T_Anna

There is a discussion on Facebook about whether IVIG works for PANDAS patients who have had onset longer than 6 months. Someone mentioned that SCIG might be better and I was curious if anyone has done this. T.Anna

OK, here are our results, we didn't get it in color. I heard that over 200 is indicative of Syndham Chorea. Hmmm, tried to attach the picture and that didnt work. Here is a dropbox link: https://www.dropbox.com/sh/ky89ee71fl19g38/cCUTBXhaGx

Usually the last line has an arrow tgat shows were the patient falls when all 5 things are calculated. DS was in normal antibody range but had over 200 in CamKinase which resulted in PANDAS highly likely. T.Anna

<<there are so many great stories about children gettng better only from abx>> I heard one Radio Pandas show where the host said that everyone is different and if one antibiotic doesnt work try another and another until you find something that works. I agree with what people here have said, Ominicef, Keflex and many other abx can work where other things have not. Good luck, T.Anna

This board is about learning and supporting. In July, I posted a negative experience about a specific doctor in NY and I learned from the experience. My comments had hurt a member and I had made generalities about about the doctor, staff and hospital. It was wrong. My experience was fact, but not my inferred "warning" to others. The forum was supportive, in the end everyone will have to make their own way. I have received many PM's with treatment and doctor suggestions, that is the best way to get honest and relevant information IMO. My issue with paying for calls: If I call a lawyer, I pay by the minute. If I hire a mechanic to work on my car, I pay by the hour (+ parts). If I make a call/appointment to talk to a doctor it's the same. T.Anna DS15 - who didn't tic last night (2nd pill of minocycline), too early, but I figured some good news is good too.

Great news!! T.Anna

NAC caused huge issues for DS who is CBS+/-

Dr. T has helped us a lot. There have been some communication issues, but he really knows his stuff. Just felt I needed to put in something positive. T.Anna

PowPow, so great that she is in school!! T.Anna Hoping for that for DS15

Has anyone found anyone who tried this for PANDAS? Any studies? Stories? T.Anna DS15

I hope that we can get better without proper diet since DS eats so few foods : ( T.Anna

Thinking of trying Minocycline on DS15. It is the only antibiotic that we haven't tried. When we went to Dr.N he had mentioned Minocycline and I know that it is supposed to be one that passes the BBB. The thread about Augmentin has gotten me a bit freaked that maybe ill possibly make things worse. Thoughts? DS's cognitive function seems to be improving and he helped his brother last night with Algebra homework, but anything we "think" we see is at glacier speed. We are 3 weeks post IVIG and 5.5 weeks post PEX. Thanks in advance, T.Anna

10/26/12 ...DS15 received a flu shot. The doctor commented about what great shape he was is in and how muscular his arms were. His brother received a shot and his sister the mist. That was the beginning of our flare. We slid from wrestling meets and high math and biology to a boy who has no muscles and hasn't left the house voluntarily since January 24, 2013. The short answer from my personal experience...no flue shot! Also be aware that some kids react from vaccine shedding if classmates get th live vaccines. Honestly, another pediatrician also told me, you shouldnt vaccinate the immune compromised. The flu is not measles, polio or mumps. T.Anna

Sklice - is the prescription medication. My pediatrician wouldn't give us a script because she felt we are so "good" at eradicating it the old school way : P In truth DD's daughter was prob. already clean by the time I asked. http://www.sklice.com/

This is a funny thread. We face the craziest lives already, lice cannot scare us!! T.Anna

I do keep a daily journal, but never got around to making it numerical/chart like. I will try to do put it together so that it's more of a spreadsheet. The truth is that overall there have been glimmers, but he is stuck in the bathroom again (his weekly ritual) and it just becomes so depressing. Hoping that we get some answers soon or something try. T.Anna

OK, I have been down this road a few times, at least with three with DD10 who has long thick hair and is a big fan of slumber parties (where lice like to party too). First there are a number of good options for preventing and some good ways to treat. Buy a bottle (amazon) of Fairy Tales Rosemary Repel Leave-In Conditioning Spray 8oz. A friend's daughter uses Coconut conditioner and shampoo and that seems to work too. But I know the fairy tale stuff is good (smells odd and I think they have lavender too now). Spray it in your daughter's hair everyday. Treating: I generally do the "pantene" method (described below), but this last time I also used this spray and I was amazed that it worked (non-toxic smells like licorice). Licefreee Spray, Instant Head Lice Treatment Spray Bottle With Metal Comb, 6-Ounce - extra bonus is that it was sold at Walgreens! Pantene Method: What you will need: Pantene (or thick conditioner), Comb, Clear bowl with water and a little vinegar, seran wrap Saturate DRY hair with pantene or thick conditioner. Wrap hair in seran wrap. Let them sit like this for an hour Using a wide comb and then a fine NIT Comb - like "Nit Free Terminator Lice Comb, Professional Stainless Steel Louse and Nit Comb" Comb through all the hair, wiping periodically on a paper towel and rinsing in your water bowl (this helps you see if anything was in there) Once it is all combed through wash and dry hair with hair dryer (they don't like the air) Flat Ironing hair is an additional step that helps make sure bugs/eggs are removed. The lice cycle is 7-10 days so you will need to check periodically to make sure nothing hatched between treatments (I usually do every other day until her head is clean and then I keep checking. Bedding, etc: The lice cannot live more than 24-48 hours off a head, but tossing everything in a dryer (no bleach necessary) will do the trick (bag anything that cannot be washed or dried for 1-2 weeks). The most important is to be vigilant and keep re-checking. If another parent doesn't re-check then it will just go around and around. But the spray and making sure your child is clean is most important. I've seen girls share a bed at a sleepover and the one with spray repellent was still clean. PM if you need more of a walk through. My best friend is a fan of the olive oil plan, but that involves sleeping in a cap that my DD doesn't like. She does LOVE the flat iron part of the procedure ; ) To those with access to a prescription pad through a friend, there is a prescription creme that works in 10 minutes. T.Anna

We have a phone consult tomorrow. It's 5 weeks post PEX and 2.2 weeks post HD IVIG #3. I know that it is too early to give up on the above therapies. DS has made baby steps, and at the same time huge regressions, in the past week. He has shown that he has amazing ability to share in his brother's happy moments and been a complete jerk ruling the household and his siblings. He has survived the beginning of the high holidays when his life line of two close friends were away, we do not use electronics...instead he read comics, the newspaper and humorous books. We are exhausted. Tomorrow is the first day of school and he is still very stuck (dirty, homebound, etc). It is so hard not to constantly check his progress or get depressed that there may be zero progress. A few questions: 1. Should we try a new abx while we wait? We have never tried Minocycline and haven't done Clindomycin/refampin since last winter. 2.immune suppressants - should I start looking into that next, if ivig&pex are only step 1? 3. HD steroids? Any other suggestions? He is extremely therapy resistant. Thanks for reading. T.Anna Ds15

Thanks for sharing. T.Anna

Thanks for the link Jill (Dr.K). Very interesting about the teen onset and how they become home bound definitely what happened to us. T.Anna DS15

Dr. Bakhta on radio pandas suggested Alleve on the "Summer Flares" show. Although my drs think Advil is very safe for long term. T.Anna

Anyone have any information on this doctor came highly recommended as helping a friend's friend's child with PANDAS. Please PM if you have any information/experience. TIA T.Anna

Oops double post

It came up twice. The second time my father was behind me and said I was very diplomatic (see, PANDAS has taught me something). Basically, I said thank you, but I am concentrating on the medical aspects of the illness at the moment. That we are hoping that some of the behaviors will subside and then we Willet them know if we need help. Unfortunately, I work with this family member and it came up again today. So I printed the article and he asked to take home a copy : ) Oy!! Maybe I'm heartless, but I was really able to enjoy the celebration and be with close and supportive family & friends...ok, with one exception. T.Anna