Wilma Jenks

Williams mom. You can vent anytime u want. I just recently got my girl to take a shower after years of not taking one. Now... she won't stop taking them. She has always had confusion, OCD and raging since she was born. It is so hard either way... How does your child do socially? Did the first IVIG do any good?

What did the endoscopy show?

Thanks so much. Yes, Ingenex is due in the week. I am CAN'T WAIT!!! I will let you know right away what I find. Thanks!!!

Pdoc. has my child on seroquel to get her to sleep. The stuff is getting her depressed. A bit worrisome. Anyway... I was trying to figure out why this kid never falls asleep at night. Weather its the clostridia or PANDAS. When I treated with Vanco. for clostridia, I saw her get much less psychotic (but not tired), and the OCD got severe at night. So I am thinking that the OCD is what is keeping her up and its related to the PANDAS. In which case, until I get some IVIG, I may not see any improvement with this severe OCD and NOT sleeping. My problem is, is that I have read on some posts... that the one thing IVIG DOES NOT help with is the OCD. Is this true in most cases? I am getting a second opinion from Dr. B on the PANDAS thing and we are moving towards the IVIG, but not completely sure that is what we are going to do.

I am not sure what to do. Ugh! She looks pretty good during the day when on the Vancomycen, but her OCD is still severe at night- keeps her up until after midnight. Not sure how to get her to sleep without psych drugs. melatonin is useless.

Seroquel seems to be making my girl MORE aggressvie. Have others seen this?

I am so eager to see the results of this thing. Any ideas how long it takes 2 get results?

I am taking my child to see him in a few weeks and would like to gettin some info. about him. I have seen dozens of doctors already, so any help would be greatly appreciated. thanks

My child has high levels of Clostridia on her test, but it is not the C-Diff type. The Clostridia that my child has makes her psychotic. No diearreah etc.... Does anyone have the same situation.

My girl has high levels of Clostridia, but not the C-Diff. type. No diarrhea etc... I was wondering if anyone knew of a support group that talks about mainly Clostridia and agresive behavours in children.???

I can't get high doses of ANYTHING into her, without her going completely crazy. All the doctors we work with, try to accomplish this, because they don't thing they can do it... but finally they give in and tell me to cut back on stuff. Her little body can NOT handle meds/supps., especially in high doses. I am only able 2 keep her somewhat stable with tiny bits of things. She has closridia, that may be the cause. Not sure.

What are some of the 1st things doctors tyr if you test possitive 4 lymes. Is it very similar to the treatment 4 PANDAS?

That's just it. I never see her get a virus or strep. She has really never been sick that I could visually see. One time she had a fever. I thikn it was at ten days old. She was sick from birth. I remember the first few nights of her life. She was wired and could not sleep and has never changed. At ten days old, she had a walnut sized lump under her ear. My gut tells me tht was some kind of infection or something. Surgeon said a pulled muscle. I think I am right though.

the only labs that show anything is her Cam Kinase test and she shows high clostridia. all other tests r fine. no strep or any of the other stuff people talk about. all blood work comes out fine. does anyone else have this?

My child's labs are pretty normal. No strep or any of the other stuff people talk about. Just the Cam Kinase being 166, high clostridia and REALLY WEIRD behavoiur. Does anyone have a similiar situratin. We are still waiting for the Lyme test to come back.

Can you let me know what your experience has been with Dr. Beal?

what have people tried 4 intrusive thoughts? it seems they don't get severe until around night time, after she gets tired.

she is up so late every night with OCD and racing thoughst. she is on: 8mg. lamictal Rilutek (small amount) 125mg. Inositol 6mg. melatonin 25mg. seroquel Pinch of Culturelle. I need 2 stop the OCD in the meantime, while finding out how to treat the possible PANDAS, and also look into the Lymes thing. What have you tried that worked?

I think that may be what it is. Do you know how to read these. If so, could I email it to you?

What is Dot Blot and PCR urine? Is this a part of the Ingenex test. So if the Igenex test is negative perhaps I should continue on and do provocation next? Or I guess I should have done it from the get go???

These numbers were from some blood work. I guess I will wait and post the results from the Igenix test instead. Thansk

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On my girls lab, it says... Possitive: 5 of the following Borrelia-specific bands:18, 23, 28, 30, 39, 41, 45, 58, 66, and 93

When I told Dr. K, that my child had a possitive band 41,on a blood test, he said it was unlikely that it was Lymes. We just did the Igenex test yesterday. Can't wait 2 c what it says.