mkur

Additional info for a previous post: Still cannot find original article but I found this: http://en.wikipedia.org/wiki/Chronotherapy http://en.wikipedia.org/wiki/Delayed_sleep_phase_syndrome http://www.stanford.edu/~dement/delayed.html#chron I didn't know this could be a syndrome when I was searching 5 yrs ago.

Probiotic Bacteria Could Help Treat Crohn's Disease http://www.sciencedaily.com/releases/2011/03/110331142221.htm and related older article Banana Plantain Fibers Could Treat Crohn's Disease, Research Suggests http://www.sciencedaily.com/releases/2010/08/100825191700.htm

Great find...so true....Thanks

I read about this approx 5 years ago but I cannot find the article on the web. You want to keep the kid up an extra 2 hours every evening until they are on a regular schedule. The article said this is more effective then trying to put the kid to bed earlier because the internal clock doesn't reset. This will reset/sync their internal clock. I have done this for my child but he would get out of sync again. I think IVIG has helped with this problem or maybe he just outgrow it. There are some articles about blue light therapy on the web - I haven't tried them. This is a common problem with teens. Good luck.

Texas has the same problem. I feel your pain. Where there is a will there is a way? Keep searching! Good Luck

Have you tested his thyroid levels t3,t4,free_t4,TSH. Alot of ADHD and TS kids have thyroid problems. You need to rule this out. Good Luck.

My son has had 2 MRI's, 1 CT scan, 2 reg EEG's, 1 EEG with a sleep study, 1 3-day ambulatory EEG at home, 1 1-week video EEG in hospital. All normal. He is a classic pandas - high titers 900's - CamK 167 - sudden onset 2 weeks after strep infection - scarlet fever at 4 yr of age. Because of this the neuro refer us to the psy who refer us to neuro again and again and again. He has seizures/panic attacks/movement disorder/(or whatever you want to call it-really don't care at this point-just fixit). You can see it. I know he has partial-temporal lobe-complex seizures and they affect his amygdala but I can't prove it - too deep to measure. We have to see a neuro because Keppra works for him now and only neuros prescribe Keppra. I have a love/hate relationship with Keppra. It makes him mean, takes 3 days to see effect and it is all or nothing. But we have no choice because when he is having these seizures every 1/2 hour 24/7 all you want is for them to stop and then I am sooooo thankful for Keppra ... but then I will forget when I have to deal with the side effects until the seizures break again. I know a TS kid who had absences seizures and grand mals which never showed up on a EEG. His father is a Dr and his mom is a RN and they could not get it on tape. He outgrew them by adulthood. I do not understand how we can shoot moving missiles out of the sky, map gas/oil pockets miles under the crust, land on Mars etc and still cannot record a seizure in a stationary brain of a known substance, at a fixed depth and up close. Ugh...........

I agree with everyone else who replied. I would like to add one thing. My pandas child is 5 years older than his younger non-pandas brother. When DS got sick at 7, my younger son was two. I would rather leave my 2 year alone in the house vs my pandas 7 year old if I went outside for something. I wanted to homeschool DS but I had a 2 yr old at home and made the choice to send DS to different school for behavior problems. I believe this was a mistake. Everyone told me he needs socialization and structure. He needed to sleep and heal. Dr Green wrote a book called the Explosive Child. You should read it. I attended a lecture by him (he's great!!!!) and he talked about the other child and called them the "good child". The other child will be super good until the sick child gets better and then they will start testing the water when the time is right. I have a "good child" and I feel for him but then I sure do appreciate it. I really believe people are born with approx 75% of their personality and having a pandas child really proves how humans are nothing but chemical beings. The most important lesson I learned was "trust yourself" - you know this child better than anyone. Good luck.

I totally agree. Low dose makes me nervous - not there yet. I also like the idea of short bursts of second antibiotic to get the hiding strep or anything else. Aug with a couple of days of azith monthly. The idea of mixing it up with different antibiotics - just the basic ones not the newer big gun - also sounds good to me. I would support a lyme method - to get rid of anything. I don't think doing this halfa** is an option. I haven't read anything to support these ideas - but it seems logical to me.

With all the problems you are having, I would not give up on this med so fast if sleepiness is the only side effect. Tenex was a wonderdrug for my son. I would cut the dose in half and/or change the time you give the dose(s). My son was/is very sensitive to the timing of his meds - with food vs no food - with orange juice vs no orange juice (very acidic). Administering meds can be tricky. This is only my opinion and you need to call the doctor for some advice. Good luck

Have you checked her B12 levels? This can cause mania. Something else to rule out. Seratonin is involved with sleep regulation. IVIG has helped my son with sleep patterns. see http://en.wikipedia.org/wiki/Mania to get you started on more research He was born a long sleeper - 12 hours and still is. Has anyone read anything about this?

2) One day he didn't tic, the next day he did. So in that respect, who ISN"T sudden? This really tickled me. I love it. I totally agree. Great ideas.

The insurance laws have changed. Your child can stay on your insurance until age 26. You can contact the Tourettes Society to get the exact changes - they would know. My son is 20 and we have not given up hope. He is getting better slowly. Neuroplasticity - there is hope. Good luck.

The insurance laws have changed. Your child can stay on your insurance until age 26. You can contact the Tourettes Society to get the exact changes - they would know. My son is 20 and we have not given up hope. He is getting better slowly. Neuroplasticity - there is hope. Good luck.

I thought about homeschooling my son several years ago. I read about this method called spaced learning. I use it with my other son for studing. He bounces a basketball to destress. You can google it for more info. Baylor did a study about chewing gum and math. I also read that if your child learnings sometime and then goes to bed, his brain will reinforce the info during sleep. Good luck

I hope Allie is having a good day. Thanks for all your posts. I wish I had some words of wisdom. Hang in there.

http://www.sciencedaily.com/releases/2011/03/110307103652.htm

why isn't it in the general protocol to go back for a subsequent culture after treatment? The answer is money. My ds first strep symptom is upset stomach and vomiting. No fever. It took me a couple of years to figure this out - after scarlet fever (4 yrs old). Ds didn't have major pandas problems until 7 yrs old. His old ped would lecture me about unnecessary costs when I would ask for a strep test - most of the time I was right. Never argue with doctor mom - I just know when something is not right. It might take me a while to figure it out.

Same for my son. It gives me hope because I can see him without all the pandas. When my son is having seizures he also returns but cannot fnt because of seizures.

Dr B prescribed my son prednisone 20mg - 2 tablets for 6 days - starting 2 days before treatment. My son is 19 and 150 lbs. You have to give it in the mornings (so they will sleep at night) and with food. The IVIG nurse gave it to him when he would eat. My son is not a morming person (just getting him up and dressed is a hassle) and will not eat breakfast food. He eats when he gets there. It helps to pass the time. My son didn't want to take it afterwards one time and got a major headache which went away after he took the med - so it works for him. Good luck

There are lots of threads on sinus problems. Search: biofilm and read the following thread: http://www.latitudes.org/forums/index.php?showtopic=9549&st=0 Good luck

Dr B told me they are finding out that strep hides in the sinus cavities. The child will test neg for strep. This hidden strep will keep upsetting the immune system and the child will keep getting worse (my words not Dr B's). I'm pretty sure this is what happened to my son. You need to address this sinus problem: ENT, Dr B or someone else. Wikipedia explains herx reactions http://en.wikipedia.org/wiki/Herxheimer_reaction Good luck

No. I discontinued risperdal in Jan when he went into the hospital to change seizure meds and then restarted it again and stopped it again. In June, we went to Dr B and started treating PANDAS for the first time. The Tenex was so easy to see a change. I gave him a pill in the evening and then another in the morning. He went to school a changed child but he would start to have trouble around 2pm again. There is a time release or patch version available now.

Back in 1998, Tenex was a wonder drug for my son and he was later switched to risperdal. It really helped my son's impulsive behavior and racing brain. He would crave sugar to feed that racing brain. Good luck

Our story is very similar - son 19 - got sick Nov 1997 - 1st grade - no treatment. He has had 2 ivigs (sept, nov - Dr . Most of the ODD (not wanting treatment, not taking meds etc) went away week 6 after 1st ivig. But things got worst before they got better. He had ivig on wed and thurs. No reaction to treatment because of meds given until Sat evening approx 8pm on the plane trip home. He said he was going crazy and was very very agitated. He still has trouble with OCD (very sticky brain) but he is getting better. When you get the prednisone rx filled you can save money if you use generic and just pay out of pocket for the rx and having all three refills filled at one time. At CVS 36 tablets were approx $13 if I had used my insurance I would have had to pay $30 (3 x $10 copay). We have also been extremely lucky to find this forum and treatment. Thanks everyone.