nicklemama

Thinking about you and your family. Have a safe drive.

My very favorite water bottle (and the only one I will use) I bought at REI but i've also seen at Target. Its a Camelbak. It has a soft mouthpiece that you squeeze a little w/ your teeth and suck on. Its great. The spout folds down, so if it falls over, it stays clean. If it falls over w/ the spout up, it will not spill. DS has a decent one has Life Is Good and a little character on it that is BPA free. It has a cap that you flip up and just turn the bottle up and drink out of. The drawback is if the cap is up, it spills everywhere.

Welcome! Looks like you are well on your way w/ PANDAS. Gotta love the bipolar dx. Nothing like a child w/ sudden bipolar. I can laugh now, but I wasn't laughing when I was told that was part of my DS's problem. That and sudden Aspergers. The good news is you've seen one of the best and the treatment has begun.

This is timely. I recently had my DS tested for allergies, after two years of itchy red eyes and constantly being on a prescription eye drop that is $125 for a teeny, tiny bottle. My ped never suggested doing testing. I finally took it upon myself. Turns out, he has a significant allergy to dust/dust mites plus lesser allergy to trees, ragweed, guinea pigs(who woulda guessed?) and cats, of which we have 3. I've been doing some reading and seeing how allergies are related to some of his PANDAS symptoms. I decided to take him to see a biomed doctor and do some more advanced food allergy testing. He had the blood drawn yesterday. We will see the dr in 6 wks, after all tests are in (he's also being tested for other things like methylation and the like). He's been on claritin daily for 2 wks now and we are seeing a difference in his behavior. I got an email from his teacher this morning telling me he has been improving at school. He's problem solving w/ the other kids rather than just getting mad at them and being unable to see anyone's side but his own or trying to work out a difference. The bio med doctor feels he has some food allergies and if we could get those taken care of, we'd see further improvement. We are also looking at nutritional deficiencies. This dr has a good understanding of PANDAS. He doesn't directly treat it, but he addresses inflammation and other things that seem to go along w/ PANDAS. He feels PANDAS has many overlapping things w/ allergy, asthma, ADHD and ASD. DS has been doing really well the past month, but the past two weeks has been even better. He is 10 months post IVIG. He made huge improvements, then we had setbacks in Dec and Jan, when he was sick w/ what appeared to be started as a cold that never went away for two months. I'm sorry for your family's loss. I have no advice on how to break that news. I think you are on the right track w/ the allergies. Hope you see some improvements w/ treatment. Lastly, my own vent about doctors who just do nothing or want to throw psych meds at a problem when they don't exactly know what the problem is. UGH!!!!!!!!

I have long term experience w/ Plaquenil. I took it for 14 yrs for rheumatoid arthritis. My dosing was 200mg bid. Anything over that is considered high dose in adults. It helped my RA tremendously. Its the only drug I took for RA. I did not need any other meds. Here's the downside, it can and it sometimes does damage the eyesight. I have personal experience. I started having problems w/ shimmering lights in a small area of my central vision and blurriness in that same spot, both eyes. This was one yr ago when it began. I saw my ophthamologist in early May, was sent to a retina specialist and then to a university teaching hospital for tests. I have sustained permanent damage in both eyes due to plaquenil retinal toxicity. Short term, its fine. It is NOT for long term use. Too bad my former rheumatologist didn't know that. The retina specialist told me its well known by physicians that use greater than 10yrs puts a person at very high risk. I am now taking minocycline for my RA and I feel great. Edited to add: it takes about 8-12 wks to see the effects of plaquenil on RA when you first start taking it.

We give DS Florastor, which is Sacc. Boullardi, twice a day. I don't know how much is in each capsule. I think around 3 billion. We've been doing this since he went on abx in Oct 2010. I have never refrigerated it. If your instructions say to, then I would. A day on the counter is not going to hurt, I don't think. I read that somewhere.

patric- DS weighs 60lbs. He takes 250mg sid prophylactically and 250mg bid or 500mg bid when he flares. Which one given depends on what is in the medicine cabinet. His ped wrote for 20 days treatment w/ 4 refills at 500mgs bid to be given when he flares. Dr K says give it for a min of 14 days. That's what I do. If he's still in a flare at 14 days, I go longer until I see improvement. I do this when he gets sick and flares. If he flares w/out being sick, I give him 200mg of motrin 3x a day, spaced out about 5-6hrs. This usually only lasts a few days and then he gets better again.

I am beginning to wonder how many kids actually do fit neatly into the box. I see tons of examples of outliers. My own DS is an outlier of PANDAS, though he fits the new PANS criteria. He's never had a diagnosed case of strep, yet, he reacts to others w/ strep. He has no immune deficiencies. He is one of those who managed to go to school and do very well, even in the worst of times at home. I attribute this to the fact that he was very young (kindergarten at first exacerbation) so the expected behaviors were a pretty wide range then. He was also ahead of grade level academically, so if he did falter some, it was not obvious. He remains academically ahead. Will he always be? He is doing very well post IVIG. Yet, he is still lagging in some of his social behaviors. Its enough that it affects his "behavior" marks that come on his report card this yr, in 2nd grade. He's not terrible at school. He's actually very nice and cooperative but he doesn't always get along w/ others, when his ocd rears up. He's still a little immature for his age, socially. Maybe there is something comorbid w/ your son going on. Maybe not. I'm not sure enough is even actually known about PANDAS to say anything is for certain.

My DS8 has been on prophylactic Augmentin since June 2011. When he gets sick w/ a virus or bacterial infection or is exposed to someone who has strep, his symptoms ramp up. When they do, he goes to treatment dose Augmentin, which is 250mg bid or even 500mg bid until the symptoms start subsiding.

My DS was rarely on abx early in life. Maybe 3-4 times before PANDAS at 5.5yo. He was rarely sick. Have not tried IV glutathione or any other form, at this time.

Welcome Corinth Dad!!!!! Loved your play on words, lol.

I definitely will. I hadn't even thought of the possibility of aluminum in allergy shots. I'll be asking, for certain. We don't have an appt for another 6 wks, to be sure all the testing gets back.

LLM- Thank you for alerting me to the possibility that aluminum is in allergy shots. I was considering it for DS from the allergist. We saw a biomedical dr yesterday that told me allergy shots are a possibility once we get the food allergy testing back. I will ask him about aluminum before I embark on that road. I'd be surprised if the shots he is suggesting would have aluminum in them. He is not a fan of vax's.

My experience had taught me not to expect anything from medical providers. It saves me frustration. DS sees a PANDAS expert and that's where you'll probably find the most help. DS saw an allergist last week. He knew nothing about PANDAS and that's ok. I didn't go there for PANDAS treatment. He did annoy me by telling me it was extremely rare, but that day wasn't the day for me to school him. DS saw many, many medical professionals before diagnosis and NONE but Dr T and Dr K have had any clue about PANDAS. Save yourself the frustration.

I know its upsetting but I think his decision to check w/ Dr L is the best route he could have taken, given his second thoughts. Hopefully, she'll provide the reassurance he's looking for and procede. Its probably a bunch of cya'ing.

I would NOT have the patience for putting up w/ the likes of this lady. This is just one more reason why I do not use Wikipedia. It is not reliable and now we can see why. If you match the opinions of the editors, then you'll get your Wiki article. Opinions are not science.

I just finished reading Dr Bock's book. He's familiar w/ PANDAS and the treatments he recommends appear to be good for PANDAS kids.

My Ds was everything you described... raging behavior when told no or ocd disrupted, difficulty falling asleep, difficulty staying asleep, severe separation anxiety where he needed to sleep w/ us every night for 2 yrs, terrible nightmares, kicked and yelled out in his sleep. He no longer does these things after 7 months of antibiotics, then IVIG and now prophylactic antibiotics.

Go see one of the big names of PANDAS docs in your area...Dr Trifiletti in New Jersey, Dr Bouboulis in CT, or Dr Latimer in MD. Your child needs PANDAS treatment. I'd bet a lot of money he is also NOT bipolar. We were told our son was Aspergers and Bipolar. He is neither. He's doing very well today, after PANDAS treatment, and now on prophylactic antibiotics. The only prescription meds he's taking is Augmentin and some allergy drops for his eyes.

I can't worry about the 3 now. They all happened before he was diagnosed. I believe my DS is chronic. IVIG helped tremendously and I plan to keep him on prophy abx for years.

I can't watch Dr Drew anymore. It makes my blood pressure an anxiety rise.

Oh, my. Can you say lawsuit? I would be stark raving mad and it wouldn't be about encouraging promiscuity.

I think I might print out a couple of the more recent papers and give it to her, especially Swedo's new PANS paper plus maybe Dr Jenike's recent paper put together w/ a PANDAS mom.

Geez that is scary. I loved the description of symptoms as fever, headache, lethargy. Aren't those symptoms of many different garden variety illnesses? Sounds like you contract this form of strep through open cuts. I'm going to have to go do some googling.

I'm not aware that Dr T is ordering Igenex testing. He ordered the standard W Blot for DS. I took the announcement to mean they were CDC positive by W Blot run by a standard lab.