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.

Suzanne, this is encouraging. Can I ask what does of Augmentin your son is on. My DD7 is on 600 ES X 2 daily. She has been for about a month. The first two weeks were great. These past two have been horrible. Hope this plan works for you. I hadn't occurred to me to have Myco titers for my husband and I, so thanks for mentioning. DS takes Augmentin 875 2x daily - has been since December 2011. He was on a 19 day steroid taper in February - starting at 35 mg. DS was 13 and 77 pounds when this treatment was started. He is now 14 and weighs 102. He has grown 4 inches and gained over 20 pounds since the remission started in April. He improved slightly the first two weeks, then things were horrible for the next month or so. If you haven't already done so, get on Dr. B's or Jennifer's (PA) calendar for a conference call in about a month. It will give you a chance to report on how things are going and to see if they want to explore adding steriods in the future. Best, Suzanne

Be aware that the first month on Augmentin may show a couple of social and behavioral set-backs. Hang in there and don't get discouraged if you see a few changes that might seem to be for the worse. Dr. B advised us to wait it out, then add a steroid taper. After 4 1/2 months on the Augmentin (with some prednisone thrown in after 2 mo on the Aug), DS went into full remission. It has been five months and still no OCD whatsoever. This certainly does not happen for everyone, but it did in DS's case. Also, get some Florastor and/or other probiotics if you don't already have them. The antibiotics kill all of the good bacteria in the gut and your child can get a C-Dif infection if you don't replenish. Hugs and hang in there - Suzanne

You can buy them at most grocery stores and pharmacies. If your child eats yogurt, that should help. Florastor is a brand name for Saccharomyces boulardii lyo. DS only takes it once a day - and the pills cost close to $1 each, so it is not inexpensive. But, for him, it results in no digestive issues and it restores good bacteria to his digestive track that gets killed by the antibiotics. If your child does not take pills, I think they have it in a powder form. And there are many other probiotics in either pill or powder form (like Culturelle) that might do the trick. Warning - the first 36 hours on probiotics, the symptoms might get a tiny bit worse. Then they should resolve.

What probiotics are you using? DS had good luck with Florastor while on keflex.

Thanks, all. DS would not speak to someone he did not know, so the idea of getting a scribe is not realistic. If they never grant keyboarding accommodations, there is no sense in my pursuing that part. I will keep gathering and submitting data in an effort to get him approved, at some juncture, for the additional time.

We asked this, as well. We were told that Dr. B only ordered his own product and used it in his own facilities. This was six months ago, but at that time we were told that Dr. B. would not write an order for IVIG other than under those circumstances and that he wouldn't order the product from other than his own supplier, regardless of whether insurance had an issue with that. He did say that if we found a local doc to be DS's primary physician and that this person was comfortable serving in the role of primary, he would at least e-mail exchange or speak with your local doc on the phone to give an opinion, if asked.

We supplied a letter from our pediatrician to high school explaining PANDAS and DS's educational issues and needs in detail. They submitted that letter with a request to the College Boards requesting possible keyboarding on PSAT test for DS. College Boards responded immediately asking for: a clearer statement of the exact disability (which we thought we already provided in the fact sheets we attached); a thorough summary of the assessment procedures and evaluation instruments used in making the diagnosis; full narrative summary of evaluation results along with a listing of exact symptoms and explained impacts; an exact rationale for each accommodation requested; a list of all evaluators' names, titles, license numbers, professional credentials, addresses, and phone numbers; significant scholastic proof of degree of difficulty without accommodations; documentation of a specific defined fine motor problem along with its separate diagnosis; several academic tests of writing;..... okay, there's more, but you get the general idea. So, I e-mailed NIH and asked them to send a letter of diagnosis and they responded that there are no "official assessment tools" used to "diagnosis" PANDAS, so they are not sure their letter will help. They are going to send a letter, but no idea if we will have any luck gathering this info. The guidance counselor at the HS said that DS probably would not qualify for the keyboarding accommodation because he does not attend OT therapy and have a separate diagnosed motor challenge. Also, we do not have significant scholastic proof of degree of difficulty without accommodation because his middle school offered every accommodation we requested. They were very proactive, so they offered assistance as soon as he said he was struggling. Has anyone had any luck getting keyboarding accommodation on the written portions of the PSAT/SAT, AP exams, etc.? DS can print about four sentences, but that's the max and then he's out. The school is telling us that it looks like there's no chance of meeting all of these expectations to the CB's satisfaction and that we ought not to even bother. Any BTDT advice would be appreciated. Thanks - Suzanne

Thank you all so much for the stories, insights, and doc recommendations. Our ped will do as we request, so we'll just skip the shot. Again, I cannot tell you how much I appreciate knowing this information. Thank you! - Suzanne

DS 14 has been in PANDAS symptom remission for 100 days (yay!). Pediatrician wants to know when he will get meningitis vaccine. I know some kids get recurrence of PANDAS symptoms from vaccines. I also know that a lot of teens get meningitis and it can be very serious. If you were us, would you go ahead with it, or wait until your child had been symptom-free for longer? Thanks.

http://online.wsj.com/article/SB10001424052702303754904577532833079592486.html

how old is your son? I am amazed NIH put him on asprin! did they think it would work like ibuprofen? did it do anything? DS had just turned 13 at the time. He was on one aspirin 3x daily for maybe six weeks and then they switched him to ibuprofen. At the time, DS received his 2nd round of IVIG and had gone into remission. Then, he got strep three weeks later. They suggested the aspirin, along with curative dose of antibiotics. I can't remember now, but I think they might have said they suggested it because it was used for rheumatic fever patients. When they realized we were going to require something anti-inflammatory for the long-term, they switched us to ibu. It certainly worked to reduce anxiety (but not the OCD). It was better by far than the ibu for that, but they said we couldn't stay on it any longer.

NIH put DS on aspirin 3x daily for a few months last summer, then switched him to ibuprofen in the fall. He was on ibuprofen 3x daily for seven months, with monthly labs to check kidney and liver functions. I have heard from others that this is not recommended. But we had four different docs involved and all told us to continue when they saw what DS was like with versus without. We tried to taper back off ibuprofen every third week and, when things hit the fan quickly, just ramped back up again and tried again in three weeks. He successfully tapered off ibuprofen in March.

Call and see if Dr. B. or his PA, Jennifer can schedule a conference call with you tomorrow. If yes, talk to them about this. It will cost you $100, but would save you a trip if your gut is telling you that you aren't going to do the IVIG right now anyway. And just because you don't do it now doesn't mean you can't change your mind and reschedule it in a few months. If it were me, I'd schedule a conference call ASAP. If they can't squeeze you in for the full call, ask them to have Jennifer make a quick phone call to you ASAP. If they realize you are thinking of canceling IVIG, they will want to talk to you. Because they will be scrambling to fill the slot and get someone else lined up to travel.