PatAnne

I'd like to add that my son was about a week away from being home schooled because the anxiety was so bad we just could not stand to watch him suffer the effort it took to make it though the day going. That decicion was killing me because he had just started in a really great school. Finding a med like baclofen to lift this anxiety/OCD off the shoulders of this poor kid, has been nothing short of a miracle for him. Everyday is a good day at school... Never thought I'd be able to mutter those words after what we have been through the past few years. PatAnne Pat Anne- That's fantastic! Thank you for sharing.

Nancy and All, My son (very similar story to Nancy minus lyme dx),was on rilutek for almost three years. It was actually only really great for the first 4 months. In December after reading some very interesting articles about Baclofen, a drug that's been around for a very long time as muscle relaxant, we decided to switch from rilutek to baclofen. We had also just gotten a script for IVIG because my son had a very bad PANDAS episode but decided to see how the baclofen would work. Well now, we have been THRILLED to see 97% of the OCD/anxiety is gone! It's been the best few months in so many years. The other good thing is it's affordable! We started at 1/4 tab 4x/day and slowly upped the dose to 1 1/4 tab 4 times per day (DS is 14 120 lbs).It is a drug that cannot be abruptly stopped. I encourage anyone interested to look up the NYT articles and study details on baclofen/autism/fragx research at Seaside Theraputics in MA. They have had successful trials so far with a formula 10x the strenghth of baclofen in terms of blocking glutamate, so the new drug hopefully will be on the market in 2013. In the mean time, baclofen is gaining use off label for anxiety/OCD. Best, Patricia

For those interested, Mitoaction.org has excellent articles and screening for mito/ASD. Tomorrow at 12:30 EST there is a call-in with Richard Haas MD, a neuro from UC Davis will discuss mitochondrial dysfuntion in ASD (and his new article). He feels that in some kids the mito is primary, causing the ASD symptoms. In another cohort it's secondary to the ASD. We recently participated in a research study which found low/normal complex I activity in my son, which means he has a deficit in mito functioning for sure, but not a life threatening progressive mitochondrial disease.He absolutely needs the cocktail because he has a functional disorder. He is also immune def, but this often goes along with the big picture as well. Just an FYI, some of the best and brightest out there do admit to seeing clear cut mito/ASD caused by vaccination response. Especially those that endured long lasting fever afterward. In my son's case it was three weeks of fever following 3 triple vaccines in one day. That was enough to cause CNS damage per our geneticist. PatAnne

My son also has been diagnosed with "mitochondrial ASD" by a prominent metabolic geneticist. We tried from age six to get this diagnosed due to his exercise fatigue, heat intolerance, and decompensations during illness. PANDAS was also a significant problem since age 3. The key for us was getting labs like carnitine profiles, serum and urine organic acids, and CPK done when he was ill with a virus. That is were the dysfunction became obvious. Carnitine, Co10, antioxidant supplemetation has really helped him. There are many Hannah's out there, and what I find very interesting is how many of them also suffer from PANDAS. PatAnne

I heard a neuro a few years back say riluzole was really similar to "super GABA" She said it worked in the same way and both were neuro-protective. My son did amazing on riluzole for about 4 months then started to see some of the old behaviors return. It really made a difference in learning however. PatAnne

Well, we had to take him out of school early last year (home and hospital) because he was such a mess. Unbelievable anxiety, and just such a mess until august. I wonder if he had myco-p back then? He was diagnosed with PANDAS at age 9 with symptoms since age 3. Back then no one tested for myco-p. At age 9 tests were negative for strep.He also had a postive ana back then, and low C4 which has steadily gone up over the years. When he is sick he looks like death, really pale and weak can barely function. Patricia

I forgot to add the myco-p IGM was only 73 (770> Pos) so does that mean the infection was long ago???

My son's myco-p test just came in at 1.5 (ref .9> is positive). He has had a horrendous couple of months of upper respiratory illness. As a result behavior is a mess, rages/swearing, separation anxiey, catastrophic fears. I made an appt with Dr. L for next week because I thought it was strep, but those tests look normal. It is taking me an HOUR to get him into school in the am (oh yeah and he is 14 not a little kid). He was on azith a week or so before this test. Do you all think I should still see her? He has a history of pneumonias (one hospitalization), so is he a PITANDS kid? Thanks, PatAnne

very pale, bluish/grey around the eyes and mouth. PatAnne

Also check for complement deficiencies because it make it harder to fight! My son has a C4 deficiency and was hospitalized last spring with S pneumonia. The thing was that when I saw how ill he was I recognized that he had had this many times when younger and it was not diagnosed. It was the cyanotic look of him that I had definately seen before! He had very definate PANDAS symptoms at this time. An immuno at Hopkins when sent his pneumoccal antibody test result (only 1 sereotype) said PANDAS had NOTHING to do with it. PatAnne

This issue brings to mind the recent findings out of the MIND Instititute on autism prevelence in upper middle class communities in CA. Also the MUCH lower incidence in hispanic populations. This certainly questions the medical histories of both mother and child and exposures to many more vaccines and antibiotics as well as chemicals. I've been struck over the years by how many kids I've met with Irish/English lineage with regresssive ASD's and PANDAS. I also wonder about the propensity for celiac disease and intestinal/BBB permeability in these groups. We are mostly Irish with a *sprinkling* of Italian! PatAnne This means that an important place to focus initial efforts of a "Got Strep" campaign could well be the inner city. I am by no means a sociologist, I just raised this issue as it may be an important scientific clue in the etiology of PANDAS-like illness. Definitely something to consider discussing at the Autism One "think tank" session in May. Dr. T

Interesting question, but in my case I saw what was probably mito in my Dad, It just did not have a name back then because only the most severe form known of mito "disease" got any notice (a severe neuro/physical decline illness). Mito experts now feel up to 20-50% of ASD's may involve mito dysfuntion. Any history of regression is a red flag. For my son, I think an underlying mito disoder or vulnerability, caused the adverse vaccine reactions and regressions, and the antibiotics helped to cool the constant immune uproar. Of course so much is "chicken or egg" thinking ! BTW, Heavy metals can also cause mito dysfunction. Vaccines are still full of aluminum.

For all of the parents on this forum with a child anywhere on the ASD spectrum, look as hard as you can in this direction too! I have thirteen year old with a history of PANDAS and regression/stalling out during illness. By regression I mean his speech is backwards, he is too fatiqued to think or do school work, heat intolerence, and frequent illness, mood swings, exercise intolerence. He also has a C4 deficiency and his lynphocyte panel is pretty poor. I've looked briefly at Camkinase and how this is actually related to mito functioning and cholesterol transport.. Mitochondrial dysfunction also seems to be related to bipolar disorder...So, although this science is ALSO still in it's infancy,and firm diagnosis can take years, a trial of a good CoQ10 (Tischcon Cyto-Q ubiquinol) and Levocarnitine might help many kids. My son STILL needs constant abx's but these vitamins (as well as others) are really helping him. FWIW..

I can really relate, I know how bad you feel. When we took our son compltely off even his TINY dose of zoloft, he really suffered when we hit an exaserbation. My bet is your son no longer has that part of his net and is really struggling. This is why getting kids off of these meds is so difficult. My son is going though a bad time right now too (post viral) and I honestly feel beaten to a pulp too. Recent labs point to C4 deficiency (which we knew about) and 1 of 14 step p. titers, but I don't think we have a prayer for IVIG. Add this to the eye rolling doc's we continually deal with and I'm wishing I had amnesia... Take care! PatAnne

Hi Joan, Sorry you are going through such a bad time of it! My son is 13, dx'd 5 years ago. We started with cefzil years ago and are now back on it (omnicef) for the past two months. This has been hands down far more effective than azith for my son! We even had an exacerbation 6 weeks ago, and he pulled through far better than in past years. Maybe a change in abx would help? PatAnne

Hi, My son had HSP twice at age 5, once caused by staph infection in his ear, the other we think strep. Srtep causes HSP in up to 50% of cases which I never knew. It was awful. It was only a few years ago our allergist found my son had a VERY low C4 level (8) and a low IgGsubclass 1 (also an IgE of 1200 which is common for him). Low C4 is associated with HSP, especially multiple episodes. Have you ever had C3 and C4 tested? Our allergist was sure he would need IVIG, but the immuno we saw at Hopkins said he was just "unlucky" as far as his immune system functioning goes! This is a kid who cannot go off antibiotics without falling completely apart! In any case, we will re-test next week and what things look like now. PatAnne My son had a group A strep infection in the beginning of November. His PANDAS symptoms lasted around 2 weeks and then went away (for the most part). One week after remission his PANDAS symptoms came back FULL force. A week or two later- I took him back to ped. (Last Thursday- 5 days ago) "something, is still not right. His behaviors and tics are back" I think he may still have a strep infection and I would like an antibiotic before surgery". She assured me "no way possible for him to have another strep infection, he just finished 10 days augmentin. I will not over prescibe antibiotics, why do you want antibiotics before surgery when he clearly doesnt have an infection?" I demanded another culture. After leaving her office, I began thinking "maybe she is right, maybe he doesnt need antibiotics before, maybe I am just a crazy paranoid mom, maybe his behavior is just a result of the vaccine a few days ago." Since then His PANDAS symptoms have decreased greatly - but has gained the cough and leg pains. I am kind of worried about this- the last time his PANDAS symptoms decreased at the SAME his Physical illness increased- he developed HSP. It was like the antibodies left his brain and then attacked his blood vessels. Has anyone experienced this? I am sure he will be fine- I just don't have any faith in dr's anymore

These involuntary movements can absolutely be related to seroquel! Please revisit this with your doctor as this can become permanant. Good luck, PatAnne

Dear God in heaven! Try to see Dr. L. asap, you WILL get your son back! BIG hug... PatAnne

FWI, all he need do is Google antibiotic/biotin and he will see lots of valid information! Really surprises that me more docs don't know this. Hope all tests are normal! PatAnne

Hi Ellie, Yes, I think I saw your post the other day on this and wanted to reply when I had time. The lecture at NIMH was from a neuro at and a social worker reporting on Dr. Grant's study on Riluzole and OCD/ anxiety disorders which included NT/aspergers/PDDnos kids . I was so excited about what they were seeing and how neuro protective the Riluzole was. (They also mentioned GABA as a sort of lighter weight version and a supplement worth getting at your local HFS). The following month my son had a very bad PANDAS episode which left him with separation anxiety, depression, and behavior so bad we were going to have to take him out of school. My husband wrote the rx for Riluzole, and within three days my son was turning around. For a good four months he was so, so, well! Learning and the desire to learn had really changed for the better, handwriting which was a mess became almost perfect, global improvements in all things anxiety related really. Then he got pneumococcal pneumonia and we had a tough time for a few months. Now we are at full dose and he is continuing to constantly mature and change. We had lost so many years, as so many of you know all too well. I know Riluzole is expensive (we pay 100 per month after insurance) but worth every penny for us even if he still has strep or viral setbacks. Participating in Dr. Grant's study may be a good way to go because even if you get placebo first I understand you will get the real deal free after that, which is great (not to mention lots of tests done on your kid). We do test liver enzymes every couple of months and use digestive enzymes on this med. BTW, Dr. L. said she thinks this med may be big deal in the not so distant future. Not the "whole picture" , she said, but a good piece. Hope this helps! PatAnne (who spelled BIOTIN wrong!)

Hi Wendy, My son was dx'd almost 5 years ago. We started on cefzil and penicillin then. Mostly we have just always been proactive about being informed of strep infections by school staff and as soon as the cleaning OCD starts we start the ABX. My son has also had very bad episodes from viral infection but they do not typically include the contamination issues like strep does. My son is still having PANDAS episodes with strep exposure and the OCD is worse with viral illness. We are now on Omnicef and he is doing well. He has always been a real mystery to the docs we have consulted mostly because no one has really wanted to take the PANDAS dx seriously. I heard about Dr. L and we saw her several weeks ago before I knew this forum exsisted! My son was amazingly stable when we saw her, but she got what we have been through so we will test Cam when he is ill and see what happens. We talked about IVIG and PEX but my son was misdiagnosed with appendicitis in the spring (he actually had pneumonia) had he had a very difficult time recovering from this. So did I. He really went backwards in so many ways after this surgery and now he is petrified of hospitals! Cannot imagine being off abx's long term ever... I think Whole foods does have the Jarrow, PatAnne

Looks like a good list. We have also found a lot of benefit from B2, CoQ10 (from Tishcon Q-gels at epic4health), NAG, and activated charcoal or Olive leaf extract (PHyto gel caps from Whole Foods)for yeast. Olive leaf extract is an amazing supplement in my experience. Because abx's were causing colitis to worsen we have been using Pentasa a colitis med 2x/day for the past four years. Another really big help! Oh, and one more thing..when my son was going through a bad time last fall post strep, I attended a lecture on currant research at NIMH on Riluzole (for OCD). This has been a WONDERFUL med for my son, not one side effect, amazing. PatAnne

My son is 13 so we give 1mg (1000)mcgs per day. I like Jarrows biotin/ALA combo. Country Life was another good brand. Just my personal opinion here, but I supplement individual things like biotin, or b12, just to be absolutely sure my child is getting what the package says. I also find I'm better able to see a reaction (or lack there of) this way. As we all know there can be a vast difference in the of quality in supplements we buy! Also, biotin is a fat soluable vitamin. Therefore, it can be replenished and the body is good for a while but can then become deficient again. So you fill up the well, but it can run dry later. The abx's are just going to constantly dry up the well. PatAnne

No, Biotin is a different vitamin but also needs mag, PatAnne

Hi Everyone, I am new to this forum but have been using abx's for my son for a long time. I hope everyone knows ( I'm sure they do!), that they should have thier child on a good steady dose of biotin while on abx's? Yeast can also add to the problem depleting biotin more. Biotin and magnesium used at the same time works best, and if you have a younger child start a low dose (400mcgs) in the AM only (can make some kids hyper at first) with a good magnesium supplement. Biotin (or vitamin H), is depleted by most abx's used for PANDAS! It can cause skin rashes and hair thinning as well as severe dandruff problems. It is also needed for cellular energy! It was a GREAT supplement find for my son years ago, as he never had normal fevers/colds before we used it. After multiple high fevers as a toddler (post vaccinations) he would just not mount a normal immune reaction to anything but was chronically ill! PatAnne