Dedee Posted December 29, 2011 Report Posted December 29, 2011 Most of you remember that my daughter had two HD IVIG's back in the summer and made some improvement but lately all improvement has halted. Since school started she has had a bad stomach virus and a really bad cold. Both of these caused regression. The worst of it was a few weeks ago when she got strep from her babysitters kids. Since then it has all been down hill. We aren't as bad as before IVIG but still not in a good place. At least she is still taking her medications. We have given her a steriod dose pack and she has been on motrin, both of which have only given us minimal improvement. She is currently on Erythromycin and full dose Zitromax. We added the Zith back when she got the strep symptoms. The Erythromycin is for the myco p. So, took her back in to see the nurse practitioner yesterday (The one that did her IVIG.She is very good) and were discussing options. The suggestion was to try a protocol that is being used for RA and other autoimmune related illnesses thought to be triggered by mycoplasma. The protocol is from a Dr. Sinnott. Basically it is oral minocycline and 5 days of IV clindamycin. She says we can do this at home since I am a nurse and can infuse the medication without any problem. We would put the IV in at the doctor's office and she would get her first dose there (in case of reaction). The rest would be given at home so the only real cost is the medication. She says they have seen good results. So, what do you guys think? Anyone heard of this? Doesn't sound extremely risky considering all the antibiotics we have used already. We discussed the yeast issue and she said she would be very pro-active in prevention and early treatment of that if needed. Thoughts.......Opinions???? Dedee
MomWithOCDSon Posted December 29, 2011 Report Posted December 29, 2011 DeeDee -- I haven't heard of this exact protocol before, but if it's been effective for RA, it seems as though it is worth a try. Good luck, and let us know how things go!
peglem Posted December 29, 2011 Report Posted December 29, 2011 No experience here either, but it seems to me the impact of the abx on intestinal flora would be minimized this way. Please let us know how it works out.
LNN Posted December 29, 2011 Report Posted December 29, 2011 IV abx is often used in lyme situations where oral abx either aren't tolerated or when symptoms don't improve as much as hoped. And Peg is correct - intestinal flora isn't harmed by IV abx. You can PM TPotter if she doesn't see this. They used IV abx for a time. Good luck!
Dedee Posted January 2, 2012 Author Report Posted January 2, 2012 (edited) Well we started the Lamictal and the Minocycline on Friday. I’m not sure which one it is but something seems to be helping. Her mood seems to be a little more even, with not as many rages. Nothing drastic, but I’ll take what I can get at this point. I am supposed to call the Doctors office tomorrow to see if they are going to be able to get the IV antibiotic so that we can do the protocol next week. I would like to start next Friday, so that we can get as much done over the week-end as possible. I talked to some of my Family about it over the week-end. Probably not a good idea. Just leaves me frustrated. Of course, they think it is an extreme thing to do since she is doing “so much better.” All they see is her sitting quietly on my lap or her Dad’s lap (because she won’t separate) and not causing any trouble. They don’t understand the issue behind her not eating until I am right beside her and eating the exact same things as she is. They think it’s sweet! Umm, not if that is the only way she can eat! Also, they don’t see what happens once we get home......a completely different kid. When you try to explain that one, well then you get the look (or sometimes comments) about discipline, blah, blah, blah......You all know the routine. I am just so sick of trying to explain myself and justify why I am doing these things that seem so “extreme” to everyone. Sometimes I even have to explain and justify to my own husband. I am worn out from it all. I tell myself I’m just going to keep it to myself but then I get some crazy notion that my family might be there for support. I have one sister who is pretty good and open minded, but then she talks to my other sister and then I get the call about why do I think this is going to help, yada,yada,yada. Uggg,....sorry for the rant. This thing has gone on so long that I have started losing all confidence in my own judgment. I so desperately want a better, more peaceful home life for the New Year…... Dedee Edited January 2, 2012 by Dedee
JAG10 Posted January 2, 2012 Report Posted January 2, 2012 Hi Dedee, I've been reading this book by Anthony E Wolf on parenting teenagers....how they (often girls) long for opportunities to engage parents in "discussions" to get us off track and ultimately get what they want, whatever that may be. Sometimes families, particularly females, can get stuck in this dynamic and never grow out of this developmental stage with each other, even when they do so with the rest of the world. A couple of nuggets I took away from his book you may find interesting... 1) Confidence comes from the ability to make a decision and stick with it or change your mind when you choose because you have been provided with information you deem relevant and accurate. (It's ok to change your mind...for the right reason) 2) You do not change your mind because you have been bullied/badgered/judged or manipulated. 3) You disengage from the bullying/badgering/judging or manipulating by keeping it simple as soon as it starts. Repeat your direction or comment for simply what it was. And separate yourself if it persists beyond that. 4) You make effort to let go of the negative feelings you have with the attempt to be bullied/badgered/judged or manipulated so that you are less vulnerable to get sucked into the "discussions." Confidence does not come from perfection. We all make mistakes and tons of them. It comes from owning your decision making power. If you appreciate the conversation you have with Sister B, but Sister C derails it all, tell Sister B..."Do not discuss dd's treatment with Sister C." If Sister B responds..."you know she only loves you and dd....", do not get drawn into that discussion. Simply, firmly and pleasantly restate your directive one time..."do not discuss my dd's treatment with Sister C." Sister B will either keep her mouth shut or not. If not, and she comes back to you with snarkiness from Sister C, this is where you say (and w/o ANY retort to snarky comment)..."I asked you not to discuss my dd's treatment with Sister C. Don't do it." ....and move on. Not a major blow up, not a world war III fight. Confident decision making that can not be derailed to places you do not want to go and will never feel good about. You will feel your confidence come back and so will your family. Jill
Dedee Posted January 2, 2012 Author Report Posted January 2, 2012 Lauren, she did well after her IVIG and did make progress. I would say about 60% recovery. Then with the recent illnesses we have seen regression again. I would love to do another IVIG, but at this time we just don't have the money since our insurance did not pay for any of the others. I am pleased with the gains we made with the IVIG and most of it has stuck. Still, we aren't satisified with where we are and it isn't a happy life for our daughter. Before the IVIG she wasn't even able to go to school, wouldn't take any medication or even take a bath. So we are still way ahead of where we were pre-IVIG, but again, the rages and OCD are still a big part of our lives and I won't stop till I have exhausted every measure to get my daughter back. Just praying this protocol works. Dedee
MomWithOCDSon Posted January 2, 2012 Report Posted January 2, 2012 Hey DeeDee -- Sorry the holidays with family was frustrating . . . I know how it goes! Our families live quite some distance from us, but even though they've tried to be sympathetic, in the past I've gotten plenty of "well-meaning comments" and unsolicited advice from that corner, too. Know what finally backed them off and convinced them that DH and I are handling the best we possibly can? A video, taken at home via my I-Phone, when DS was in one of his worst places! They couldn't believe what they were seeing this A-student, sweet-faced, articulate young man do (fetal position on the floor, waving his hands in the air, wailing, can't speak a sentence, etc.)! I've had nothing but support ever since! I hope the Minocycline is getting to the medical root of the problem, but from our own experience, I can tell you that Lamictal was a god-send for us. It is supposed to help modulate brain glutamate by working via sodium channels at the receptors, and our DS was definitely less prone to meltdowns within just a few doses. But unlike some of the "bigger guns" like Seroquel or Risperadol, it hasn't made him sonambulent or "dimmed" his personality at all. Just made him calmer and more capable of rationally expressing himself and working through the remaining OCD with his ERP techniques, etc. Glad to hear something seems to be taking hold, at any rate! 2012 is already shaping up, and it's only Day 2!
Dedee Posted January 2, 2012 Author Report Posted January 2, 2012 Hi Nancy, Hope your family had a good Holiday. Just wondering if your son is still taking Lamictal? Also, what dose did he start off on and did you ever increase the dose? The Nurse Practitioner says she hopes this is only temporary until we can get the physical issues under control. At this point, I'm just glad to see something helping. She has her on a pretty low dose of 5mg twice daily. Is this pretty standard for PANDAS patients. My daughter weighs 60 lbs. Thanks for your help. Hope you have a great New Year! Dedee
tpotter Posted January 2, 2012 Report Posted January 2, 2012 Hi Nancy, Hope your family had a good Holiday. Just wondering if your son is still taking Lamictal? Also, what dose did he start off on and did you ever increase the dose? The Nurse Practitioner says she hopes this is only temporary until we can get the physical issues under control. At this point, I'm just glad to see something helping. She has her on a pretty low dose of 5mg twice daily. Is this pretty standard for PANDAS patients. My daughter weighs 60 lbs. Thanks for your help. Hope you have a great New Year! Dedee My DS is taking lamictal...has for about 4 years now, but he also has seizures (non-epileptic, and the neuro thinks it may be resulting from PANDAS.) We are positive that it helped, because we took him off to do another eeg, and the symptoms got worse, then put him back on, and he mellowed a little (certainly had a few more minutes to realize that his mood was changing :-0. OK...LLM mentioned that my DS did IV abx, and looks like we are about to do it again. We didn't do minocycline, possibly because he got pancreatitis from doxy (so I'm guessing the doc didn't want to take the risk, since they are similar?) We did use IV clindomycin, and it was amazing. That's when we found out that DS also had Bartonella for certain (the "stretch marks" he'd had for years got dramatically better.) There's no question that we are also dealing with mycoP (he was certainly exposed, and I had a bad case of it off and on for at least 3 years before I was finally diagnosed, and I am still trying to get rid of it.) LLMD is now suggesting IV bicillin injections several times a week, because he has been fighting a strep infection (and possibly mycoP, as his IgG went up dramatically again.) I'm still trying to get that arranged. Alternatively, we will have to do injections, but they are horribly painful, and I think that the gut flora may be better protected with the IV. I'm not thrilled about having to do the IV for an extended period (even just a few times a week,) because DS did develop allergic reactions to 2 abx he had not previously been allergic to (flaggyl and azith), but I did see amazing results in the past, and I do believe it's time to do it again. That is very interesting about the minocycline and IV clindomycin, though. Please let me know how it goes, because DH also has RA, and his doctor may be interested in hearing about this one.
Dedee Posted January 3, 2012 Author Report Posted January 3, 2012 Tpotter - I tried to pm you but couldn't get through.....
MomWithOCDSon Posted January 3, 2012 Report Posted January 3, 2012 Hi Nancy, Hope your family had a good Holiday. Just wondering if your son is still taking Lamictal? Also, what dose did he start off on and did you ever increase the dose? The Nurse Practitioner says she hopes this is only temporary until we can get the physical issues under control. At this point, I'm just glad to see something helping. She has her on a pretty low dose of 5mg twice daily. Is this pretty standard for PANDAS patients. My daughter weighs 60 lbs. Thanks for your help. Hope you have a great New Year! Dedee Thanks, DeeDee! Only 5 mg.! Wow, that really is low, though my son is more than twice your DD's size and age. Yes, he started at a low dose, also (25 mg.) and was on that for 2 weeks before titering up to 50 mg. He stayed on 50 mg. for about 6 weeks and then we titered up again to 75 mg. In the end, over the course of about 3 months we titered him up to 100 mg. (50 mg. morning and 50 mg. late afternoon/evening), and he's stayed there for about 6 months now. I, too, hope it's not a long-term medication, but it has done such dramaticly positive things for his chemistry, we will likely leave it in place for a bit. May the good news continue!
tpotter Posted January 3, 2012 Report Posted January 3, 2012 Tpotter - I tried to pm you but couldn't get through..... Please try again. I have no idea why it wouldn't have gone through, because I hardly had any PM's still in my box, but now I've emptied it all.
tpotter Posted January 3, 2012 Report Posted January 3, 2012 (edited) Ooops...duplicate Edited January 3, 2012 by tpotter
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