BeeRae22

I'm not sure, but I don't think it's recommended for kids (or anyone) to stay on Mino for extended periods of time.

Yes, this is our first trial of minocycline

Well, I guess I spoke too soon she wouldn't even try anything yesterday..... To those above, and those that mentioned it previously though-- what, in your opinion(s), will Rothman be able to do, that I'm not already doing??? Thinking about picking up our lives and going to Florida for treatment is overwhelming, but I'm wondering if it's something I should be considering or not. We are currently going to a well respected and known llmd/pandas/pans doctor, who is treating her with abx and we will be going on to trying steroid burst next, I can't get ivig covered by insurance right now and definately can't afford the risk of trying and having it not work. She is going for CBT/ERP twice a week at The Yale Child Studies Center- OCD clinic. What else is there???? I am going to try to talk to Dr. L today if I see him-- I don't know what else to do. If anyone can fill me in on what Rothman might have to offer that is different or better than what I'm doing, than I'd definately check into it more! Dd needs to return to health and eating. 8 months is too long!

I hate to speak too soon, but dd (who has not eaten a meal in almost 8 months now) had a little victory tonight with food! After CBT today (session 12) we stopped at cvs to get her a little "prize" for "being good" (this is debatable! She had a rage episode, but did cooperate eventually) about having bloodwork done this morning. At a previous CBT session her therapist had her eat some pirates booty which she ate, somewhat willingly (a few pieces only) with a lot to drink, and quite a bit of effort. So anyway, I spotted Cheetos puff corn and got her a bag... Well, tonight, wow! She ate half the bag, with nothing to drink! And then at dinner, she had 3 (gerbil sized) bites of pizza, and didn't even pick it apart! This may not sound like much, but the puff corn and these 3 bites was the most food she's eaten at one time in months! And the only solid food she's had has been grilled cheese soaked in chicken soup broth (to the point of falling apart) and she has not varied from that AT ALL, so this was HUGE!!!! So, here comes the question..... Today was day 6 of minocycline. And today she had an extra long CBT session (12th session, was an hour and a half long)-- which has shown 0 progress to date. (She has "eaten" a French fry-- note the word eaten in quotes--- and a pretzel stick once with the therapist in the past, but has not shown a bit of progress at home, at all. So, I'm looking for opinions! Is this.....a). A fluke . The CBT C). The minocycline kicking in Or d). A combination of the above?? I'm sure I'll never really know, and if the progress continues I'll be grateful for whatever it is, but what does everyone think??? We had a LOT of bloodwork done today, retesting and checking. I am really anxious for it to come back.... The only thing we've found so far is myco p, but we suspect Bartonella also.

Ugh... The comments are just ignorant, and awful. I thought the article was a little rough as well, and found the reference to "the blood test for PANS" very frustrating! (Okay, I had to deal with a rage episode with dd this morning about the slew of bloodwork we had to do! I may be a little sensitive to the issue!).

LLM, I am very interested in this for several reasons, but not sure where to start or proceed. First- would the 23andme test indicate the gene re: mold?? I've been considering doing this test anyway to test for MTHFR but quite frankly, I'm not in any position to spend a penny more than I have to for anything at this point, and it would seem to me like the MTHFR is going to be an unlikely suspect in what's been happening with dd, at least as a root cause anyway. We've started with folate drops just to "test" her folate reaction/theory anyway, so I'm not sure the 23andme test is going to be all that useful. (We are only up to 2 drops a day right now-- I'm going to dose her with more abruptly in a day or 2 to see if she reacts, but we just started minocycline 4 days ago, so I wanted to watch that first for changes... Nothing so far though:( ). Next- we have mold in our attic for sure. Our roof is shot and we are in the (LONG) process of decision making about replacing the roof or putting an addition on our house. When we replace the roof, we will be tearing off all of the old (moldy) plywood, meaning really replacing the whole roof, not just the shingles.... But in the meantime, do you think this could be hindering dd from treatment?? How can I find out? Any thoughts? I feel desperate to find something to help my daughter. This is crushing me as a mother that I can't do anything, and all these meds, and therapies, appointments, blood draws (another one tomorrow am that I haven't told her about yet) are just wearing on our whole family so much. And my girl is sad, that's the worst part. I can't believe how long it's been, and that we're still here in the same position, and nothing is making much difference. We're going on 8 months now, and she still isn't eating.

Not that long ago, someone commented about something they used to relieve or treat for skin picking and I can't find it now? My dd has been picking at her skin all the time lately, and it makes me crazy! Anyone?? Thanks!

Interesting that you mention that, because the person that pm'd me telling me about the great results she experienced regarding Mino and symptoms (eating being one of them) also said they didn't maintain after stopping abx. From my perspective though, it would be awesome to just have something work at this point!! I am concerned already about using Mino though.... She's been complaining of "not feeling good", has bumps on her cheeks (which if course she picks at, so they now look much worse than they would be) and obviously worried about teeth staining..... Sigh. But I'm glad to hear that it took you a few weeks to see improvement... (Not for your sake, but you know what I mean!) -- I keep hearing "48 hours" and it's so hard to wait longer when you hear people say things like that!!!

Friend had a great suggestion, and it worked like a charm! Chocolate syrup! Who knew?? I let dd mix the contents of the pill in it, and she slurped it right up! Now if we could just see some results from the Mino..... Almost 48 hours now.

I'm interested in responses to this as well.... My dd, 8 yrs old, just started Minocycline and has some acne like bumps on her cheeks.

What's "the cup"? Doc says Mino is preferable to Doxy for kids-- less nausea and less sun exposure issues.... Local pharmacy is ordering me a bottle of compounding flavoring in case I want to buy it. I might just try juice concentrate first.

Mino doesn't come in liquid form, unless you have it compounded. Not sure, but I think doxy is the same- and doxy has higher instance of nausea and sun exposure issues, so Mino is preferred. Mino is usually only prescribed for 8years and up. I wonder if I should maybe try a concentrated grape juice or something like that? Probably just as useful as syrup.... Still going to taste like "rear end" as her doc would say! but we'll try to figure something out!

Thanks... I will check into that! Dd won't eat, never mind swallow anything!

That's great!!! I know what you mean.... My daughter's school has "town meetings" and she just got selected for the first time, to do a little dance routine in one of the meetings Monday morning... Couldn't have come at a better time- she hates school now, but she's looking forward to going in on Monday! I'm so happy for her, and for your son! We do need to celebrate the little things..... The happy moments should command just as much attention as the rough ones!!

Dr already checked into it, and it's not going to work he knows that this is how we're doing it, and didn't mention any "burning"? She didn't like the taste, but didn't seem to have a problem with any sensations from it that I know of. Hopefully that won't be an issue

Yes, meds aren't negotiable She understands that, but doesn't mean she's going to be happy about it..... And she is terrified of choking, which is why she doesn't eat. She won't even lick her lips, let alone swallow a pill.

We just switched dd to minocycline, and I'm having trouble getting it into her. Getting it compounded was cost prohibitive, and she won't swallow pills. Since she doesn't eat (anything) I can't mix it into food. My only idea so far has been to open the capsule and mix it into a tiny bit of water and give it to her in the medicine dropper (like I give the other meds to her). I have no doubt that it tastes terrible! She drinks Boost, but I don't want to risk altering that at all, since it's what she lives off of and I can't take a chance of her rejecting it, or suspecting that I'm trying to sneak something in, or trick her in any way... She's had it 2x this way, and really complained and got upset about it and I suspect is going to be more and more resistant to it each time... Any ideas? Maybe if I diluted it in a full cup of juice it wouldn't be bad, but then I'd have to count on her drinking all of it.... And if it tastes "off" than she probably wouldn't drink it all. (This was why I tried the tiny bit of water, thinking that at least it was "quick" and over with).

Thanks.... Here's hoping!

We just started minocycline today, and will be giving that several weeks and then may try a steroid burst after that.... We may try to pursue ivig, but definately can't pay out of pocket, and with neg strep results it sounds like we likely won't be able to get it covered by insurance.... Even if we had positive strep, it's unlikely that we could get it done Leckman's colleagues seem to think that the results from the ivig trials were mostly inconclusive, and that the patients that showed improvement didn't have long lasting results either.... That's not to say that I wouldn't try it!!!! I'd refinance my house to help my daughter, but without more assurance that it would work, I can't justify the high price tag to pay out of pocket

Just curious.... Did you get this covered by insurance? Or pay out of pocket? I'd love to do it, but I have state insurance and I don't think they'll take it... Sorry to bust in on your post! I know you're hoping for more productive comments! Best wishes...

Dr. M just recommended that we do the 23andme test on dd.... And also recommended putting it through genie he then said if I chose to do this, that he would go over the results with me, and could put me in touch with parents who have a lot of experience with supplementing according to the results-- I'm keeping you in mind when I get my test results back I really feel like I s--k at all of this I'm lucky if I can remember to give her all the meds on time (just added different drops, and another antibiotic-- sigh) and I'm not sure I'm competent in tracking her meds and behaviors. We're now stating our 4th antibiotic, and 4th kind of drops, and 10 sessions of CBT/ERP so far, and no real changes overall..... Therapist is pushing ssris, I'm still very reluctant to go that route. From the research I've done, it just doesn't seem effective enough to make it worth a shot. And I Am of th opinion that 8 years old is just too young to start antidepressants, especially considering that my dd was perfectly fine until last October. And ds has pneumonia right now! Ugh... I'm tired!

Thanks for the link... Funny that you just posted that, because about 2 minutes ago, my daughter's CBT therapist just mentioned it to me, and asked me if I'd watched it!

Again, not trying to dispute anything, or tell anyone to ignore anything. Just respectfully suggesting that anyone in that situation proceed with caution I've certainly been fighting the fight with my daughter's pediatrician, and with the office where she gets CBT, and am 99.9% convinced that my she has Pans and/or bartonella (as is her Pans doc) -- and I'm not suggesting that it doesn't occur in siblings, or run in families. I guess I'm just asking anyone in this situation to take a minute and try to view things objectively every once in awhile. Expand your research and consider all possibilities. I do also worry about my son....trust me. But I try to be careful about what i say around him, because he is a kid, and kids are partially products of their environments. The mind is powerful, and easily influenced. That's all I'm saying. best wishes to all above, all that all of us want is for our kids to get better, and I do enjoy this forum so that we can all a support each other and bounce ideas and thoughts off of each other in pursuit of our kids health and happiness

Or did you mean cannabinol? I've been reading a bit about that.... Please elaborate on your use and outcome if that's what you meant?!?! Where was your son with eating before and after????

Like I said, I'm not suggesting you ignore anything.... And you're a mom, and I completely agree that a mother's instinct regarding her children is usually on! I guess I'm just in an odd place with my own thoughts lately too. Researching ocd in conjunction with reading some of the posts here and going through what we've been going through with my daughter has left me with a lot of conflicting views on it all! OCD, by itself, is such a complex disorder that isn't completely understood. It can present with many symptoms and has a high comorbidity rate with other anxiety disorders, depression, etc. and is often difficult to differentiate from other coexisting disorders. If you research some of the scholarly articles on OCD and Pandas clinical trials there is a lot of conflicting information there too. My comments weren't made to be judgemental in any way, please understand that. But I do think that everyone on here should not only keep an open mind, but should be objective and use critical thinking when posting and reading others posts as well. Best wishes to you and both of your children.... I can't imagine having 2 children with this disease, and I hope that's not the case for you.