peglem

Augmentin gives my child diarrhea that we just can't get rid of until we are done with it, then it resolves rather quickly. We were on both zith and augmentin for a couple weeks in December- after coming off 10 days of rifampin/augmentin. I was very glad to get back to the only zith...and get rid of the tummy issues.

I'm so sorry! This is exactly, exactly my reaction the last time my daughter had a positive strep test.

I used oral LDN starting last summer. I think I saw some initial improvements. Then, when the strep struck, it just seemed too much of a wild card. Nobody could really say for sure (her psychiatrist prescribed it at my request) what effect it was having, whether it was helping or hurting. I may try again, down the road, after my daughter has been stable for a period of time. I believe it was interfering w/ sound sleep. The thing I wondered about most is if it boosts the immune system, is it also boosting production of auto-antibodies? Nobody could tell me one way or the other.

Do abx affect allergies?

Nothing. She is IgE deficient.

We've never done plasmapheresis, but I thought it was typically only done once for PANDAS. Treatment dose zithromax (500mg/day for 5 days, then 500mg every other day) has done more for my daughter's aggression then any psych med has ever done. But, we do still give her valium a few times a week, when she begins to lose control. It does help, but did not work as well pre-full dose zith.

Since we've increased my daughter's zith (December) she's had a sunburn like rash across her cheeks as well. Her doctor says abx sometimes make you ultra sensitive to the sun. Sunblock does seem to be helping. Her eyes also seem more light sensitive. I'm still not sure its the abx though. Her very worst time with photophobia was when she was not on abx, after her tonsillectomy.

I had a problem w/ the insurance company and my zith prescription-it was declined because they "will only cover 6 tablets every 21 days." I told them that I think it should be up to her doctor how much she needs. She has a coordinator from the state who straightened it out for me. ( I also had a problem getting her Lamictal filled for the prescribed amount) I think they are trying to avoid physicians who prescribe 3 months worth of medication in 1 month to save the patient a couple of copays.

Its true. Response to the steroid burst indicates autoimmunity because it reduces antibody production, including auto-antibodies. My daughter did a 5 day burst and began getting ill on day 4...it was the first time in years she got real symptoms of illness- a fever and everything!

So does the redness appear before hand washing starts? I wonder if the hand washing compulsion is triggered by a feeling in the hands. I wonder if my daughter's hand biting might be triggered by the same thing. The backs of her hands are badly mottled from years of biting, so I can't tell anymore.

My daughter, before prophylaxis, would test positive for strep as soon as 3 days post abx. She only had behavioral symptoms. I'd get her swabbed as soon as I saw behaviors surface.

There is study information?

My daughter had her 1st infusion today at just over .4g/kg. She is supposed to get this every 3 weeks. I'll keep you posted as to how well it works for us. We don't really have a baseline, so I won't be able to tell % improved- only if there is improvement or not. Has anybody tried low dose for PANDAS? Does it make a difference if there is immune deficiency or not? I'm confused- the immuno said it was coded/billed under immune deficiency, but she was admitted to the outpatient facility under a PANDAS dx. If I don't see improvement, I'll go back to bat with the immuno.

I don't know if she's seeing patients outside of research studies or not. She's currently heading up NIMH's autism studies; http://intramural.nimh.nih.gov/pdn/studies.htm

He hasn't had a strep infection that you know of! Many PANDAS kids get strep infections with no symptoms other than behavioral changes (sensory issues, anxiety, tantrums, ocd, adhd, urinary frequency, handwriting deterioration) and/or tics...in other words, no sore throat, no fever. But, if you do a throat culture, it will be positive. Also, strep can linger in non throat locations...skin, sinuses, gut...in these cases the throat culture can be negative. Does your son have just tics...or other symptoms as well?? If your son has tics has is only symptom, I would tend to be somewhat less suspicious of PANDAS. Not trying to argue with people who've done so much and know much more than alot of doctors out there...but i don't want to be left out of the life boat. My ds is currently dx with Ts of the 2-3 times a year he would get strep, he would tic, that's it...yah oppositional but in our case i really don't want to over react and i think for my son it was do to the fact he was cranky and sick. His tics would go away with abx in 4 weekish. Last 2 years no recorded strep but with abx complete remission from tics. This last onset 4/6/09....my theory is, he has horrible allergis..pollen count that day 3000ish....presented at docs the day before(and every visit)presented with swollen glands etc... I was able to get abx but was wrong one, and not a strong enough dose. Also son has Mycoplasma P. that i would never have thought to look for. It has now been a year, and i am concerned that the MULTIPLE strep infections reallyd did some voodoo on his t'cells. We have very recently started on a new regime...and things are mildly better, of course we are being slammed with dental work about 2 weeks in and the pollen count here is Very High....DS is completely clogged up...can't catch a break!! And let's not forget Lauren...the sneezing girl....i just think tics are harder, hardest to reset, hence harder to figure out trigger as recovery will not be as immediate as ocd perhaps and peolple aren't waiting long enough to see if and what works!!! JMHO PS and as doc t's chart...as kids get older they move into a pandax catagory(his system) where the course of multuple infectins let any "irritant" create the same type of exasperaton(if i worded that right) Yes! good point. Once the "wheels of PANDAS" are set in motion, non-strep illnesses (viral, other bacteria/mycoplasma, allergies) can trigger exacerbations. This further complicates diagnosis. Our dd is currently (since feb) in an exacerbation (has been on Azith. long-term, also had IVIG) from (we think) a virus (1 day Fever plus cough). We are upping the Azith to 500mg/day (just in case, also gives us more immune modulation) and will repeat a course of steroids in 7-10 days. If that doesn't really settle things down we will repeat IVIG. She doesn't have full-blown anorexia, but is restricting eating, has food questions, irritable...mood (so far) is improving on the higher Azith. dose. In the past dd has reacted to H1N1 and fifth's dz with an increase in PANDAS symptoms. And some "symptoms" (eg. tics) are harder to eliminate than others (mood improvement seems to be an early sign of improvement). I'm so sorry you guys are having PANDAS symptoms again....you've already been through so much!

So, you clear her, and then she resumes carriage at a later time?

What kind of bacterial infections does he get while on abx? I'm not an expert about IVIG, but generally, what I hear from other parents is that a once or twice IVIG infusion at higher dosage is what is most likely to work for PANDAS. Usually lower dose monthly, or every 3 week infusions are treatment for immune deficiency- but it sounds like immune deficiency is not what your child is dealing with? Insurance will cover IVIG for some conditions. It seems to depend on the insurance policy and how the practitioner codes it.

Well, I think you should wait until you are not angry anymore before you decide what action to take. For what its worth, I wouldn't report it. Teachers are human, they make mistakes. I would maybe tell her that I was not comfortable with what she did and would appreciate it if she would come to me ask about any rumors she hears from other parents, and please not discuss me or my child with other people. But, I wouldn't try to cause trouble for her professionally unless she got all snotty about it when I tried to talk to her about it. If you're going to get a rep as a PITA parent, at least let it be for fighting to get your son what he needs educationally. The more you are seen as reasonable and cool headed, the better your child's chances of getting help are.

When my child was like that, the melatonin did not work very well for her- but we couldn't get her to just lay there (screaming or otherwise) anyway. But, I think if you give the melatonin before the yelling and screaming begin and then stay with him, he's likely to fall asleep w/in the hour. My daughter will fall asleep exactly 1/2 hour after melatonin and when in sleep disturbing exacerbations, will awaken exactly 4 hours after getting melatonin. She's not in exacerbation right now, and does stay asleep all night usually now. We also give valerian root @ an hour before bedtime and that really has helped her to relax. It is worth a try!!

That is possibly an early onset, but at that age, its just dang hard to tell what is normal fascination with something newly discovered, and what is obsessive or compulsive behaviors. Babies have not learned much about controlling impulses and they tend to investigate new sensations/realizations/experiences by doing them over and over again.

Also from the NIMH site: Bolding mine Yes, the site is outdated...I had to go back and check because I couldn't remember...But so many doctors who don't know much about PANDAS do reference this site for information. Here we see that episodic was intended to include both those with sudden onset and those with sudden flaring of symptoms. I'm just saying that this does not seem as narrowly defined as I remembered it to be. Except for age of onset, (although we didn't notice the sudden worsening of symptoms until she was in that age range) it does seem to fit my daughter just fine. But, the NIMH treatment recommendations are way, way off the mark!

My PANDAS daughter is the only one of my four children who did not do daycare, ever. And lots and lots of daycare kids (including my older 3) never get these kinds of health problems. Its not like you sent them into a leper colony!

The teacher's behavior was unethical-discussing your child and private email with anybody other than you or her appropriate associates is a no-no. If another parent approached her to discuss it, she should have declined, letting them know that she cannot discuss another child with them. You, on the other hand, are free to discuss your child and the teacher with whomever you'd like. So, your feelings are justified. The teacher must have felt threatened or something. (or maybe she's just a nosey busy body!) Anyway, hope this won't have negative repercussions for your child, although, it may have strained your relationship with the teacher.

I just checked the NIMH diagnostic criteria. It does not say "sudden onset." http://intramural.nimh.nih.gov/pdn/web.htm

For us, the symptoms were always there, with an unmistakable explosion linked to +strep tests. I believe the onset was in infancy, but its easy to say at that age that "Of course, they are cranky/irritable when they are ill." And when they improve on abx, its just that they are feeling better now.