philamom

The only doctor who doesn't dismiss PANDAS at CHOP is Dr. Elia. And, she is not aggressive enough...wait until completely non-dysfunctional or just treat episodes with 1 month of abx...no proph. But she is Very Nice and will diagnose the child. I say go straight to the best doctors (Dr. K, Dr. B, Dr. L)!

We did the 5 day steroid burst prior to IVIG last year and it made my daughter manic. We then proceeded with IVIG with Dr. K and saw a 50% improvement. When back in school she has hit with some illnesses and lost some of the improvement. We recently did 2 more IVIG's with Dr. B and saw great results. Yes, I think you can have success with IVIG even though you had bad results with steroids! One other thing to consider, steroids can aggravate Lyme. You might want to test for Lyme thru Igenex. We are now dealing with Lyme and are currently seeing a herx reaction from the zith she is taking for it. Hang in there!

Faith- We did the c-difficile stool tests thru Quest and our insurance covered it. Their Lab detected it three times so it must be pretty relaible. Though, I am now considering ordering the MOAT test to see my daughters markers. If I remember correctly, did you try Zithromax and have a poor response? We are on it now for the Lyme and have been dealing with increased symptoms---have in the past too when we tried it (always gave up after 10 days). It could be the Herx reaction because Zith is a Lyme treating abx. We also had a negative Quest Lyme test prior to us receiving the positive Igenex. Keep posting Faith and I hope today is a better day!

Faith- My daughter recently had two IVIG with Dr. B and has made some amazing progress but still struggles with certain behaviors/symptoms. We just received a positive Lyme testing thru Igenex and will be seeing an Integrative doctor next week. I read your questions about c-diff. My daughter had c-diff and we've seen remarkable results from the flagyl. You could ask your DAN doctor to run a stool test or as Caring Mom mentioned in another post, you could order a urine test from Great Plains Lab. Hopefully, she'll chime in with the specifics. Please keep us posted and hang in there! Just curious - was he tested for Lyme by Igenex?

I found this link helpful. http://www.canlyme.com/labtests.html

Thanks Buster- On #11 Would've liked to put down more compulsions. On #12 We did two steroid bursts nine months apart (one effective, the other not). On #15 We didn't learn of PANDAS until 3 months after onset and was told not to bother confirming GABHS. We did however, get resolution of symptoms because child was being treated for bacterial infections with abx. Episode 2 we did have confirmation with throat culture. On #17 Was unable to select two answers. Also did prednisone burst right before Cam Kinase test.

Faith- I've been a guest on the forum (periodically checking in) for about a year and was wondering where you've been. I miss all your inquisitive questions! I'm sorry your son's vocals are increased. Is the probiotic he's taking something new? I know your not sure if your son is Pandas, but check and see if it has the strep ingredient. My daughter was recently prescribed a probiotic (900 billion cfu per serving--yes 900) with the strep ingredient and I noticed a huge increase of symptoms which resolved 3 days after discontinuing. I don't know if was the strep or just too much of the probiotic too soon but I switched to a different brand. Just a thought. Of course it's probably unlikely for you, since the symptoms started 3 weeks into the regimen. Melinda

Great idea witht the Pepto. Do you think it's the normal amount she recommends? I add the clay with applesauce and a lot of cinnamon. If she notices me adding the clay, it's an effort to get her to eat it. Maybe I could alternate every other day? Melinda

Thanks caring mom- I've been trying to give her 1 tbsp of bentonite clay daily, but it seems the more things she takes the more she complains of pains. The Zith must be causing the diarrhea because it begins shortly after taking it. I now give it to her at dinner time so she spends less time in the bathroom. Is activated charcoal the same as the clay?

Thank you Marybeth!! I just want to try and be as informed as I can before deciding if more abx are warranted. I'm sure the doctor will want to run additional blood tests. The zith we started 20 days ago is starting to wreck havoc on her system giving her diarhia again. And of course, that increases her anxiety, which increases her seperation anxiety. I do have to say, that she experienced herxing when we first started the zith and at previous times when we tried it before (which may be a sign of Lyme). We also still need to run the Babesia Fish co-infection test. Melinda BTW- Is there a spell check here? anyone

Breastfed

I agree...beautiful post. I am also forever grateful for all the help I received from this forum (amazing Mothers and Dads). I will Never, Ever forget Diana who led me to the right path instead of psychotherapy drugs. <HUGS>

On my daughter's Lyme IgM Western Blot test result, there is a statement "Limitation: Infection with HSV, EBV, HCV and/or syphillis (RPR+) may give false (+) results." Can anyone elaborate on this? Should my daughter be tested for these before starting Lyme protocol? Just wondering. Melinda

What treatment was done for your daughter's positive EBV and CMV? Let me know how you make out with your appointment next week - I'll be thinking of you. The reason your daughter's OCD increased while on Zithromax could be due to herxing. My daughter's ocd increased on Zith as well. BTW- Where is Lititz, Pa? Melinda

JT MOM- Thank you for explaining...very helpful! I'm going to research those protocols and inquire with the integrative doctor we see next week. By chance, is the top pediatric LLMD located in Cochranville? Melinda

You can call IgeneX and ask about the timing. I THINK they said 7 weeks would be fine the last time I spoke with them.

Kelly- That's wonderful! Thank you for all that you've done...this is going to help so many! Also, my belated thanks to Vickie, Jill and karen Melinda

We don't have an appointment with Lyme doctor until next week but was hoping someone could explain this test to me. My daughter was positive for Igenex IgM Western blot and negative for IgG test. Then we ran the Lyme 31 K Da epitope test and it was negative. Co-infections were negative (didn't run babesia). Is there any chance this is Not Lyme. Appreciate any advice. Melinda

Can you help explain to me the relevance of the IgM 31 kDa Epitope Test. My daughter's came back negative. On the IgM Western Blot, she was positive for 31,41,58; double positive for 83-93 and Indeterminate on bands 34,39. On the IgG Blot, she was positive 41,58 and Indeterminate on 83-93. Co-infections were negative. All testing done with IgeneX. Thanks!

I sent you a pm.

Is it working? Is it also good for ocd?

PM sent.