has been.

 

We too had that moment in the hospital where the "kind nurse" took us aside and told us we were likely looking at long term care at a psychiatric center. I still remember arguing with the doctor that "he will test her for strep." I was so insistent that when I later pulled the hospital records, the doctor's notes say "At parental demand, we tested for B12 defiiciency and GABHS." The doctor was really shocked that the test came back positive and even more shocked when our dd7 got better on Augmentin -- she wasn't back, but 24 hours after Augmentin she smiled. It took us a while to realize that Amoxicillin was *not* a good prophylaxis choice for us/for this strain, that 10 days of "normal" dosing didn't clear her, .... It took azithromycin to really change the situation for us (and maybe high dose Augmentin would have worked). Bottom line is the NIMH website just has to change. It just is unbelievable that doctors are willing to put kids on atypical antipsychotics with horrible side effects and won't try 30 days of an antibiotic. Argghhh....

 

My point in all this is please, please, please find a doctor who will listen to your story. Dr. K or Dr. Triffiletti or Dr. Latimer -- all will listen to you and give you good guidance. There really is hope and there really is a parting of the storm clouds....

 

Buster

[matis_mom]

You've gotten a ton of good advice already... I would just like to add that even though the idea of having to travel to see a specialist might be overwhelming, Dr. K and Dr. L really want to help people out, and have plenty of experience with PANDAS. I would also suggest you find a pediatrician who will listen. I don't know if you have other children, but it is very important to keep strep out of the house, and you will need someone who understands this and is willing to prescribe antibiotics as needed. Some of us have found that if you get a diagnosis from a specialist, and they send a note to your pediatrician, then they'll listen. Other have found that bringing in some articles helps if the doctor is willing to learn. Others have had no luck with their pediatricians. My point is, don't waste your time if your doctor doesn't get it. If they will not prescribe antibiotics, move on to another practice (or maybe just another doctor in the same practice?)

 

But have hope! You already know your child does well on Zithromax, that's a huge piece of the puzzle, finding which antibiotic will work. Now you just have to find someone to prescribe it long term, and maybe look into other treatment options like steroids/IVIG/Plasma exchange. Some people have had good experiences working directly with an immunologist.

 

Try to put those horrible experiences behind you and trust that things will get better.

[T_Mom]

Reading your story I felt your experience all too clearly--

 

No one could make up this type of a Pandas story...truly it is amazing when you read such an account.

 

I want you to know that there are a number of families who have had similar experiences and now have kids that are essentially healing or well-again after long term full strength antibiotics, and/or steroids, IVIG, or plasmapheresis.

 

Read the www.pandasnetwork.org website for more information, and be encouraged. Welcome.