lynn

At Ds' last appt, he was given Omnicef and told that he could take the 2 300mg pills once a day. We then went on vacation. He had a pretty hard time and even got a sore throat at one point. I decided that once a day might not be protective, and started to separate the dose and give one pill two times a day (this is an option in the pill handout.) He has improved (a little bit.) So my question is, does Omnicef have a long enough half life for the double dose once a day to be effective, or should I go on with the substantially less convenient twice a day? Thanks to everyone for your help. Dr. B has told us we should go ahead and do IVIG since it is likely our insurance will cover it. I would still like to see at least some positive response to some PANDAs thing before we go to that point. Lynn

http://www.ncbi.nlm.nih.gov/pubmed/20006327?dopt=Abstract Biol Psychiatry. 2010 Apr 1;67(7):679-83. Epub 2009 Dec 14. Children with Tourette's syndrome may suffer immunoglobulin A dysgammaglobulinemia: preliminary report. Kawikova I, Grady BP, Tobiasova Z, Zhang Y, Vojdani A, Katsovich L, Richmand BJ, Park TW, Bothwell AL, Leckman JF. Department of Immunobiology, Yale University School of Medicine, New Haven, Connecticut 06520, USA. ivana.kawikova@yale.edu Abstract BACKGROUND: Postinfectious autoimmunity has been implicated in Tourette's syndrome and obsessive-compulsive disorder (TS/OCD), whereas increased frequency of upper respiratory tract infections (URTI) in TS/OCD patients suggests immune deficiency. We hypothesized that antineuronal antibodies may be elevated in patients (reflecting autoimmune processes), and levels of total immunoglobulins (Igs) may be decreased (reflecting immune deficiency). METHODS: We analyzed plasma of TS/OCD patients (n = 24) and healthy age- and sex-matched control subjects (n = 22) by enzyme-linked immunosorbent assay (ELISA) for the levels of total and specific IgG, IgM, and IgA against antigens previously identified in multiple sclerosis (myelin basic protein and myelin-associated glycoprotein) and Sydenham's chorea (ganglioside-GM1, lysoganglioside, and tubulin). RESULTS: Total IgA was decreased in TS/OCD patients (median 115 mg/100 mL) compared with control subjects (141 mg/100 mL; p = .02). Specific IgA against all antigens, except tubulin were also decreased in the patients (MPB 0 vs. 13 [ELISA units [EU]; myelin-associated glycoprotein 29 vs. 44 EU, p = .04; ganglioside GM1 21 vs. 35 EU, p = .01; lysoganglioside 44 vs. 56 EU, p = .03; tubulin 44 vs. 44 EU, p = .8). The levels of total IgA and anti-myelin basic protein (MBP) IgA were significantly lower in the subgroup of pediatric autoimmune neuropsychiatric disorder associated with Streptococcus (PANDAS) cases (n = 10) than in non-PANDAS cases (n = 9; total IgA 98 mg/100 mL vs. 133 mg/mL, p = .03; anti-MBP IgA 1 vs. 6 EU, p = .03) or healthy control subjects (total IgA 141 mg/100 mL, p = .02; anti-MBP IgA 13 EU, p = .005). CONCLUSIONS: At least some TS/OCD patients may suffer IgA dysgammaglobulinemia, possibly rendering the children more prone to URTI. Copyright 2010 Society of Biological Psychiatry. Published by Elsevier Inc. All rights reserved.

Just wanted to update. Dr. B said sinus infection is gone--no more green stuff in his nose, DNASE has fallen to high normal, ASO still normal. Western blot negative, mycop negative, IgG, all titrated IgA all normal. Immune complexes double the normal range, which apparently indicates that there is immune activity, but still deficient ( >.3 for 13 out of 14) in s. pneumonaie. And there's the positive result for the Cunningham test Dr. B suggested that we move directly to IVIG, but we are still worried, both about the theoretical risks (DH) and about the potential that it will make things much worse without the Cinderella fix at the end (me) Everything I have tried for DS has had the bad part but skipped the oh boy part, and the fact that he has not had a positive response to steroids or two whole months of two different abx worries me. I asked, "Is it possible that he does not have PANDAS at all?" and Dr. B said, it is certainly possible. However, his take is that IVIG would do no harm, and if it isn't PANDAS, it just wouldn't work. I still need to think about this...for now, we are trying another abx (2 300 mg caps one time per day of Omnicef) Wondering, if we do decide to do it, when in DS's typically overscheduled summer we could get it in?

I'm so happy for you Mary! It is so wonderful to get a glimpse of the real child! With regard to how you could tell about magnesium, I found that out by going to www.iherb.com, which I think Chemar first identified as an excellent reference. If you look up the different supps you give, there is a section on many of them that tells if they interact with or interfere with antibioticsl. You have to scroll down to the bottom to the peach colored box, then, under Natural Library, select herbs and supplements.

Thanks Kim and Isabel. You are right, I should sign myself "impatientmom" It is really hard to wait for things to work or not work! I am seeing Dr. B, who ordered all my various tests. We got a second blood draw after DS had been on Augmentin for a month and we will get the results today--they will include the Western Blot test (the lab unaccountably didn't run it before) and the C3 complex as well as a rerun of the titers. Mycoplasma was previously negative. Dr. B also thought there might be a sinus infection, but wouldn't 2 months of antibiotics have at least calmed it down? Or do I sound like one of the anti-PANDAs Drs? He is still making a sniffing/snorting noise, which I always thought was a tic. Anyone know a good ENT in NYC? I really appreciate everyone who posts on this board. You are the only people that I don't have to explain things to!

DS has a Dr. appt tomorrow, and I need to clarify what I want, so I turn to all of you wonderful people! We tried a 17 day steroid burst, a month of Augmentin (850 mg x2), and a month of Azithromycin (500 mg x1) The result: A child with a reduced attention span, more OCD, and no improvement in rage and anxiety problems. I would conclude that maybe he doesn't have PANDAs, but he has a 150 on the Cunningham test with very high normal neuronal antibodies. High DNASE, normal ASO titers. And, although almost all of the other indicators are normal, he is deficient in 13 out of 14 s.pneumoniae titers (that might have been spelled a bit off.) So the possibilities, as I see them, are: 1. Try another abx 2. Go and see an ENT and see if there really is a sinus infection (Kimballot made me think!) 3. Get a stool test and see if the gut is the problem and yeast or bacteria is masking progress that is being made 4. Go directly to IVIG The problem is, I have no particular reason to believe that IVIG will work for my particular child. ABX and prednisone didn't help. Advill helps just a bit and not for long. Also,l if DS still has an ongoing infection, I want to hold off on IVIG until it is under control Any reflections or advice greatly appreciated!!!

I think you should add the whole question of probiotics and how gut problems factor in and could actually mask progress with their own symptoms. This could be a key factor in why abx seem to work for a week or two and then there is backsliding.

This raises an interesting question--are the joint pains that DS frequently complains about caused by rheumatoid arthritis type reactions?

When my son almost passed out and started throwing up during the blood draw, the tech told me that next time I should make sure he is more hydrated. So the next time I made the poor kid drink water all morning and he had no problem. However, according to DS the improvement was mainly because he had figured out that blood draws are no big deal by then.

DS has that sandpaper rash also (skin colored, not itchy, not painful). He has had it for years and Drs. all said variations of "put some body lotion on it". Someone once suggested fish oil for it and I tried it--the rash got a little better but the tics increased hugely so I stopped. Flax oil was also not tolerated. Since then, he's just been living with it. How do I find out if it is strep related? Is there a skin scraping test of some sort?

I beleive the prevnar started to be used in the mid 2000's in our area. My kids (born 1995 and 1997) did not have prevnar. Yes, DS was born in 1995, so likely (don't have records with me but will check) he would not have had the vaccine. Does that make the fact that he has no antibodies to any of the S. pneu. (13 out of 14 were considered unprotective) irrelevant, or would he likely have been exposed through modern life anyway?

My DS also has deficiencies of 13 out of 14 of the S. pneumoniae titers. He has normal ASO but elevated anti DNASE. I understand that this will help with insurance for IVIG, but I am curious as to whether there is an actual meaning to this. As far as I know, DS hasn't gotten Prevnar (unless it is one of the standard immunizations?) Does that mean that the titers are irrelevant?

I'm so happy to hear this! Good luck!

Candida Clear by NOW foods has Oil of Oregano as one of its components. I mention this because I would rather take it in a capsule than drink it any day of the week!

Thanks everyone. Of course, he then had a horrible time at the party and came home loaded for bear and got into a fight with DH, who was also not in the best of moods... and this morning I had to repeat something three times because I didn't say it right. We take the good times and wait through the not so great ones. Yes, I am keeping a chart, and thank you because I need to note both the great afternoon and the discouraging evening! I agree that the cause of this problem is a weird and totally individual combination of genes, environment, and plain old bad luck. That's likely why things that work great for most TS and even PANDAS kids just don't work at all for DS, and also vice versa.

Sounds like a small thing, but I was taking DS to the school dance today and while we were waiting for the "right" time for dropping him off, I told him, "Now one thing I want you to remember about parties is..." meaning of course, my personal mantra--no one here is thinking about you, they are all thinking about themselves and how they look, just like you are. But instead, he interrupted, perfectly deadpan, with "is not to eat until I actually explode." We had a giggle about it. But later, when I told this to my husband, I teared up about it. It has been so long since my funny smart little (not so much anymore) guy was in residence. We had a good time playing monopoly last night too. He lost and still made it fun and funny. Of course the question is, what am I seeing here? History is: -initial 17 day tapered steroids -30 days of Augmentin (850 mg x2) -Had some kind of cold/cough in the middle -No positive result--less attention, more rage -Changed to Azith, 500 mg x1. Up to now, still more rage, less attention. Then the last two days, we've gotten happy boy. -Also, added back in some probiotics So is this delayed response to the steroids (we're about 6 weeks out from start), is it the cold resolution, is it the probiotics, or is it the azith? Whatever, I'll take it!

We had a 504 plan iwth minimal accomodations in place because of a Tourettes diagnosis (extra time on standardized tests (only), permission to go to the bathroom whenever needed, no penalty for bad handwriting). Our middle school called us and suggested that we add a scribe for standardized tests since they didn't believe an independent observer would have the patience to figure out DS's handwriting. The thing was, they were afraid his handwriting problems would affect their stats in the NYC school standings.

Interesting about the bathroom thing though. DS was peeing on the seat constantly for a few months. I tried yelling, punishment, and guilt (will I never learn?) Finally I told him that I never wash the toilet seat (this was lying BTW) and when he sat down on the seat, he was sitting in his own urine. So I let his OCD contamination fear battle with his PANDAS forgetfullness? rage? whatever it was, and OCD lost, so the toilet seat is dry. Don't know how this pans out in the final analysis -- was it situation based good parenting or evil manipulation that will come back to haunt me? However, it did enable me to continue living in our house.

Just wanted to add that DS does at times have a burping tic, which is preferable to the other tic that expels gas elsewhere He also has had a number of different stomach clenching tics. He hates these.

I have only 10 proxies, but they will be voted daily and I will look for more

Can you still get c. difficile if you are on Augmentin? Does that make it more likely?

Dr. B asked us to get CD3, one of the immune complexes, tested.

Thanks for the information. (That's what I like about this board--no matter how esoteric, somebody always knows about the problem!) I looked both up and it looks a lot more like eczema. Wonder what's causing that and why it's associated with exacerbations?

DS has had this thing where he gets little bumps on his fingers and knuckles for a while. The bumps are sometimes red and always itchy/painful. I always thought it was associated with yeast, but in any case it is associated with exacerbations for him. Now, on Augmentin, he is getting them again, along with really bad OCD/ADHD. Yesterday I decided to go ahead and give him Candidase and Grapfruit Seed Extract, my last ditch yeast intervention, which, I think, resulted in pretty bad die off because yesterday was an all time bad day. Waiting to see if things improve. I always feel that I am trying to assemble a complicated machine in a dark room with gloves on with this disease. Nothing but guessing!

Lynn - it is good that you are working with Dr. B. I would trust him to get to the root of it. I don't know if you read my post about finding this new mucocele infection in my son http://www.latitudes.org/forums/index.php?showtopic=8291 A doctor today told me that the mucocele has probably been there for at least 2YEARS!! My son did not have fevers, stuffy nose, or any other symptoms, because it was up so high in his ethmoid sinus next to his eye. I realize that the problem my son hs now is rare, but the persistent chronic sinus infection he has had since birth is not so rare. Did Dr. B order C3D? That is another indicator of an autoimmune problem. Brilliant Kim! That is the one the lab couldn't figure out. Will get it this week, and then we'll be able to see.