mkur

Dr Fischetti's lab is doing research on this and are working with a biotech company to develop this but it will not be available for a couple of years. http://www.rockefeller.edu/vaf/ http://www.rockefeller.edu/research/faculty/labheads/VincentFischetti/

This is great news. Texas med schools and research centers need to wake up or miss the boat. TCH will have to eat a lot of crow.

My ds was strong in math and average in languages until he became chronic and lost a lot of his ability to focus and remember. My dyslexic non-pandas son is stronger in math and science and weaker in languages. This is not the "norm" for sped kids at their school.

My husband just got back from Dr. B and Dr. B said not to use the nasal spray. Xylitol is a sugar and feeds bacteria. Stick with saline once a week.

I always have mine crossed. Great news! So happy for you!

I wish I had known about this earlier - my kids don't have any more baby teeth. Has anyone used xylitol gum or mouthwash before and after the dentist or while having a loose tooth? I found these articles: Effect of xylitol chewing gum on salivary Streptococcus mutans in preschool children http://www.ncbi.nlm.nih.gov/pubmed/12119821 Effect of Xylitol on Growth of Streptococcus pneumoniae in the Presence of Fructose and Sorbitol http://www.ncbi.nlm.nih.gov/pmc/articles/PMC90255 Thanks

Found this article on melatonin - OCDmom do you use this? - anyone else have anything to add. Thanks. http://www.med.nyu.edu/cec/assets/melatoninarticle.pdf

Thanks for posting the article and thanks to all the others for posting their opinions and experiences. I think my son is histamine sensitive - benedryl helps him - something else to watch out for. This article helps to show that everyone is different and there needs to be more tests available and run before any child is put on psy meds.

Mercury exposure and neurochemical impacts in bald eagles across several Great Lakes states. I only read the abstract. http://www.ncbi.nlm.nih.gov/pubmed/21735125 the vets may save us from ourselves -

Thanks for posting. I read the article and found the following warning interesting. Drug Interactions Medications that can interact badly with lithium include: •ibuprofen (Advil, Motrin) •naproxen (Aleve) •diuretics •SSRI antidepressants (Prozac, Luvox, etc.)

When my son first got sick he went to the other end of the spectrum of typical autism - like William's syndrome. He was hyper and impulsive - had to talk but cannot carry on a normal conversation because he doesn't listen - it's mostly him talking. When things got worse because of seizures he moved to the autism side of the spectrum. With treatment (abx and ivig) he has swung back to the other side of the spectrum again - talky.

My son reacts at approx 8pm the day after IGIV. This makes the plane ride home difficult. Each time he has IGIV the reaction intensity and duration is less. Some of this reaction could be due to the steroid. He refused to take the steroid one time and got a major headache so removing the steroid is not an option. He is getting better so there is hope.

We have a lab - definitely OCD about playing fetch and has separation anxiety - always having to sit next to you or on your feet - will knock down fences to be with people - escape artist.

http://www.npr.org/blogs/health/2011/06/21/137300311/why-hammocks-make-sleep-easier-deeper?ps=sh_sthdl This reminded me of the swings people use to destress.

Thanks for posting. I would like your opinion on the third article Cough drug’s effects point to glutamate dysregulation which I found really interesting. Have you used this OTC med dextromethorphan? http://en.wikipedia.org/wiki/Dextromethorphan http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682492.html When I looked up the cough drug in Wikipedia it says it is a nonselective serotonin reuptake inhibitor and doesn’t mention glutamate. It does say that “Approximately 1 in 10 of the caucasian population has little or no CYP2D6 enzyme activity leading to long lived high drug levels.[31]” So I looked CYP2D6 up at http://en.wikipedia.org/wiki/CYP2D6 and scrolled down, it lists all the drugs that are selected inducers, inhibitors and substrates of CYP2D6. This explains why some kids have problems with these meds. It also mentions a test and gives a criticism of the test and why I won’t have DS tested. http://en.wikipedia.org/wiki/AmpliChip_CYP450_Test Also found the following the abstracts interesting: 1-Dextromethorphan as a potential neuroprotective agent with unique mechanisms of action. http://www.ncbi.nlm.nih.gov/pubmed/17848867 2-Inhibitory effect of glutamate release from rat cerebrocortical synaptosomes by dextromethorphan and its metabolite 3-hydroxymorphinan. http://www.ncbi.nlm.nih.gov/pubmed/19428798 3-Cyanocobalamin, vitamin B12, depresses glutamate release through inhibition of voltage-dependent Ca2+ influx in rat cerebrocortical nerve terminals (synaptosomes). http://www.ncbi.nlm.nih.gov/pubmed/19073169 *Side note: I know that vitamin B6 is used to help control Keppra (seizure med) rages. Pyridoxine supplementation for the treatment of levetiracetam-induced behavior side effects in children: preliminary results. http://www.ncbi.nlm.nih.gov/pubmed/18647662

Wishing you a better day - less stress. Hang in there.

Found this website by CDC on strep http://www.cdc.gov/ncidod/biotech/strep/strepindex.htm Thanks for posting

When DS became sick 1997, I had him tested. Children's hospital said he had allergies for mold and tree pollen - nothing major. It did not explain his chronic runny nose, spitting etc. I took him to an environmental doctor ($$$) and they said he was sensitive to nearly everything. I think his immune system went crazy which might explain his high titers.

Does your child like watermelon or melons? It's mostly liquid. They can nibble on it. I buy my son canned drinks at the drugstore - his choice - a special treat. I also let him have special shakes (homemade and fastfood) as a treat - things I normally will not pay for. Dr B give's them steroids (2 days before, 2 days during and 2 days after), ibuprofen (during and after) and benadryl (during and after). It really helps. My son refused to take it once and got a major headache. We were at the point where having the ivig was a relief. We needed to do something and this has help a lot. It offers hope.

Saw this about a new lyme test for dogs and horses - $36 - it says it's better than the old tests - elisa and Western blot. It can figure out which stage of infection the animal has - new or old. Will this work for humans? It can't be that different. I'm serious - $36 - what the heck - it's the same bacteria right? http://ahdc.vet.cornell.edu/news/lyme.cfm http://www.thehorse.com/ViewArticle.aspx?ID=18406&src=EM

I know this sounds sick but this could be a good thing for pandas. The doctors will have to get serious about giving strep tests. The CDC will start to collect data and do tests - they need to document scarlet fever cases period. If I had known how serious scarlet fever was when my son got it in 1994, things might have turned out different. I was told it was easily treated with abx - not to worry. I don't worry about the kids already labeled pandas - I worry about the kids whose parents know nothing about pandas. These bugs are evolving and we need to be changing too. Thanks for posting.

They say that they support antibiotic therapy for rheumatic diseases. Looks interesting. Anyone familiar with them? Roadback.org

Dr B can fax you the lab request - email the nurses.

Tenex was a wonder drug for my son for impulse control. It helped him during the mornings at school until about 2pm or 2:30pm and then he would have problems - mostly at home. But we needed help - any help. I don't remember the mg's but he took 1/2 tablet am and pm. There is a time release version available now - not available 12 years ago. I think the time release would have helped him. It became ineffective after a year - but I think he became sicker and more problems developed - there was no treatment plan for Pandas 12 years ago.

QUOTE "Liver enzyme tests are sometimes normal, and even ultrasounds and CT scans don't always pick up on the disease." This is a similar problem for PANDAS - lab tests are normal - CT scans and MRI are normal. But there still is a problem!! Thanks for posting.