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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 overwhelming him on both sides: food wise and supps. He never had a chance!
  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, not mine, but no other anti inflammatorys seem to do what it does. I'm jealous that, you're getting such good results from low dose Ibu, I hammered my DS with tons for a very small positive. He's doing a bit better mentally, so I've paused on the IBU, but if it's working I'd stay the course! Dr.K told me once that PANDAS kids often have 'paradoxical' reactions to meds....maybe that's what your DD is having to the Phen HCI...? What about the Cunningham, have you done that one yet? Perhaps that will help you pause, or go forward with a PANS treatment depending upon results? That was our fork in the road...Dr T ordered for us. Dr. L Rx'd PEX last Dec, and now we are testing for AE. Such a process of elimination, so slow, I totally feel your pain. Good luck, and hang in there.
  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 needs the good omegas! It is SO frustrating, I agree. Like LLM I haven't seen any neg or pos to O6 supping which we do/did with Evening Primrose. I have trialed NAC & CoQ10 and they also were not good for DS....it's so hard to do all this and keep track of what is and isn't helping. His 23nMe results confirmed NAC and Vit D tolerance issues and that he's predisposed to potential intolerance of SSRIs as well, good info to have substantiated. I'm giving a shout out thank you to LLM for the wonderful help she gave me interpreting the data.
  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 intense upticks in his pandas symptoms, at least they did last year, so we steer clear of those too. The almond milk, protein shakes and some other foods he eats that have vit D in them don't seem to affect him adversely but even 200 mg of a vit d supp will. hopefully your DS can tolerate a small dose of D. I would get some 200 mg, half them and start there...ramp up slowly if he can do it until you find the tipping point. Good luck!
  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 much rice (flour) all the time since its chock full of arsenic,so I bake bread but the fam isn't wild about mine. Trader Joes also has a pretty good selection of GF items, they will print out a list of them if you ask, plus they supposedly don't import a single item from China in the entire store. Gotta love that! We are Pescatarian now on top of the GF....
  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 was a bad experience for him, next time will be easier for sure.
  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) germ and bugs OCD, started to flush red again at night, etc). None of which I was expecting, and I was freaking out a bit, so I posted from the hospital back in 12/13...warm thanks to the responders, it helped me come 'back' to myself and focus. Like your DD Jackalibeth, my DS is more than bummed that he's not feeling any significant changes as of yet, and what he's waiting on is a decrease/ cease to the itching. But I've not given up hope of some positives materializing, since he's got pretty severe stuff going on, and it was his 2 year anniversary of the PANS crash the day he began PEX. Also he's older and majorly in the throws of puberty, which seems to complicate everything. I do think in the last few days he's ever so subtly gotten 'lighter' in his mood, and is even cracking jokes about some of his OCD behaviors as well as putting irrational ideas he's held on tight to for over a year now into more, I don't know, practical or viable POV's (instead of ranting, or being terrified that humans/the world are only a speck of dust on some larger beings fingernail he's now postulated that our universe is just one of many and there most likely is 'life' somewhere else out there. This might not seem like much of a shift but believe me just the rationality of the thought process got my attention. He also PICKED UP a dead bug he found in my office this AM, with a tissue of course, and deposited it in the trash. Then he instructed me to get that trash out to the garbage can ASAP but he didn't hang around and make sure I did it). Baby steps really means baby steps in this case. My husband (and DS) would poo poo these as victories, but if I'm seeing something different I'm counting it in the plus pile. I have no idea if he will see any significant gains as we go into the future, but I'm sure hoping we do. T_Anna's son has had numerous IVIg since his PEX, and she is seeing small positives thank goodness, slow but still tiny steps in the right direction. We will discuss IVIg w/ Dr.L next week during our flup w/her (first since PEX) and maybe that will be next on our list vs jumping into Rituximab, plus need to get valid AE results back before we go there and most likely PEX really skewed his labs that were taken 10 days ago... It's this WAITING game that is just so darn hard, so many many thanks to all of you who keep us rallied while we wait. Hang in there, and feel free to PM if you ever need too. Erin
  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 Strep, and he's gone 16 months now strep-free. When the sky fell; Strep A positive. He was almost continuesly positive for 6 months as was DH...finally thought we had kicked it out of both of them (and of course neither of them had any symptoms, ever ) did T&A, then first IVIg...but was still strep positve. He actually had the best response to the IVIg when he was strep pos, go figure. No ticing and more relaxed than I could remember for 3 whole days. Then all heck broke loose. 2 more HD IVIg's once he swabbed clear 3 weeks in a row with a month in between; no changes of note, all though as time went by (and he was doing Klinghardts Lyme stuff) he got more and more mentally together but became more depresses as he became more 'present'. Maybe the IVIg was working on that part, hard to say. We have gone down virtually every path we can think of with no infections found. We have tested for Lyme (always neg, but w/ IgenX there is strong speculation he could be have it, plus he had a bite that resulted in a red ringed rash 2 months before he got hit w/ PANS), parasites, vitamin deficencies, GI, Hormonal, Mitachondrial, checked always for Strep and Myco, mold, biotoxins, food allergies, metals, Rheum at SCH found anti phospholipid syndrome at onset, and Mayo found POTS this summer but I'm telling you the only thing we haven't done, that I just got orders for today, is AE. So he's off for more blood tests tomorrow. I will say that we haven't hit Lyme as hard as we could have (Klinghardts regime for almost 6 months before I pulled the plug - they made me so mad they were so hard to work with but I think they had thier hearts in the right place), so we may be revisiting that aspect in the near future as our current LLND felt we should give PEX a shot, see what happens and if it wasn't successfull 'hit Lyme hard'. Dr. T had him on Minocycline for 6 months and that's a Lyme Abx before Dr. L shifted him to Augmentin HR (but only 1000 mg 1x day) , so hopefully if Lyme is at play that had been helping, but I know it's not enough. LLND hasn't been convinced it's been a concern of his, his mold and biotoxin numbers were much more concerning and we have detoxed him and gotten them down into reality - with not much impact we can see. I began the toe-dip into Methylation (again a BIG thank you LLM) and with a few months of very small supplement additions we saw, and even DS agrees, he was just a bit 'less bad' the month right before PEX. He wasn't great, but he was mentally together, very depressed, but in complete control, lighter in overall mood, etc. Powpow I can't say he had a positive reaction to the steroids, the first 2 were unremarable and the 3rd and 4th were awful, major uptics in all symptoms; physical and psychological. But he's a tic presenter and steroids can totally exacerbate them so that's also a hard call re/ thier lack of success. I honestly don't know if he's gotten any positive markers on his SED rate, antibodies or ACE. I should know shouldn't I...? Sigh. His Cunningham results make every doctors eyes bulge who sees it, they litterally do a double-take. His Dopa D1 is 16,000 (mean 1056) and his Dopa D2 is 16,000 (6000). His Lysogang is normal at 160 (mean 147) and Tubulin is 500 (250-1000) and CaM K II is 111 (53-130 mean)....are his results enough to indicate autoimmune disorder then? I just found an old post where a boys tics amped up super high after PEX and about 4 weeks in things started to change, the mom rated the before a 3 and the after an 8. I am going to reread it constantly to keep my mind positive! I'm just going to hold my breath, get his blood taken tomorrow to rule out AE, contact Theo Theohrides, ask his Neuro about the sed, ACE and antibodies that would indicate autoimmune, and HOPE that he begins to turn the corner soon. Our local neuro, Dr. T, Dr. L and her co-hort Dr. H all concur that he's got 'it' - if I could tell you how much time I have spent trying to figure out what the heck is keeping him amped up, you don't want to know (of course you all are doing the same thing). T_Anna I'm going to PM you. I am so happy you are having a measure of positive movement. Baby steps, baby steps. You are all the most wonderful, caring group and I thank you from the bottom of my heart. Erin
  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 back on board to keep going it was so bad for him. The only thing that hasn't escalated is the super nutty schizophrenic behavior he had when he was raging with Strep. The depression, tics and itching sensation are all sky high now, and obviously he was already in bad shape or we wouldn't have hauled him to GTU (from WA) in the first place! Has anyone else experienced this, a MAJOR backward slide before going forward? His last two steroid bursts were brutal on him, but he eventually returned to 'pre-steroid' levels after stopping them. I never would have given him steroids if i would have understood the potential to exacerbate tics in PANDAS kids was so high. I feel like everytime I sign him up for a 'helpful' therapy I end up kicking him in the head instead. At the very least I want him back to his regular awful, right? I am trying to convince myself that SOMETHINGS happening or he wouldn't feel worse...IVIg didnt do anything (that we can associate with it. Maybe they helped a bit over the long run but its hard to know). And maybe PEX won't do anything for him (please let that NOT be true) and he will go to next therapy (Rituximab) but he's been through so much, it's his turn to have some positive results. I'm trying to get my arms around some type of expectations. He's older, a tic/Anxiety presenter and fully hit puberty at same time as major exacerbation 12/2011 so he's a tough case, I get that. I so want to get him some relief, even just some decrease in the itching sensation would be a huge impact. Thanks for letting me vent and for offering your understanding of how this works, it's very appreciated. ET
  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 PEX 3 weeks ago...I was wondering if you mind if I PM you? I am so sorry your son, and your family are going through all of this, it's a journey we would sure would have liked to have avoided (and that's the understatement of the century)! Erin (DsMom)
  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 weeks ago...I was wondering if you mind if I PM you? I am so sorry your son, and your family are going through all of this, it's a journey we would sure like to have avoided (x10,000)! Erin (DsMom)
  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 didn't jerk or twitch even a quarter as much after day 2s treatment. Today is 3rd and final day, he's still got intensified itching sensations, but he's stressed out so maybe that's a factor...it's such a guessing game, I just hate it!
  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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