Wilma Jenks

My girl never gets sick, but recently gets a cold and somewhat sick EVERY TIME I start an abx. Has this happened to anyone?

has anyones symptoms ever gotten so bad that they had to do emergency IVIG?

she is 11.

Suzan...our stories are very similiar. Thnking of you...

Thanks for the words of encouragement. I will post Wed., after my meeting with Dr. Beals.

my child has been sick since birth. i am really late getting her help. i wonder if there is a chance to still get her help?

Not sure what else 2 use to get her to sleep. Her OCD is so severe, it keeps her up til 3am. The seroquel at low dose, won't get her to sleep, and if i go higher she gets mean mean and aggresive.

My child clearly needs to medicated, but they ALL seem 2 maker her so much more mean. Does anyone have this problem? I am really hoping Dr. Beals can help with this!!!

My child needs 2 b on some kind of medication 2 keep her stable, but they all (so far) make her so much more crazy? Has anyone experienced this?

My child would love 2 meet someone that is going through what she is. (Providing she feels good that day.)

When my girl was on Vanco. and Diflucan, she was more clear minded during the day and psychotic thoughts were less. At that time, her OCD at night was out the roof though! She is now on low dose seroquel, and the severe OCD is a bit better at night, but her racing thoughts are so severe and terrifying to listen too. Anyway.... I was thinking that adding the Vanco back in for the severe racing thoughts may help. Last night she had me say the same sentence over for 1 whole hour until I said it right and the intonation was correct. She finally got so mad at me 4 not getting it right that she through a glass of water at me. Not a good night. We see Dr. Beals this Wed. to see if Lymes plays a role in this. I have a gut feeling its PANDAS though, but I am not an expert. This is what we have to go on: Agitated as a new born and it got worse... Lump under her ear, the size of walnut, at ten days old. An MRI that showed only a sinus infection Abnormal EEG, but no seizures Restless Leg Syndrome Super acky ankles since she could talk High Clostridia Cam Kinase is 166 Ingenix test was questionable. I have to get numbers to post again, sorry. I had strep throat all the time as a kid, and had to have tonsils out. What are your thoughts?

what is TBI?

When my girl was on Vanco. and Diflucan, she was more clear minded during the day and psychotic thoughts were less. At that time, her OCD at night was out the roof though! She is now on low dose seroquel, and the severe OCD is a bit better at night, but her racing thoughts are so severe and terrifying to listen too. Anyway.... I was thinking that adding the Vanco back in for the severe racing thoughts may help. Last night she had me say the same sentence over for 1 whole hour until I said it right and the intonation was correct. She finally got so mad at me 4 not getting it right that she through a glass of water at me. Not a good night. We see Dr. Beals this Wed. to see if Lymes plays a role in this. I have a gut feeling its PANDAS though, but I am not an expert. This is what we have to go on: Agitated as a new born and it got worse... Lump under her ear, the size of walnut, at ten days old. An MRI that showed only a sinus infection Abnormal EEG, but no seizures Restless Leg Syndrome Super acky ankles since she could talk High Clostridia Cam Kinase is 166 Ingenix test was questionable. I have to get numbers to post again, sorry. I had strep throat all the time as a kid, and had to have tonsils out. What are your thoughts?

I had to, it has not helped. It has helped others though. I am trying anything possible 2 give this child relief!

Why is the PET scan so dangerous?

What LLMD did you use?

S. Smith does not want 2 do the steroid burst after he saw how my girl bounces of the wall and gets REALLY REALLY wild with so many meds/supps.

Thanks so much. I really appreciate the prayers and good thoughts. At least I feel like I am getting somewhere...

Are the Western Blot and Ingenex test the same test?

I have an app. with a Lyme specialist (Dr. Beal) and with PANDAS (second oppinion) specialist (Dr. Boulb) I was going to cancel one of them, once I got the Ingenix test back. Not sure who to cancel now. My child has high clostridia and 166 on Cunningham test.

FIRST PAGE 31 kFs IND 41 KDa + SECOND PAGE 39 KDa IND 41 KDa ++

FIRST PAGE 31 kFs IND 41 KDa + SECOND PAGE 39 KDa IND 41 KDa ++

what numbers do i post off of this test? it was done without provacation, but perhaps it tells us something. can u take a look?

The doctors office got the resuts... but I have 2 wait for his call. Waiting is soooooo hard.

Dr. T. checked the B6 and other things. I am pretty sure the B12 was on there. All looked normal...as usual. The only thing not normal was Cunningham test 166....Oat test showed Clostridia and an abnormal EEG. No seizures though. We are headed towards the IVIG, after a second opinion with Dr. B, and hopefully he can get it covered by insurance too.