philamom

Great to hear about the improvement Linda. Can you tell me the name of the Quest test ordered? Also, do you use S. boulardii probiotic (good yeast)? Thanks.

Thanks Nancy!

Being without power due to hurricane and dealing with a child in a flair, my mind is mush right now. Looking for some easy to understand articles on PANDAS for dd's teacher. Need to keep it light since I am dealing with some non-believers within school system. I printed the article from ocdfoundation.org. I'm looking for one that explains further flairs (not major onset) with illness, exc. Another day dragging my daughter crying into school with deer in the headlights look - all for 2 1/2 hrs

He is not taking new patients - at least not in his Springhouse location.

Thanks Pandasphilly- that is so kind! Our power was restored last night. We have a school meeting this morning, so will get back to you later today.

Just wanted to say I'm thinking of you. Hoping your daughter feels better soon!

Pandasphilly- we have been without power since Monday. I'll send you a pm tomorrow.

It's been a while since I needed a sleep aid for my daughter. She usally starts crying nonstop from 8:00pm on, and I'm looing for a break at that point. Can you tell me the dosage for melatonin again. My daughter is 11 yrs old and around 70lbs. Also, any other types of sleep aid suggested? Last night I tried a homeopathic remedy but ended up giving benadryl around 10:30. Thanks in advance.

It was denied after submitting. I forget, but I think the lab could not provide the information they were asking for. I'd also be curious if anyone got reimbursed. It may be worth revisiting the claim.

No reimbursement here.

Thanks for the info. Had a phone consult with doctor today. We are going to try adding zith back on Thursday. Please send a prayer that it doesn't bring us a drug induced lupus flair. She is very,very tough right now - non compliant, won't brush/wash, exc. Begging to be placed with a foster home

Never heard of them -who are they by? thx

Any suggestions on a parasite treatment I could order myself? It would need to be mild as my daughter reacts to all vit/supps/abx. She has daily nausea and a severe fear of vomiting, so am worried about anything that may increase the nausea. Her liver functions are normal right now but were very elevated last fall/winter. One of them is rising again (slightly abnormal). Her Sed Rate which was in high 90's fall/winter slowly decreased to a normal level, but now increasing again (only at 25 though). My dd vomited after her last two IVIG's which is kind of odd, since she's been getting them for some time now and has not vomited. Dr. B thinks she has strep and the Amox she is currently on is not treating it. Wants her back on zith, but it may have caused a drug induced lupus reaction last Dec. and I'm afraid of all the physical symptoms it caused. The symptoms didn't go away for months after stopping it. Her aso/d-nase is in the normal level but increasing: ASO- 26,45,46,87 D-nase- 214,237,246,274 But symptoms I am presently seeing remind me alot like when my daughter had giardia and c-diff 2yrs back. I had her tested through Quest a few times which is normal. So I keep coming back to this parasite result.

Actually, I want to thank you for sharing this. I teared up because I feel the same way right now. My daughter is extremely defiant/oppositional - think she is dealing with strep again. I actually dread my time with her (which is just about all day). Sorry to say that. She started with bipolar-ish symptoms earlier this month, and now after her last ivig, she is just very, very angry. edit- sorry, not exactly a pep talk

May want to check for c-difficile - toxin A & B.

I suggest adding a probiotic that contains Lactobacillus rhamnosus and Bifidobacterium bifidum, along with the Florastor. All three are known to combat c-diff. IVIG has been used in severe cases of c-diff.

Same boat here - it's awful. It's costing me a small fortune on the rewards used to persuade my daughter to attend school for the limited time expected, and she still needs to be forced most days. This is with her choosing the easiest time for her. We both have bruises from Monday's fiasco - that day she said she would rather be placed in mental institution than attend school (she wasn't kidding at the time). She has a severe phobia of vomiting and threw up Thursday evening - which made things even more difficult for her. The school called our psychologist on Monday to complain that she is not attending (increasing) enough hours, even though I've successfully gotten her to school every day (since our meeting 9/27) for atleast 90 min- 2 1/2hrs, except during IVIG and the day after she vomited. So, I'm also offering prayers of support!!!!

I would love a copy - thank you.

Is she still testing positive for c-diff? The doctor should continue with flagyl or prescribe Vancomycin. I found the probiotic "Klaire Ther-biotic Detox Support" to be very helpful. We also use Florastor, Culturelle, Integrative probiotic pearls. Florastor alone did not prevent my daughter from a relapse of c-diff (after having it when she was younger). Btw- my daughter was never placed back on Augmentin after she got c-diff from it, but was able to take other antibiotics - we strengthened her gut with high dose cfu's first.

Connie Strasheim has just published a new book "Beyond Lyme Disease" written for people who tried everything but are still sick.

You could call them and ask questions. They took my calls. My daughter's results say: Patient blood culture displays positive growth of spirochetal organisms in the blood which stained positive via immunohistochemical method using polyclonal antibody for Borrelai burgdorferi. Then we received a picture of the Spirochete/Borrelia Culture. It had three spirochetes in it.

She is beautiful, What a great smile!!

If anybody is on FB...one thing PANDAS families are doing is posting pictures/stories of their PANDAS kids on BCH's page...so feel free to add to it. http://www.facebook.com/BostonChildrensHospital?ref=ts&fref=ts TO see what I am talking about, go to "recent posts by others" (right hand side) and click "see all". delete

ditto

She is not gluten free. <Dread> She is already an extremely finiky eater, and in the past has lost weight due to flairs. Quest blood draw: C Albicans IGG 1.1(H) and IGA 1.3(H). Quest stool OVA/Parasites: Many yeast found. Quest stool Fungal Stain: No fungal elements seen. Started her back on Nystatin, but boy did she flair. Worse than previous time in the beginning when on it. We took her down to one Nystatin pill daily.