purple66p

We use Neurobiologix biotic boost (order online). Our doctor said to use it only 2-3 times a week. I concur with the recommendation to start slowly. We also use Super Greens (Neurobiologix, too) which has some probiotic in it as well. We use them in a daily smoothie and they have really helped my son regulate his digestive tract.

We originally bought the cream from a compounding pharmacy, but it is now available OTC through Neurobiologix. (Link: http://www.neurobiologix.com/Neurological_Immune_Support_B12_Topical_Creams_p/46.htm ) kI'm not in any way endorsing this company--he was on the compounded cream when his iron was improving. Our doc has just changed to the one from Neurobiologix and he does use this for his autism patients as Stephanie2 mentions. However, I believe it was a significant help in resolving my son's low iron levels since we hadn't really changed anything else at the time.

My son's iron had been dropping for years until recently. We put him on a vitamin cream with B-vitamins (including B-12) and vitamin D. His iron levels are now normal. The doctor explained that he was not absorbing vitamins correctly in his gut. We did not do any iron supplementation. You may want to check into "pernicious anemia." It is caused by low B-12 levels.

I hate to think what it will do to my son if we move...he is so easily destabilized at this point. He has good and bad days, but I think we are slowly making a little progress. However, we're thinking maybe we'll have to move to Portland OR (from TX) for my husband's work. Does anyone have a good doctor there? How are the schools for special ed needs? Right now he's in a great private school that specializes in kids with special needs, but we can't continue that next year if my husband doesn't have a job! Please PM me if you don't want to recommend (or not recommend) a doctor publicly. THANKS! CJ

The neuron and streptococcus make a nice pair, don't they? NOT! thanks for sharing!

My son is a little more easily set off and aggressive since switching to Azith 3 weeks ago. Other things are better, though. He is no longer sleeping on the floor of our room and is sleeping over at a friend's house. Too many symptoms to track! We're planning to "tough it out" for another week and either go back to Augmentin or go off of antibiotics for a little while. His doctors want us to go off, but I do have 6 more months of Augmentin prescription if he really loses it when we stop the antibiotics. Now that I've finally gotten him off of lithium we can try ibuprofen.

OMG, homework is the worst! My son also has short-term memory problems but, because his handwriting is so bad, he doesn't want to write anything down so he does his math in his head. His ability to do his homework waxes and wanes with his other symptoms. When he is having a bad time it takes sooooo long to do homework, and sometimes I just write a note to the teacher saying that we'll have to finish it over the weekend. Unfortunately, he's not very stable yet so we have week to week and even day to day changes. (One night he had me write on his paper that "[he] is very stressed out about homework." For some reason after writing that down he was able to do his homework, and he turned it into the teacher that way.) We put him in a new school this year (private) that is especially for special ed students. I love the flexibility they allow! He's pretty good in math and science, so he takes those with the 9th graders, but behind in language arts, so he takes that with the 7th graders. (He's in 8th grade.) Also, we try to keep in close touch with the teachers--I let them know if he's having a particularly difficult time and they let me know if they notice any changes in his behavior in school. We've found that finding the right school has made all the difference in the world. This year is the first time he's been happy to go to school. He used to sit in the car and cry many mornings before finally getting out and going to class. At his last school we tried to describe my son's problems to the special ed director. Her response "We all have our little challenges." Agh!

My son has terrible short-term (working) memory. His processing speeds are also extremely low. He gets very frustrated and angry about this, saying "I just had an idea and I've forgotten it already!" However, his long-term memory is great!

Thanks, everyone, for the advise. My husband took him to work with him yesterday afternoon and he was very well-behaved. He has been really down the last few days and evidently can't stand to be alone. Last night he was saying that nothing we do ever makes him better. But I can see a difference. His tics are almost gone except when he is really stressed and he is sleeping better. But it would seem the obsessive thoughts have probably increased, with the current obsession being fear that he'll hurt himself, and his mood has been very volatile. Worried Dad: it is so great that your son is doing well. It gives me much hope. We've had a kitchen knife incident as well with him threatening to come after me. My husband all but gave up on a career to take care of our son, but has recently started back to work full time in a job he really likes. With 2 kids in college in addition to all our son's medical expenses, we both really have to work.

I've got a big problem this week. My son has said that he will kill himself if he is left alone. He's out of school for the rest of this week & needs to be alone some of the time, at least when his sister is taking her finals. (My son is 13--certainly my older kids were left alone during the day by 8th grade.) He has stayed at home by himself before, but is never happy about doing so. Today my husband went home to be with him when my daughter had to leave for her tests. I'm not sure what to do. He needs to understand how important it is not to threaten to kill himself if he isn't seriously feeling that way. If he is serious, then should he go to a psyc hospital? That's what the psychiatrists would tell you, but NO WAY! That'll be a disaster that makes everything worse. I think he's just really afraid to be alone, but I'm not sure if he's using the threat to get his way or if he really means it. I'm not sure he even knows. Has anyone else had this problem? How do you handle it with a teenager?

We use the following: 2.5 g high-quality fish oil (Nordic Naturals) 5000 iu Vitamin D (my son's levels were extremely low; might want to have your child checked) Methylfolate, P5P (B6), Methyl B12 (in a cream form from Neurobiologix; my son doesn't seem to absorb properly in his digestive tract, thus the cream) Smoothie each day with Magnesium citrate (Natural Calm), Biotic Boost probiotic, Super Greens (both Neurobiologix) and Spirutein (which contains a pretty good multivitamin) (the smoothie color is ugly, but if I put it in an opaque cup he doesn't notice; also, strawberries, banana and milk in smoothie) Wow! I didn't realize it was so much until I added it all up.

My son started azith about a week ago. Since then he has slept over at a friends house (really amazing for him) and slept in his bedroom instead of on the floor in our room. He's still having a really hard time with his mood and yelling at very little provocation. One step at a time!

I find it interesting how low many of our kids are. My son was 15 ng/ml--very low even though it was summer when he was tested and he spent plenty of time playing outside without sunscreen. We've given him 5000 iu Vitamin D3 per day since then. We haven't rechecked lately, but I'll ask the doc to do so on our next visit.

I haven't been able to try Ibuprofen yet. He's been on Lithium for years (we thought he was bipolar), but he's almost off now. We're down to 300 mg/day from a high of 1200 mg/day. In a couple of weeks I'll be able to try it. Unfortunately, when he gets "bad" I have a hard time talking him into trying anything. "It doesn't work," he says. His doc gave him oxytocin to help calm him. I think it really takes the edge off when I can get him to take it.

Big House Red. Has a screw cap & is very good. Or you could go the box route--spigot. Can't see how much you've drunk already, though.

We tried doxy first with no obvious improvement in symptoms. My understanding is that tetracycline is a problem if the teeth are still not erupted but that it is OK once they are in. My son is 13 so he already has all of his permanent teeth.

When do most of you give the Azith? The pharmacist told me that as long as it was the same time each day and with a meal either morning or evening was OK. I chose evening because my son won't eat much breakfast. Last night was the first Azith dose and there was no difference in his falling asleep nor did he have nightmares. He did seem to have a very vivid dream which he was able to recall this morning, and that is unusual.

My son had warts on the lower half of his face. The dermatologist said that they would eventually go away once his body figured out how to fight the virus, and they did so after a few years. These occurred during the period when his (what we now know were) Pandas symptoms started and we were so overwhelmed by those problems that we never really worried too much about the warts. I do wonder if these secondary infections occur because our kids' immune systems are so overtaxed.

We're switching to Azith, 500 mg/day, after a couple of months on Augmentin per our neurologist's suggestion and family docs agreement. I think he made some limited progress on Augmentin (or perhaps increased fish oil, not sure) but I know he can get much better. Unfortunately, last night the tics started back like crazy BEFORE we gave him the Azith. I asked if he knew of any strep cases at school and he didn't think there were any, but I will call to check for sure. The previous night he was mean to everyone and had a major tantrum, but last night he was sweet with massive tics. It's an ever-changing mess of symptoms and so hard to sort out cause and effect because of that! I'd rather have a sweet kid with tics, truth be told.

Yes, we are definitely supplementing vitamin D and using fish oil. Maybe the fish oil just hasn't "kicked in" yet since we've only been very regular about it for a few weeks. I'm giving him 5000 iu Vitamin D until we re-test. It's my understanding that you should use about 1000 iu for every 10 points you want to bring up the vit D blood level.

We just got back from our 2nd visit with the neurologist. Good news: he accepts Pandas as a diagnosis. Not so good: isn't convinced that there is a clear-cut treatment path, and seems opposed to IVIg. I left him with our Cunningham results and a few papers to read. It is interesting: he had noted a correlation between tics and strep a number of years ago before most of the literature was published. Our family doc had prescribed Augmentin (per my request) but the neurologist prefers Azith, which is OK by me since we're making very little progress with Augmentin. Tics are better, but mood lability (read: tantrums) are up. In June his ASO was tested (208) and now it is 200. Norm is <=150 according to the lab write-up. He's been on antibiotics most of this time (Doxycycline, Amoxicillan, now Augmentin). I know that Pandas isn't necessarily strictly correlated to ASO, but shouldn't this be going down by now? I guess we'll see what the Azith will do.

Has anyone had a metabolic panel? My son's triglycerides are through the roof! I mean crazy high (700 mg/dL and 130 is normal high). Is this common? I think it is probably because of 5 years of Abilify, but I just wanted to check and see if this is common. Last time we tried to take him off of Abilify he completely lost touch with reality, so I really want to get the Pandas under control before we try to do that again. We have dropped his dose considerably, though. During earlier tests, his Vit D was extremely low (15 ng/ml and 50-80 is normal.) It is so frustrating to have so many things wrong and to not know for certain what is the best path back to wellness! I don't know what is Pandas-related and what is other health problems. Aggh!

We had a full evaluation by a neuropsyc ($$$) last spring. As we told our son, it was to figure out what he was good at and what things were difficult for him. There was full psychological evaluation (result: OCD,depression/bipolar,sensory processing disorder,dysgraphia), full academic achievement testing, and intelligence testing. One of the most dramatic results was that his processing speeds were extremely low (<1st percentile) but that the other measures of intelligence (logical/mathematical reasoning, visual/spatial reasoning) were very high. Now that we know he has Pandas, the slow processing speeds make a lot more sense. Some of the problem with the slow processing was that he had to keep stopping to do tics/compulsions. Anyway, if your insurance will pay for it, I highly recommend a full neuropsyc evaluation. It helps a lot with knowing what to focus on in school and what therapies may help. When (positive thinking!!) my son gets better, we will probably repeat the testing.

My son is 3 weeks into the same dose and is having similar problems with rages and difficulty sleeping (related to compulsions.) We're trying a few things: 1. 20 mg hydrocortisone in the morning (our doc does not like prednisone) 2. 2.5 g very good fish oil (Nordic Naturals) 3. Supergreens smoothies and probiotics to help normalize his gut I've seen some improvement in mood with these changes, but nothing dramatic. Unfortunately we can't use ibuprofen because we're still trying to get him off of lithium, but when we do I intend to try it. There are a couple of things that seem a bit better. His handwriting is almost legible! It has been horrible since he got sick 6 years age. And the tics seem a little better. They're still there, but just not all of the time. But I do hate the rages and volatile mood! I'm tired of walking on eggshells.

Fuelforall: thanks! very helpful reading.