peglem

For mycoplasma you need an abx that doesn't work by lysing the cell wall (penicillin based do) because myco doesn't have a cell wall.

They weren't concerned about a staph infection? Or was it not an infection, just normal staph that everybody has some of in their throat flora? I think that is a strange reaction to penicillin.

I think its seasonal affective disorder(something like that)? I hear you Peg Im sick of tis too.I really would like to do some fun stuff like maybe a vacation.Some place warm ,its cold in NJ .Our MD is a immunologist ,shes pretty great Ill foward her name if you want it .Shes at UMDNJ in NJ and she takes lots of insurances .Oh and she also is VERY VERY familure with Autism so thats great. Melanie Maybe in 10 or 15 years, when we've got the trip to MD paid off. I'm way out here in AZ. If we ever get Allie's health settled, I'm moving to Montana where I grew up (well, lived there as a child-I'm still working on the growing up!) and have family. My hobby, these days is to go on craig's list and look at MT real estate for sale...sad, eh? The last time our family went to Disneyland, Allie had a big, ragey meltdown in the middle of the fireworks crowd...now there's a story! I'd like to take her back sometime when she's better...try to give her back pieces of her childhood that have been stolen from us by this disorder.

SAD is what? I can't for the life of me figure out where I would find a rheum/immune specialist...the trip to Dr.L sapped our resources- we'll be paying for that for years to come. I'm weary...so tired of researching and searching and figuring out ways to convince people. I know this is temporary, and I'll get back to fighting soon.

The rheumatologist would not touch this...referred us to Dr.L.... This would actually be wonderful! So far, nobody even has been able to tell me if my daughter is having tics, chorea, or whatever movement disorder. They just can't evaluate her...but, I see the anxiety and getting stuck as more debilitating than the movements. She's pretty solidly in disability land, where you're allowed to jump up and do a jiggy dance for no particular reason, but if your anxiety and fears drive you to aggression you're still in real trouble.

Here's what happened with me. When we saw the immuno back in November, he would not dx her with immune deficiency- she has very low total IgG, IgG4 is deficient, low IgA and the pneumococcal titers (she was vaxed twice 2 1/2 years ago) were again low. But, he said if Dr. L recommended IVIG he would do that for us. So we saw Dr.L at the beginning of January. She recommended IVIG and I asked her to please recommend dosage as well. She recommended 1g/kg. So I brought her report to the immuno. He said no problem (we didn't discuss dosage at this time) we have a few PANDAS kids that we are treating already with IVIG. We can get approval for IVIG for PANDAS. So, a few weeks later, I talk with the IVIG nurse about getting it set up- and he says 400mg is what they usually give to treat immune deficiency and that its easier to get insurance to cover for HER IMMUNE DEFICIENCY! He (the nurse) asked the immuno about the higher, recommended dosage and was told that he's going with the standard dosage and we can always increase that if we need to. Honestly it has been such an ordeal to finally get to the point where we're even getting IVIG...now to have to fight the dosage-I'm a bit deflated. Is there research indicating the higher dosage is more appropriate? I'm not doubting that it is, just need the official word to support the case.

I've not been told that, but we don't use penicillan because it didn't work to clear up the strep and she has actually tested positive for strep while on it.

Well, I'm worried, because Allie's immunologist will be using 400mg (less than .5g/kg) for IVIG every 3 weeks. He says we can always increase later if we have to. He's going by the guidelines for immunodeficiency (whose guidelines I don't know). Dr.L's report recommended 1g/kg. The IVIG nurse is trying to figure out how we're going to complete the IVIG and if we'll need anesthesia or not. I guess we'll just see how it goes. On the + side- Allie has been doing ALOT better since her zith dose was upped at the end of December. Well, until yesterday when we had a surprise visit from 4 little kids...w/in hours of them leaving she started getting upset, screaming like she's in pain and just not feeling good. She's having clammy sweats and smashing her head on the wall when she gets fixated on things.

I think you'd need to see a neurologist or neurosurgeon to get one ordered. Its not routine and can be hard to get. My personal opinion is that it should be done when there is a drastic change in behavior to make sure there aren't any structural causes.

How long have you been using it and what results do you see? I don't have any experience with it, but have wondered from time to timeif it would be helpful.

I got that message, too. Then I went back to the original post in the Medical records thread and tried that and it worked. Try this: http://www.ispub.com/journal/the_internet_...atic_fever.html

Well, I object to the notion that strep carriage w/o symptoms is benign- it hasn't been the case for us.

My daughter saw the worst PANDAS episode she's ever had following her T & A, and she's had lots of episodes over the years. We thought it would get rid of her chronic strep so we only did one course of amoxicillan afterward.

IV completed in 3 hours .Danny is doing fine so far we did ggive him 20 mg of prednisone and will do that tomorrow.He had a headache last time so were just playing it safe.Ill let you guys know how this progresses. melanie ?????? I'm confused. Won't the prednisone suppress the effects of the IVIG? Prayers that you see fast and continued improvement.

yes, but when she is in PANDAS mode (has been mostly in that mode for several years) she still cannot communicate very well. We can work on that more now that she's getting better. She has a Vantage, no overlays, easily programmed...but she will break it when she's in exacerbation (smashes it with her head)- then we are w/o for @ 2 months til it gets fixed. We used to get loaners while it was being repaired- but she broke that, too, the last time. So now we use simple comm boards (yes limiting, but durable and cheap) when its being repaired.

My daughter was on a lower "prophylactic" dose of zith for over a year- so I didn't think the behavior problems were still due to strep...but she tested positive for strep last september....We got very aggressive with abx...and finally, this last 6 weeks, things have gotten soooo much better. Wish I'd done this 2 years ago! First of all, I'm wondering why the zith dosage is split into 2x/day? The way zith works- its taken up into the tissues and has a long half life- I see no advantage to giving it twice/day instead of all at once. I also think you'd see better results if you gave him a "loading dose" (usually double the daily dose for the 1st day) and then maintained the tissue concentrations with the regular daily dose. I don't know what the therapeutic dose vs. the prophylactic dose is for your child's weight, but I'd stay therapeutic until he improves and stabilizes, then try going down to a prophylactic dosage. Just my $ 0.02.

yes, but when she is in PANDAS mode (has been mostly in that mode for several years) she still cannot communicate very well. We can work on that more now that she's getting better.

I just can't get past WHY this works. Why doesn't it work to just tell her, instead of writing it? Does the verbal message get lost in processing, where the visual does not? There must be some broader implication, that we can use to help her. We've tried putting tasks on a board and go through the get-ready-for-school checklist. Those have not worked well. If its just a matter of having it in writing, that should have worked...maybe its the not talking? Giving only visual to be processed?

All school year we've been having problems getting my daughter to go to the bus when it arrives in the morning (she gets picked up right in front of the house). She would usually walk around the house like she was looking for something (checking compulsion?), or insisting we draw things or...oh, just so many things. We've tried forcing her out (she throws herself on the ground), waiting till she's ready (can be as much as 1/2 hour-bus won't wait), luring her out...nothing has helped. So Monday, we met with the RDI consultant. She suggested just writing "bus time" on a piece of paper and silently handing it to her. I thought that was a dumb idea...but since I had nothing better, tried it on Tuesday morning...she read the note, got up, and walked right out to the bus!! Well, that had to be a fluke, right? Same thing happened on Wednesday morning, and once again this morning. I see no reason why this works! Its wonderful!

My daughter takes pills if I chase them with 2 syringes of water.

I just wanted to say that I think any physician who is current on PANDAS research will know at least what this test is. Maybe that could be a litmus test for if doctors know enough to be worth your time and money- just ask if they are familiar with the Cunningham test.

I googled her. Did they tell you she is a pediatric psychiatrist? I could be very wrong, but I think psychiatrists, whether they "get" PANDAS or not, are limited in their treatment options. But, if she knows enough about PANDAS and can work cooperatively w/ another physicians, it could work out anyway.

I'm so sorry to hear this. Sorry I understand exactly how you feel. Sorry so many of our kids and us are going through this. But, what I think (and clearly you've not given up or you wouldn't bother asking questions here) is you'll keep screaming and eventually someone will help you...Dr. L is the only Pandas expert we've seen..and that was 2500 miles one-way for us. I've got a 15 yo girl, w/ heaps of neuro problems, non verbal...nobody can really even evaluate her OCD...but history of behavioral exacerbations linked to chronically positive strep tests (not even sure we can call them infections anymore as nobody tested for strep when she was symptomatic @ age 2-5 yo). Anyway, we're currently arranging for IVIG w/ local immunologist (based on Dr.L's recommend). But, since the pediatrician has been getting more aggressive w/ antibiotics...my daughter is doing much, much better. I have no idea what "healed" would look like, but know improvement when I see it. My priority goal is to stop the aggressive, fight or flight, ragey meltdowns...those have been vastly improved the last 6 weeks, just with the increased antibiotics. This is more than any psych med has ever done for her (and we've tried a ton of those, believe me). I've no illusions that my daughter will ever be "normal", she's just lost too much to this, but she will be better, more functional than she is now. So, keep going...you will get help for your daughter- try not to let these "bombs" get you too down. The other thing is, though, with your daughter being 17, you, as a parent have limited time to be in charge of this, unless your daughter allows you to be when she turns 18, so its critical to get that relationship going with the doctor who really can and will help. (at 15 yo, I feel the clock ticking for my child, too, although, I'll probably be her legal guardian for as long as my own health/life lasts).

My daughter seldom gets fevers (not a strong immune response to anything), but when she does, its like a vacation for me- she's calm and rests.

Good questions! I think my daughter can feel it beginning, but can't do anything about it, can't tell us it is coming. My observation-a "look" comes over her-the eyes change and her mouth opens-like a scream that can't get out. She will run to us for help, but strikes out at us, in fright. There is a "questions for Dr.T" section on his new forum, maybe the chemicals question should go there?