sf_mom

There is no official study or link yet. From what I understand, from Diana Polhman who went to see Madeleine Cunningham and discussed this issue the responses for the CaM Kinase 'arbitrarily' (lack of better word) lowered after a steroid use. What it tends to do is bring the lysoganglioside, anti tubulin, anti dopamine 1 and anti dopamine 2 into normal ranges and potentially lower the overall CaM Kinase result. They don't know why yet and further research needs to be done. BUT, its the very reason when I post my sons results CaM Kinase results I always state blood draw 11 days post 5 day steroid burst. Anyway, I'd love to see a lot more research about it and unfortunately that won't happen in the near term. AND, I don't claim to vaguely understand the biochemistry either. I just know they are trying to now compile variables about when the CaM Kinase blood draws occur to better understand the responses from different treatments. Because I've only focused my attention on PANDAS and my son's illness.... I really can't say much about TS nor do I have a personal experience. -Wendy do you have a link to support that information? if so it would be contrary to all other info I have found suggesting steroids are dopaminergic (certainly the anabolic steroids are documented as such) and would also not explain why tics appear to be spiking in some with TS when given steroids you may find reading that discussion I linked interesting I do not even vaguely claim to understand the biochemistry involved...and am only speaking from the experience we had with my husband, as well as the info I have been hearing from some parents whose kids show increased tics after steroid burst anyway I am not here to enter a debate about it...I just felt it important to post our personal experience and everyone can decide for themselves what they wish to do based on the information they have available.

Chemar: Madeleine Cunningham is finding the use of steroids suppressed dopamine levels to normal ranges... preliminary findings based on CaM Kinase testing results. Didn't have time to read the link but will in the morning. I think it may be related to the dopaminergic response to steroids people with TS have a hyper-reaction to dopamine, resulting in tics. there was once an excellent article on the chemistry of TS that explained it, but I see it is no longer there as Geocities has been taken down here is the archived link of the discussion we had on the TS forum about it http://www.latitudes.org/forums/lofiversio....php?t1673.html

Double post, sorry..

Nice to hear your story and to know you've been able to manage for 5 years. I can only imagine with the whole appendicitis/pneumonia debacle.... I'd be scared of the hospital too. You are in good hands with Dr. L. Since we are in Northern California, we are starting to find a decent local support system and also saw Dr. K for IVIG in September. Welcome... you've found a great support system with this forum. I've learned so much and plan to add Biotin as soon as I can get to Whole Foods. -Wendy

I'm in agreement and as I've been stating... if PANDAS, is SC, is RF they need extremely strong antibiotic to rid them of underlying infection! I'd say try the 'Saving Sammy' dose Augmentin to see if it works.

Holding my breath for you too. I hope the quadrupled abx helps.... prayers.

Faith: You know our story... son presented with mostly TICS. Did the 5 day steroid burst with Dr. K and saw huge improvement. Those improvements did not last more than 2 to 3 weeks when the steroid wore off. Dr. K uses it mostly as a diagnostic tool to determine how your child might respond to IVIG. Typically, if you see improvement with Steroids, you'll see similar lasting results with IVIG. My friends son, had a similar experience but he presented with more anxiety, OCD, Asperger 'like' symptoms with potty training regression and mood liability. He did so well on the steroid, my friend wanted it to continue but again after 2 to 3 weeks the improvements declined and he will be receiving IVIG in 2 weeks. It was also the 5 day steroid burst with Dr. K. -Wendy

Mom2Alex I'd love to know too.... PatAnne: Sorry I don't know your full story and you may have posted before. What antibiotic is your son on and strength? How long has he been on it? Has he ever done IVIG or PEX? Does he seem to be outgrowing PANDAS yet? Do you intend to take him off the antibiotic at some point? Can you get the Jarrow Biotin at Whole Foods? -Wendy

It is Fredrick A Lloyd at PAMF.. Palo Alto Location. Also seems to know Margo well.

Wow, that is a lot... I'll need to consider upping. Currently, he has a plate full of vitamins in the morning and worried about adding one more thing. Since you've been doing this for a while... what is your daily supplement regimen? Morning: 4 Yummi Vits Vitamin E Ester C RED Reishi Omega 3, 6, 9 + D Antibiotic Lunch: Pearls Probiotic Bedtime: Kids Calm Jarrow: Saccharomyces Boulardii = MOS for Yeast

DeAnn, my son is much younger so can't add much to the conversation. I just wanted to say I feel for your situation. I can't believe how high his Anti-DNAse-B was in 2008!!!! I sure hope you can convince your son that treatment will truly help him to feel better.

We give the 'Yummi Bears' x 4 daily - sold at Whole Foods and that has enough Biotin in it for daily allowance plus the folic acid required. How much do you give your child? Is it more than the daily requirement. -Wendy

I do have Anthem: Blue Cross of CA PPO and it appears they covered some of the expense for Dr. K. Dr. fees they covered $1,800 of the $2,400 charged plus OBCS 'still figuring it out' and large % of the cost of IVIG medication. Unfortunately, our deductable was high at $5,000 so a lot got credited towards that for the first IVIG. Definitely, keep pursuing Dr. K. Perhaps a steroid burst with Augmentin would help. Also keep exploring Epstein's Barr.... perhaps you could have your Pediatrician write the lab request to bring back to Dr. Gupta in 2 weeks.

Good thoughts and my guess is M1 and M18 strains. http://www.genomenewsnetwork.org/articles/...c_bacterium.php

Just wanted to remind everyone...... that Pandas is a moving target. Dr. K has always told me to check in with him about any vaccinations, etc. I spoke with him specifically about when to terminate antibiotic use and his response was 'WHAT I KNOW TODAY... MAY NOT BE WHAT I KNOW in six months', minimum 1 year. Now, it seems he is considering high dose antibiotic... per him 'in the acute phase post IVIG' -Wendy I think that is his usual protocol...although IMO I would up the abs b-4 doing more IVIG's. His usual protocol is only 1 IVIG, so if you are finding you need more, it would be worthwhile to step back and say, "okay, what is going on here, what should we be doing differently". IMO...Dr. K (and Swedo at pen 250mg 2x /day) are too conservative with their post IVIG abs. PEX/IVIG are really big investments which should be protected with good antibiotic coverage afterward. Maybe Dr. K. gets an 80% good response with his current protocol...I wonder if it would be closer to 100% if he was more aggressive with the abs. I completely agree with DCmom: These Docs are still learning...Dr. K used to tell people they only needed 1 year of prophylaxis post IVIG, now I understand he is starting to reconsider that. Recently (I don't remember her name) we had a mom who posted who had IVIG with Dr. K. 3 years ago. Abs were only done for 1 year (per his protocol), then two 2years after stopping abs she had more problems (brought on by various bacterial infections). Her dd was back to square 1, needing another IVIG. This time around, she's not going to stop the abs after 1 year. I should also add, that by the time many (most?) of the parents on this forum have gotten to the point of IVIG (or to Dr. K), they've already done a good trial of long term full-strength abs. We were on abs (mostly full-strength Azith.) for 1.5 years before we got to the point of doing IVIG...and are planning on staying of full-strength azith for 1 year post and (possibly) a lower dose until at least age 18.

Our son is 5 3/4 years old and weighs 45 pounds. He is on 250 mg. of prophylactic Azithromycin but has been bumped up to 375 m.g. and 500 m.g. due to associated illnesses at home. At 500 m.g. all symptoms abate within 48 hours of upping dose each time. He started antibiotics 2nd week in August, had first IVIG in September, 2nd IVIG in 2 weeks to further boost his immune system through winter months. Seems to be 98% better again since upping his dose on Sunday due to confirmed strep in classroom. I actually don't notice any symptoms currently... last week we had PANDAS like mood switching Tuesday, Friday, Saturday, night waking and minor infrequent TICS. We live in Atherton, CA suburb of San Francisco.... near many of the other parents on this forum Our son was only on antibiotics one time prior in his life when he got his first TIC at 4 1/2, had a reaction to Amox, switch to Azithro for 5 days. We have done 1 IVIG. Our first IVIG was 6 weeks ago with Dr. K We feel that our son is doing very well. Like Elizabeth's son... our son's tonsils, which were HUGE are now considered to be much better. Our long term plan is to do 1 more IVIG currently, maybe more to boost immune system throughout next two years and to continue the prophylactic antibiotics until further notice (depending on final diagnoses). We would like to lower prophylactic antibiotics as we move forward as safely as possible. We will retest underlying immune system prior to eliminating prophylactic antibiotics entirely. -Wendy

You know our Pediatric Infectious Disease and Immunologist said the same thing.... If I can confirm RF in the next couple of weeks I'll request similar protocol. The doubled up Azithromycin seems like a lot but hopefully it won't be for too long. Dr. K seemed fine with it so far and hopefully get a clearer perspective if it continues to work. By the way, we are now thinking there were 4 boys at original play date in 2007 that might be affected: My older son (confirmed Pandas), my younger son (heart involvement awaiting CaM results), my friend's son (CaM 147, Anti-DNase-B 680, ESR Elevated, CRP Elevated, his ECCO is on the 12th) and her boyfriend's son. Hopefully, we'll know for sure on 3 out of 4 in the next couple of weeks and the 4th probably after winter break as they are still waiting for Cunningham Kit to arrive.

One time the lab sent it for us and one time we had to take it to Fed Ex. I told them blood sample and they had no problem. -Wendy

Completed IVIG 5 1/2 week ago. He has been on 250 m.g. Azithromycin since 2nd week in August. Shortly after IVIG our boy/girl twins came down with the flu twice so I doubled up on the antibiotics.... each time he become symptomless within 48 hours. Most recently, I lowered the antibiotic (Oct. 23rd), we saw slow steady increase in behavior (mild vocal tics, some mood liability, night waking)... confirmed strep in his class last week so we doubled up on Sunday, again symptomless today.

Celebrate!!! Good Times.............. eeeeeeeeeeeeeeehhhhhhhhhhhhhhhhhhhhhhhhhhhhhh (that is me screaming in excitement on your behalf). Now, I'm sending a prayer that it will happen. -Wendy

Debbie I'm very interested in what Dr. L has to say. We have not pulled our son's tonsils and adenoids yet.... they are swollen but not bad. However, I feel like he still has an underlying infection because every time I lower his antibiotic we see the baseline creep up (mild tics, night waking, mood liability) and every time I increase the baseline drops to symptomless within about 48 hours.... 3rd time we've done this now. -Wendy

It must feel so good...... way to go and don't let them reverse course PEX with follow-up IVIG.

We have rapid strep test at home. You can purchase on-line if you don't want to take her into the Dr.'s office for the swab. Glad to hear she is doing well. -Wendy

Plus they say to draw 10cc to 20cc. With our younger son we sent only one vial back due to his weight and the amount of testing we were doing at time. -Wendy

May have missed you this morning: Couple of things: ESR - general inflammation, C Reactive Protein 'CRP': White Blood Cell Count and Red Blood Count, STREP PNEUMOCOCCAL ANTIBODY TITER tells you if your child has the ability or not to mount a response to strep bacteria, IgG Subclasses to see if there is an underlying immune problem. When testing for Rheumatic Fever Dr.'s typically do the ESR, CRP, Anti-DNase-B plus Ecco..... because PANDAS is similar they should be done in conjunction with STREP PNEUMOCOCCAL ANTIBODY TITER and IgG Subclasses. A low white blood cell count usually is caused by one of the following: - Viral infections that disrupt bone marrow function - Congenital disorders characterized by diminished bone marrow function - Cancer or other diseases that damage bone marrow - Autoimmune disorders that destroy white blood cells or bone marrow cells - Overwhelming infections that use up white blood cells faster than they can be produced - Drugs that destroy white blood cells or damage bone marrow Hopefully, that gives you a start and maybe someone else will chime in.