peglem

I don't think reactions to steroids are consistent from child to child. We've only ever done 2 5 day steroid courses. The 1st one greatly reduced rages/aggression for @ 3 days- then my daughter got ill, with a fever. The only time she is lethargic is when she gets a fever, which is hardly ever- maybe 3 times in the last 10 years. But once that passed- the rages came right back. The second 5 day burst we did, had less of an impact on the rages than the first one, but still helped a little. But, I've heard of some kids responding magnificently to steroids and others getting worse...I don't think there's a way to tell how your child will respond w/o trying it out.

Oh, no she doesn't get steroids w/ her IVIG. I don't think she needs to as we are not seeing any side affects.

I don't know. What is that?

Our 1st 2 IVIGs were very low dose- less than .5g/kg, and my daughter got worse very quickly. We've had 5 IVIGs subsequently at 1.5g/kg and have had improvement w/ the higher dose. Can't comment on the 800mg/kg dosage as I have no experience w/ that. Here's a link to the thread where my experience w/ low dose is discussed. It also has some links to literature on it. http://www.latitudes.org/forums/index.php?showtopic=7868&st=0&p=64034&fromsearch=1entry64034

She started a slight decline @ a week before her 9/02 IVIG, but she was also premenstrual at that time, so I was waiting to see if the IVIG would help, or if it was just PMS. She was a bit improved after the IVIG, for about a week (and did get that Aunty Flo visit). Then started a slow decline...and we got a note from school about that time that somebody had gotten strep. So there are just a lot of variables. But also, we've done the rifampin/augmentin treatment 2X before, both with great results that were sustained for about 3 months. So, I'm wondering if we have some slow growing, intracellular pathogen that gets knocked for a loop with this treatment, but is not completely taken out, so that it grows back to symptom-producing strength in about 3 months. We'll see what happens with this round- and 3 months later.

Our pediatrician prescribes it for us.

For years and years blood draws were a 5 person job for us. Put her on the exam table, I'd climb on top, somebody would pinion legs, the other arm and 2 people to hold the "draw" arm. Later, as she got bigger, though she tried to cooperate, she could not avoid the fight or flight reaction- but it would only take 3 people. We give valium before draws now and though she still struggles, has gotten to the point where she can get a blood draw in the chair now. Have you tried using the Emla cream to numb the area first? That sometimes helps. It takes a very good, patient phlebotomist. We found a good one (she has a special needs child w/ a similar reaction) after being sent away from a lab who wouldn't help us.

We're doing 1.5g/kg every 4 weeks. But, doesn't the donor IgG last the same amount of time regardless of how much of it is infused? She had a port installed last month, which has made the hookup much easier. Its the anxiety over getting past the elevators that seems to be the biggest challenge now. Once we get the infusion going, she is kept entertained and is waited on hand and foot, and she gets a special store trip that day after the infusion...I think she has a pretty good time! Its like she's queen for the day.

Allie gets valerian every night at bedtime, and we've not had stellar results with 5HTP, so have dropped it (w/ everything else she takes!). I do have scrips for both valium and ativan which help some. I try to use them only when she's up against a known stressor, but have been using them more lately. I will get through this fine- been there, done that so many times. I'm just a little disappointed that we're not getting the help sooner. Thanks for all your prayers, support and sympathy. You guys ROCK!

Next IVIG is the 30th. It will be very difficult if she is like she is now!

I would be so mad! How can they do that? I think I would just bring up the words "law-suit" or "malpractice" and see what kind of reaction I get I think leaving someone with positive bloodwork untreated over the weekend is criminal! I know you didn't ask for advise, but I would insist. Oh, no, no, the labs were only ordered to check liver and kidney function and to rule out thyroid problems- to make sure it would be safe to use the rx. She did not have positive labs for illness (actually the opposite). Since we are on IVIG every 4 weeks+ zithromax, its really not possible to get reliable "check for disease" labs. And really, I so appreciate that her pediatrician has been so willing to do what it takes to treat her (even though his colleagues do not approve) I would never, ever sue or even threaten to sue.

Her worst symptoms are self injurious fight or flight rages, sprinkled with aggression towards caregivers. Also, she is having periods of 1/2 hour- 1hour whiney/screamy/heartbreaking sobbing, which I think I like even less than the F or F stuff. Yes, motrin every 4 hours.

No, this has been building for a couple weeks and I was waiting and hoping it was just a passing blip. I waited until I was sure it was more than that before I called the doc. The office is closed right now- but I don't think they'll contact him, because none of them understand how dire it is.

The thing is, I don't really blame the other pediatricians (much), it definitely is not routine treatment and they don't have the big picture. But, her pediatrician plays it very safe and before we ever did this treatment, while we were there in the exam room he called 3 specialists at the children's hospital to make sure it would be safe. There is no way he would okay this treatment unless he was sure the need was worth the risk. He was trying to not leave us hanging just because he wasn't able to see her. And he has come to trust my judgment enough to know that I know what I'm talking about. Oh, well, I did this crap for solid years- 5 days (that seem like a month)is not huge, but wish Allie didn't have to do this five more days. And its not like I can just take this kid to urgent care or the emergency room!

My daughter had a bad experience w/ omnicef 5 years ago (so its not that new!). That's one that really made her tummy hurt and did not help at all with PANDAS symptoms. She was on it for 21 days before her tonsillectomy. But she does great with zith...it varies so much from child to child.

We've had a resurgence of PANDAS symptoms (the really bad ones) and I called the pediatrician Monday. My daughter's doctor (no use taking her to anyone else in the practice) was booked for the day and out the rest of the week. But, they gave him a message and he agreed to prescribe the rifampin/augmentin and prednisone, once we got labs done- this stuff is hard on the liver, so he wants to make sure her liver is doing okay before her puts her on them. So, he leaves the order with his nurse, we get the blood draw and the labs come back good.... But, in order to call in the rx, the nurse needs to get a physician (anyone at the office can do it and there are at least 5) to sign off on it. None of her pediatrician's associates will sign off on those meds, even with the pediatrician's notes. So, we'll have to wait until Monday when he's back to start treating her. She's getting worse everyday, and I'm in for a bad weekend! Pray for me!

Still looking for the magic pill. Allie's in a downturn right now, and getting stuck is her major thing- even when she's better.

My daughter's early childhood SPED experience was probably the best years she's had as far as school experiences, although I believe hers was cross categorical. But, I think the bigger fear for me, in your circumstances, would be that many of those children may be "EH" due do infectious agents and your daughter may actually have more exposure to illness there than in the regular classrooms. Medically, I think most EH kids are referred to psychiatry, w/ little or no investigation in to what may be causing their emotional symptoms. And anyway, if she doesn't need that situation unless she's in exacerbation, I think she would benefit most from a "normal" environment, w/ modifications implemented when/if she needs them. Just my opinion!

We've been using taurine for @ 3 months. What we see is not so much a decrease in hyperactivity as an increase in ability to focus w/o as much distractability.

This would only be the 5 days. We've never done longer than the 5 day. The 1st time we did it, though, she got sick w/ a high fever on the last 2 days and the week after. Its not like she makes tons of her own antibodies anyway. And that's something that I don't quite get- how is she so efficient at making the autoantibodies, but not the regular ones.

Are you using anything right now?

We have escalations after dental treatment as well, but also with new teeth coming in, or baby teeth falling out. I don't think my daughter has ever had novocaine, but the fact that it happens in the absence of dental treatment, leads me to think that in our case it may be more related to tissue trauma in the gums.

Well, I guess I was looking for something more specific- I mean, suppressing inflammation would be a suppression of an immune reaction. But does it suppress antibody production in particular? I'm trying to decide whether to give it right now- while I think my daughter has some kind of bug surfacing- She'll be on rifampin and augmentin at the same time, but, though I'd like the autoantibodies suppressed, not so sure I want all antibodies suppressed. While I'm here- does it suppress the function of antibodies that are already in circulation (like from IVIG, say) or just reduce the production of new antibodies?

Does prednisone suppress antibody production or just decease inflammation? I've never been very clear on that.

What I would do is go see a PANDAS expert. All those other DXs are only labels for symptoms, and treatment for them will only address symptom management. PANDAS describes an underlying disease process. A PANDAS expert will most likely have some ideas about what to do in your situation and are more likely to have seen the sort of thing you're dealing with. Their treatment ideas will attempt to target the cause of the other "DX's".