cobbiemommy

I feel for you.

He had his tonsillectomy on November 4th. He was doing so well on steroids (no verbal tics, two great days of happy behavior) until we went from 45 mg to 10 mg. After we got him kind of calmed down, we got the story. A little pipsqueak on the wrestling team that is half his size has been giving him verbal crap. Of course he cannot deal with that very well and he knows he can't retaliate physically--so he is super frustrated. Asst coach told him to ignore it, let it go. I know this is the correct approach and we have tried this with and for him, but he just can't let it go. DS was very insightful; he knows that he is not acting normally. He doesn't understand what is happening to him, but he does know that something negative is happening. DH ended up calling the coach and explaining the current situation. Coach has been so wonderful about PANDAs and is still wonderful and supportive. He said that he would deal with situation at practice. He has blessed our whole family with his kindness. I thank all of you for your support. We are not great, but it gives me hope that my son can look at his situation and know that it is not right and he wants to get back to feeling better. I did not give him the Augmentin; waiting to hear from doctor in morning. We just have to figure out which keys fit this PANDAs lock.

DS, 14, is in full meltdown. Oh dear Lord we need help. He is only on 500 mg of Keflex and 10 mg of Prednisone. I have some Augmentin XR and that has always helped him in the past and I think I will give him some to start the calming process until we can hear from the doc. I called their office the minute I got him in the shower. He is bawling and asking why everyone hates him and why is he the one everyone hates and picks on. Everyone on his wrestling team does not hate him but he has been so mean the last several weeks that I'm sure they are sick of him. I know this is tied to the doctor taking him off abx after his tonsillectomy and then later they put him on steroid taper to counteract all the inflammation. We weren't great before, but he was definitely functional. Now he is absolutely not...

DS, had 26 bicillin shots over 26 weeks back in 2009 and I don't think that they worked for him very well. He was taking oral medications as well at that time. I just remember that they were horribly painful (he was getting an adult dose) and after he was crying so much from the pain--we just said No More. I know that this is not really helpful, but it was our experience.

Ds, 14, is on a second steroid taper since his tonsillectomy in early November. He is getting some relief from the joint pain and the verbal ticcing. How long could it take to see some imporvemt in his mood?

Kevin Flynn of Healthcare Advocates of Philadelphia, PA is a wonderful advocate. Just google him and you will find his contact information.

Wonderful news. Our ENT was wonderful and supportive and it does make a world of difference. The word is getting around...

I'm not sure how this relates to your case, but here is my experience with ammonia and liver. My mother had Hepatitis C and was treated with interferon and multiple other interventions. As the liver was failing, the ammonia level goes up in the brain. Ammonia causes memory issues and personality changes. Many things can cause elevated liver production of ammonia; not just GMO foods. At this point, follow the treatment recommended by the doctor and later you could make dietary adjustments if necessary. You need to get the ammonia level down ASAP.

My son is very stout and sturdy. He is 5'10" and 208 lbs at age 14 (He has recently lost 15 lbs!!). I don't think there is one body type for Pandas.

I am going to ask for that dose of Augmentin for sure on Wednesday. He got a horrible rash on his stomach, back and waistband area. It took many weeks of antifungal spray and finally oral Diflucan to get a handle on the rash. Not one other kid on the team got a rash. The weird thing was that the rash was only under his clothing; the exposed areas on his arms and legs did not get a rash.

Cobbie- Isn't that a very low dose of Amox for his age and weight? I think so. He is 14 and weighs in at 208. He previously was taking 875 mg of Augmentin XR.

Ds, 14, is much worse than before his tonsillectomy. He is fidgety, paces, anxiety through the roof and wakes up every night. He argues with his Dad and I about everything. He is currently on 500 mg of amoxicilin and has tapered down to 10 mg of prednisone. We see doc on Wednesday and I want to ask about putting him back on high dose Augmentin. The steroid dose was not as high as the one a previous doc had used and I think that is why the results were not as good as before. Any advice?

I would trust Dr. N and if your child is under medical supervision; the outcome should still be favorable. My son had fantastic results on a steroid taper. It really highlighted the autoimmune component for his doctors. Best of luck to you.

That is what is kind of scary--he was doing very well at time of T&A. He was probably at 80%. He is still trying to participate in wrestling and I think it is all just too much for him physically.

How is your dd now?

We are five days off of antibiotics and things are going down hill sooo fast. Ds just had a tonsillectomy two weeks and five days ago. Do we get back on abx? Steroids?

i feel like he is the same or worse. He has more energy, but if he does anything physical--he is just wiped out. Mentally, he is alert, but physically he is toast. And crabby...

We are 14 days post T&A. He seems to be doing well. I don't notice any regression, but I don't notice any big gains either--except physical energy! He still picks at his fingernails and he still has some anxiety. He was given ten days of Augmentin and now he is finished with that. If anything, that is the scariest part of all; that he could regress and we would not have abx to get him back on track. We go for follow up with ENT and immunologist in two weeks.

I was going to say skip the dairy, but 3bmom beat me to it!

I knew it was something (didn't know PANDAs) when he took Zithromax at age 9 for a week and his attention span and personality improved so much. Went to the internet and put it together. Our son went from a calm and quiet 3 year old (seriously) to a needy, clingy, obsessive 4 year old with OCD. It took a loooooonnnnnnggggg time to connect the dots.

That is fantastic news. Good luck to all of you.

DS, 14, had an adenotonsillectomy yesterday. He came through the procedure very well and we are keeping him on pain meds and fluids as much as possible. He had a sinus infection at the same time, but they went ahead with surgery. He is not allowed to blow his nose for two weeks. He dug out the nastiest blob of gunk-TMI-but I am sleep deprived and now he feels much better. Hand sanitizer any one???? Doctor said his tonsils were cryptic and that he tonsilloliths deep in the folds. That could be the source of the biofilms and bacteria. EWWWWW. We won't know for a couple of days what the pathology report states. Are there any signs of improvement I should look for?? I'm almost not daring to hope...

My grandmother had four siblings with Alzheimers. My grandmother died of breast cancer and father died to young of heart disease. The links between Alzheimers and PANDAs are a little scary.

Titers do not tell the tale. Our immunologist in Omaha sees them as an indicator, but not definitive. Would your primary care provider prescribe Augmentin or a steroid taper? Some would disagree with me about the steroids, but they absolutely gave us our son back for a short time. At least we knew what we were dealing with was autoimmune in nature. I wish you all the best as you go forward. Though this is little consolation; since your child is older, it will be easier to make the case with the doctors that this is not autism or conversion disorder. Good luck.

I am very concerned. We have been all over the country trying to get a handle on his health. We have a new immunologist, ENT, and neurologist. He was cleared for wrestling by pediatrician who knows the full medical history. This is the first time that DS has wanted to participate in a sport in his entire life; so after he was cleared by doctor, we let him. That being said, in 9 days, he will have T&A done. He will be out for two weeks and we will see ENT and immunologist in those two weeks.