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Everything posted by DsMom

  1. after you get into PANDAS/PANS on this forum look on the top for Helpful Links/threads and it's about 3 or 4 posts in, and also PANDASnetwork.org under 'resources' has a detail state by state....good luck
  2. My DS met w/ Dr. D. K. At Sophia Health Institute for his initial appt and then we chose to have follow up visits w/ Dr. S who assisted him during that meeting. I'm open to sharing our experiences there if you want to PM me.
  3. Our Costco has the Nutiva brand coconut oil as well as a very nice assortment of GF items (organic, no BPA canned black beans and kidney beans, organic quinoa, coconut and almond milk - rice milk has too much arsenic for us since we eat more than I like of rice products since going GF) which are HUGE staples for us. PANDAS DS13 has been a Vegi for 6 years now, and is GF since early in with the illness, so I know how hard it can be to feed these kiddos. Just know it gets easier as you go.
  4. Maybe it's one of the ABX? My DS had very bad reactions (depression escalated, other PANS symptoms increased) when on Azith and Biaxin. Has she always been on the 3 concurrently? I've read of others who had reactions to the bactrim, is it a sulphur based ABX? We haven't used it so I'm not very savvy about it. My DS has been depressed, seriously so, for over a year and I understand how scary it is.
  5. The Omega 3 component wasn't addressed that I could figure out in the 23nMe info. LLM would be more adept to answer to be honest. There is a lot of info in the Heartfixer doc. DS just would go bananas after he took either supp, or ate food that had a lot of O3 in it...he was pretty Accute then, so it was hard for me to connect dots, maybe now since he's 'better-than' it might not affect him as much? I dunno. I'm considering a Vit D lamp, if I get one I'll post how he reacts....and you might try small amounts of flax or chia vs a fish oil pill, maybe it won't have the same impact? I was ov
  6. Interesting. We had a Dr tell us to be extra cautious, or just keep DS away from Sudafed due to pretty extreme reactions hed had to Attivan, and then to Benedryl in his 1st IVIg drip....it can cause Anxiety; CNS depression; convulsions; dizziness; excitability; fear; hallucinations; headache; insomnia etc. I know I've had enough of all that from DS without instigating more. That said, When I give it to DS I start with a Half dose, which he tolerates just fine, but I've not noticed it HELP him. Ibu has helped many, us included, so I get that one. Its really been a miracle worker for some kids,
  7. With my DS it was very obvious once I really paid attention; His Tics, anger and depression would immediately increase in less than 30 min after ingesting O3, similar to the vit D reaction he has/had. I even eliminated flax and chia seed that I was mixing in DS's oatmeal & baking into his GF bread due to his negative reaction to O3s. I used to get these wonderful (mostly) flax GF muffins that were a treat and he'd have 1 a few times a week; I probably gave him the fish oil with the muffin....so he just ended up with the treat from heck. I'm not quite ready to trial any again yet but he n
  8. Dr. T Rx'd ibuprofen for my DS's depression as SSRI's natural and pharma were disasterous for him. It helped him a bit, not a lot, but you take what you can get, yes?!
  9. Clinda is what finally broke the Strep from DS after 6 months of more constant than not Strep infections, most of that time he was on Augmentin as well, plus he had a T&A! I'd stay the course n the Clinda...
  10. My DS13 labs for vit D were at 14 in December....awful. But I have been unsuccessful with virtually any amount of D suplement; he gets more angry, anxieties amp, tics amp, etc. very shortly after he takes any. We have a summer place in the desert and although he spent little time in the sun w/ out mega sun block on (minocycline last summer, makes the skin super sensi to burning) I didn't notice he was any worse whatsoever after time outside...in fact I've been noodling about some type of lamp that he might get some Vit D from, but I haven't gone there yet. Omega 3s also trigger really inten
  11. Searching for help: have you started a probiotic regimen then...or something else to restore the balance? If so, what, and do you see any positives?
  12. We live on the west coast but I believe that there are Great Harvest Bread Company stores nationwide, right? When we were in MN at Mayo last summer I saw one there..... Anyway they have GREAT GF offerings, but locally they change on a daily basis and they are not cheap. we use them as an alternate and treat to Udi's ( our Costco trialed a huge loaf of Udi bread for 5.99!!! Sold out immediately. Watch for it as they're supposed to be bringing it back). Costco, here at least, also has GF flour blend, noodles, another brand of bread I don't love, crackers, chips, etc. I don't like to use so mu
  13. Thank you for posting the link; I am going to see if DS13 can get the HPHPA testing done quickly. Hes a PANDAS+ kid, His Cunningham test shows crazy high dopamine autoantibodies, and he's had gut issues since forever. Would like to rule out yet another potential issue. I never would have seen this so many thanks!
  14. My kids veins collapse when he's anxious, he's had the catheter in his hand (never again hurt too much) and arm. He had major reactions to the Benedryl w/ IVig, was like a seizure, even second day when amount was reduced and drip was slown way, way down. Scary to see. All 3 of his HD IVIgs were painful for him, he had to have drip brought way back and warm packs on insertion area the entire time to help with discomfort. I would go w/ Valium perhaps instead of Ativan on a PANS kiddo? Get some warm packs for DS, it's amazing how much they helped reduce the discomfort for my DS. I'm so sorry it w
  15. There are 4 separate tests done for ours, 3 at Mayo and 1 went to SLC. I don't have the names of the antibodies tested for but I can get them (still waiting on final results) for you next week. I will PM when I have them.
  16. And boy do I agree: PANS/DAS is an incredibly lonely, scary and life changing experience for virtually all of us living it. I am SO thankful for you parents and this forum! I will chime in with what I've been observing in DS13, as the 'recovery' after PEX is very much a hot topic in our home; DS is 5 weeks POST-PEX today. DS13 has definately had the 'pages turned back' experience. He had an immediate uptick in almost all his PANDAS symptoms (tics, jerks, insomnia, the non-stop itching sensation skyrocketed, depression worsened (how that could get any lower I don't know, but it did) ger
  17. Joybop and Cobbiemommy: sending you both big, huge hugs. It feels so nice to have the support. LLM; I will never be able to repay you for the time and interest you have spent with me. I am always in awe of your knowledge and willingness to share it with all of us, and we love you for it! I just hope somehow I can one day be as supportive to another parent in this awful situation. Hrosenkrantz and Powpow, (LLM already knows this part) we have tried, for 2 years now, to run down any other type of infection that might be fueling his symptoms. The only thing he's ever been positive for is
  18. Was interested to see info, but I'm not able to use link. PM me w/ it when u can?
  19. Ive been cruising the posts, most are years older, re/PEX recovery. But what I keep seeing (selective reading perhaps?!) are comments about immediate and/or major improvements seen with in days for PANDAS kids. I didn't go into it with set expectations but I sure didn't think it was going to throw DS13 under the bus! DS13 is 19 days post treatment (3 consequtive days at GTU) and he feels worse than ever! He hasn't been jerking and ticing like this for months, even when he's sleeping he's jerking now. He started feeling awful about an hour after day1's treatment....I almost couldn't get him
  20. I use Culturelle alternating days for DS and it doesn't have any effect on his GI system that I can see....and he's always 'slow'...
  21. Kristi, I too am in (well, near) Seattle and spent a week at SCH when my DS 13 was hit like a ton of bricks, back in '11. We had 2 docs mention PANDAS in their notes which I didn't hear a whisper of until I requested all medical records a few months later. We were actually told to try accupuncture (we did), see a Naturapath and that 'it will all just go away' ...which of course it hasn't. The chief of Derm has been our best advocate there actually but he's pretty lost re/PANDAS so we have worked with Dr.'s from out of state and Dr. K in Redmond. We are just back from Georgetown where DS had
  22. Kristi, I too am in (well, near) Seattle and spent a week at SCH when my DS 13 was hit like a ton of bricks, back in '11. We had 2 docs mention PANDAS in their notes which I didn't hear a whisper of until I requested all medical records a few months later. We were actually told to try accupuncture (we did), a Naturapath and that 'it will all just go away' which it hasn't of course. The chief of Derm has been our best advocate there actually but he's pretty lost re/PANDAS so we have worked with Dr.'s from out of state and Dr. K in Redmond. We are just back from Georgetown where DS had PEX 3 w
  23. No, no ABX per LLMD. She's been more concerned with his mold and chem sensitivity test results as they were sky high, so we detoxes him over the summer and his new labs show him significantly improved. Per the IgenX data she wasn't even sure if the Lyme was an issue for him 'now' but feels certain he's 'had' it in the past. She wanted to see how PEX goes and if no improvements dive into a Lyme blasting regime. We had treated for parasites via Kilinghardt and he's not a wimp on that front, so I know that's not impacting him, if it ever was. Only ABX right now is to keep Strep at bay.... he did
  24. DS was positive while on Augmentin after short runs previously of and Amox, Azith and Cefdiner. After long course of Clinda (after T&A) he's been clear for over a year, so that seemed like the magic ABX to get it out of his stomach biofilm. He never had any symptoms aside from flushing, rashes and a low grade temp which only occured at onset of acute flare.
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