peglem

Why does he feel he lost it? I know you weren't there, but was this an all out rage, or more like a tantrum? Make sure Danny has a plan and some strategies in place for what to do when he starts to lose it. We (and schools) are great about telling our kids what they cannot do, but we need to make sure they develop the skills to handle their emotions and self regulate. I agree you should stay the course w/ Dr. J, until the other is in place.

Maybe this can help? http://www.medicinenet.com/stool_color_and...es/symptoms.htm

Its so wonderful to hear your good news! I hope you don't feel like you've been subjected to that on this board! My daughter does have the positive strep connection, but I'm not at all certain that strep is the totality of her problems. I've approached her pediatrician about checking for myco and lyme. He says that with the abx that she's been on they would likely turn out neg. But, looking back on treatment he's done for "strep" I think he's had it in the back of his mind to treat in a way that would take care of not only the strep, but any other possible boogey monsters that may have something to do with her presentation. Honestly, it has been hard enough to get specialists to help based on the known strep issue- they think we're crazy enough already. If we started throwing a bunch of other controversial possibilities in there, I think we'd be dismissed entirely. So, I guess I'm kind of blessed to have the strep issue and a pediatrician who will go to bat for us based on that. At the same time, I have a lot of empathy for those whose issues have other pathogens at the root.

Leaving the line in was great! Hooked her up so easy! Now I can't wait to get her a port! She's decided to do this thing where she says she has to go to the bathroom and then won't go back to the room. She plopped down in the hallway, refusing to go back to her room, which was directly opposite the bathroom. The nurses just said, "Okay, you can stay out here in the hall if you want, the infusion is still going anyway." A few minutes later she got up and went back to her room. Heh, heh! She's feeling fine, though! I'm Rhneg, too.

I actually didn't find out about that until it was over and done with and the pediatrician took care of it- but it was scary to me, because had we not had the support of our pediatrician, this could have been pursued with child protective services. There have been professionals out there who disagree w/ the health choices we make for our child and who feel strongly enough about what they think is the "more right" thing to do that we could easily end up with a real struggle on our hands. We'd ultimately win, I think, but can not imagine the trauma to my daughter if someone decided she should be removed from the home until they can determine if it is safe for her. Especially since those who disagree think she needs "chemical restraint" to be safe. If not for those fears- it is so ridiculous to me that anyone would think something like that, I'd think it was funny, too.

Are you pregnant? The only time you have to worry about this is if you are Rhneg, and pregnant or Rhneg and receiving RBC. Rhneg people do not have the D antigen on their RBCs, so if that antigen is introduced into their system, it is recognized as nonself by the immune system and they get an immune reaction to that antigen. Rhpos people don't have a problem with this at all, since their immune system recognizes the D antigen as self and doesn't attack it.

My son is having his 1st IVIG on Wed. It is a high dose but we are only scheduled for a one day infusion. This scares me. Shoulder it take two days. How do you know when it is time for anther IVIG. What symptoms do you look for? Our immunologist is doing them every 4 weeks because of both immune deficiency and PANDAS, so we are preventing symptoms, I guess. I hope your child does well w/ the one day infusion. I think it will be okay for my daughter because she has done well with infusions so far and has had no problems when they increase drip rate. On the 2 day, the actual drip time is about 3 hours each day. I'm thinking drip time on the 1 day will be about 5 hours. I was pretty apprehensive about the 1st IVIG, but I see now that the nurses really know what they are doing and they monitor the procedure very closely.

Oh, sorry to hear this, sorry that you have to go through all this crap when all you really want is to help your kid feel better.

Okay, that was on the other thread, and I remembered it from there, but then reviewed this one and got all confused and edited my response...

I don't know. At the lower dose we were doing every 3 weeks, and when the decision was made to go with a higher dose, it was ordered for every 4 weeks. Frankly, I was so floored that they were willing to do the higher dose, it never occurred to me to ask! But, isn't the half life of the IgG @ 4 weeks?

Did I say every 4 weeks?

I don't know what your relationship w/ her is like but how about something like this? " I consulted with Dr. B last week and he is willing to try the higher dose of IVIG for Danny. I'm gonna try that for his August infusion. I feel like I owe it to my son to give the higher dose a try and see if it makes a difference."

Aye, yi yi- it was very difficult to get the IV port in today! But we left it in for tomorrow, so that should really help. My daughter has hypermobility in her joints and even with 5 of us in there- could not hold the arm still enough to get a line in! Finally brought in ultrasound to locate a vein above her elbow. Once we got the line in, everything went great! The immunologist has decided to continue every 4 weeks at this dose (1.5g/kg), they are going to place a port under her skin, so we won't have to do the stick every time, and we're going to try to do the whole dose in one infusion (one day/month instead of 2).

She already knows that you have not been entirely comfortable with the lower dose, so hopefully she'll be curious to see if the higher dose is more beneficial for your son.

I was going to post exactly that- guess you beat me to it. I'm thinking if the chiari and the symptoms your child has improve with the less invasive procedure- then you'll know and it will make your decision less complicated. And you do have my prayers!

It means if they test positive a few months after treatment 1) The treatment was not effective in clearing the infection, or 2) the child has been re-infected or 3) The child is a strep carrier, and clearing that will take more aggressive treatment than just a simple course of abx. But, again, if she is talking about blood testing for titers- that should come up positive a few months out because it takes awhile for those titers to subside after an infection. A suprisingly large % have no rise in titers with an infection...so hard to judge by that. If she is talking about the rapid test or culture coming up positive- she is either ignorant or trying to make you go away! And, most doctors do think that if the child is an asymptomatic carrier, the strep is not harmful to them and should not be treated. There is no research to back this up- it is an assumption, I think because no symptoms=no illness kind of makes sense. On the other hand there is scant research to indicate that carrier state is not benign. Personally, I think if a doctor is witness to evidence that neuropsychiatric symptoms worsen w/ +strep test and resolve w/ abx treatment- they would be grossly negligent to not treat for positive tests. But, there is a lot of politics in medicine, and some doctors will follow whatever "protocol" or "policy" they were taught to use, regardless of whether it is really what works best for the patient. I've had 2 practitioners who flat out told me they would not "risk their careers" to treat my daughter appropriately. 2 others have contacted my daughter's pediatrician questioning whether I had a case of meunchausen's.

It was only 1am on this end of the world!

can i ask why the rifampin/aug combo??? what is the thought on rifampin? did you see that is should be taken for 3months....i don't know if that is only for tb...but if you take intermittanly you are more suseptable to drug resistant tb.... i don't know if that only applies to if that is what you are treating.. When I brought the doc the article (compliments of Buster) on carrier state not being so benign, that's what he decided to try- thinking that she was a carrier, reinfecting herself. She had just entered a huge regression following dental work and was getting strep in between dosing of zith when she was on a 5 days on, 7 days off schedule. With TB they use it for months at a time, but it is known to cause liver problems, so her pediatrician decided to be cautious.

So? How'd it go?

I believe this article has been discussed here: http://www.latitudes.org/forums/index.php?...amp;hl=ny+times

You would not have to increase the drip rate for higher dose- just the amount of time it takes for the procedure. Lower dose IVIG is pro inflammatory, higher dose is anti-inflammatory. What abx is not working for him? Have you tried higher doses of either zith or augmentin XR? What helped my daughter alot when she had exacerbations while on full strength (treatment dose) zith, was to switch to a 2 week course of rifampin+augmentin to clean out intracellular bacteria, then go back to the full strength zith.

What has worked well for my daughter, twice now, is a 2 week course of rifampin+augmentin. The first time was several months b4 IVIG, the second time was after her 2nd low dose IVIG. She was in very bad shape both times, but w/in a week, both times, she dramatically improved- especially once the yeast (augmentin makes her yeasty) was cleared w/ diflucan.

Allie has been on 500mg zith every other day, roughly from December '09. She had a break for 2 weeks in May, when she went on rifampin/augemtin, but then right back to the zith at the same dose. The zith should help her keep from getting an infection, but not necessarily keep her from making antibodies. In retrospect, I think this slight episode may have been PMS. She's doing good again, but Gma is only a little better. We do another IVIG tomorrow and Friday.

Well, I think its great if the abx and Gaba Plus keeps her in remission. I''ve been doing a lot of reading on taurine lately, and I think its more than a bandaid...really amazing stuff- anti-inflammatory, antimicrobial. There are even studies of it being used intravenously instead of chemo to destroy tumors in some kinds of cancers-w/o damage to healthy tissues. But, also, there are no guarantees that IVIG will put an end to your daughter's PANDAS. I tend to just hold steady when my child is doing well.

From what I've gathered on this forum, it seems to vary widely from person to person, as does the success of prednisone.