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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 on Abx for over 4 years straight. Game changers for him were getting the Strep out (took over 6 months and a tonsillectomy) at the beginning of his illness, then 2 years later him getting Plasmapheresis (TY Dr. L), and now for the past year HBOT has been UNBELIEVABLE for Lyme symptoms, so we now have one of our own. Look into hyperbaric oxygen therapy for Lyme... My boy was almost 12 when he crashed, IVIg didn't help at all, Abx kept him from getting Strep again but didn't help him stop flaring, ibuprofen took the teeny tiniest edge off him and he took 3 caps every 4 hours for 12-18 months if not longer. PEX was huge for us, although he got worse before better, but we got the suicidal depression and schizophrenic crazy gone and our boys mind back as a result of it. He's 17 now talking about perusing an engineering degree. Dec 11th as the 6th year anniversary of his crash. It's like a bad dream we are waking up from finally, thank gosh. I sincerely hope your boy gets well soon.
  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 insomnia. He's improved so much over the past 2 years and I still keep him away from Vit D and O3 for fear they will do a number on him. Perhaps I will re-visit the Carnitine supplements based on your post....thank you
  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 additional salt in food or raise BP, and elevate head for sleeping w/ a wedge pillow. It can be very debilitating. Hang in there....
  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 her info. When I had contacted ILADS 2 years ago I was told there was 1 LLMD in the state, maybe he was in Vancouver WA...
  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 shocking from 2013, but note the Tubulin numbers.... His 2013 results were: DS Normal mean DRD1 16,000 1056 DRD2 16,000 6000 LYSO-GM1 160 147 TUB 500 609 CaM KII 111 95 His 2015 results are: DRD1 2000 1056 DRD2 16,000 6000 LYSO-GM1 80 147 TUB 8000 609 CaM KII 126 95 Does anyone have a glimmer as to what the Tubulin might signify? I mean, geez, it's way WAY up from the 2013 results and he was such a mess back then. I know his dopamine auto-antibodies are still out of whack on DRD2, big time, but the PEX in 2013 took the DRD1 back down into reality, thank gosh, and is THE reason he's back out in the world today....he's currently being treated by a Naturopath for Bart but it's a slow road because he feels absolutely awful when he takes the Malerone, and he's only at 1/6 of the dose. His doc says Its Not a Race, but to be honest I kind of feel like it is. If anyone has any insights or understands the significance of the individual titers I would love some feedback. I do have an appt w/ his neuro, who is a PANDAS-believer, this Friday, but I'm not sure he even knows what these mean, and there are some very educated parents on this panel whose insights I value greatly who just might, so feel free to share if so! Thank you so much, DsMom Erin
  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 manifested PANDAS in the tic/Tourettes fashion, OCD was in form of anxieties like your DD, no rituals, but lots of fear of germs, etc. Per NIMH kids w/ tic-type PANDAS should be wary of steroid use and I can assure you they were correct based on our experiences (probably 4 different trials that were all disaster). Also SSRI's ; stay w/ the Start Low and Go Slow method, basically on virtually everything in mho. The advil/Ibuprofen was a help for us, a tiny help, but a help none the less, so I would definatley give that a whirl, 3x a day, lots of water w/ it if you can get it into her. I set my watch by the dosing, if we missed one we really could tell immediately. Dr. L is great, & Dr. F at Stanford as well, but they only see CA residents at her clinic. Oh, I wanted to mention that DS's handwriting never really went super wonky, and his math skills seemed to stay fairly intact, although in year 2 he got serious brain fog which could have been the POTS he had by then, and/or the Babs he's being treated for now as well. He didn't have any urination issues at all until the 2nd year either, but then that started and stayed around for another year, so I think some symptoms can come and go...and then come back again sadly. Hang in there, try the Ibu and hopefully you will see some positive movement. ET
  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 could have gotten any more depressed or schizo is beyond me, oh but he did) I had on my hands afterwards. Dr L is wonderful but being so far away didn't make for easy communication. She did share that the PEX can cause additional inflammation to the brain before it settles down, and my sons brain was already so on fire it just added insult to injury. He was definitely an anomaly though, I have only found a handful of other kids who reacted this way. If you are interested please PM me and I will share details but ultimately for us it was more than worth it, even w/ the added craziness. It wasn't the only thing that has gotten him to where he is now (goes to school after missing all 3 years of middle school, swims for club team, is just OUT in the world again after 3 years of being a shut in who only wanted to die), the Lyme treatment seems to be helping as well so we are just holding our breath when he has little setbacks and hoping that they pass.
  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 join the boys team (3 weeks into season, he's so flattered) so our new normal is amazing. Where he's been, I can't hardly believe he's where he is now. He also has been extremely sensitive to all typed of meds, paradoxical reactions all over the place. I wish you the best, it's so hard, hang in and do what you have to do. If it means he plays excessive VG...well, there are worse things. My son is getting an A in Algebra after missing ALL of Middle School math. They didn't warp his brain, I think it saved him actually and there were times when I can say he was completely obsessed, in fact he obsessed about obsessing....but somehow he's made it out the other side. Wishing you strength, you can get through this and so can he.
  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 has a major role in the conversion of the amino acids to neurotransmitters , tryptophan to serotonin, and tyrosine to dopamine and norepinephrine. It performs this role within the brain, and in the adrenal glands. Much of this is performed through vitamin D's close relationship with calcium, as calcium literally controls the communication between neurons (brain cells). This relationship with calcium is also why vitamin D is important for bone health. The neurotransmitters serotonin, dopamine, and norepinephrine have a huge impact on mood, so if vitamin D is deficient and they are not produced in sufficient amounts, the result is depression." In my DS's case the abnormally high levels resulted in deep, dark depression as well...So while the Vit D doesn't directly cause an uptick in Dopa it indirectly impacts the increase in production, which in our case was not a positive. I know all our kids are unique, so we all have to try dif things and see what sticks and what doesn't.
  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 better mentally I'm curious as to what his D1 and D2 numbers are today. Cunningham test has been out of those two so I haven't been able to check where his numbers are, but plan to in the near future as they are just able to test for them again. If they have reduced significanlty I will definately begin to slowly, in very small amounts, reintroduce.
  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, along w/ a pulsed Azith/Cefdiner protocol for Lyme treatment....PEX in Dec was a game changer for him mentally though. I'd say 60% better than he was at his absolute worst if not more so right now, but he's got a ways to go. We are debating Rituximab for Sept/Oct. Good luck and hang in there
  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 both animal and human models have shown that a decrease in omega-3 levels bolsters serotonin, but also lowers dopamine levels. Examples of foods that are high in omega-3 include walnuts and some fish, including mackerel and anchovies.
  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 20 times but I'm so brain-tired I just do the same thing over, slightly modified. Thank you in advance! If you could even share what some of the details you track are, and is it by hour, portions of day, entire day or week? I don't have a laptop, only IPad and a box, so that's why I've used hand written so far...
  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 steroid burst at onset didn't seem to help, subsequent 3-4 bursts over first 8 months increased tics, mania, anger, depression,etc...similar to PEX. This is a newer study published on D1 and D2 autoantibody levels correlated with SC. It's saying an imbalance in the dopaminergic system is more likely (duh!) causing greater sensitivity to Dopamine stimulus. Keep DD away from Vit D supps if she's taking any, see if you notice a change in her behavior. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779221/ DS has NMDA AE tests and HPHPA (OAT) labs cooking..... Hang in there
  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 completely leaves him. Good luck and I hope he kicks this bout quickly. Thanks again for the post.
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