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DsMom

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Everything posted by DsMom

  1. My DS is now 17 and applying to colleges, never thought we'd see that day. Like BOBH mentioned my DS reacted to Vit D and O3's like we had given him LSD. Super scary. But he was a paradoxical reactor as so many PANS kids are. He also was super sensi to Probiotics but I vetted the ones he took like no-tomorrow and keep copious notes on how he reacted to everything. He's the full meal deal - PANDAS Plus who never stopped flaring once he started for almost 4 years, missed almost 4 full years of any type of school he was so impacted, and was also diagnosed with Lyme and POTS. I think he was
  2. I hadn't heard of the Carnitine connection either but DS reacted w/ in 15-20 min w/ a flare in all symptoms when he was took it. Once I connected dots we discontinued ASAP, but I was giving him a high dose of O3's not just Fish Oil. Even chia, flax and other O3 sources were disaster for him. I believe that since it crossed the BBB it was impacting his already sky high dopamine level. He also reacted really negatively to Vit D. Basically the same reactions as I saw w/ O3's. When he was really really ill his Carnitine was tested and the supplements to improve it made him crazier and gave him
  3. My DS15 was 11 when PANDAS crashed in on him, was 12.5 when POTS joined the party. His was diagnosed when he was at MAYO and reconfirmed by local Neuro here in WA. It was really bad for him for about 2 years, but sloooowly he's seen lessoning of the symptoms, but blood pressure still really off between lying and standing. It's something that is associated w/ rapid growth (he's 6'5" at 15 yrs so he's always been on exponential growth pattern) and long term infections (Strep and Lyme for him). Can take years to lesson symptoms unfortunately. Lots of (awful) sports drinks, excercise, and add
  4. I replied to your LLMD in Seattle post, but I did want to comment that my DS has had primarily Neuro symptoms exclusively until he began Lyme/ co-infection treatments...
  5. My DS15 was hit by PANDAS in Dec 2011, he's seen every specialist at Sea Children Hospital to no avail, but was so lucky to work with a local Redmond Ped who specialized in PANDAS (now retired) who helped him greatly, he's been treated by Klinghardt himself, plus one of his cohorts (not great for us). DS has had Dr. T on his team, received Pheresis from Dr. L at Georgetown U. He now sees a Sea naturopath almost exclusively, who is treating him for Lyme ( he had a bullseye rash after a bite 3 months prior crash) and she's very invested. If you are interested in her PM me and I'll share
  6. When my DS was at his most ill with PANDAS Vit D would exacerbate all do his symptoms; tics, anger, OCD, paranoia, sensation of itching. He's been off Vit D supplements ever since I connected the dots...I still pay attention to the amount in the foods he eats and try to minimize the amount he gets in one sitting. omega 3's also did a never on him.
  7. DS15 reacted horribly to steroids, and wanted nothing to do w/ pheresis but we forced him to in 2013. It put him into a tailspin, exacerbated everything for about 7 weeks then super little positive footsteps forward began to occur. It was a game changer for us, plus he began a valid Lyme treatment. Good luck with your decision, take care, ET
  8. As always my people (you all) come through for me! Thank you for the info, I hadn't thought to re-visit the Cunningham website, I was using the debrief that comes w/ the test results, duh, I should look at the website for more detail! 4Nikki THANK YOU for the link, I am going to pore over that as well pre-Neuro visit, which is tomorrow, so I can assail him w/ questions as usual. If anything of note is discussed at the appointment I will post, just in case there are others like me that would appreciate more in depth understanding.
  9. Maybe popsicles or smoothies/milkshakes? with juice and/or aloe in it, or that pediasure stuff, not sure how that tastes so maybe it's gross, but I'm just trying to brain storm for you. And I think you speak for many, many of us re/ addiction to the board. It certainly helped me keep my sanity when the thread was ready to snap, and that's a fact. If I think of anything else I'll ping you...
  10. I've not been on the forum for a while but when I need help this is where I turn. I am wondering if anyone knows what this might indicate: DS15 came down w/ PANDAS in 2011, has been throught the ringer and is doing better than he's ever done, but he's not all better by a long shot, so I thought I would have the Cunningham Panel done again to see what it's showing ... So literally 2 years to the day we have the new test results...and I have to say I'm at a loss because it's not exactly what I was expecting (now, to be honest I'm not sure what THAT was). Ok, I know the DRD1 and 2 are s
  11. You might want to pay attention to the supplements to see if you notice anything different after she takes them, specifically Omega 3's, Vit D and Nac. They all did a HUGE number on my kid, amped everything up for him, the anger, depression, tics, itching sensation, mood swings, you name it - he took those supps and he exploded in any and all of the above. Many PANS kids react that way to those suplements, I have to keep food w/ extra O3s in it and Vit D at bay even now. Steroids also were the worst thing ever for my DS, unbelievable really how bad they were for him, but he manife
  12. Dr. T recommended NAC for my DS but he had a horrible reaction to it. Based on his 23 n Me results NAC was way wrong for him, but we didn't know that until a few months later so Dr. T wouldn't have known that of course, and I'm sure it can help many children, but it increased all the things we wanted to decrease in my son and had to discontinue quickly. He flared fast and hard when he took it...
  13. I haven't been on the forum for a while, but thought I'd check in and saw this post. Since it hits close to home for us here's my 2 cents: DS14 had PEX via Dr. L in Dec 2013...we live in WA state, so orchestrating everything from the office visit w/ Dr. L to get the ball rolling for Pheresis through to the actual GTU procedure was anything but easy. I believe that it turned out to be the game changer for his mental state, but we had 2 months of complete and utter nightmare following it before the change began....AND I had no idea what to expect and what to do w/ the crazy child (how he
  14. I have to say I've never hung my hat on 'it's a Herx' so let's power through. If I've given it a week or 10 days and the negative side effects are still there we pull back. I support Dr.T and your LLDO actually, but you as the parent have to do what you feel is right for your child in the end. Take care~
  15. DS 14 was 11 when PANDAS hit. He was in 6th grade, what, 3.5 months in? He missed all of middle school, no home school, no online school, no tutoring. He didnt' have 'flares' per se, he just had 1 non-stop long 'flare' that stopped him in his tracks. There was no way he could do any type of schooling and all his social interaction also ceased completely. Video Games saved his life, period. He's just now gone back to school, into 9th grade, started w/ 1 class and is up to 3 now, will add another next semester. He's begun to swim for his old private club and just was asked by the HS coach to jo
  16. I'm no doctor, but after reviewing his Cunningham panel the Vit D reaction he had was suggested, I think by Dr T, as potentially like' too much gas flooding the carburetor'...Since his dopa was already off the scale. This bit is from ei-resource.org, which Dr. T had posted a few years ago, but it makes sense when you think about it. Then again so much of my boys reactions were paradoxical, gosh it's hard to say. Quite a few other forum parents have posted thier kids neg reactions to Vit D and O3. "The fat soluble vitamin D is confusingly named, as it is actually a powerful hormone. It
  17. As I have been educated Vit D causes uptick in Dopamine, something many PANS kids already have an excess of, like my DS14. His Cunninham was more than double the the median number for D1 and D2. Vit D supps sent him over the top, really amped up all of his symptoms (aggression, anxiety, itching sensation, shorter temper, etc...). As I have mentioned in other posts he also was extremely sensitive to Omega 3's (flax and chia in food, fish oil) and they elicited reactions similar to the Vit D. so we have just tried to keep them away from him in any type of large amount. He's doing so much
  18. All SSRIs (natural as well) were awful for DS14, made all his intrusive thoughts, depression, tics escalate. Omega 3 was bad as was Vit D and NAC. Jury is still out on Florestor. He's been feeling awful and I've upped the Florestor as I ran out of Culturelle. So scary when you think you are doling out a supp that might help and it ends up doing the opposite. Ibuprofen 600 mg 3x day was the only thing we found to help at all, and it had a very, very small impact but I took what I could get. Some ABX seemed to promote a negative response, but Aug XR doesn't and he's still on that, alon
  19. DS had Fish, both Western Blots and Bart I believe. Those gave us some good information to work from. Good luck~
  20. DH had strep 'below the belt' and was playing ping pong Strep w/DS for months and months until we got into PANDAS Ped Dr. C. K., she knew where to look and 4 months later he was finally clear. Good luck and I hope he's rid of it.
  21. Melatonin made my DS feel like he was in a spin, so if she complains of feeling weird after trying it, it might be the M. Clonidine worked wonders for him for about a year, but then he got POTS and it exacerbated the POTS stuff, still looking for a sleep helper. Might go back to Visteril, thanks Missmom for bringing it up, I'd forgotten about it. He's just started to have leg tremors, just a few here and there, I also appreciate the Ibuprofen tip for that. I love this forum and all the great information sharing. And, hopefully the melatonin will work wonderfully for your DS.
  22. My DS reacts very negativly to O3 oils since onset of PANDAS, all symptoms amp up(tics, anger, etc...) this detail is copied from an ehow article, perhaps it's why those PANS kids with too much dopamine (like mine) can't handle O3 oils...sounds like O3 increases dopa and when it's already too high it just floods the brain out. Omega-3 Fatty Acids While foods that contain omega-3 fatty acids can be good for health by reducing the risk of heart disease and other disorders, one natural way to lower dopamine levels is to reduce your intake of foods high in omega-3 fatty acids. Research in bot
  23. I have been really lame in the charting dept. I kept a Journal the first year, tracked meds he's taken, keep a box of shame with most of the meds/supps he's had, and for the last 18 months have a daily sheet I used to track foods, check off his supps, make little notes on re/ behaviors, etc....but it's not good for any real cycle-like tracking aside from reminding my tired brain, which can't remember anything anymore, if I am able to re-read my chicken scratch notes! Can anyone share thier version of a daily chart/log/calendar that they feel is really effective for them? I have redone mine
  24. My DS had 16,000 on D1 and D2 of the Cunningham. Dr. T, Dr. L and our local Neuro were all shocked at such high numbers. The reason the SSRIs and some other meds he's tried, as well as Vit D were such complete epic fails for him was clear with the results though, so one mystery solved. He had PEX in Dec, had an unbelievably horrid reaction to it immediately, but since week 7 post he's been making baby steps of positive progress. He's in the best place mentally he's been in the 28 months of this nightmare. (small cheer) 2 IVIGs didn't seem to help him either that we could see, initial
  25. My DS got hives literally from scalp to soles of his feet 2 years b4 his crash...I always suspected it was connected but never knew it was a Strep 'thing'. Thank you for solving one more of his mysteries. It was horrible, and they lasted for a few weeks. An ER run got him steroids, massive antihistamines, etc but it was a very hard couple of weeks for him.if only I had been smart enough to think of a strep swab! At least they (and associated itching) eventually went away. He's on almost 28 months and counting of non-stop itching now, but no hives...although it waxes and wanes it never ever c
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