fightingmom

Thank you, all!!

Great idea about the hand washing being verified by the nurse.

I'm expecting the backslide in a week or two, but right now I'm loving it!

I can totally see your logic and also empathize with being a mother and wanting to do everything possible to save your child and keep them as healthy as you can. I think we all sit around and ponder about what we can do different to reduce exposure, strengthen the immune system, etc. BUT...If this is one battle you can let them win, and save your fights for the big stuff (like if you need modifications to work load, special assistance, etc.), I think I would concede on this one. My personal thoughts are that by the time he's been in class with the kids, in lunch with them, in gym, in art, in the hallways, in all the other environments shared by all the kids, he's likely to have been exposed to all the germs that make their way into the nurses office. The bathroom in the nurses office is probably cleaner than the public student and even faculty bathrooms. I got stuck using a staff bathroom at the hospital the other day and it was DISGUSTING! Adults are not always neat, and quite often it's the opposite - as disgusting as that is.

It's over 2 weeks now. We started out on Augmentin AND steroids. After a few days on steroids, my son was a crying disaster. The whole world sucked, he was crying about everything, hated everything. We took him off the steroids at 5 days. Now, I'm not sure if they still did their job and we are seeing results from that, or if it's the Augmentin, but it's FANTASTIC!!!! He's not arguing with me, he's doing what he's told. He even APOLOGIZED to me ME today for the way he reacted to something and it wasn't even that big of a deal!!! He didn't chase me around and start a war, he had simply talked back and make a comment. About 5 minutes later, it apparently bothered him that he reacted that way because he came upstairs to tell me he was sorry for overreacting!!! <insert the sound of angels singing here> I know this may be temporary, I know we are headed down a long road, but I am ecstatic! Oh, and I have not been getting calls from school about behavior, he's been doing his homework without help and without a fight AND today he got a compliment from the Assistant Principal about how he seems to be "turning over a new leaf". I haven't talked to them about PANDAS, I've not had successful meetings with them in the past regarding his medical issues, etc. and was trying to lie low and see how this played out -- if things take a turn and my son needs assistance or special arrangements, of course that will change...BUT for now.... YIPPEE!!!!!!!!!!!

DITTO!!

And, today I am diagnosed with a sinus infection. GRRREAT! Starting to see a pattern here. Doc gave me cipro. He wasn't buying into the strep in the sinuses theory and didn't care about my son's two sinus infection diagnoses back to back. I put a call into Dr. B. to see if wanted to prescribe me something else, waiting to hear back. Does this ever end?

I think the study is in Connecticut at Yale, but I could be mistaken.

My son was in honors math, we had to fight tooth and nail to get him taken out of the class a few months ago. He simply could not handle it and it came on very sudden. The school was extremely difficult about it. We spent several weeks having nightly meltdowns for hours and only getting through 2-3 math problems. To this day the teachers still make snide comments to my son about his lack of effort and his homeroom teacher told him the a few weeks ago that he "could do it, he just doesn't apply himself". He was switched out of the class in January...they still are upset by it. Don't ask me why. But, to answer your question, my son has always done exceptionally well in school, scores several grade levels above since kindergarten in standardized tests and suddenly just wasn't able to hang in particularly in math.

Agree completely. Me three. Could not have said it better.

YES!! I have been noticing a rash on his face, near his eyes, but to the side. Almost near his temples and it also looks like a prickly heat rash!

Strange, my son whistles all the time, too. And it drives me crazy, so I'm constantly asking him to stop whistling. I had no idea it could be a tic!

Last night was good and this morning, too. Things are looking up on just the abx after ditching the steroids. Phew!!

Bumping this for you. Maybe someone that can help will be on the boards today.

Yes, you are right. Find another doctor!

Have any of you tried Lactoferrin? I recently started giving it to my sick cat. It's supposed to strengthen the immune system and ward off viral, fungal, candida and bacterias. I noticed on the bag of the bottle I bought for my cat it said something immunoglobin, too. I have been giving her the bovine colostrom with lactoferrin, but also lactoferring water additives, etc. Here's a link that explains it pretty well and is easy to follow. http://www.worldwidehealth.com/health-article-Lactoferrin-Amazing-Health-Benefits.html And a link to the product I am giving my cat: http://www.luckyvitamin.com/p-19028-symbiotics-lactoferrin-with-colostrum-plus-120-capsules Thoughts?

Try contacting Dr. James Leckmann, he is one of doctors running the study about PANDAS. I had emailed with him a while back and he was extremely kind. Gave me a few names, unfortunately the other docs were a dead-end but he tried. In his email reply back to me, he had stated the following: "I am currently working with Sue Swedo on a PANDAS treatment study. Unfortunately, your son is too old to be in our study, otherwise I would put you in touch with the person in charge of the screening process." Try emailing him, he'll get you to the right person. His email is: james.leckman@yale.edu

Oh and this morning, my son was great again. Got up on his own without a fight, ate his breakfast without complaining. Seemed more organized. Was very thoughtful and asked me a few times if there was anything he could do for me before he left for school. Hooray.

Thank you, thank you. I will pick up that book. Maybe it will even be available for download onto my ipad. I may be in a good position to try an LLMD now, because both myself and my son's deductibles have already been met. So, perhaps they will have to reimburse us a portion. If you have time, could you PM a few of the doctors you know of?

Yes, this happens to my son sometimes too. He frequently urinates and sometimes in the middle of the night he will wake up to go 2-3 times. I do notice it is when his other symptoms are amping up.

thanks for all that information. I'm not sure Dr. L is in the cards for us right now. It was hard enough to pull off the entire day to see Dr. B. I also need a doc that takes insurance, not sure if she does. I'm self employed and pay my own insurance and we have hefty deductibles. Last year I paid almost $16000 just for insurance or deductibles not including all the copays and medicines, etc. Does Dr. L take insurance? Lyme was only suggested for me, but Dr. B. probably tested my son for that as well. I'm only a week into this journey, so I haven't made it on to anything else. My problems started in my late teens and early 20's fainting and all kinds of weird stuff I have seen in many lyme links now. IF that's what I have, I'm betting it's possible my son was born with it. He's been a sick kid since day one. Spend a week in hospital with unknown illness and high fevers when he was only a week old, etc. Yesterday, I had my left ovary and tube removed. The ovary was constantly growing hemorrhagic complex cysts, my fallopian tube was attached or stuck to my intestines (which I called spot on, told my doc a few weeks ago I thought my ovary was pulling on my intestines!), he found more endometriosis and cut that out as well. This was my 3rd surgery in 15 months. I can't even move today. So, I'm just praying the antibiotics curb the flare for now and will be on a mission in a week or two to get things in order. Does anyone have a recommendation for a lyme doc in the northeast? And that takes insurance? I found a nurse practitoner online that is out of RI or in MA closeby, I can't remember. Her website was great, I'll have to go check her out again.

Same here. Light sensitivity and smells. I am EXTREMELY sensitive to smells as well, laundry aisle in store makes me sick and pissed off in 30 seconds. And, we have a skunk in the neighborhood that strolls around at night in spring and summer and it makes me MISERABLE. I can smell him when i get into my car the next day and even with our windows closed. My son, too. My will not go to any craft stores with me because of the smells and some department stores. He also will not use any type of lotion because he doesn't like the way it feels.

tpotter, thanks so much for that information. I will use it!!

Dawn and Cobbie, So sorry you had such terrible days. It's so exhausting and truly sucks the life out of you. I'm going to knock on wood here, but today has been SO much better with my son. SO much better. He's upstairs doing his homework, thought he needed help with his math, but said nevermind he gets it now. Figured it out on his own!!! No name calling, no defiance and not crying AT ALL. I'm convinced now it was the steroids for sure.

I wish they would focus more on common behaviors, meltdowns, rages, etc.