Johnsmom

Why is it called pandas when our kids clearly have more than just strep problems?

DS is having a hard time in 3rd grade. We met for an IEP/FBA today to discuss getting him further help. DS was diagnosed pdd-nos at the age of 5. dr k diagnosed him pandas last summer. One HD IVIG with only two weeks of typical child then re-exposure. Switched back to Dan dr, took off augmentin and now on zith. Zith worked for him in prior two years but dr at that time was not consistent with prescription. In the school meeting today wewere getting to the part of the fba where it said "what medical issues could be attributing to the behavior?" I had to actually walk out of the room. I was going into an all out panic attack. My heart was coming through my chest and I felt like I couldn't breathe. I've never experienced anything like that in my entire life. The librarian gave me a box of Kleenex and I went back in and couldn't look at anyone for about twenty minutes. I had a b12 in my purse and put it under my tongue. In ten minutes I was fine. I can't even tell you what they said. After more than two years why are we back in this position again? !?#*! Johnsmom

I gave ds supplements with his abx for a long time but was told by the pharmacist that some vitamins can reduce the potency of abx. I've been giving him his zith at bedtime with nothing else but now we r starting to add cal/mag and nystatin and will need to do charcoal so it's getting quite difficult to fit it all in w/out following the kid around all day. Anyone know what supplements/meds are safe to give with zithromax? Thanks!

I go to the gym all the time. There are days when i feel I dont have it in my tank. But I always say to myself I will never regret working out, I'll only regret it if I don't.

What exactly does this test measure? Is it just another titer test. DS's streptozyme screen is abnormal and streptozyme titer is High. 1:200 refernece range <100 ???? Thanks Ann

Done!!

Would this work for anyone?

What is your doctor using to provoke the Lyme?

Good luck on your journey. I hope you find peace and happiness. Thanks for sharing.

Great Vaccine? Not when you have an underlying immune issue or family history of rheumatic fever . Prevnar used to only have 7 strains of strep in it now it ONLY has 13. What a joke.

June 2010 - IVIG HD Did not see good results until September 2010. Only lasted 2 weeks. Re-exposure. upped augmentin Novmeber 20, 2010 - took off of augmentin. DS is irritable, poor speech doesnt make sense, handwriting is awful, math is not good. 5 days later son appears to be doing MUCH BETTER but groin rash is really bad! Dr k told me it was excema. What is this rash??? Can you have scarlet fever and no actual fever? This rash has come and gone for the past 3 years. Dr k wants DS back on 500 mg of augmentin.He is better off of it.I have proof that zithromax worked for my son on 3 occasions and even showed him but Dr k says in his experience, augmentin is superior. Does anyone know just WTH this rash is? Thanks! Ann

Could that be yeast? We havent had that experience.

DS had a spell where he blinked a lot. He always wants his feet rubbed and complains on and off about feet and legs hurting. Pretty normal PANDAS stuff I would say.

Thanks Vickie, Im sharing it with family and friends. I loved it!

Phew! Lots going on here. Two things that jumped out at me. Her sense of smell and chemical sensitivities. My kid can smell things that are sealed in a Tupperware container in another room. This it yeast overgrowth for us. Sounds like you have a lot more than that though. Even though she may not have discharge, the yeast could still be in her system. As soon as I took my son of augmentin his behavior improved dramatically. I think it was causing yeast overgrowth. Other bacterias like clostridia and klebsiellia can cause aggression. Have you done any stool testing recently. It just sounds like she has Sooooo much going on. What is she taking now? Praying for you Johnsmom

We had IVIG in June with Dr K but DS got re-exposed and he mentioned this "booster IVIG". I never asked what he meant but I thouht he was referring to another HD IVIG. ??

I took ds off of his augmentin about a week ago. I suspected the same thing. He was so irritable, no focus, not making sense. His groin rash was awful two days ago. I was told that it was exema and I know exema can be caused by yeast. Hes better already. A few meltdowns at school and at home but something he snapped out of on his own. His speech is more clear and his eye contact is better. I am not doing any anti fungal just yet. I am waiting and giving it a rest.

http://specials.msn.com/A-List/Health/Kids-eating-disorders-skyrocket.aspx?cp-documentid=26571605

Please don't feel bad. A lot of us have been defeated by doctors. This is so confusing and we are expected to know what is right and what is wrong. I read your story. You really did get on top of it right away but now you have to watch closely. If there are ANY signs you need full strength abx. I wish I was aware of PANDAS years ago. Best of luck and I will be praying for you. Johnsmom

1) IMO long term full-strength abs are really important for PANDAS kids (at least most of them). My dd (now 5th grade) has been on (at least) 250mg/day Azith. for 2.5 years. I wouldn't expect much in terms of response/sustained improvement from just a z-pack here and there. 2) Hmmm. I have not heard that b-4 about ASO/intracellular strep. I would think almost the opposite, if the strep is hiding intracellular, the body would be less likely to have elevated ASO's. ?? Did that person have a reference? Many PANDAS kids have low titers (mine did) yet I suspect she may have (had?) intracellular strep as she responded better to Azith. than other abs. That person did not give a reference. Maybe I will ask??? So you say if it is hiding intracellular then ds would be less likely to have elevated ASO's ? I dont understand any of it. When you say low titers, how low? DS had one test where his ASO's were only 163 at a range of 150 being the highest. He was bonkers at that time. When they were the highest 661, he had spiked a fever for two days and then after the fever broke he couldnt walk! UGH! This research is just too slow. Hmmm. I don't really remember what it was initially. But it was definitely in the low/ below normal range, despite positive cultures. After dd had been on abs for about a year (Azith.), her ASO was 17, while her CaM kinase ll (at the same time) was in the high PANDAS range. DS only tested positive on one throat culture and thats when he complained of a sore throat. We only did one or two other throat cultures and those were negative.

1) IMO long term full-strength abs are really important for PANDAS kids (at least most of them). My dd (now 5th grade) has been on (at least) 250mg/day Azith. for 2.5 years. I wouldn't expect much in terms of response/sustained improvement from just a z-pack here and there. 2) Hmmm. I have not heard that b-4 about ASO/intracellular strep. I would think almost the opposite, if the strep is hiding intracellular, the body would be less likely to have elevated ASO's. ?? Did that person have a reference? Many PANDAS kids have low titers (mine did) yet I suspect she may have (had?) intracellular strep as she responded better to Azith. than other abs. That person did not give a reference. Maybe I will ask??? So you say if it is hiding intracellular then ds would be less likely to have elevated ASO's ? I dont understand any of it. When you say low titers, how low? DS had one test where his ASO's were only 163 at a range of 150 being the highest. He was bonkers at that time. When they were the highest 661, he had spiked a fever for two days and then after the fever broke he couldnt walk! UGH! This research is just too slow.

http://personalmoneystore.com/moneyblog/2010/11/16/strep-throat-ocd-autism/

Can everyone on this topic post where they are from? I have heard that Zithromax does not work on the east coast but works well in California. I am from the midwest, Wisconsin. I'm just curious to see if that comment holds water. thanks Ann

Karen, thanks for sharing your two cents. My 9 yr old ds was treated with a z-pack on only a few occasions. Last year at this time he was treated and after Thanksgiving they were instructed at school to write and color a picture after the holiday break. He made a beautiful detailed picture of a turkey and wrote a nice paragraph about our holiday. He had IVIG last june, had an incredible two week stint of normalcy, got re-exposed and upped augmentin to 875 twice a day. I'll admit that he had some improvments after the abx increase but we had the option to do a steroid burst and we chose to do that as well. We only saw a tiny blip of improvmement compared to what we saw the first time he had the burst in Spring. (normalcy, just like IVIG) Anyway, I look back at my notes from last year and see a burst of improvement following this z-pack and other notes that indicate the same pattern with another z-pack. We were under the care of a DAN doctor who did not do any long term abx. My son has never had elevated ANTI DNASE but has elevated ASO'S all the time. I was told that elevated ASO's means intra - cellular strep. How did you come to find out about the cephalosporins? Your doctor suggested? I have read so much on this forum that zithromax can do well for awhile but then things go south. Ann