bigmighty

Thanks. I was hesitant to post this, because I know how many here have kids who are not yet doing well. But a year ago, I recall reading a similar post by another parent whose child was much better. I recall feeling a combination of extreme anger/frustration that it was her child and not mine who got well, mixed with a renewed fierce determination. On some level, it gave me hope. If someone else's kid was getting better, then I should not give up the good fight because it could happen for my kid next. I read that post from a mom whose child got well on the day after our appointment with specialist #6 had gone poorly. In fact, he (a world-renowned immunologist) told our son that he was wasting his time doing silly things and that he needed to get serious about ERP and just stop giving in to his extreme mental illness. After that awful appointment, (which took three months to line up and required calling in favors because the doc wasn't even taking new patients), I really was ready to throw in the towel. Then I read a post from a parent about her child in remission, and went back to researching, scheduling yet more appointments for yet more opinions, etc. Virtual hugs to all who continue to fight the good fight.

Today it has been exactly six months since DS went into a full remission with all symptoms disappearing in an instant - the complete opposite of onset - just like a light-switch turning back off. He is taking Augmentin 875 x2 daily, set to reduce to Augmentin 500 x2 daily in January. We will be armed with a prescription for steroid taper, just in case he gets strep right away once he is placed on the lower dose of antibiotics. Still has overall IGG around 500, so having frequent labs. If that worsens, he may require IVIG. But, for now, all is well. Thanks to everyone here for the advice and support that got us to this point. I wish that what worked for DS worked for every child. At present, he has no recollection of ever having been sick.

My son swabbed positive for strep and labs taken at the same appointment came back with a titer score listed as "too low to calculate." We had done labs a month earlier with no elevated titer and assumed no PANDAS. When we finally got in to the specialist she decided on a throat culture, which was positive. She ran more labs that day that showed nothing unusual at all. When was your DD's last throat culture?

Is your DS on antibiotics? Just asking because Erythromycin and a couple of other antibiotics cause me to have tremendous lip pain. DS's lips bothered him when he was no Cefdinir.

DS is on Aug 850 2x daily and he weighs 100. He regressed significantly for the first six weeks on augmentin. Dr B told us to hang in and wait it out, which was tough. Did steroid taper at 10 weeks and by week 18 DS had gone into remission. No idea if that was caused by the augmentin, the steroids, or a combination of the two.

DS is on Aug 850 2x daily and he weighs 100. He regressed significantly for the first six weeks on augmentin. Dr B told us to hang in and wait it out, which was tough. Did steroid taper at 10 weeks and by week 18 DS had gone into remission. No idea if that was caused by the augmentin, the steroids, or a combination of the two.

I bought it at a local grocery store called Harris Teeter. Not cheap - $9 for 30 teabags. I know you can get it online. It has only started being imported into the US within the last 18 months, so it may not be widely available yet.

Tastes a lot like basic lipton tea, but looks like you put a drop of red food coloring in it. You can drink it any way - hot, cold, with or without sweetener or cream, etc. It is caffeine free. I did put a pinch of sugar in it. Smells mildly vanilla. They say it makes some people sleepy, so might want to try close to bedtime.

Slightly off topic, but I thought some might be interested. Within the past year, I developed a lot of new food allergies, and also significant eczema on my eyelids. The dermatologist has tried five or six different creams and nothing can touch it. Well, yesterday, I had my first glass of rooibos tea. It's supposed to have some anti-inflammatory properties and be good for soothing the digestive system. So, I woke up this morning and my eyelids looked perfectly normal for the first time in seven months. All of the flakes, scales, discoloration and welts are completely gone. You can't tell there was ever a problem. I did some more reading and it seems as if the rooibos is possibly the reason. Allegedly, it's supposed to reduce eczema, allergies, and asthma. I had another cup today. I am wondering if there are other healing properties in rooibos that might make it worth exploring with respect to kids with PANS. Thought I'd throw out the idea in case anyone wants to explore. Best, Suzanne

We found that if we shooke the bottle for two full minutes by the clock on the day we received the medication, then shook it vigorously for one full minute prior to each dose, we could keep the liquid equally potent for the full 10 days. If we didn't shake enough each time, during the last couple of days, it became obvious that DS was not getting the full strength. Serious shaking each and every time helped.

Not a clue as to what in the milk I'm allergic to. Quite possibly, I am allergic to the milk protein. I guess I can try water buffalo mozzarella and see if the same thing happens....

So - Back in January, I became suddenly extremely allergic to both wheat and dairy. Basically happened overnight. I've done every gut healing thing I can think of, been to many docs, etc. No luck. After reading about camel's milk, I decided to see if it might help with my food allergy situation. Got it yesterday and tried about 3 ounces. It was instantly obvious that I'm very allergic to it - despite having never had it before. Obviously, I'm allergic to the thing in cow's milk that is the same as camel's milk. Sigh. I was sort of hopeful. Oh well. At any rate, rather than waste it, I'm going to start making DS milkshakes with the rest and see if his IGG goes up the next time he has labs.