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[Chemar]

Good to hear from you Dara and so glad things are going well.

Hope you will have a very successful experience when you visit the Pfeiffer clinic

 

 

Andy, I feel for you and your dear son with the gasping tic! Accupuncture and reflexology were REALLY helpful when my son had that one. It really seemed to have a very calming effect on what I call the "intensive" tics

[Dara]

Hi Everyone,

 

Yes, it's the phantom member Dara again. Hope everyone is doing well. I just wanted to update everyone on our appointment this past Tuesday, May 10th at the Pfeiffer Outreach Clinic in Annapolis, MD. It was a great experience!!!! My thanks must go out to Claire. Thank you so much for telling me about Pfeiffer. I really feel like it was the right place for us. I only wish I had known about it a year ago when Karl's tics first appeared.

 

The clinic was set up in the same hotel that we stayed overnight in (which was great). Our appointment started promptly at 10:15am. The nurses were so sweet and the doctor (Dr. Allen Lewis) had wonderful bedside manners. In a nutshell, the appointment lasted 2 1/2 hours and consisted of taking blood, hair and urine samples. From these samples, a full bloodwork up will be done, along with a heavy metal test, the IgE RAST, the IGg, assay of creatineine, kryptopyrrole, and some others. The doctor seemed to think that Karl's tics are a result of a mineral metabolism disorder in addition to high yeast and bacteria in the gut and food allergies. This is what our current environmental MD told us. Dr. Lewis changed Karl's supplement program slightly and asked that we stick to the current diet. The test results will be back in 4 to 6 weeks.

 

In the meantime, we have an appointment with a new DAN doctor the Saturday of Memorial Day weekend. I'm interested in what he'll have to say.

 

Karl's tics have been very good during these last two months. Not gone, although, we just noticed a couple of days ago that the humming tic has pretty much gone away. He still has some facial stuff, coughing, sniffing and forward head tilting, but they haven't been severe like back in February and March. Last weekend I noticed Karl shaking his head back and forth when his bike helmet was on. Of course I'm thinking that it's the beginning of a 'head shaking tic'. I've been watching for him to do it again, but havn't seen it since. I'm always on the lookout for new tics. We're praying that the diet, and supplements are working and that maybe his yeast/bacteria is down. As a side note, we're still a NO TV family. I can't believe it, but since the trial we started in February our two boys still don't watch any TV. That's one of the best things we've ever done.

 

Take care all.

 

Dara

[KJS]

Did you all see the article in today's New York Times on the link between strep and PANDAS?

 

Karen

[Chemar]

CNN did a piece on it last week too.

 

AT LAST!!!! recognition after so many years of being dismissed as an "unproven theory"

[Spring]

bumping up for evie.

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CFinEP

 

Thought you might find my original posts interesting in light of our sons similar experiences with the antibiotics. Please feel free to ask any questions.

[CFinEP]

CFinEP

 

Thought you might find my original posts interesting in light of our sons similar experiences with the antibiotics.  Please feel free  to ask any questions.

9344[/snapback]

 

I went back and read a lot of your original post. It is a lot of information. We are going to see a neurologist on Tuesday per recomendation of our pediatrician. My son has been off antibiotics for a week now. The initial abdominal tic that started all this has not returned, I thank God everyday as that tic caused me so much anguish. We are still dealing with the blinking tic. After reading some of your post, it is clicking to me that perhaps the TV is a factor. My son watches way too much TV. No high action shows, at least not what I would consider high action, only watchs Disney chanel and PBS. I have noted that the blinking tic is worse at night before bed.

 

I'm going to try to limit his TV time and make sure his TV area is better lit when he is watching.

 

ad_ccl:

Did you ever see a neurologist and what was your experience like?

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We did see a neurologist early on - that was one of our first referrals. He agreed with the PANDAS diagnosis and as at the time of the appointment his tics were minimal and he was on the antibiotics he just agreed with the plan to remain on them and follow up with the infectious disease clinic. He told me I knew far more about PANDAS then he did. We had piece of mind as he just did a full neuro exam so we knew nothing else was wrong.

 

He said if I wanted I could come back for follow up but we never did. He did not push meds as his tics at the time were minimal. I asked him about the tv and he thought it was wise to continue to limit it, the nurse had suggested that he tics more because he was relaxed and I should not limit it. At no time did he suggest not watching tv at all. We saw great improvement when we went 100% off the tv. We gave him money each day as a reward. He also always ticced more at bedtime. We have found the switching to an LCD tv has helped a lot. We still try to limit it and when he is sick he does still tic more at the tv - but this is happening less and less. I always talk about the bucket theory - and I think that is the case with the tv - if his bucket is empty he can handle many hours of tv - if he is sick the bucket is high and overflows with the added stress on him with the tv.

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bumped for Sarah

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bumped for sunshine