peglem

Wow! This has so NOT been my experience! I live in Phoenix- a large city and have had a tough time finding help locally. Where are these "good open minded doctor who's only protocol is what will work"? That describes my daughter's pediatrician well, but have yet to find another specialist who has this quality. I'm amazed that you've managed to find doctors to help. I'm very nervous about when she ages out of pediatrics- where will I find another doctor who is willing to help?

I don't. Just know that doctors (both the prescribing doc and the pediatrician) do not want to do clinda long term. I think its because its hard on the tummy, but not sure.

My daughter is currently on 500mg of zith every other day. This is prophylaxis. She has had success with other things in the past that cannot be given over the long term: Clindamycin for 14 days when she had a positive swab despite the zith. Not sure what was going on there- rapid positive/culture negative, but the clinda did improve symptoms. We've done rifampin/augmentin combo 3 times for 14 days each time. The 1st time, especially was miraculous. The 2nd and 3rd a bit less dramatic.

So glad to hear that things are falling into place for you. One of the hardest things about this illness is feeling like all your struggles are getting you nowhere.

My daughter (at age 11!) had the peeing/pooping inappropriate places thing. It lasted a few months and just went away with treatment. We did not deal with it behaviorally, except to remind her that it belonged in the toilet. Still don't know what it was all about because my daughter is nonverbal, but thinking it may have been a compulsion. Although, once during this time...My older daughter had 2 Gameboys, an older one that somebody had given her and a newer one. Allie wanted to play w/ the newer one and my older daughter (not wanting her new one all messed up) gave her the older, less fancy one to play with. Allie took the older one, set it on the floor, and proceeded to pee on it. I'm thinking that one was a protest? But, other times during this period, she would just randomly pull down her pants and pee/poop on the floor. There was another time when she developed a fear of going down the hallway that leads to both bathrooms in our home. She did the potty elsewhere thing then, too, but we knew why. Then there was the period where she would go in the backyard and defecate in the dog's drinking water... Anyway, I don't think there is a danger of this behavior becoming permanent in a child who has been successfully toilet trained- it'll just be messy until he gets over it. I do use pull-ups for my daughter when she gets the PANDAS related nighttime wetting. I call them her "sleepy panties" but, she does go back to regular when the PANDAS episode resolves.

Yes, yes, yes! That's the one! Thank you! And thanks to all you who went looking to help!

No, I need something directed more towards young children- more on my daughter's developmental level. The site I'm looking for is associated with a group in British Columbia. Something like ocdbc- but that doesn't work.

I think towards kids- or parents helping kids. I already gave school "What To Do When Your Brain Gets Stuck." But, I remember this site had things like an anxiety scale and a simple story about OCD. I have not been able to find a local psychologist/therapist to help my child w/ OCD issues because of her communication deficits. I called everyone in our insurance network who claims to work with autism and every single one said they were not equipped to deal with it (including the local children's hospital), so I'm excited that the school is now on board and willing to adapt materials to work with her on getting control of the OCD. I'm so, so, tired of everybody insisting on ABA (which has NEVER worked) for her issues and demanding psych meds when that fails. So, after 13 years of schooling, finally somebody really understands what's going on...I really want to run with this!

Somebody mentioned it a few days ago, but I can't remember what thread its in.

Is it possible for them to offer him a "safe place" to go whenever he feels he needs a break?

I finally got my daughter's school to recognize that her behavioral issues are related to obsessive thoughts instead of autism...yea! So I'm looking for resources for them to help her deal. Somebody awhile back recommended a website for OCD- I think it was out of British Columbia. It had some very kid friendly materials. Anyway, I think it was bookmarked on my old computer and now I can't find it.

My daughter has blood sugar swings as well. I don't know if its PANDAS or something else. Generally speaking, PANDAS seems to make everything disregulated. Is she on a special diet? No, we did try GFCF for 4 years- I don't think it helped. We just try to make sure she gets something to eat every hour or so.

My daughter has blood sugar swings as well. I don't know if its PANDAS or something else. Generally speaking, PANDAS seems to make everything disregulated.

I think if you have epstein barr virus (mono) while on augmenten or amoxicillan it can cause a rash.

We've had UHC for years through Hub's work and its been great, until this year. They are not covering a lot of things that they used to, or covering them at a lower amount, leaving more for us to pay. My Hub works for a large company that self insures and UHC administer's their plan. We failed to read the fine print (probably) when we re-upped at the end of last year. We opted to keep the same plan we'd had-but there must have been some changes. They still cover IVIG, its just the new problems (like ER care) that saddles us with huge bills. CRAZY!!!!!

My daughter, age 12 at the time of removal was on treatment dose omnicef for a month prior to T&A, and 14 days of amox afterwards. Her tonsils were not inflamed/swollen and she showed no typical symptoms of strep- no fever, no sore throat. She did have many, many positive rapid swabs whenever she was not on abx. After finishing the amoxicillan, we assumed she would no longer get strep so no abx was given and no swabs were done for several months. (Plus, nobody wanted to swab her throat when she was recovering from the surgery.) After T&A she had the worst PANDAS flare we have ever,ever seen, and we have been dealing with this for a very long time.

I love the under water analogy!

Just real quick here- Yes, it sounds like your son wants to be compliant and do the right thing, but the OCD will not let him. His fear is greater than his desire to do the right thing. And: I suggest that they never give him a "bad report." Only positive: "Yea, _______ stayed in the room with us for __ minutes! He needs to feel really good and really brave for making the effort- and believe me, he is trying harder than any other kid in the room to do the right thing. Giving bad reports for behavior that is beyond his control just makes him feel like a failure.

It looks like histamine levels can be linked to pyroluria as well. I'm not a big fan of Pfeiffer Treatment Center, but I thought this was interesting: http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes

I don't have advice for you, but my daughter does get photosensitive w/ PANDAS flares.

Magnesium helps with my daughter's anxiety. We also use valium on an as needed basis, but not regular enough to establish dependency. The problem I've found with using supplements is that what and how much of it will help varies so much from person to person. You can get too much of a good thing and make things worse, or get not enough and think it doesn't help. Its all about finding balance.

Since they access a vein for IVIG anyway, can they just pull the blood before starting the infusion? This is what we do when we need blood draws, if we can wait until the next IVIG.

In one of Swedo's talks about the PEX/IVIG trial, she gives an example of a girl who was crippled by germaphobia OCD. After PEX, she convinced Swedo that she was feeling better by touching the hazardous waste bin in her hospital room and then licking her hand.

I do know what raises histamine. Vitamin B12 injections do. So does niacin and histadine. Histamine occurs in food as a result of microbial enzymes converting the amino acid histidine (present in all proteins) to histamine. All foods subjected to microbial fermentation in the manufacturing process contain histamine. Included in this category are cheeses, fermented soy products, other fermented foods (e.g. sauerkraut), alcoholic beverages, and vinegars. Foods exposed to microbial contamination also contain histamine in levels determined by the extent and rate of action of the microbes. Histamine levels reach a reactive level long before any signs of spoilage occur in the food. This characteristic has important implications in fin fish, where bacteria in the gut are particularly active in converting histidine to histamine. The longer the fish remains ungutted, the higher the levels of histamine in the flesh. Some foods such as eggplant and spinach contain high levels of histamine naturally. In addition, a number of food additives such as azo dyes and preservatives mediate the release of histamine. Some of these chemicals such as benzoates occur naturally in foods, especially fruits, and may have the same effect as the food additive in releasing histamine. http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm#foodsource. Also Carnosine http://www.diagnose-me.com/treat/T441722.html which releases histamine and prevents wrinkles (gonna get me some of that!!!) Also histamine increases inflammation. Now there's a double edge sword. Yes there are blood tests to tell histamine levels http://biocenterlab.org/tests/misc/histamine.shtml Odd both high and low histamine cause psychological symptoms. My son's IG... says he's very allergic. I would think that would mean high histamine... Odd thought, I wonder if the headache in our kids after IVIG is from benedryl lowering histamine? Nancy Thanks for this...very informative. I never give my child ibuprofen and she gets IVIG every 3-4 weeks. She seldom has side effects, but I wonder if raising her histamine level would increase SEs.

I get my child's multi-vitamin online from Kirkman's- SuperNuThera with P5P. I give her 4 or 5 tablets/day- just whenever throughout the day. But, I give extra zinc- just over the counter stuff from my local store. I give about 3X the RDA of zinc, again, spacing throughout the day. I don't think the zinc induces sleep though, more like prevents inability to sleep. I've been giving magnesium throughout the day as well, with a higher dose at bedtime.