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lfran

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Posts posted by lfran

  1. Airial --

     

    Tried to send you a PM, but it said your box was full.

     

    Dr. M is great for getting a diagnosis, but her treatment plans are very conservative. She is primarily a researcher, and has published boatloads on PANDAS. She's currently involved in a couple of abx trials for treating PANDAS. As such, she has to be careful how she treats patients. For example, my son is classic strep trigger PANDAS. He responded well to abx, but we could never get to 100% b/c he was constantly getting re-infected. She thought IVIG might help him, but b/c he presented with NO immune deficiencies (healthy as a horse...on paper), she was reluctant to order it b/c it isn't in line with her research. I understand that might jeapordize her funding. But she has several fellows on staff, most are pretty good, and they are pretty responsive to emails. She is local for us, so she was our obvious first choice, and she also took our insurance. We see doctors over at Rothman for CBT therapy - and have had great success with that too, and the therapists we work with all understand PANDAS from working with Dr. M.

     

    We also see Dr. B, he did Lyme testing through Igenix multiple times for us (all negative) and we recently did IVIG with my son up there with great sucess. We found that when we flew up for our first appointment, he was running a bit late (about a half hour or so), but when he saw us he was very thorough and took his time with us. The follow ups have all been via phone, and are not covered by ins. Those, I feel, are more rushed, and I'm often reminding him of specifics of my son's case, which I'm not a fan of. The last phone consult, however, we did with the PA. She was wonderful, I didn't feel rushed, and I felt like she was prepared and had read my sons file prior to the call.

     

    We are fortunate to have an amazing pediatrician who is very PANDAS friendly and gets us in for strep checks and gives us abx as needed to manage flares/symptoms. He was just not comfortable pursuing IVIG for us. But now that he has seen how my son responded to it, and has copies of the medical records, we may do IVIG locally in the future - for now, we are doing it up at Dr. B's - he also got it covered through our insurance, which helps offset the travel for us.

  2. Ophelia --

     

    I know that you have listed a number of medical conditions, including CFS, which is probably causing your fatigue.

     

    However, I want to say that I had horrible insomnia and horrible horrible fatigue that turned out to be my ONLY symptoms of hypothyroidism. I did not have any of the other symptoms. Very shortly after treating my hypothyroidism, I felt totally different.

     

    If you haven't been tested for thyroid issues, I strongly urge you to do so. I have also just recently learned that being hypothyroid can itself cause symptoms of OCD.

     

    Most doctors will want to order just a TSH test (thyroid stimulating hormone). This is a good place to start, and any value over 2.5 (or even 2.2) is considered by the experts to be signs of hypothyroid -- and the higher the TSH, the more hypothyroid you are. Please note that the ranges the labs report say that anything under about 4.5 is considered "normal", but many (even mainstream) experts disagree with this and use the 2.2 or 2.5 range for their own patients.

     

    If the TSH is within normal limits, then you can also ask for free T3, free T4 and reverse T3. If these are abnormal, or are at the "wrong" end of the normal ranges, that can also be a signal of hypothyroidism. Please note that even if the values are in the normal range, if the free T4 is in the higher end of normal while the free T3 is in the lower end of normal, this can also signal hypothyroidism as it means the body isn't converting the hormones the way that they should.

     

    Insurance should pay for these tests, and Dr. T has been willing to order them in the past. The results come back within a few days.

     

    If you go this route and want info on interpreting your results, there is a good website called stopthethyroidmadness.com. It has a calculator where you can enter your different values to see what they mean. Just be aware that the different tests are often reported in different units of measurement and you have to select the correct one for each -- the webpage will make these available, but you have to be aware.

     

    I know it may seem unlikely that this may be behind your issues, but it is a simple test and pretty easy to treat. It was life changing for me. I hope it may be for you, as well.

  3. Do you think that may be why so many of us report increased tics with Vitamin D supplementation?

    I got DDs 23andMe results today (posted previously about DS results last week). I have always scratched my head about why NAC (n-acetylcysteine) made my DD flip out when it seems like it should be so good. Turns out DD has several mutations in her CBS gene, giving her trouble handling sulfurs. I never thought she'd be positive for this since she's taken bactrim for months on end without issue and bactrim is a sulfur abx. But NAC. MSM, alpha lipoic acid, glutathione supps and epsom salt baths are all bad for her based on her CBS mutations. (she gets very itchy and irritated with epsom salt baths).

     

    So puzzle solved. Her full report, using this site as my guide http://www.heartfixer.com/AMRI-Nutrigenomics.htm, has explained so much. Some supps will pass her lips no more, some will be started (much to her chagrin).

     

    Also, one thing I discovered thru one of my kids is that if you have an MAO A mutation and/or COMT mutations, you do not break down dopamine (MAO A) or serotonin (COMT) as fast as those without mutations. As a slow metabolizer, you end up with excess dopamine (if MAO A) and if you take an SSRI for anxiety (with COMT), it will "activate" you because you're adding more serotonin into the system and you already have more than you can break down. Instead, you need to support these mutations and help re-balance the system. Wouldn't be surprised to find Pandas kids have MAO A and/or COMT mutations. COMT is also influenced by your VDR Taq gene status - which makes dopamine from Vitamin D.

     

    Two puzzles solved today.

  4. If your DS is really struggling, you may want to ask if they can make him progressive lenses. This is where they blend the bifocal aspect so there is no line. It feels seamless. There are different brands of lenses. I have an odd eye condition, and when I got my first progressives I asked the doctor if there was a best quality lens. He said "Veralux". It has the widest area in the middle (I think). There are probably others by now.

     

    Anyway, I got the Veralux and LOVE my progressives. (DH on the other hand, hated his).

     

    Most places will give you 30 days to try them and then will remake them as regular bifocals if you can't adapt. But I recommend trying with the best quality lens you can afford, to give it the best change to work.

     

     

    I would not get any glasses until after your CI appt. My DD who wears glasses for an astigmatism ended up with a different script and bifocals - the bottom half, which is for reading, is a special prism lens that corrects for CI. So she does not switch glasses. The top part of the lens is for distance (non-CI), the bottom part for close up work (corrected for her CI issues).

     

    My DS does not need "regular" glasses and his bifocal has the top part regular glass (not correcting for anything) and the bottom portion is a prism lens for CI. This keeps him from having to put his glasses on and off thru the school day (which leads to a lot of scratches on the lens). Unfortunately, he does put them on and off a lot b/c he struggles to get used to the bifocal aspect and since he doesn't need them for things like recess, gym, etc, he takes them off a lot (and they are way more scratched than DDs for this reason).

     

    The special lenses were not covered by our vision insurance but the frames were. So given the expenses of this whole thing, I wouldn't bother with regular glasses until after you know what the CI optometrist recommends.

  5. My ENT turns out to be very interested in PANDAS. I remember someone posting a few months ago about a really good ENT (in Philadelphia?) who has a good PANDAS protocol.

     

    Can you PM the contact info for any ENT who really understands PANDAS, anywhere in the country? I'd like to give that contact info to my ENT. Maybe they can talk doctor-to-doctor. I'd love for my doctor to know more, and to be aware of the protocols that work, especially for tonsillectomies.

     

    Thanks!

  6. Well, no B vitamins given at bedtime.

    Only give 1mg melatonin when we give it and when we do give it, it works in about 15-20 min. regardless of if it's 8pm or 10:30pm when we're desperate after 2 hrs of tossing/turning. She just doesn't wake well rested when we use it.

     

    She sometimes gets tryptophan in the a.m. when she's had a few moody days in a row - to help with anxiety induced by a teacher who doesn't "get her". Tryptophan turns to serotonin before it turns to melatonin, so it helps with anxiety and she's never gotten sleepy from it. I've tried a few times to give it an hour before bed with no effect.

     

    She's taken probiotics at bedtime for 2+ yrs and the sleep problem is only for the past few months, so I don't think that's it.

    She only pulses abx every other day and she was treated for lyme or chronic infection for a year in 2011 - that ended over a year ago and her C3d levels are now normal, her GI issues are resolved. So no signs of infection playing a role.

     

    We did test for metals and mercury was in normal range as were all other metals. Slight elevation in lead (like 6 where below 5 is normal) and she took EDTA + artimisinin for 6 weeks right after that for EBV, so I doubt it's a metals thing. She also takes milk thistle and liver levels are tested every 4 months - always normal. She also takes garlic for anti-yeast and anti-films. No yeast issues since March '12 when we started garlic (yeast was common before that). Parasite testing has come back negative.

     

    It doesn't seem to be anxiety - the insomnia occurs even with a parent next to her, with a night light. She just says she cannot get comfortable.

     

    Mama2alex - we did not test MSH on my DD - did that for DS. So I suppose I could ask about that. The problem is that the nearest labcorp is an hr away. And her allergies, which were causing a chronic dry cough, have greatly improved since we bought mattress and pillowcase allergy covers and got vigilant about keeping her room well vacuumed/dust free. We've replaced carpets with wood flooring, emptied the basement of all organic materials, take apart/clean the washing machine drum for mold every 6 mos., fumigate the bathroom and her bedroom with thieves oil...so it could be mold but if it is, I'm stumped on what more I can do. She's been in the same school for 3 yrs - no carpets. Has the sleep problem even on school vacations.

     

    The thyroid is one for my radar. Her TSH has come back ever so slightly elevated (like 5.2 when 5 is the cutoff for normal). But not enough to do more than monitor, per the LLMD.

    I do appreciate all the thoughts. If I ever figure it out, I'll let you all know!

     

     

    Aaagh!!! I feel MISERABLE at 5.2 as do most people who are hypothyroid. It may be different for kids but the endocrinologists basically want their patients to be 2.0 or less. The ranges are generally considered WRONG by the endocrinologists as well as by the naturopaths.

     

    again, kids may be different but put thyroid at the very top of your list. It definitely causes sleep and other issues. Treating myself for that was a total game changer. You can me if you want.

  7. One thing I have done to reduce the number is to buy large empty capsules and then combine smaller ones into it. Either insert the whole smaller capsules or empty the contents. They're all being swallowed at the same time anyway and this way it helps to combat exactly what you're talking about, which concerns me too.

  8. When I am hypothyroid, I always have trouble with insomnia. For me, though, I can fall asleep instantly but can never get back to sleep if I awaken in the middle of the night. Only when hypothyroid, though. When my levels are good, I can fall right back asleep.

     

    I have heard that b vitamins close to bedtime can make you restless.

    For the past few months - maybe since the fall - DD8 has been struggling to fall asleep. Once she's asleep, she sleeps thru the night. But the getting to sleep is a real struggle. Sometimes she will toss and turn, sometimes she'll lay quietly - but sleep won't come. Even with a parent next to her, even when anxiety isn't an issue, even when she's complained of being tired, she just can't fall asleep. It often takes 90 min - 2 hrs, so she isn't asleep until 10:30 or even close to 11pm. Any thoughts on what can cause this?

     

    I'm not asking for supplement ideas. Melatonin will (sometimes) help her fall asleep. But then she doesn't wake feeling as rested as when she falls asleep of her own accord. I'm that way too. Melatonin will get me to sleep but I have weird dreams and don't wake feeling like I slept soundly. So sleep aids like melatonin or valerian root aren't what I'm looking for. I'm looking for what might be causing the problem. Prior to this, it never took her more than 10-20 minutes to fall asleep.

     

    We supplement with Vit D and her last test showed her level at 66 (january). I know that sometimes, a lack of D or too much D can interfere with sleep. So I stopped supplementing for a week and no change. In addition to the insomnia, she often complains of fatigue and pain (she's been treated for lyme, her C3d level is now normal for the first time in 2 yrs, so I don't think it's an infection behind this). So I started CoQ10 about 6 weeks ago in the morning and her complaints of fatigue went away - until yesterday. But the insomnia was going on months before the CoQ10, so I don't think that's it. She's had cold sores, so I've been giving her 500mg of l-lysine every morning for 10 days. But again, insomnia has been going on for months.

     

    Has anyone found that a particular supplement or food or anything - has caused trouble falling asleep? (Have also tried an earlier bedtime - no luck). Ideas?

  9. Thanks for heads up.

     

    Anyone else have a suggestion?

     

    Dr. Rahman is great!!!!! (and I am picky!)

     

     

    But, just a suggestion...maybe mention that you do not want your child to have an intern/practicing therapist....we had this a few times a week....one would sit in the session to listen/learn....which I think is great and needed.....then afterwards my daughter would get an extra session right after with the intern.....it could actually be a really great experience....ours was VERY nice....but, I think that the session was better ended on Dr. Rahman's note and not revisiting the same session just for practice.

     

    Pros and cons to the situation....and not sure if you have a choice...they didn't really ask us, but I probably could had said no????

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