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