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Everything posted by monarchcat

  1. I can tell you are right - it's not a black or white thing. So very, very complex. Funny you mention the calcium as I didn't really like the idea of it but had read that it was important to reduce histamine. But, since I don't really yet know what is exactly wrong in the methylation cycle I may take your advice and stop for now, especially since DS hates the large cal/mag/zinc pills. Prior to this I had been giving him Natural Calm, so maybe we'll continue to do that and add zinc in the morning. I like what the Sam-e and inositol have been doing for him so I think we are on the right track. At some point if we continue on this track I might switch him to methionine rather than sam-e but the sam-e acts quicker and quick was what we needed at the time! I *think* we are alright on the yeast front, but who knows? He takes sacc. b with his abx and usually a 30cfu probiotic combo a few times a week in between abx doses (when we remember!) Another interesting note is that at the PANDAS/PANS conference a couple drs metioned the importance of vitamin D levels being ABOVE 50 (not 30 which is what most labs report as "normal"). I looked back and his D level has been in the 30s both times it was tested (various points over the years). I'm wondering if the lack of sun the last month or so might explain some of the increases in behavior/symptoms as well. So, that's another thing we've started - 2000iu vitamin D a day. Thanks very much for your input - very appreciated!
  2. I have given inositol in the past and didn't really notice any difference, but that was when the PANDAS sh*t was really hitting the fan, so it was probably not enough to matter. We are trying it again now, along with Sam-e, and a magnesium/calcium/zinc supplement because I think we are dealing with undermethylation/MTHFR issues in addition to PANDAS/PANS. So far (2 weeks in) the combo has been working pretty well to bring depression/OCD to manageable levels. I feel like there are still pieces to the puzzle missing and I'm hoping that more will be clear when we get 23andme data back. So, I think inositol can definitely help, but depending on the underlying cause of what you're trying to affect, it may not be the total answer.
  3. I've finally jumped on the MTHFR/Methylation train after avoiding it for a long time! I think it might be a key componant for ds(12). He undeniably PANDAS and has been on ABX for 4 1/2 year and we did 3 IVIG treatments several years ago with great success. Recently however we are dealing more with OCD and depression, and it "feels" different than past PANDAS episodes. At the moment he definitely has orthoexia (obsession with healthy eating) and is obsessed with what he eats, how much he eats, getting enough exercise (he's become a runner), etc. He's also overly concerned with using resources like electricity, water, etc. And he HAS to be a straight A/A+ student - anything less is just not acceptable to him. We have sent away his 23andme kit but won't see results for a couple months. In all my reading I am CONVINCED he is an undermethylator. My husband's whole side of the family seem to be undermethylators, but mostly with the "good" effects - overacheiving, smart, highly motivated, etc. My son has all that plus the negative effects of undermethylation. Past labs show relatively elevated homocystein, high serum b12, high serum folate, low seratonin, low vitamin C. A few weeks ago he really seemed to tank - very depressed, very OCD, etc so we decided to try inositol and Sam-E. They seemed to help quite a bit within a few days (started with 750mg inositol and 200mg sam-e). We also added a calcium/magnesium/zinc supplement (he had already been taking magnesium off and on).He did great for a couple weeks, but now seems to have declined again over the last couple days. I've upped the sam-e to 400mg/day in 2 doses, but won't go any higher than that. The inositol is about 1.8g/day at this point, also divided into 2 doses. He's also on minocycline for PANDAS. Gee, after all that I'm not even sure what my question is lol. I guess just looking for any input. Do you think I'm on the right track (can't WAIT to get the 23andme data-they better not shut the lab down)? Is there anything else I should add/take away in regard to the supplements? I really don't like supplementing blindly, and I've never been one to just "try" a lot of different things, so this all makes me nervous. I am quite convinvced of undermethylation issues, though, but not sure of what other mutations we might be dealing with...
  4. Thanks for the info! We are not seeing an LLMD currently. We have seen Dr. B (and did IVIG w/ him 2 years ago w/ great success) but no longer have insurance that covers him. Our current pediatrician is learning about PANDAS and is very willing to work with us (also a Lyme believer). I know that's not an adequate substitution for a true LLMD but it may be all we can manage at the moment due to insurance/employment woes.
  5. DS12 has been on a few different abx since his PANDAS diagnosis 4 years ago (augmentin, azith, and now biaxin). A year ago we did blood work and found he had high Myco P titers (I don't know the exact numbers). At that point we switched from azith to biaxin (for other reasons as well - the azith just didn't seem to be working as well anymore). We just repeated blood work and his myco P numbers are still elevated (IgG >5 and IgM 1247). I am wondering about asking my doctor about minocycline since I've seen it mentioned that it can show good results with PANDAS and myco P in particular. My specific questions are - Should it be "regular" minocycline or minocycline ER (extended release) If you've used it- what dose was prescribed (and what is the weight of your child). My son is about 100 lbs. Any other experiences with it would be helpful!
  6. Haven't been here in a while because I needed the mental break from constantly researching/reading about PANDAS. Nutshell background: DS (10) has had PANDAS since age 5, diagnosed at 8 and on 500mg/day azith for the past year and a half. 3 IVIGs with Dr. B last year and currently doing relatively well. DD (5) diagnosed at age 3 1/2 with PANDAS after sudden onset OCD after a strep infection (we totally knew what to look for with her). She was on 100mg/day azith for a year and came off last June. Her OCD symptoms cleared very quickly after starting abx and after a year of prophylaxis, Dr. B felt we could try taking her off. She did GREAT, but is now showing PANDAS symptoms again. A few things have been bugging me over the past few weeks, but as of tonight I'm sure we are back in OCD land. I will get in touch with Dr. B when they are in the office next week, but in the meantime I want to start her on some azith I have from when she was on it before. My question is how much would you start with if you were in my shoes? She's 5, but very tall and weighs 75 lbs. I want to kick this in the ###### quickly. I had her throat swabbed and titers tested about a week ago and both ASO and Anti-DNAs B and both were negative, so it could be strep, but it could also be myco or something else. I think she was on 200mg/day to start with when she was diagnosed but she obviously weighed less then as it was a year as it was almost 2 years ago. I am soooo upset that we seem to be back in PANDAS land again with her, but have always known it was pretty much just a matter of time. *sigh* One of the reasons I want to get going quickly is that I am realizing that since yesterday she doesn't want to eat food at home. This was not one of her symptoms before (though germ fears and contamination fears from things falling on the floor was). She didn't want breakfast at home today (very unusual) and then ate a hearty lunch when we were out. We were home by 3:30pm and she didn't eat a thing after. Drank some of my drink, but didn't really want her own. Refused dinner and all snacks. You have to know my daughter to realize that this is HIGHLY abnormal.. the girl loves to eat. No tummy ache, etc. There are several other worrisome things as well. Thanks... Suzanne
  7. How strange! It reminds me of how some PANDAS kids are when they are actively sick with a fever. I know when my son would get sick (especially strep) his PANDAS symptoms would disappear for a day or so, while he had a fever. Tics, behaviors, etc... all gone for those brief few days. Perhaps the dip in body temperature from the pool caused the same reaction, albeit briefly? Maybe it has something to do with the immune system being "called" to react to the new extreme situation and it stops the autoimmune reaction in the brain for a brief time.... I have no idea, but it's certainly an interesting phenomenon!
  8. Amy, I am also in MA (north shore) and agree with what Nancy said... go see Dr. Bouboulis. We tried Childrens and got confirmation of the diagnosis and an RX for low-dose Pen VK. Yes, it was antibiotics, but it wasn't nearly aggressive enough, and we got a speech about how we needed to track titers for a year and if they didn't rise/fall with symptoms then it wasn't PANDAS. My son's titers NEVER rise. Period. After that we went to Dr. B and have been been on appropriate treatment since.
  9. We are in MA (North Shore) and also travel to CT to see Dr. B. We saw the so-called "PANDAS expert" at Children's in Boston and it was useless. We have our pediatrician locally for regular stuff, but see Dr. B for PANDAS stuff. We traveled there for an initial appointment, paid for a phone consultation follow-up and then traveled there for 3 IVIG treatments. Feel free to PM me if you have any questions or need any more info.
  10. I had my children's liver function tested about a month ago. My son had been on abx for about 2 years and my daughter for about a year. They were both normal. I believe it was just called an "LFT" Liver Function Test.
  11. Thank you for the reply! That link is GREAT... I wonder why they don't include that in the test results? What they do give is more general. I am trying to get him to start taking Kirkman's Spectrum Complete vitamins... they have magnesium and calcium, which I know could help the tics. I also want to get him on a b complex supplement as well as vitamin C. I wrote "high" 5-HIAA but actually it was low. It isn't marked "L" but his value was 0.81 with a the reference range being less than/equal to 11... so that seems pretty low. Not enough serotonin? I do give probiotics, but I am going to start giving more. *edit... let's see.. the 5-HIAA level seemed low, but the Quinolinic/5-HIAA ratio was high.... not at all sure what that means.
  12. So... I got my son's OAT results from Great Plains Lab. Most thingslook ok, even the yeast section is mostly normal except for high Arabinose. WHAT THE HECK IS ARABINOSE?? LOL Most of the stuff he had a high or low marker for I have no idea what they are... High Arabinose in the Yeast and Fungal Markers category High 4-Hydroxybutyric in the Ketone and Fatty Acid Oxidation category Low Vitamin C (at least I know what that one is!) Low Vitamin B6 High 2-Hydroxyhippuric in the Indicators of Detoxification category high Phosphoric in the Bone Metabolites category High Pyruvic in the Glycolytic Cycle Metabolites category High Quinolinic/5-HIAA ratio in the Neurotransmitter Metabolites category Anyone have any idea what this all means? Some other things he appeared to be low on but they weren't marked low so I guess they were in range. Heeelllpppp! Suzanne
  13. Cigna covered our IVIGs based on a diagnosis of immune deficiency. They clearly state that they do not cover for PANDAS because it is "experimental."
  14. I really want to get to the bottom of whether we have a yeast problem and I'm thinking about doing the Great Plains OAT test that I see mentioned frequently. It needs a doctor's signature, so I will have to get my ped on board no matter what. So... is there any testing that he can do to check for yeast instead of spending the money for Great Plains? Is Great Plains better? Can a regular doctor order an "OAT" test? What other tests check for yeast? I Just want to be informed before I call... thanks!!
  15. DS (10) has had three IVIGs (3rd one finished about 2 weeks ago). He is soo much better in many ways, especially the major irritability, moods, etc. Not gone completely, but much better. The issue now is that if he spends more than 5 minutes with me, he starts acting completely whacky. Hyper, silly, blurting out weird words, sounds, especially potty words ("POOP!!"), can't focus, can't listen, inappropriate laughing, etc. So I am thinking, hmm.. maybe yeast? But WHY ONLY WITH ME?? Could it be a yeast problem if he only shows these behaviors with me? He truly can't stop until I or his father gets SO upset (despite our best intentions) that he tips to the other side and goes into PANDAS-y irritability and irrationality. All of a sudden he's all, "Why do you hate me? I didn't do ANYTHING!! You're so mean! I wasn't doing anything wrong!" He's ALWAYS exhibited this kind of irrational response. He never thinks he's done a thing wrong no matter how bad his behavior. He just can't see it. I know that to be PANDAS, I guess. I have ALWAYS gotten the brunt of the PANDAS behavior and now I am on the receiving end of this crazy, hyper behavior. What is this?? Could he direct it that way if it was being caused by yeast? Or is this just another oh-so-fun PANDAS stage? I thought the IVIGs were working... not so sure now.
  16. Thanks, guys, this is all good info. She was negative on the rapid (no real surprise there) and despite my saying, "I would like a real "old-fashioined" 72 hour culture... you know where they actually grow it in a dish?" I think the nurse still just did the 24 hour DNA thing. If that's positive I'll ask for omnicef, at least 10 days, good strength, 2x a day dosing. If it's negative, I think I'll just watch and wait... it COULD be just normal 4 year old behavior. It's definitely not the clear-cut, obvious OCD we saw last year. Or, of course, it could be negative because she's on abx. It's funny, we were thinking she would be coming off the prophylaxis soon (per Dr. ... now I'm not so sure.
  17. My four year old daughter was diagnosed last year at this time with PANDAS after having strep that didn't clear. She developed obvious OCD, which stopped after 4 weeks of treatment strength azithromycin. She's now been on 100mg/day of azithromycin as a prophylactic since then. She has been exhibiting some behaviors over the past couple weeks that are starting to worry me. No overt OCD, but some mood issues, rigidity, etc. She IS four, so some of that is to be expected, but I'm still nervous. I'm going to take her in for a throat swab tomorrow. Let's just say it's positive... what should I ask to put her on? Higher dose of azith? Could be a resistant strain, though. Augmentin? Omnicef? My ped will probably give me what I ask for, but what should that be?? Help! Thanks!
  18. Sounds like we will just miss you! We will be at the infusion center Monday and Tuesday... checking out of the Doubletree on Tues. Anyone else?
  19. The first time we had treatment on Monday and Tuesday and I kept him home wednesday and thursday as well. He seemed to feel good so I sent him to school on Friday. He came off the bus friday afternoon and vomited every hour for the next 6 hours. The second treatment I kept him home the whole week. He ended up having a headache all of that Saturday, but no vomiting.
  20. Here's what our experience was like. Dr. B usually wants the child on prednisone 2 days before, the 2 days during treatment, and 2 days following treatment. He also usually wants the child on motrin and benedryl every six hours during the treatment days and the day or so after. When you arrive at the infusion center you'll be put into one of the little treatment rooms. There are maybe six little rooms all off the main room where the nurses' desk is. In our experience all the rooms are filled most days. After arrival they will give motrin and benedryl and put in the IV and get your child settled in their room. Each room has a comfy recliner for the child and a guest chair or two for parents. There is a TV in each room but we found the stations kind of lacking for kids. They also have a few portable DVD players if you want to bring some DVDs. The second time we went we actually brought a full size DVD player and hooked it up through the HDMI slot on the back of the TV. They start the drip fairly slowly and then increase the rate every so often as long as there are no side effects. Our treatments took about 4-5 hours per day (total of 75g). At the end of the first treatment you usually have the choice to leave the iv needle in over night (they wrap it up) or remove it and then get restuck the next day. If your child wants to bath/shower or swim you would need to have it removed. The first time my son chose to leave it in, but it irritated him a bit to have it there . The next time he chose to have it removed so that he could swim at the hotel. Expect your child to be pretty drowsy and worn out during and after the treatment.. they are taking a pretty whopping dose of benedryl every six hours. My son got a headache the morning following the first day, but it went away with a morning dose of advil. The second treatment he didn't get a headache or any other side effects during the treatment. Dr. B usually does "rounds" around lunchtime (maybe 1-2pm). The first time he came into the infusion center to talk to parents, but the second time, they seemed to have a new system whereby they took parents into the office area exam rooms to meet for a quick visit to discuss whatever issues needed to be addressed. In our case it was a quick update on progress, new prescriptions for abx, and a lab slip for followup labs. HYDRATE!!! Lots and lots and lots of fluids the week or so before the treatment (especially the few days before... really push the water). Encourage your son to drink a lot during the treatment and then for a week or so after the treatment. They will give IV fluids along with the IVIG, but you need to push the drinking as well, especially that night... it will help stave off the headache/nausea. I made sure to keep up with the probiotics during the days that my son was on the prednisone/advil, etc... it seemed like a lot on his stomach so I wanted to put as much "protection" in there as I could as well. Make sure to to the prednisone AFTER a meal to help avoid stomach upset, and food w/ the motrin as well. My son had a good appetite and ate normal food throughout the treatment. In our case, he had some headache and vomiting 3 days after the first treatment (lasted about 6 hours then went away). The second treatment he had a heachache that lasted 24 hours starting four days after the treatment. There is a little kitchen at the office with a water cooler, microwave, coffee, etc. There are restaurants around that you can go get lunch at and bring it back to the office, or if you don't want to leave your child, the nurses have menus from places that deliver. Bring snacks, drinks, books, cards, etc for your son, but don't forget to bring a book or something for yourself as well. There is internet access. I found the cell phone reception not great in the office (I have sprint), but could walk outside and it was fine. There are two nurses there, Judy and Louise. Both are wonderful in our experience. Hope this helps... it's the kind of stuff I wanted to know before we went as well!
  21. We did 2000mg/day of Augmentin XR from August to June of last year. My son kept getting sick on it every 4-6 weeks with a very suspicious "strep-like" illness: fever, nausea, sore throat and headache. He would culture negative but we'd switch him to azith for a bit and he would get better. We finally saw Dr. B last June and he's been on 500mg/day of azith since then and hasn't gotten sick once. He started IVIG in December and has been super health since then, but even from June through December we had no streppy-like symptoms. I'm not sure why he kept getting what I believe was strep on the augmentin and I know it has been a great choice for many kids. We are still on 500mg/day of azith and I'm hoping to be able to reduce that a bit soon... maybe after his third IVIG in April. I'm scared to lower it, but it seems like such a high dose for long-term....
  22. I think it's a symptom, too. My son is now 10 and when he is "PANDAS mode" as well call it, he can very very obsessive with xbox, but he is cranky and mean while playing it (to us and to his online friends). And trying to get him off it is a recipe for a huge blowup. Interestingly, since his 2nd IVIG in February he has been wanting to play xbox less and less. I don't think he's been on it for a week at this point. He's been hanging out more with the family and actually *gasp* reading for enjoyment.
  23. I haven't looked at the study, but I will chime in with our recent experience. I've heard anecdotally that tics respond better to PEX than IVIG. My son presents mostly with tics and mood issues and we've had two IVIGs since December (1.5g/kg over two days each time). The tics persist and I've seen no improvement there, though we've had gains in other areas (mood, behavior, etc). I have just switched him to Kirkman Labs Spectrum Complete multi-vitamin in hopes that the higher magnesium, etc. will help with the tics. I am curious about this: "I understand that the Yale-Swedo study is excluding kids with primarily tics as there have been negative outcomes from IVIG and tics." Do you mean "negative outcomes" as in IVIG can make tics worse? Or just that tics don't respond to IVIG....?
  24. It was great! Thanks for organizing Kara (and Barbara)! Definitely nice to sit in a room with others who "get it"! :-)
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