peglem

We did rifampin w/ augmentin.

1) We redid, daughter was not particularly stable to the best of my recollection. We did wait to get a negative strep swab before vaxing. 2)She did not hold protective immunity afterwards. 3)No noticeable adverse reaction.

This website has some good ideas for dealing w/ rage: http://mychildsafe.org/rage.htm

I think you have to wait for the week's video lecture to be posted. It isn't super clear but I'm assuming sometime today they'll post the video and (hopefully) email those who registered. Okay, thanks.

Okay, I registered and watched the intro- where are the lessons? I didn't see anyway to get to them.

I'd say 4 hours is probably sufficient time.

Florastore is a beneficial yeast. Antifungals kill it and other yeasts. Its the same reason you shouldn't give abx at the same time as probiotics. I don't think it will cause any problems, you just lose the benefit of the florastore.

Is there a place where all the horror stories are being collected? I have a friend who was terrorized by them when her NT child fell and broke her arm. They did finally release her child back into her custody, but probably would not have if it had been her special needs child. Anyway, she is still traumatized by this, after several years and would like to contribute her story if it would help.

I thought sacchB was non colonizing?

I do not even say PANDAS to doctors (when I see a new one). I just say that she has an autoimmune disorder that is triggered by infections. If they are savvy they know what I'm talking about, if not- I've described the problem pretty well and they don't have to ask me what PANDAS is or go thinking that I self dx'd off the internet.

Exactly! My pediatrician told me they are taught to refer what they can't figure out to psych.

Madismom, tell us where you live and we'll see if we can help you with a doctor. Most of us have had trouble finding doctors who will help.

Sinus infection? Adenoids? When I taught kindergarten there was a little boy who's breath smelled like poop- really, I spent days trying to find out who was having accidents in their pants. Turns out it was infected adenoids and the child's behavior improved immensely after T&A.

If you need a blood test- see if you can get the draw on IVIG day, before they start the drip. He'll be jabbed anyway, so 2 birds with one stone.

Yes, ibuprofen is anti-inflammatory.

Okay, she just had her 6th dose yesterday. It is helping. Here's how I know: Things were humming along okay until a few weeks ago. The immunologist called to tell me that the insurance has a new policy of requiring prior auth for IVIG, and if it wasn't authorized in time, she wouldn't be able to do her upcoming, regularly scheduled IVIG (every 3 weeks). It wasn't, so we had to cancel. As usual, she started a small flare a couple of days before she was supposed to get IVIG. It was worse a few days later when she was due for her methotrexate-not the worst, but definitely heading towards the bad side of things. But, after her methotrexate, she seemed a bit better the next day and for the next 2 or 3 days, things were fine. Then, Wednesday of this week- all ###### broke loose: full flare. I got on the phone with the insurance liason and had that prior auth by the afternoon. The infusion center can't get her in until Tuesday, though. So we've been stuck in full on flare since then. EXCEPT, Saturday she had her methotrexate and today is very remarkably improved! Praise the Lord! In a way, I guess it was a blessing to have the IVIG delayed because it demonstrated how quickly she decompensates w/o it and gave us a good chance to see the effects of methotrexate when she's in crisis. As far as the mycoP goes- the positive test was in October, but did not start biaxin until late November when we saw the doc that ordered the tests. She's a pediatric neuro who treats PANDAS, so you can imagine she is booked solid several months out. Anyway, We'll get the labs to check treatment progress on Tuesday, before the IVIG, and we see the neuro again on the 14th. BUT, I asked MIL (who lives with us) to ask her doctor to check her titers for mycoP-she thinks I'm nuts and refuses to do it. Until, her and hub came down w/ this coughing ICK disease in December and have had trouble clearing it. Hub told his doc about his daughter being positive for mycoP so he treated for that, and when hub didn't get better w/ 10 days of biaxin, he did the blood work and said he definitely has mycoplasma pneumonia and has extended his abx. So MIL, just had her doc culture her sputum because she doesn't want to do the blood test. I doubt they'll find anything because mycoP is notoriously difficult to culture. Her doc only put her on amoxicillan- 2 courses so far. Guess he doesn't really understand ANYTHING! I may very well be a mycoP carrier, but I don't have health insurance right now and cannot afford to be tested or treated. I have wondered about lyme for Allie. I don't have $$ for testing beyond CDC and sure don't have $$ for a lyme specialist. Maybe we'll look at that when Allie's SS goes through. She does have stretch marks on her buttocks and breasts, though she's never had a significant weight gain and is not at all overweight.

Have you checked for thyroid issues? My daughter's skinny issues resolved once we addressed her autoimmune thyroid thing. Before that, she would always get a bit of a spurt from prednisone.

Maybe low blood sugar? My daughter has spikes of low and high blood sugar- low brings on meltdowns, high-fatigue. The ENDO suggested frequent snacks that include both protein and carbs. Its been working- snack every hour to hour and 1/2.

Are you using probiotics? Yeast makes my daughter hyperhyperhyper! Also, many kids are triggered by viruses as well as bacteria. So you might try adding or increasing probiotics.

I believe elevated IgM is a current, active infection. MycoP is the one that causes "walking pneumonia", so you wouldn't necessarily have identifiable symptoms.

May you be blessed with amazing healing!

In what way is communication impacted for her? When not in a flare she communicates (mostly wants and needs) through gestures and her iPAD comm. program. When she flares, she has great difficulty doing this- I don't know if its because her thought processes are interrupted, or she is physically incapable.

I marked improvement in language w/ treatment to indicate improvement in communication. My daughter remains nonverbal, but communication is hugely impacted by flares.

My daughter has been menstruating regularly for @ 3 years now. Her behavior gets pretty erratic for the week before (tanslate-ragey), and her sleep gets crazy, too-more sleep than usual. Her actual period seems to relieve symptoms though.

For us, and I know this is not true of everybody, steroids help to quell a flare. It suppresses the immune response-both inflammation and antibody production. If steroids help, I think it is an indicator that the problem is autoimmune. We were doing steroids every 6 weeks or so (we were flaring frequently), but her doctor thought that was too often, so we're trying methotrexate-a non-steroid immune suppressant.