blood work

[michele]

I can't figure why Augmentin is not working on him. Even if he was exposed again it should be strong enough to mask his symptoms right? I wonder if after the Omniseph the Augmentin is not strong enough? I did ask Dr. Demio's office to call in Azith but who knows if he will. If only we could try it. I will send him the articles Kim posted here yesterday with a note begging him for a trial. What is the usual PANDAS perscription for azit? Dosage? Yesterday after the aug, and gaba calm he told me he felt a difference in not having to go pee. Do others have this problem with thir PANDAS children? Plus the tics were so much worse yesterday. I gave him the aug, gaba calm, probiotics, and vitamins yesterday. I am cutting out the others for a few days to see what happens. Why was he better before I started giving him all this? Did I boost his immune system? Dr. Demio said there is another urine screen he could do for this repetitive need to urinate.

 

I am glad your daughter is feeling better. I used to be like you and when he was symptom free it seemed like he didn't have anything wrong and I'd start to think he was better. I wish I could see those days again. Has your doctr looked into syndromes chorea for your daughter? It is similar to PANDAS but more common in girls and teens. I know it is alot like PANDAS and probably better accepted in the medical world. Have a good day.

http://rarediseases.about.com/od/rarediseasess/a/101500.htm

 

Michele

Michele, I am so sorry that you and your son are going through all of this. It is so hard and confusing. I so know the feeling of being awake at 2 AM trying to sort this all through. With our case, I was in denial for a while, as was my daughter. We just kept going on like nothing was happening. Finally, I spoke to the doctor, and we did the strep tests because the onset was so sudden. She first took amoxicillin, and did pretty well, but still had some minor symptoms. Still, I was pretty pleased. Then, suddenly, I noticed more symptoms while she was on the amoxicillin, and my heart sank. I then learned that her best friend had strep. I called the doctor, and discussed the situation, and he decided to keep her on the amoxicillin for another 10 days. Within a day of her friend getting treated, my daughter was better again. We then tried it without antibiotics (but with other supplements). For the first couple of days, it was all good. Then, I thought I noticed more symptoms. By the time she had been off a week, well -- it was not good. This time I asked for the antibiotics you had mentioned. I ended up with augmentin. As I said, within an hour there was noticable improvement. I am almost afraid to say it, but right now, it is all good -- no tics at all, and I only noticed two very minor ocd things in the last seven days. I wish we could stay on this, but I don't think that is the plan.

 

I find that when my daughter is doing well, I am very logical and calm, and listen to what people are telling me, and try to be very conservative and analytical in how I approach my daughters treatment. But, when the symptoms are bad, I freak out and would do just about anything to get them to stop. Not good, I know.

 

I stopped everything now except for the antibiotic and her allergy med. I was beating myself up for going too fast -- my doctor advised to go slowly so I could try and tell what would work. But, he also said that sometimes something will initially help (perhaps because the body needs that supplement) and then later will not (because the body is no longer deficient in it). Or, you may tolerate a supplement for a while, and then suddenly develop a sensitivity to it. So, basically, if you go slow, and watch carefully you have the best chance of figuring out what is working -- but even that doesn't guarantee success.

 

You are such a good mother trying all of these different things for your son!

[ad_ccl]

Hi Michele - sorry things are not going as well as you had hoped. The usual prescription for azith is doing a full run initially (500mg first day then 250 mg for 4 days) My son takes the pills - 250mg each. When we first started we did a full 12 days or so as it was the beginning of the school year. Then it is usually 500mg every 7th day (as per the article) - but we have been doing it every 5th day and I believe Ronna does the same - we found waiting the 7 days was too long. At times of flare ups (like now) we increase to a full 5 day run. Even if it is a viral illness we find tics die down - we are assuming due to the immuno modulating effects of the azith. We are going into day 4 today - things are improving but he will still be home from school. With azith we have usually seen an improvement almost immediately - by the next day things are a bit better - but by day 3 there are quite a bit better. Azith has a long half life so keeps working for the 5 days.

[michele]

Could you please forward the exact article to me so I could send it to the Dr. You probably have posted it before but I want to get the right one. I am so happy for you that it works so well. It sounds like a great med for PANDAS why aren't the Dr.'s more aware of it? Even Dr. Murphy did not recommend it. I wish there was more published on its qualities for treating this!

Michele

 

Hi Michele - sorry things are not going as well as you had hoped. The usual prescription for azith is doing a full run initially (500mg first day then 250 mg for 4 days) My son takes the pills - 250mg each. When we first started we did a full 12 days or so as it was the beginning of the school year. Then it is usually 500mg every 7th day (as per the article) - but we have been doing it every 5th day and I believe Ronna does the same - we found waiting the 7 days was too long. At times of flare ups (like now) we increase to a full 5 day run. Even if it is a viral illness we find tics die down - we are assuming due to the immuno modulating effects of the azith. We are going into day 4 today - things are improving but he will still be home from school. With azith we have usually seen an improvement almost immediately - by the next day things are a bit better - but by day 3 there are quite a bit better. Azith has a long half life so keeps working for the 5 days.

[ad_ccl]

If you go on the NIMH site - there is a published section - and you click on there and the articles are there. I don't know how to link - I usually type in NIMH PANDAS and google it.

It does not say azith is better - but it does say it worked - and amox was NO LONGER working at all for us.

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http://intramural.nimh.nih.gov/pdn/pub-9.pdf

Here is the link - hope it works

[michele]

Thanks hun. I was hoping it was one that proved it works better then but I will send it to him anyways. It is a good study I wish they would do more with PANDAS meds. I am desperate as you were. I just called Cleveland Clinic. I will take him next week to see the grandfather Dr. of tourettes who came out of retirement to take us on! Only problem he has never done more then look at him and say see ya in five months tics should go away as they have done in the past! Maybe because of his young age they wanted to wait and watch him. I've got to try them all and pick all their brains. Maybe if I start crying they will respond better to my pleas for azith?

LOL

Michele

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

Here is the link - hope it works

[bmom]

Wow! You are definately to be admired for your efforts! Have you decided to go with the supplements from the DAN dr. suggestions? Is the grandfather of Tourettes an MD that uses natural efforts or traditional? One other question, Does Andrew have high titres? Did you have those tested to determine Pandas vs. Tourettes?

[ad_ccl]

Hi Michele,

I have not been past begging for antibiotics over the years (holding back tears)- do whatever you can is my philosophy. I have asked doctors before what they would do if it was their child - what if something may work - and is not harmful to try - would they try it? Sometimes when you put it back to them in personal terms - they think about it differently. I also have said to doctors before - I know you see kids much worse off etc - but this is my kid and my reality etc. and I will do anything I can for him now.

[michele]

His titers have been high for his age in the past. On the strep design culture ordered from DAN they wereabnormal on IgG subclass 4. However the downfall to this kind of test is it won't report individual titers totals but reports as a whole. If they were broken down individually it would flag better. He was within normal range on subclass 1,2,3 We need to run a seperate test of ASO and DNASE titers. As a whole they showed his regulatory internal affairs were not working well.

 

I bought Zinc picolinate and taurine today. I will start there with vitamins and probiotics and Augmentin. His history of strep and ear infections points to PANDAS as well as high titers in the past. He has all the symptoms of PANDAS over the years with the repeat exacerbations when sick or exposed. I hope we see results soon with the Pyrrole. DAN said we should see 85% improvement. We will wait to add B-6. Of course we are following the GF CF diet too.

 

He is a neurologist at Cleveland Clinic. I believe he was quoted in Sheila's book Tic and Tourettes. His name is Dr. Erenberg. A Dr. friend of mine who is like 100 years old and worked with the brother's who invented penicillin at the Mayo Clinic set me up with him. He has never prescribed anything for him. I think he procedes with caution and seems as if he does not like to medicate. He has more or less watched his progress over the past four and a half years. He does seem very smart though. He can repeat everything back almost word for word after we discuss Andrew. Then he types it up and sends me a report of the visit.

Michele

 

Wow! You are definately to be admired for your efforts! Have you decided to go with the supplements from the DAN dr. suggestions? Is the grandfather of Tourettes an MD that uses natural efforts or traditional? One other question, Does Andrew have high titres? Did you have those tested to determine Pandas vs. Tourettes?