lynn2

We went down there in January. We saw someone from Murphy's staff (see above posts on coordination of the 2 offices). Didn't get much PANDAS treatment there since we've tried most of the usual treatments. However they did recommend we try Risperdal when we got back home. We did get quite a bit from the 3 week intensive though. DS has a lot of problems with rage, hitting, impulsive problematic behavior. He is pretty atypical likely because he went so long undiagnosed. He had also stopped doing all homework and taking all tests at school. We, as it turned out were sort of enabling this behavior by our response to it. The therapists there really helped us to respond better as a family and laid some good groundwork for continuing. However, we didn't really see the progress until we added on a tiny dose of Risperdal. It has lowered the volume enough that we can actually make progress with what we learned there. Anyway, I highly recommend the treatment there and can attest that even if your child has weird symptoms, they can figure them out, if not completely cure them.

We got DS extra time to take SATs in 7th grade for Johns Hopkins. He didn't have a 504 then and they were very picky about having the exact tests that ate specified in the guidance documents. They also cluelessly lost our application twice. But once you get it you are good for all of HS.

For those considering psychiatric drugs, we thought that Tenex was probably the least intense drug we could try as a starter, but it was not helpful. DS became really anxious and angry. Many of his old symptoms came back, including the dreaded one of hitting me. We started with the smallest dose and observed no real effect the first couple of weeks, although DS felt that his tics increased and that he was somewhat angrier. We upped the dose last week and within two days he demanded to get off it. We tapered off and now, 2 days later, are back to baseline. Now the Dr wants to try stimulants which I am willing to try since apparently problems will show up right away and leave as soon as the drug is stopped. Anyway, DS is self medicating with coffee...

This gives a list of a whole bunch of organizations that will refer you to psychiatrists who do CBT. There is also a list of centers that do OCD/CBT intensives. http://www.brainphysics.com/resources.php Since this comes out strangely, the website is www.brainphysics.com/resources.php

I'm glad to hear that he has improved so much--if you don't mind my asking, what has improved? I'm trying to figure out how to measure improvement.

You're sure you did this in Tampa? It amazingly sounds exactly the same as when I did it in deepest Queens! I thought it was just typical NYC behavior. One thing the tech told me was that even if they are fasting they need to be really hydrated the morning of the test because dehydration increases the likelihood of the vein collapsing. Best of luck with the testing!

That's a really good list and encompasses about everything I have. The only thing I would add is being forced to wear long sleeves, but I think that could be a combination of OCD and tics.

Thank you all very much--I don't know what I would have done without all of you. So I think (if I can convince DH)I should check with Igenex. I did get the ILADs list of LLMDs, but I trust you all more than them, so does anyone have an LLMD to recommend in the NYC area? Lynn

I'm so sorry you are having to deal with this. I know that scary feeling that your child has gone away and can't be reached or helped. My main input is that I agree with your plan to find a PANDAS doctor to help you. The relief of having someone who understands what the problem is and can help you plan and understand the treatment is nothing short of awesome. It can be so draining having to be an expert in an area where you have no training or experience!! I hope things are resolving for you now and that you will be able to go home soon. My thoughts are with you! Lynn

DS doesn't have any eye problems that I am aware of, but no one asked and there were no eye effects that I am aware of from 2 IVIGs

DS14 has had two IVIGs, one in August and one in November 2010. The first one did nothing that I can tell--he got much worse for a while and then got barely back to baseline. He was on Omnicef, got some sort of exposure and went into exacerbation. I tried substituting OLE and the bottom dropped out, then we switched back to Azithromycin and shortly after that had IVIG again. This time, although we haven't seen the major getting worse part, we still haven't seen any improvement. The odd thing is, though, that we have kept the azith up for the whole 6 weeks even though we don't think we have ever seen any improvement on antibiotics, and DS had a stomach ache and I stopped the antibiotic since it appeared that it would just come back up. I didn't start the azith back up again for a while, just gave some OLE in case the stomach problem had been c.diff or something. Rages suddenly started appearing, along with weird scary OCD stuff centering around hitting me (DS is 14 and 6 feet tall.) He never actually hurt me or even left a bruise, but he started to have daymares about really hurting me and how he would feel about that. His anxiety, consequently went through the roof, resulting in even more OCD. This was all occuring while he was trying to excel in his very competitive high school. (His art teacher, a wonderful woman who really likes him, called up and asked why he was continuously trying to start arguments with her in class.) After a while it occurred to me that I hadn't restarted azith. I did that, and everything began to go back to normal. That was 3 days ago, and he is pretty much back to baseline, which isn't exactly great, but certainly better than last week. This was a real surprise. We didn't see any improvement during the first trial of azith and we assumed it was having no particular effect, but apparently we were wrong. In fact, we were beginning to think that he didn't have PANDAS at all but just tourettes sadly complicated with developing OCD. But if the antibiotics are helping, but IVIG so far has not (after 17 weeks from the first ivig and 7 weeks from the second,) then ...what? Are we also lyme candidates? We did quest western blot and myco, with totally negative results. Maybe we need to try Igenex.

As of last year Cunningham is tax deductable. They have it set up as a foundation and will send you a receipt.

Would you mind my asking how the IVIG treatments are going? Is the lyme testing just to make sure that nothing is missed? Just asking because after 2 IVIGs, we are just now seeing only a tiny bit of ephemeral improvement and looking for any light at the end of the tunnel.

I tried DS on enzymes. There are some that really don't work for him (can't recall the brand, but they make Trienza which works for many people, just not us)--they make him hyper and increase his tics. He did well for a year or so on Enzymedica Digest Gold and Glutenease, with Candidase for yeast--it really did seem to improve all of the symptoms although they were still there. Then we stopped when we started the PANDAS treatment because it seemed like just too much. I tried starting again recently and they seemed to make him worse. Could be I started too fast--low and slow is absolutely essential for enzymes. Or maybe the worsening could have been totally unrelated to the enzymes. The Enzymedica manufacturer has stated that they don't interfere with antibiotics.

On our 1st IVIG, DS14 had about one or two good weeks, then the effects went away. Had a second one two weeks ago and everything became spectacularly worse. Slowly coming back again with many saw toothed effects. My Dr thinks that 3 to 4 is a likely number to start seeing results. Of course, DS has had this since 5 and is now 14, so may need quite a bit more than younger, shorter duration patients.

DS who is a freshman this year has the following Extra time on any test where he needs it. Unlimited bathroom breaks with no questions asked No penalty for bad handwriting/ability to use a computer on exams and homework. He is in a specialized high school where they don't get a lot of 504s but really, it makes a big difference and I don't see any stigma. The guidance counselor goes around and tells everyone what the problems are and what they are required to do about it. DS doesn't have to explain anything. I highly recommend it. Good luck Emerson!

Another reason to try and get to this problem earlier in your child's life. I just got back from Parent-Teacher night at my DS' specialized high school. It took a lot of work, both on his part and on our part, for us to get in there and it is particularly upsetting that he is in major exacerbation right now, as the year starts. How to explain to teachers who are telling you not to worry because all freshmen struggle and they are all used to getting 90's and now they are with an class that is entirely made up of gifted students and they can't all expect to be the ones excelling? DS has been so full of OCD that he can't sit down to study until he has done all kinds of rituals, many of which I don't even know about. He can't concentrate in class, can't remember things I just reviewed with him...We have a 504 and have alerted guidance to the problem (bless them for being 100% there for us!) HDIVIG number 2 tomorrow. DS has tested gifted on a number of occasions while trying to make sense of the symptoms and get accomodations. It is absolutely true that it depends on whether he is waxing or not. His short term memory, processing time, math skills, handwriting (and also organization, meaning his ability to make a chart that actually tracks across the page,etc.)have all taken hits on these tests when he is waxing. None of the tests have been of much practical use, although I did refer to them a few times when talking to the teachers.

The museum of science and industry is a really good bet.

Now that is interesting. The day I started OLE DS told me all about the same symptoms you just described Fixit. In even more vivid 14 year ols detail too. It lasted a few days, then cleared up. Olive leaf extract is generally believed to interfere with the operation of abx, so it is best not to give it when you are on abx. It also really ramps up yeast for us.

Hi Stephanie I haven't tried Candida Clear out of the capsule. It smells like oregano (don't know if that is helpful!) My understanding is that Candidase is similar to No Phenol in that they are both Enzymes. I have heard, but not confirmed, that if you take No Phenol on an empty stomach, it works on yeast. I can't use it becausse it makes DS hyper and angry, and we already have enough of that around here! Also, (for any who have not used them before)with any of the enzyme products, it is important to start really low (I started with 1/4 cap) and increase slowly. Previously, OLE had done pretty well for DS(14) in clearing up and keeping him free of infection. He went downhill last spring and I put him on a series of different abx, followed by IVIG. Haven't had any major improvements from abx or IVIG yet (week 7 today) and DS just had some sort of exacerbation while on Omnicef full dose. I got rid of Omnicef and started OLE 1000 mg 3x day and the yeast protocal below. He had some intense die-off the last few days but seems to be coming off that (likely yeast since it was really intense yeasty behavior). The sore throat is gone. I'll let you know!

"And Lynn2, I am totally unfamiliear with "yeasty" issues. What would that look like?" I posted this elsewhere today, but basically I consider yeast issues to be brain fog, giddiness, OCD with a focus on annoying rather than hurting, and swollen stomach.

Did you try Candida Clear? It is a NOW vitamin that has oil of oregano, capryllic acid, and a few other herbs. Although it is supposed to be for yeast, I find that it doesn't completely fix the set of symptoms that I describe as "yeast" (brain fog, spacy, silly, stomach sticks out like Biafra baby, OCD is to be annoying) but if I leave it out I get an increase in the "bacteria" set of symptoms (ragey, OCD is to hurt, arguing about anything.) For yeast, the only thing that works for me is grapefruit seed extract, combined with Candidase enzymes (by Enzymedica.) My routine for "yeast" goes like this: on an empty stomach (2 hours after eating, already a problem because I have an adolescent)take Candidase. 1/2 hour later take grapefruit seed extract, candida clear and olive leaf extract. Do that twice a day for 3 days (if I give other supplements or more olive leaf extract, I keep those on my usual supplement scedule which may or may not conincide with the 2 yeast treatments.) I add in charcoal 2 hours later if the yeast was really bad. I try to cycle back off the grapefruit seed extract for several days a week, but it is hard right now because the olive leaf extract keeps generating more yeast. I keep the candida clear pretty constant right now. For bacteria, the candida clear plus olive leaf extract seem to work OK. I tried biocidin a few years back, but it didn't seem to work well for DS. I know it helps a lot of people tthough. I put yeast and bacteria in quotes because I've never had them tested so I'm not sure exactly what I am treating. I feel like one of the pioneer midwives, if the herb works (and doesn't cause other problems) then it must be the cure for the problem!

I'm not expert on whether to kill the bugs or not, but I just wanted to point out that if you have a "yeasty" kid, steroids can really cause a bloom of yeast--and you probably know the symptoms already. That could thoroughly disguise any gains from the steroids.

Just want to mention, Emerson, that while your posts often make me cry, I never don't want to read them. You are a window into DS's brain that he can't open to me. He said yesterday that my attempts to help him with ERP were totally wrong, because I only see the outside of the OCD like I was trying to scale a mountain and could see the outside of it. But he lives in the valley inside the mountain and I will never get there or understand. Thank you for helping us. Lynn

We did neurofeedback with DS14 not once but twice. The first was relatively unsophisticated and basically decreased his ability to concentrate while trying to increase his ability to relax. It took a long time to get past that. The second was based on brain mapping and pinpointed an area deep in the brain on the right side. This improved concentration somewhat but increased tics. The main problem I have with neurofeedback is that they are messing around in the brain with no real understanding of what they are doing, and they can in fact accomplish something that is harmful. The story is that NF is "non toxic" and non intrusive, but that is not actually true when you are dealing with a more complicated thing than a little ADHD. NF is quite a powerful tool and no one knows exactly how to use it--a dangerous combination when they are playing around with your child.