DsMom
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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....
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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.
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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
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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!!
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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...
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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.
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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.
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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.
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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.
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1357229758[/url]' post='151711']1357223838[/url]' post='151702']1354924874[/url]' post='150700']
My DD has Lyme/Pans and is being seen in NY/CT. My niece is 12 and has a LONG history of what was thought to be PANDAS, tics, behavioral issues, textbook OCD rituals etc. She was on Zith for 1-2 years and literally as soon as abx were stopped, tics came back. She got bad leg pain on augmentin and had to stop. Now she is on Cefdinir. I have been asking about Lyme as a possible reason as to why she was not recovering. I just got a copy of her stonybrook test which has band 93 IND which our LLMD told us 100% convinces him of Lyme, he said he does not need to see anything else with that result. (gave me a paper on this topic too) To complicate matters they live very far outside the US, and my SIL is very concerned about the prolonged use of Abx. It is going to take me a huge amount of convincing to get them to bring her here for treatment. Due to the severity of her case which has gone on for years, and my SIL's views and prefernce for naturals, I was thinking that maybe I could try to convince them to see Dr. K. If you have seen him please pm me what yor experiences have been, does he use abx and naturals, is he open to PANDAS if you know etc. Any suggestions are welcome.
Just as an aside, this makes a niece with Lyme, a nephew (differet sib) who got Lyme and recovered, my DD with chronic Lyme and my 3 yo who got a bullseye this summer. There has got to be some genetic predisposition here!
Many thanks,
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.
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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.
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1354924874[/url]' post='150700']
My DD has Lyme/Pans and is being seen in NY/CT. My niece is 12 and has a LONG history of what was thought to be PANDAS, tics, behavioral issues, textbook OCD rituals etc. She was on Zith for 1-2 years and literally as soon as abx were stopped, tics came back. She got bad leg pain on augmentin and had to stop. Now she is on Cefdinir. I have been asking about Lyme as a possible reason as to why she was not recovering. I just got a copy of her stonybrook test which has band 93 IND which our LLMD told us 100% convinces him of Lyme, he said he does not need to see anything else with that result. (gave me a paper on this topic too) To complicate matters they live very far outside the US, and my SIL is very concerned about the prolonged use of Abx. It is going to take me a huge amount of convincing to get them to bring her here for treatment. Due to the severity of her case which has gone on for years, and my SIL's views and prefernce for naturals, I was thinking that maybe I could try to convince them to see Dr. K. If you have seen him please pm me what yor experiences have been, does he use abx and naturals, is he open to PANDAS if you know etc. Any suggestions are welcome.
Just as an aside, this makes a niece with Lyme, a nephew (differet sib) who got Lyme and recovered, my DD with chronic Lyme and my 3 yo who got a bullseye this summer. There has got to be some genetic predisposition here!
Many thanks,
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.
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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
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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.
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Listen to me, all parents! I have been reading several messages of despair during the holidays on various forums. The shooting last Friday shook us all up and added to the worries of the world. I am here to say that your child can and will get better! My son had his 1st Strep at 14 WEEKS. He has lived with PANDAS/PITAND for well over half his life and fell to pieces in September 2010. He literally went non-verbal, rocking, stimming, with chorea of the upper body, severe facial contortionas verbal tics and OCD. He was lost. It took time and good docs, and treatment, but he is found. He is here, whole, happy, healthy, relatively cheeky and obnoxious and sweet as any 6 year old boy can be! 3 years ago there was very little info out there. Now the medical community is starting to catch up and the specialists are gaining ground. Most of all, we parents are pushing forward, striving and CHANGING the way that the country and the medical community looks at this, and related health issues. This is a disorder from which your children can recover! We will have to be vigilant throughout our son's childhood and adloescence, and perhaps tweak things with IVig occasionally or abx changes, but he is going to be OK. Please do not lose hope and keep fighting the good fight! It will pay off. Happy holidays and love and peace and caring from my family to yours. -Kath
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Thank you as well, your positive words are very welcome as we are struggling still, just one day at a time. You have offered some wonderful advice to me in my past posts, it's been very appreciated. Warm wishes for a good end of 2012,
Erin
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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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Thank you both so much for the positive words. It is SO helpful to hear that other families didn't see immediate results, but did see positives in time. So many stories that I have read over the last 9 months where parents see immediate and dramatic changes from IVIg in 2 days, in 4 days, etc., it is just scary not to see him get any relief, just getting worse.
BeesKnees - I hope that you are free from strep and that the IVIg process goes super smooth and is very successful for your child, just like Nicklemama's child had positive results over time.
After I posted I did read on Dr. K's website that in children over age 10 IVIg is often times a much slower fix than with children under age 10. I hadn't heard that kids get worse before they get better, but if thats how some of them go; wow,we are in that catagory! Today was just horrible, in fact we are going back in to test for another Strep infection day after tomorrow just in case the 'on button' has been pushed yet again.
Dad has been on either Augmentin or Clindamycin non-stop since April just like our son, but there was 1 week in there that he backed off and whamo - they both tested pos for Strep. It's maddening. My thanks to both of you for the boost in my spirits, it's huge when you are having a hard time seeing the light at the end of the tunnel.
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My 12 yr old had IVIg 7 days ago (his 2nd time, first was futile due to an active Strep infection we were unaware of). His symptoms are maybe 5% better regarding the mental state, but his main complaint is all over body itching, and it seems to have ramped UP since IVIg. Is that all we have to look forward to for him? What do other parents do when IVIg doesn't give thier kids any relief? Do it again? Our doc, who we really like, has only done plasma xchnge 1 time, and with 'disasterous results' per her comment.
My son is primarily tic impacted (twitching and jerking, weird growling voiced statements about how itchy he is and that he needs to 'squish something' with wild eyes and facial contortions(Tourettes?)and non-stop itching that moves constantly all over his body which isn't dermatological, or histamine related, at least it's not remotely impacted by anti-histamines, and it's not anxiety induced either as has taken Valium to see if any impact, and itching became worse for him to manage). He's been on antibiotics non-stop since 4/12, had his tonisils out, and still he and his dad keep testing testing pos for Strep. He's had 3 clean rapid tests in a row, so in we ran for IVIg...but here we are a week later and I'm so bummed because it's not seeming to have helped him much if any.
We have tested for every co-infection we can think of, of course the TBDs have all come back negative and now since IVIg I guess he won't test accurately anyway. Sigh.
Anyone got any advice for a really worn out and sad parent(like a lot of you)not willing to give up, yet not certain of where to go now?
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I have to say that day five after both IVIGs here were the days that things started looking up. My DD didn't really worsen after IVIG but improvement wasn't seen until day 5 each time (only had it twice though). I was just telling my hubby last week that it appears day 5 will have some significance. Interesting.... The dotted rash does sound like Babesia to me as well. My DD had (or has, never can be sure) that, Bartonella, Mycoplasma, and did test + on one Igenex Lyme test. If you haven't checked for co-infections already, I would highly recommend that you have it done. Again, welcome and good luck! : )
I asked about checking for the other co-infections but since he's had the IVIg already I was told they wouldn't be valid now....so we don't know, but he did have 2 Lyme tests over the last 8 months and they both were negative, and he's got so much energy compared to what you read about w/ Lyme.... His itching sure fits a 'tic' profile, it's terribly, horribly debilitating to him (out of school since it hit him like a ton of bricks 12/8/11) and we just so wish we could stumble upon some type of cure, which I know all the parents here also wish desparately for. One of his docs wants to put him on Flagyl to rid the 'unidentified' parasite, but the lab who found it told me it usually takes a concoction of things (thier words) that are thrown 'at it' to make it go away. It could be the reason why he flushes red all over his body, especially towards night and the itch ramps up then as well....it's maddening.
He's gone backwards again in his verbal outbursts and facial contortions since day 8 of post-IVIg,says he feels so much more itchy he can't help the outburst or the irritability. Then the switch flips and he's back to himself...as long as he's on the computer or playing a video game. As soon as his attention is moved he has such a hard time. Maybe this is the roller coaster effect going on, here's hoping we get to the upside of it again, and soon!
Has anyone tried PEX and if so was it hard to get insurance and/or a doc on your side to get it going?
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Wow wow wow and THANK YOU all so much for the wonderful information about Babesia, which I will honestly say I have never, ever heard of but am running to check out now. He doesn't have any of the signs of liver toxicity, no swelling, or fatigue or dark urine, etc...so I don't think that's an issue, but I am so curious to find out all I can about Babesia and the other two infections mentioned. I will report back, and I just can't thank you all enough for the ideas and encouragement.
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I apologize in advance as I don't really know how to 'do this' very well. But I will learn! Thanks much for the welcome and replies, I suppose every one on this forum understands how lost and alone you feel when your child is ill and you feel powerless to fix them.
Some questions I have been asked are:
1)Has my son been on antibiotics? Yes, Augmentin 500 2x a day since mid April this year, and previous Amox, Zith and 2 others off and on. He still continued to test pos for Strep, as did my hubby (below the belt) so we think they were infecting each other off and on...And we had my son's tonsils/adnoids removed as he was STILL positive even after months on Augmentin, now both seem to be clear.
2) Did you check for other chronic infections like Mycoplasma, Lyme, Bartonella, Babesia prior to IVIg? Weve had two Lyme tests, both neg which I know means virtually nada, but his symptoms sure aren't like any Lyme ones we can find, again not that that means anything. I don't know what the other illnesses are, but I'm going to look them up....so I don't know if he's been cleared for them or not to be honest. Thanks for suggesting them.
With regard to his itching, he's been on enough antihistamines to take down a rhino, and no impact. He's tried steroid creams, bath salts, you name it, but the itch isn't a derm thing, it's a neurological thing, so nothing that would help 'skin' helps at all, it generally makes him feel worse. Stress isn't a factor in the intensity or duration of the itching either. He's had about 4, maybe 5, differant rashes off and on, almost non-stop for the first 5 months of this that were baffeling as well. Spotty red dots, lacy flat ones, deep red face and body flushing, just bizarre. And, he didn't itch more where the rashes were either, they didn't seem all that related to the intense itching. He has tested positive for 'an unidentified parasite' from a test we have done 2x now via Dr. Jerry Katzinel (Jenny McCarthy's Autism Doc) who we got involved with when we were desperate for a PANDAS expert and couldn't find one in WA (he's in CA). Before we stopped going to his regular pediatrician we tried the standard parasite test but got a negative on that. Then we found our PANDAS doctor in WA but are still working w/ Dr. Jerry a bit...Not sure how, or even if the parasite is a factor in my son's condition. He's just miserable is all we know and haven't found one thing that can help him reduce the feeling of itching. Today, day 5 after IVIg was his best day so far, less 'crazy' more relaxed as a whole. Maybe it's a trend...I almost don't want to even think about it so I don't jinx it.
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Redmond, WA
Dr. Cynthia Keller
Redmond Pediatrics
Only accepts new PANDAS patients and she's got a wait list, but she is WONDERFUL.
425.881.KIDS (ph)
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New to this wonderful resource of learned parents/participators regarding the difficult world I'm doing my best to navigate through of PANDAS.
My now 12 yr old son is a very a-typical presentor w/ non-stop itching we all believe to be a tic in addition to crazy voices/facial expressions and hysterical laughing when he can't manage the 'itch' anymore, which we liken to Tourettes. When he's in full-blown episode he's extremely paranoid of germs, lead, bugs, etc. Had tonsils out 6 weeks ago as couldn't rid Strep, but after T&A he finally tested clear so got IVIg done 7/18-19, and had extreme reactions to the Benedryl very similar to his reaction to Ativan (except he hallucinated on that and didn't w/ the Benedryl,)it's almost siezure like, shaking uncontrollably,moaning and shrieking, eyes rolling, etc. Of course also headache day 2 of IVIg and migraine-like headache day following. As headache abated his 'crazy' behaviors have escalated, and no respite in any of symptoms except the mornings might be a bit more calm, and he's going to sleep faster with less twitching and jerking than he had been.
I'm sick in my heart as I wonder if it failed, but I have read a few others who say it can be a bit 'saw-tooth' like in progress? He's very actute in symtoms, and has been suffering so long now (began overnight begining of December 2011) I wonder if anyone knows if:
1. Tics/Tourettes take longer after IVIg to slow down?
2. Can it be worse before better right after IVIg, I don't want to be defeated but if it's not working I need to figure out what the next step could be...and I have read about so many children who have felt so much better right after the procedure (which I am so thankful for, no child should have to go through what these children are experiencing).
3. Has anyone else out there heard of any other child w/ an itching issue as related to PANDAS? His 'itch' we think is electrical energy his brain is getting rid of, and he just mentally makes sense of it as an 'itch'. It moves all over his body, doesn't stay in the same place for all that long but can be so intense that he 'can't feel his nose, leg, hand, back, etc anymore'....and then he will often times just go berserk from it.
4. Should I already be working on a second IVIg for him?
Thank you so very, very much for any thoughts.
Nightmare PANDAS/tics newbie - need help/advice
in PANS / PANDAS (Lyme included)
Posted
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.