thereishope

My son never had lyme testing done. He is 6 and no cavities or teeth problems. No PANDAS problems with cleanings or when losing baby teeth. He lost I think 4 baby teeth so far, all during the recovery of a strep triggered exacerbations. Losing those teeth didn't cause any setback. Now, for myself, I have horrible teeth. I don't recall any dental issues during his pregnancy except for an exposed nerve that healed without invasive dental work.

Glad to hear that things are starting to get better!

I think I'm getting tired. I'm confused. What med is he on right now? What med did you see the most success on?Was he still on that when you started to see backsliding?

I don't know much about Zith dosing. Do you or anyone know if that's a prophylactic dose she mentioned or what a doc would give for an infection. He will get better, but this is also an unforgiving disorder. You have to fight PANDAS to get your child back. My son had back to back strep infections. You sit there in disbelief that they can sick again so fast.That made his symptoms from the second exacerbation rather bad and he needed a steroid to jump start recovery. His "setbacks" during recovery were different than when it all came slamming back due to another infection. I'm not saying your child still has strep or has another infection but if he is sliding backwards fast or after a couple days not improving, call your doctor about increasing the meds, or consider asking for a steroid burst as suggested by dcmom. Now, my son did have big setbacks that lasted a couple days during recovery and then snapped out of it, but those were different than his trademark, beginning of a strep infection, meltdowns. A lot of it is following your gut and knowing your child.

Sudden onset was obvious for my son. September 26, 2008 at around 5:00 pm. However, I didn't realize it wasn't going to leave as quickly as it came for a couple weeks. I kept convincing myself something was causing it like new school, his bday. Well, something was causing it, a non symptomatic strep infection. That reason never crossed my mind. Have you done the Cunningham test? As for the blood tests.... From PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 From PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

I'm sorry I did not read all responses. All I think is my son had contamination/dirt/germ fears in his first exacerbation. I can't imagine scrubbing him like that. Is it okay to sit in the tub and breathe in the bleach smell? What would the bleach do to your hair?

The more I think about it, the more mad I get. I mean, they are putting your daughter through more emotional distress since she now has to go through everything all over again with another doctor. Talking about it to a stranger isn't easy, even for a teen like your daughter. My son went to 2 psychologists ( first one was AWFUL) and a psychiatrist for an eval. The more docs he went to, the more he clammed up and stopped talking to them.

Don't say "stupid'. They probably made you pay up front since insurance didn't cover it. You followed the rules. There's nothing stupid about that. It's up to you if you want to just leave it be and move on. Sometimes it's just too much to find the energy to fight things like that when you have bigger problems to deal with. If you do want to fight the billing charge, do so. It is up to you. If you paid by credit card, you could call the that company. You may just feel better if you write to the dr, np, and their billing company and express how you viewed what happened. It'll be your therapy.

I believe some have increased dosage or if they have another infection, some have switched abs for a time being. Perhaps someone who has been in that situation will chime in. I can't rememeber, are you seeing one of the "top docs" that are often mentioned on here or are you seeing someone local? Do you have a supportive doctor? He goes to boarding school, correct? Have you asked the school if anything has been making rounds in terms of illness? Tha may help you identify the problem.

Even now when my son does something that freaks me out, I turn to my husband with the look of "does he need to go to the doctor". But my hubby reminds me that he's only 6 and he will misbehave. I've tried to remind myself more than once that if he behaved perfect all the time, then I should be worried about that too. How long has it been since you started abx for strep?

Yes, you will get your son back. As he heals, you will see bumps in the road with bad moments mixed in with the good. The important thing is to not be in denial when you see it all come flooding back without reprieve. You may think you won't be in denial, but part is human instinct to feel that way. You know once you are told it is strep agian what you are in for and it's hard to mentally prepare for that. But the quicker you catch it (IF he ever catches strep again) the better off he, and you, will be. My son has had 3 strep triggered exacerbations. I got him back each time. It was hard and we went through a lot, but I got him back. He does have slight setbacks with other triggers but nothing at all compared to strep.

I'm sorry, but I don't think even proph abx are 100% effective. There are some on here who have tested + for strep while on abs and you can also get a false negative while on abs. I believe the idea of proph abx is that it will help prevent infection. Your chances will lower but I don't know by how much.

You know what, I don't think it's a fluke. My son was the same with eating. If I said something about it, he wouldn't eat, but if you left food where he could reach it, he would eat. They don't want attention to be drawn to it. They don't want to be told to do it. They want to be in charge and make it look like it is their decision. I tried lists with pics on it (since he couldn't read) for my son and all he did was take crayon and draw things like tv and him playing in between what I did. Frustrating!

bumping.

bumping.

bumping.

bumping up for new people.

I'm going to refer to that $1000 tab you now need to pick up. That money needs to go to a doctor that will actually see, speak, and work with you. That just isn't right. When you made the appt, you made it with the knowledge it was with the doctor, correct? Do you have it in you to write up a letter stating how you were misled when you made the appt, go into detail about what happened,and mail it along with the bill to billing,the doctor, and the the institution she bills through (perhaps a hospital?)? That's just too much money to say "oh, well". Maybe they will at least adjust the billing.

Oh no, Doug! Your family is in my prayers. Have you contacted Dr K?

My son did a 5 day burst. It was early on after he contracted strep. After 3 doses were in his system, his PANDAS symptoms began to plateau. Then we started to see improvement. Overall, for my son, it aided in recovery. He did not get close to 100% himself while on the steroid, but I would also say 100% it was a success for my son.

Okay.........nurse practioner did interviews.........okay..........nurse practioner called with results..........and what was itemized on your bill? Nurse practioner? I'm thinking not. Heavy sigh. Did they give you a diagnosis? No mentioning of antibiotics? I think I'm confused as you. Can you go more into detail what the nurse practioner said when she called? It may be time to chalk this one as experience and see someone else.

First, I haven't read all responses so I apologize if I'm duplicating what others have said. He wasn't going to try different antibiotics until you asked about them? Just go straight to IVIG? I know your son is 10 but, and this is my opinion, I would want to try stronger abs first. That's just my opinion. Does IVIG clear a person of bacterial infections that they have at time of IVIG? Even if I did do IVIG, I would still feel more comfortable doing abs prior to treatment and years after. This is my next question, do you want to do IVIG? Is it an option for you, even money wise? A steroid burst helped my son with recovery (w/o IVIG), but it was also used rather early in his second exacerbation after we found out he had strep again. If you believe you would be using it soley as a diagnostic tool, well, if you have that much worry about doing it, I would say to pass. Will he consider still doing IVIG if you skip the streroid burst? How confident is he in is dx? Have you done the Cunningham study? One more question, how does your son react to Ibuprofen? Just don't rush into your decison. Make sure you feel comfortable in whatever you decide.

Yes, with each exacerbation the symptoms varied. There were many overlapping, but the severity of each changed. My son was like your with close back to back exacerbations. The second one did hit him harder. I think he wasn't done recovering from the first and that just made things worse. If it all came crashing back, my call is to go for a strep test. The cold you referred to could be the culprit, but you need to rule out strep. Are you giving him Ibuprofen right now in attempt to alleviate some inflammation and ease symtpoms? If not, start doing that. it may help. Also, you and your husband should rule out strep as well. Also, my son's OCD main issue during the first exacerbation was contamination/germs/dirt. He washed his hands until they bled. I did show him to trade off the handwashing with wiping his hands on his shirt. Some may not agree to teach him a different compulsion but the hand washing had to stop. And it did ease up after that.He did also use the excuse of having to go to the bathroom knwoing he would be required to wash hands afterwards. At a young age, kids learn to lie to complete their OCD habits. Like your son, he also walked around with closed fists, wouldn't use his hands to pick things up. he wouldn't touch toys if he thought his sister touched them (she was 'contaminated"), he would ask if we touched heer and tell us to wash our hands if we did, if he thought he saw you touch your face, he'd melt down screaming, we couldn't hold his hand when we were even in the parking lot (he was 5). we had to hold his wrist. We could handle his food, get his utensils, get his cup, pour his drink, etc.Thank God he's over that and none of those problems remain.

One of the best things my aunt told me is that psychiatric disorders are getting recognized more and referred to more as neurobiological disorders. I like that term much better. There are too many stereotypes that come into play when one refers to issues as mental disorders and psychological disorders.

Buster's charting system: http://www.latitudes.org/forums/index.php?...ic=6685&hl= I think there is a "fancier" way to post links, but I don't know how to do that. I have various things saved in my "favorites" and just cut and paste what is in the browser.