peglem

The last time the pediatrician saw this rash (like 9 months ago) he did not think it was a lupus rash- I think it looks different from that now. But, I do not want to go see the local pediatric rheumatologist about it because he really just thinks everything needs to be treated by the psychiatrist. But also, not sure any testing for lupus will be acurrate because of monthly IVIG. So, I guess I'll give it some time. Some online discussion groups say that joint/muscle pain is a withdrawal side effect w/ lamictal. I guess if it comes down to it we could go see an adult rheumy since my daughter is 16. Its so hard to get any doctor to take us seriously when my daughter is so hard to examine and has such limited cooperation in her own care.

Took Allie off lamictal @ 2 weeks ago. She improved immediately and for the first week and 1/2 it was like a miracle! After a week and 1/2 school started reporting aggressive events (lots of them) and crying spells. Still great at home until...Friday we had an IVIG, which went very well, especially-she DID NOT get stuck on the elevator, coming or going, but had a 3 or 4 spells of throwing herself on the floor and banging her head in the store on the way home, very much like what the school was reporting. Gave her more ibuprofen and it seemed to help, but the rest of Friday was touch and go. Oh, must mention that we have, while she was on lamictal given 30mg of valium (yep, that's a lot) to get her calm enough to get to IVIG. Well, this time, after giving her the 1st 10mg, she was loopy as all get out, so we stayed at 10. We hadn't needed ANY valium during her time off lamictal- she was that good! Anyway, Saturday started out really rough, but I stayed away from the valium, thinking maybe coming down from it had caused a prob for her. Gave ibuprofen which only helped a little- gave taurine (which we have not been using lately) and that seemed to really help. But, it almost seems like she's having some sort of muscle and/or joint pain that's revving her up- She's doing this "claw hand" thing, where she stares at her clawed hand and cries/whimpers. Having a bit of the old photophobia as well and that dang rash across her nose and cheeks is back, this time its sand-papery. My sense is that most of this is related to coming off the lamictal (has a rep. for affecting other meds, so the valium reaction is a clue for me). So are there supps that will help her kinda detox the lamictal and repair whatever it did to her?

My daughter weighs @ 115 now, but have used melatonin for quite awhile with her- since she was about only 40lbs. If I'm using the plain kind, I start with 1.5mg, and if she's not asleep in an hour, I follow with another 1.5. I've gone as high as 6mg, but find it doesn't work any better at higher doses. Pretty much, if 3mg doesn't do it, it ain't getting done! But I also use the timed release (when I'm not out of it) which basically has 1 tablet w/ 1.5mg immediate release and 1.5mg delayed release. It seems to be more effective for keeping her asleep longer, though I also dose with valerian root for that. With just melatonin, she often wakes up exactly 3 hours after dosing.

Did the doctor say when there would be time to discuss it further? I'm guessing they weren't terribly elevated or it would be more of an emergency. But, the liver is pretty important! Enzymes could be elevated due to medication or infection. Seems to me like it would be important to find the source of the elevation. We routinely check liver function in my daughter and even with all the medications she's had that are cleared via liver- she's never been elevated.

This does sound like PANDAS to me. And maybe your child's physician is one of those who doesn't believe in or know how to treat PANDAS. So you may end up having to find a new doc or going to a professional with more experience. Anyway, here's a basic treatment/dx flowchart that is kind of an amalgamation of a bunch of PANDAS parents' experiences. http://www.latitudes.org/forums/index.php?showtopic=6688 I'd think you'd want to leave the appointment w/ at least a months worth of full dose abx- preferably zithromax or augmentin. You may also find it useful to peruse the "Helpful Threads" thread here: http://www.latitudes.org/forums/index.php?showtopic=3928 Its pinned near the top of the forum.

The one I worked for was based in Chandler, but I actually worked on site at the schools.

Well, I don't know who your local PANDAS doc is, but if you want to check lyme, it seems like dr.B is the one who does that.

Mathnasium is another math tutoring company that is very good at identifying and targeting math "holes." I worked for them for a couple years doing after school tutoring and was very impressed with their systematic approach of evaluating deficiencies and remediating exactly where needed.

AMEN!

My favorite (and I think the best) doctors are those who combine the art of medicine with the science of medicine. Sometimes a doctor may have a very good idea what treatment is likely to help, but the science isn't concrete- either because studies have not been done or because the patient is a curious mix of symptoms. So, sometimes they make a "clinical" dx so they can offer helpful treatment. I've seen my daughter's pediatrician do this- dx a strep infection, in absence of typical strep symptoms, w/o doing a strep test first. I think he's afraid if he does the test it will come out negative and the science will prevent him rx-ing the treatment that he believes will be most effective. And really, psychiatrists do this all the time. There is so much overlap in psych symptoms from one syndrome to the next and patients are not often "classic" anything, so the psychiatrist dx's the thing that will allow them to try the med they think will help.

Needles cause a lot of anxiety for my daughter. We used to have a minimum of 3 nurses + myself and my oldest daughter to get the needle in. There were a few times that they had to use ultrasound to find deeper veins to get my daughter hooked up. She has a surgically implanted port now, but you wouldn't do that unless you need chronic access. So, sorry this is happening- poor little girl! Do you use emla cream to numb the area 1st? I even do that with the port- it really helps! If you are trying again Monday, try hard to uber hydrate on Sunday. And dang it- once that needle is in, they better tape it like crazy to keep it in place! I wonder if it would help to get it done at an infusion center?

I have a long story about this. When my daughter was 12ish, she was sent to an immunologist because we (her pediatrician and I) wanted to investigate why she just couldn't shake the strep (only behavioral symptoms). The immuno did the 23 valent pneumococcal vaccine test (after drawing baseline levels). She did not have a 2 fold titer rise in any of the 23 strains. So, he ran them again after another vaccine...and this time she did have a rise of titers. His nurse called me back with the results and said that this had "jump started" her immune system and she should have a lot less trouble with strep now. I think this test is an indication of how well the immune system responds to bacterial challenge. Anyway, when she did have more (the same) troubles with strep after that, she was pronounced a "carrier", the implication being that she wasn't actually having problems from strep. Thank God the pediatrician still thought there was a problem, because I was ready to give up after that. About 2&1/2 years after that, we ran a Cunningham test, which gave my pediatrician the impetus to try again with the immunologist. True, they don't really know the significance of the test, but after he talked with Dr.s Cunningham and Latimer, he was convinced that it was at least evidence that something was awry and we should try to figure out more. So back we trotted to the immunologist....w/ labs indicating low total IgG, very low IgG4, extremely low IgA....and the immuno still said it wasn't a true deficiency. He ran the pneumo titers again and they were low again (after the 2 vaccines 2&1/2 years previous). He wanted to try the vaccine test again, (sigh) but I refused. We were seeing the rheumatologist at the same time and trying to get them working together. The rheumy said he was not qualified to dx or treat so referred us to Dr.L. The pediatrician kept working on the immuno (I think they are buds) and finally he agreed that if Dr.L recommended he would do IVIG. So off we flew from Phoenix to Maryland (one of the toughest trips of my life). Dr.L looked at her labs and her Cunningham test and said, "Why aren't they treating her immune deficiency?" Her report basically said, "The humane thing to do (she actually used that word, like scolding them for ignoring Allie's medical problem) is to treat this child's medical problems just like you would any other child's." So, we've got IVIG every 3-4 weeks, I think based on immune deficiency, but I'm not sure if that's the basis, because we are getting the autoimmune dose. Anyway, its been decided that as long as its helping and insurance cooperates, we'll continue. And this immunologist is the only specialist out their who is currently working with the pediatrician as far as treatment planning. (The rheumatologist has completely washed his hands of us and if anyone confers with him he says you can't base medical treatment on behavioral symptoms. What a JERK!) So, I guess the answer to your question, is sort of, with a lot of arm twisting!

I think the same reason they don't test for strep in symptomless individuals- it is assumed the absence of symptoms means the absence of infection. Seems like a reasonable assumption if you're not looking at it through PANDAS colored glasses.

We got reimbursed for Dr.Latimer's visit at in network rate- so we were only left with the $35.00 copay. But, we had a referral from our local rheumy who said he did not have the expertise to treat, so we got a pre-auth before the appointment. However, traveling from Arizona to see her cost us well over $5000. It does seem a shame to pay premiums for insurance (not a small sum at all) only to have to pay out of pocket if you want effective treatment.

I would think if she finished the 10 day course it would be safe. Docs usually say someone is no longer contagious after 48 hours on abx. Not sure if I'd trust that soon, but....

That does sound like staph, but if he gets them from time to time, I'd wonder if he's ever actually gotten rid of that original infection...maybe get some immune testing done. A lot of what you describe about your son could be symptoms of PANDAS or neurological that could be related to some kind of infectious agent. Glad you're on the trail- hope this doc helps you get it all figured out!

Low ASO titers are meaningless. The test can confirm a recent strep infection (rising or elevated titers) but cannot rule strep out. So, in your case, all it really tells you is that your child is not making a lot of antibody to this particular strep exo-toxin.

The neg. ASO and AntiDnase tell you nothing. These do not rule out strep as a culprit. Many, many of our PANDAS kids have neg. titers, even with numerous positive strep cultures. If these are elevated or rising over time they are meaningful, but neg. titers do not rule out strep.

OMG! The school's "treatment", I think, has the potential to do a lot of damage. Why in the world would anybody address tics this way? I don't know if you can actually demand medical testing/treatment of a staff member, but if they understand your child's medical condition, they might do it voluntarily out of concern for your child.

Oh, yeah! She fell asleep on the couch last night and slept through the night! And I was able to put a few light blankets on her!

I wanted to point out that Lynn's son was untreated because they didn't know about PANDAS until he was already out of the house and refusing help. Your child is still so young, and with treatment there is every indication that she can heal and recover. You will get through this, really. Don't be too hard on yourself- we all lose it from time to time.

Will he start taking it Saturday, or wait til after vacation? Would it work to tell him that you need to see if he has side effects before you go on vacation, because during vacation it will be harder to get it changed if there are problems? Sometimes presenting things as the safest thing to do helps- well, at least it does w/ my kid whose obsessions seem to revolve mostly around safety.

This looks like a good explanation of the various strep tests: http://www.enotes.com/nursing-encyclopedia/streptococcal-antibody-tests

I'm thinking sweats. But she did let me wrap her in a blanket after her bath this morning...so lets hope tonight is not a problem.

Yes! She's only had 2 very minor incidences since quitting the lamictal 9 days ago. In a totally unrelated event, sometime during the night somebody defaced our sidewalk with a 4 foot penis in white paint-circumcised and everything. I'm so punchy from lack of sleep, I just can't stop laughing.