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DsMom

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Everything posted by DsMom

  1. The last 2 times my DS was on steroids for PANDAS symptoms his ticing went through the roof, as did all of his mental issues. I tripped over the NIMH's PANDAS detail (it's been changed since and now reflects PANS as well) and the 'concern' over treating PANDAS kids with tics with steroids due to the potential for tics not only to worsen but to increase to higher levels than they were at before the steroid 'therapy'. DS did 3 trials his first year of PANDAS,& the first didn't seem to do much of anything to him, but his ticing was far more subtle during that time frame. Both a neurologist who is PANDAS savvy and our PANDAS pediatrician are the ones who suggested the last 2 trials. The 2nd was bad, but I thought it was the Zoloft he was trialing (which also was disaster) but the 3rd time, as my boy escalated in all his symptoms to a 'worse than before' level I was freaking out. We scaled him back, fast, and his symptoms stayed higher than they had been for a while, but slowly came back to the 'before' steroid level. I am SO sorry you are going through all this. Sadly, so many of us can totally relate.
  2. Thank you for sharing momcap, I haven't heard first hand of other kids who have had as big of a nightmare on Zolo as we did. Although I have heard its the most frequently prescribed and the least tolerated by PANS kids. My boy sounds similar in the hyper vigilant about his safety aspect, but now he talks of ending it all, which is why I'm so uncertain about the Abilify. Oh do I hear you on start low-go slow! I only gave DS a quarter of the dose for Lexapro and in 2 days he was completely bananas. Gosh I'm so sorry you had to experience all that too. Plus I did see its a weight gainer too, ugh. So is your boy is completely off any type of anti anxiety anti depressant meds now? Was there ever one he could tolerate? How did he do w/ vit D and/or omega 3's? I'm going to get the free trial month of the Abilify, but still not sure if we are going to use it....
  3. Excellent articles on Abilify, thank you! We never saw pos or neg effects from EPO when he took it before, but the first time he was taking GABA it was a non issue as well... Now I second guess everything. And the zinc info, many many thanks. I was confused re/ all the 'ates' available so I just had gotten a Thorne zinc supp for DH and I, not DS as he was on Core, just because it's Thorne. Sigh. My DS developed a roving, non stop 'itching' sensation along with weird rashes virtually overnight 17 months ago. Found the Strep infection 3 days in (zero symptoms) that took 8 months of ABX and a T&A to clear, plus 4 months in we found out Dad was positive (no symptoms) as well, thank goodness we had gotten in to Dr. K in WA or we'd never have figured out DH. DS has had 3 HD IVIG's, first while still pos for Strep, but the rashes, major flushing episodes and itching hasn't stopped, ever. The mental stuff has gone up and down. Only when he sleeps is the itching gone. His first Neuro said as soon as he saw him ' I think it's PANDAS' and the itch is a tic. It all makes sense. We just can't get the itch to relent, and I know it's pushing DS over the edge. He got a bug bite 2 1/2 months prior that became a bullseye so we started with Klinghardt over 6 months ago, but have seen zero changes so are moving on from there to another ND who is LL just to make sure we aren't missing anything. Dr T doesn't think it's anything to do w/ Lyme, but I'd buy snake oil at this point, I'm sure you understand. I think if we could get a handle on the itching it would improve everything, anxieties, paranoia, depression, etc. But so far no ones come up with the magic bullet. Something has got to be keeping his autoimmune system on high, just what we don't know. He was certifiable when he last trialed a SSRI, DH is even more nervous than I to try the Abilify, but I think we will, I mean what if it helps him? DS is scared to try to so I may have to be covert about it, which I hate doing. I'm not sure what methylation really means. I'm going to try to figure that out too. I completely agree with you re/ your DS w/a 19 on the KPU scale, I'd be 100% in on Core, I wish I'd seen some positive changes, but I'm ordering that zinc liquid u use, great recommendation. Gosh, how have you figured all of this out? I can't thank you enough for the time you've spent and the info, and the 'good luck' wishes, we need all we can get.
  4. Oh I so completely agree with you LLM, I too will opt for natural,but there comes a time... I think you may be on to something re/ the zinc and not the B6. And today I almost gave him an evening primrose oil supp, but got nervous and didn't. I am going to tomorrow, needed the vote of confidence, since I've seen such neg reactions to what should be helpful and benign supps. I spoke to the Courtegen labs (Dr. T) fellow and he shared with me that they had done testing on the 23 and Me tests and found some of thier findings to be incorrect, so initially I was abit put off. That said Klinghardt et all suggested the 23 and Me testing, and many of these parents seem to have gotten good info back, so I need to giddy up on that. Do you know of that Abilify is a dopamine reducer? Any rec's? Also, there is more than one type of zinc out there; do you know if it should be one vs. the other if you are deficient? Thank you so much, I so appreciate our input, Erin
  5. OMgosh, thank you all for the info. We were treating Ds13 for Pyroluria via Klinghardt's protocol, but didn't see any changes of note after 6 months so we stopped the Core supps. that said he's low zinc high copper ( unless I've reversed it, I'm tired) so I'm going to look into the copper/ zinc supplementation some more. He was on the borderline of positive (tested at 11 when 15 was positive)for pyroluria, and Dr. T thought the Pyroluria was a non- issue for my son, plus he thinks Klinghardt is, well, perhaps less than on top of things. Im worn out on Dr. K as well so weve stopped all of his supps as of now. We are awaiting DNA test results thru Dr. T, but my son is SO low and dark. So interesting and validating that I'm not imagining the 'crazy' after Vit D and/or Omega 3. So unless I am misunderstanding Omega 6 should be supped? Thank You all!!
  6. I am curious if anyone is aware if Lemon Balm can have similar negative side effects like SSRI'S can have? My DS13 has extreme neg reactions to Zoloft, Lexapro, GABA, Lithium Orate, even Pepsid, Omega 3 and Vit D. I would love to try LB, but I'm nervous...
  7. We haven't tried Lemon Balm. I sound like a dumbbell here but is it a lotion or a drink, or pill? DS has had PANS/PANDAS for 17 months now and our Dr. K (WA) is certain if the symptoms can't be arrested it can lead to schizophrenia, and in his case severe suicidal depression. With his brain still so enflamed I wonder if anything that crosses the BBB will be worse for him....even Omega 3 and Vit D seem to do a number on him. That said Im willing to risk it just in case we find something that can help him. He's on the verge of a psych hospital if we don't find him some relief soon. Off to investigate lemon balm. Thank you so much for the reply. I'll let you know if we give it a go.
  8. My DS has tried Zoloft (nightmare), then GABA (did nothing) then Lexapro ( nightmare), GABA again (now nightmare!) Lithium and even Pepsid all made his symptoms flare like crazy. The only thing he's seen a smidge of help from is 600 mg Ibuprofen 3x a day per Dr. T. His local PANDAS Dr wants him to give Abilify a try but we are a bit nervous to even trial. Anyone out there got a child who is super sensi to SSRI'S etc that's tried it? What are your feelings about it? Thank you so much for your thoughts on this~ 6/6/13 Just wanted to update: we haven't trialed the Abilify, I've got it on the counter and I look at it daily but we haven't pulled the trigger yet. DS is holding it together so we are baby stepping through the days...I can't tell you all how much the support and sharing of information means to me. Thank you all so much.
  9. THANK YOU so much for posting this! DS12 had been on regular old penicillian per Dr.K (WA), but Dr. T changed him over to Biaxin. His symptoms amped up over the month so I'm also thinking that there is a link, because then DS12 totally went bananas last week when I supped him with Vit D 1000Mg, NAC 600 and Ubiquinol 100. Dr. T did the Courtagen DNA testing. He wants him on the Ubiquinol and NAC as a result and has DH and I also undergoing DNA test for further investigation. Now I think we had best do the 23andMe as well. At least he was off the Biaxin by then. Tried Azith, that was as bad if not worse than the Biaxin (anyone else had similar respons to Azith?). Now he's on Minocycline....so far ok. Can you elaborate on what CBS is? Sorry, I only know enough about all of this to be dangerous. All I know is my son has PANDAS and his issues are tic/tourettes in nature and unrelenting. It's SO frustrating to try to help your child when all the 'good' stuff really ends up making them feel so, so much worse. So happy I saw this post, thank you again.
  10. Maybe another for your consideration (?) might be the BioPure blend CurcuSyn capsules, 250mg plus ginger root,grape root & black pepper (all organic) $48ish for 100, if you want the on line resource for discounted BioPure sups ping me and I'll send it. My PANDAS ds is a 'probably' lyme kid so were doing Dr K's Lyme protocol and CurcuSyn is part of it.
  11. My ds12 sees Dr.K in Redmond for PANDAS which he's had for over a year now with little relenting. He got a bullseye bite reaction 2 months pre-PANDAS onset so now seeing integrated MD in Woodinville, Dr. Klinghardt, who is LLMD (Dr. K referred us). He also practices in Europe I beleive, every other month...is that the 'Dr K' you are curious about? I won't elaborate unless we r talking about the same Dr. Thanks yes its Dr. Klinghardt, I'm interested to hear your feedback.
  12. My son started on Clon from Target (peach color, very small sized pill) but then we too went to a mail-order Rx for refills after a few months. He gets vertigo and or a spinning feeling now when he's in bed, I'm wondering if it's a side effect of the new pills (bigger and light yellow with an MP embossed on them). Are the peach colored ones the brand you prefer? Thank you SO much for posting. I know this is from last year but if you get a chance to debrief on how you feel since the switch back I'd love to see it.
  13. My ds12 sees Dr.K in Redmond for PANDAS which he's had for over a year now with little relenting. He got a bullseye bite reaction 2 months pre-PANDAS onset so now seeing integrated MD in Woodinville, Dr. Klinghardt, who is LLMD (Dr. K referred us). He also practices in Europe I beleive, every other month...is that the 'Dr K' you are curious about? I won't elaborate unless we r talking about the same Dr.
  14. I am so happy for your DS12 and your family, I am so sorry your dd is now battling the monster. I too have a DS12, it's been just over a year of ...well, you know. My boy has had IVIg 3 times, the first time in July but he was Strep A positive, so we don't count that one, HD IVIg again at the end of Aug and again the end of Sept. I have seen some slowing down of the Exorcist Syndrome and lessoning in severity of tics, but he's still miserable. How often is/was your boy getting infusions? We were going to go again last week but he HATES it so much and he's so severly depressed we decided to wait until January so he could have some enjoyment at Christmas. Did your boy feel worse or did any of his symptoms get worse after IVig? Thank you so much for the positive words, they are so important to hear~Happy Holidays
  15. My DS12 (was 11 at onset) has been on steroids 3 times over the course of the last year. The 1st did nothing either way - but he was on them the first week of the nightmare so to be honest I don't know if he was worse or not, the second time 3 mo later he was trialing a super, super low dose of Zoloft and the combo was a death spiral of depression and tics (tapered him off both asap), the 3rd time was just complete disaster. During was bad, but after he was done all of his symptoms escallated, it was horrible. Read the NIMH's detail on PANDAS. They speak to the tic:steroid potential for increasing symptoms. We won't try them again and my son is miserable with no relief for just over a year now, but I'm to scared to try them again. Good luck but I advise caution with steroids if your ds has the tic aspect of PANDAS. The post re/ Tourette's is interesting, my ds could have a Tourettes type of tic but I hadn't heard that before.
  16. I need some advice here; we are so fortunate to have a wonderful PANDAS doc unbelievably here, in WA state, only an hour from our town that's trying everything in her 'bag of tricks' to arrest my DS's PANDAS symptoms which for the last 10 months has been primarily an un-ending 'itching' that he wakes up with, and goes to sleep with. It moves all over his body, goes from awful up to insane intensity and is probably excess brain energy discharging through nerves which he 'reads'as an itch. Of course it took us 4.5 months to find and then see her, so we are about 6 months in with her. He's had 3 IVIg infusions; the first one was for naught, as he was positive for Strep during, but the second (8/28-29) only served to really throw him into a tailspin of super crazy, and itchier than ever. He was terrified to do the third in case it made him feel even worse, but he did it 10 days ago(9/26-27)and no miracles yet. He's slightly less agitated, and the jerking tics seem to have settled down....but no traction on the itching. Nothing we've tried, and believe me he's been on 100 meds, has helped him at all. His last Prednisone trial actually made all his symptoms way, way worse once he was off it (NIMH PANDAS page cautions steroids for kids that have tics from PANDAS, but we hadn't known that B4 we tried it) so we are super scared to try that again, although the 3 previous times he's tried steroids (the first week, 2nd month and 5th month respectivly)he didn't have that reaction, but he also didn't get any relief from the itch while on them either. Anyway, here's my quandry; we are, as every one is, desperate for some type of relief for our boy. He can't function at all really, literally hasn't gone to school since this monster fell out of the sky on him overnight last December 8th, so he just stays inside and plays video games or watches movies to forget the itch, or if he feels good enough leaves w/ me or Dad on errands, etc. but that's pretty rare. I can't work anymore of course, and he's becoming seriously depressed. I am wondering if I should consult with Dr. T or Dr. K. I love our Dr here but maybe just to hear another's ideas and maybe, just maybe there is another 'trick in the bag'? It's beyond hard for us to just sit tight and pray that we see some relief fromt he IVIg for him in 3 weeks, or 10 weeks, or longer with no back up plan ready to go if we don't. And, if the IVIg doesn't get him relief what do we do next? Can anyone recomend one Dr. over the other? I know they are both wonderful. Our Dr. has worked w/ Dr. L in the past but she doesn't do phone consults as I understand it. BTW, has anyone else's child experienced nausea or flushing this far into post IVIG (10 days)? I think it't pretty unusual this far in, isn't it? Thank you to anyone who actually made it through this post; I think I needed to just ramble a bit to get it out of me, thanks for understanding. I sure appreciate this community, it's priceless.
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