lfran

How much folinic acid are you using?

You may want to ask if you can get Dr. T's blood work done ahead of time -- that way, you can discuss the results with him at the appointment, rather than going in, getting the lab request, and then having to schedule another appointment to discuss the results. Be forewarned, though, he typically orders about 22 tests. A lot of blood, and a LOT of money, depending on your insurance. You might want to ask about getting pre-approved for the lab work, if you think it's possibly an issue.

Here is the link to Igenex's request form. It is the Epitope test that I was referring to,as well as the Urine DOT Blot test.

Two items to consider. One, if you ran the labs through Igenex, once you get your copy, call and ask for a consultation with Dr. Harris (their lab director). At least in the past, he would talk to parents after they had their results for no charge and briefly explain things and give his opinion. If that doesn't work,he will probably still talk to you PCP about your results, if you want to go that route. Two, if I remember correctly, if you act fast enough and Igenex still has your child's blood, they can do a follow up for Band 31 that can give further information (not free,though). Third, you can do a urine dot blot test (also igenex). Not super expensive (used to be $60 a pop and they recommend three samples,so $180. A lot of false negatives, but a positive is supposed to be definitive. Not an antibody test -- it tests for Lyme antigen being shed in the urine. I spent a lot of time in the past talking to Igenex. They were very helpful.

Thanks, all!

When we were on Rifampin, they tested every week for 2 weeks, then every 2 weeks, then I think once a month. I think there is a published protocol for rifampin in particular. Couldn't find one for Augmentin.

Can anyone share how frequently you test liver function (cmp panel), especially when on long te antibiotics? I know we tested very frequently when on rifampin but are now on augmentin and looking for a happy medium to avoid frequent blood draws. Thx!

So very sorry. Sending all my best thoughts to you.

So sorry. My thoughts are with you.

Can't address your original question, but are you open to genetic testing that is assessed by a spit test? 23andme.com offers this type of testing for $99 US, without a doctor's prescription. A lot of us have found issues with methylation and the folate cycle, and although 23andme doesn't report on this directly, you can use the data file that they create for you with a third party (http://geneticgenie.org/methylation-analysis/) to get a good report on this. You can work around some of these genetic problems with over the counter supplements (special forms of the B vitamins, mostly) and some of us have seen a lot of positive results, neuropsych-wise, with this approach. It takes about 7 weeks to get the results back, and it is best to work with a naturopath or integrative doctor to work with the supplements, but you CAN do it on your own if necessary. Also, there is some implication of thyroid issues with OCD. Most thyroid testing does require a blood test, but there is a spit test for adrenal issues that you can do, and that may shed some (but certainly not complete) light on this. Additionally, great plains laboratory, metametrix laboratory, and doctors data laboratory (and probably many more) all offer various urine, hair, and stool tests that might show something. A comprehensive stool test showed that my son had strep in his stool, which his neurologist thought was significant vis a vis PANDAS. You would probably have to pay out-of-pocket for these, and they mostly require a doctor's prescription, but that is another way to go. If you have a willing doctor, you could just try to start testing bodily fluids(and stool) that don't require a needle and see if that gets you anywhere at all. And I have no idea of your finances and schedule, but when we were at Rothman they did say that people came to them from all over the world. They were far and away enormously more effective -- and efficient -- at ERP than any of the three OCD specialists we'd seen at home (California). They have intensive programs, so you can go one or two times a day, and can stay for several weeks at a time and they really make people address the OCD in a way that other therapists don't seem to.

Here's one thought. If you don't already have an LLMD lined up, you might give yourself peace of mind by finding one and scheduling an appointment with them so as to establish yourself and your child as a patient. Then, if you ever suspect a problem, you are not a new patient trying to find a doctor that you like. Also, it is usually longer to get a first appointment than a follow-up, even if the follow-up is years later. So you won't be waiting for a long time for an appointment if a problem does crop up.

Will these kids take a bath if you let them wear their swimsuit to do it? Maybe that changes the parameters?

Do you mind sharing how low is very low? Ds11 was 30 31 and 32 on three different times.

I'll add that ds11 is always bottom of range or just below bottom of range for generalized igm. This is a known, very rare deficiency and there is no treatment protocol. Fortunately he is rarely sick. Anyone else have this?

Some kids r afraid they will go down the drain or they don't like the noise and whirlpool effect of the drain.

What happened to us was that I paid $99 for each kit. I spoke with a Courtagen representative who told me that that was the extent of my obligation. They did try to bill insurance, I think Blue Cross paid a very small amount, and I have not been further invoiced. Now, this was only a couple of months ago, so a surprise invoice may come from Courtagen, but that is not what I was promised by the Courtagen rep. You may want to see if you can still get it this way, if possible. On the other hand, it only showed a handful of SNPs, and the 23andme shows thousands and thousands. Also, the Courtagen test did not reveal anything particularly useful for us.

We had general homework of working on facing the triggers pretty much as much as we could. The idea is that they can become comfortable in the clinic, and face and address the anxiety, but the real world is still out there. So,yes, we did "homework" on the weekend (and also upon our return home) but it's not 24/7. We had a lot of relaxing and fun times too.

Also my insurance will cover an out of state doctor but only if I go there in person. They will not cover phone consultations.

When dr t ordered the genetic courtagen tests for us they had a deal where if I paid $100 for each I the two tests ahead of time, courtagen would take the risk of not getting paid if insurance didn't cover it. So it's worth calling and asking about

If your child is gifted and the school can't accommodate that, in my mind that in itself is a very good reason to homeschool. Otherwise, she won't be learning and it will just be a very boring daycare. Day after day. Month after month. Year after year. It can be excruciating to be reading years above grade level and have to sit through basic phonic lessons and simple math. Does your area have good charter schools? Sometimes the are more flexible with their teaching.

They do treat adults, and many of the families on this board have had extremely good experiences there. They take insurance and they have both OCD therapists and medical doctors there, who are specialists in PANDAS. They offer both intensive therapy (one or more sessions a day) and traditional, once a week therapy. The Ronald McDonald house is where you can stay for free/very low cost while receiving treatment there. Not sure if it is limited to families with kids or if it is also open to adults.

I will clean it tonite and let you know

We were at a really lovely low key moderately priced hotel in st pete beach with a kitchen and two pools and beach access. Trying to remember its name but it is across the street from the Howard Johnson's. when r you going?

I recommend you go on igenex website and or call them to see their compete set of offerings. Also there is a lyme culture test available from advanced laboratories but you need to be off abx for a month I tkink