peglem

This is what happens to me, usually, when I'm in a stuck place and not sure what to do, something happens to guide my way. This sounds very good and very thorough. Hope you get some answers!!!!

The only thing T&A solved for my child was chronic sinus (presumably) problems- but I suppose that could have been the abx as well.

How nice that you've quickly found cooperative doctors!

We use valium for blood draws- but valerian root may work also. Sometimes (we used to ALWAYS need this) we have to lay her on the little exam table thingy and climb on top of her to get control of her body while a few staff members hold her arm and draw blood. Its always traumatic. We have also used emla cream, but I think its the fear, more than the pain, that is the main problem.

I don't know all of them, but Thyroid Stimulating Hormone (TSH), T3 & T4 are pretty standard and can be run by lapcorp or sonora quest. There are others for thyroid antibodies.

OMG! I think my daughter is suffering from thyroid problems and she seems to cycle from Hypo to hyper. She sometimes tests for high TSH levels, but T3 & T4 are usually normal- but her symptoms are thyroidian (I just made that word up, but I like it). Her doc has given me a referral to an endo... However, we've been through this before, so I'm worried the endo will not treat because the labs are not bad enough, instead of considering her symptoms. I found a good article that I've not thoroughly gone through, but I was debating whether to share it here, because I thought this was a separate issue from her PANDAS. There is another mom on here, who was undx'd PANDAS as a teenager who was helped with thyroid medication even though her thyroid labs were not out of whack. I don't know why I have so much trouble remembering who she is...she has been very helpful to me. I was wondering if medication could be causing the thyroid problem (I think my daughter was neg for the antibody associated w/ hashimotos) and found this... http://www.thyroidmanager.org/Chapter5/5a-frame.htm I see that rifampin affects the thyroid and wonder if that is why it helped so much.

Yup! I'm there too!

Strep does sometimes present with a stomach ache.

I find that nystatin, in addition to the probiotics helps my child.

I've had mixed results with varying zith schedules. Zith has a relatively long 1/2 life- but not a whole week! It is taken up by the tissues, so doesn't stay in the blood stream. Initially on zith, we did a 250mg dose daily for 5 days, then took 7 days off to allow it to go out of the system. My daughter repeatedly got strep on the off days. We finally went with 500mg every other day, beginning with a loading dose of 3 days straight. We do sometimes get breakthrough strep, but strange, w/ positives rapids but negative cultures. But that same thing happened after a treatment course of clindamycin. When I tried weaning the zith, saw increase in behaviors, so for now, we are sticking with the every other day dosage.

Even though I know you are way ahead of the curve here, in knowing what to do about this, I understand your feelings. As long as your fears aren't confirmed, there's a chance your fears are wrong and irrational. Its a little hope crushing to have those fears validated.

Augmentin always gives my child severe yeast problems, but once she finishes the rx and we get the yeast back under control, things get better.

My apologies if I have disseminated disinformation. I only meant to point out that if she can find an underlying cause for her child's tics it may help with treatment, and that PANDAS is only one possibility among many.

The ASO and Anti Dnase just mean that your son has made antibodies to toxins that are excreted by strepA. Has he had a positive rapid or culture for strep recently? Some kids are completely asymptomatic w/ strep, so you may not have known when he had it. If your supplements have improved your son's health or condition then they certainly are not worthless. Many people on this board treat PANDAS with supplements and/or prescription meds. PANDAS is an auto-immune disorder, triggered by strep. There is not a diagnostic test for PANDAS. The diagnosis is usually made when a temporal association is established between strep infections and symptoms (OCD/tics, et al.), and the symptoms improve with the use of abx and anti-inflamatories. There are, however, other things and other infections that can cause tics. Just my opinion, but I believe TS is just a neurological manifestation of an underlying condition- be it infection, injury, or other environmental triggers. If you can identify the underlying cause, (maybe PANDAS), it can help you treat more effectively. There is some very good info on the "helpful Threads" thread pinned at the top of the forum. Might I suggest, for starters: http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305 http://www.latitudes.org/forums/index.php?showtopic=6265

What is LDA?

My daughter did not get her 1st prednisone treatment until she was 15 years old and she was ill for at least 10 years prior to that.

Yes, share. I think it is important to share experiences good and bad, with the caveat that this is not medical advice. Isn't the whole point of this forum to give and receive support and ideas from others?

Penicillan was the 1st prophylaxis we tried. It was years ago so I don't remember the dose, but it was lower than treatment dose. It didn't help so we moved on to stronger abx at higher dose. I guess the risk/benefit ratio depends on how debilitating your child's condition is and what are the other options. We have very debilitating symptoms and I think abx is safer than psych meds (which we've not been successful with in any case).

Tapering off steroids (with the courses longer than 5 days) is supposed to prevent rebound because it gradually allows the body to resume its own production of steroids. We've only ever done the 5 day bursts, 4 of them. 3 of those gave us moderate improvements, especially in the weeks following. The first may have given us some improvement...we were doing a lot of new things at the time and she was REALLY in a bad way. It at least didn't make things worse. For us, its a tool. If we see some improvement it confirms that the current problem is probably immune/autoimmune related. I think even we can learn from the effects of medication- what works and what doesn't. It gives us clues as to what is going on as much as a lab test.

I hadn't noticed a grumpy tone either, but completely understandable if you have one! This illness takes a toll on families. If you feel especially grumpy- just make a grumpy thread. We'll listen and commiserate. Sometimes I come here on a bad day and read about other people's victories or successes, and though I'm happy to the core to know there's been a relief of suffering for somebody, I just can't help feeling a little down that my own child is still suffering. But, when we have a period of relief and I get to post that- everybody celebrates that too, even when their own children are not doing well. We understand...no need to apologize.

Awwww! You guys always make me feel like I have support and people who understand! Tired of spelling correctly kind of made me smile when I wrote it- I'm usually a bit anal about that, but realized I was just to tired to figure out how to spell it right! I haven't scheduled Allie's next IVIG yet, but I'm meeting with the immuno in a week or so, so we'll talk about it then. Part of my confusion here is that when I tell the immuno the concerns that the rheumy has, he disagrees that the IVIG can cause that. Like the rheumy thinks the antihistone antibodies are coming from the IVIG- the immuno says they remove auto antibodies. But I tend to think the rheumy is influenced by her department head (who we saw when he was the only show in town and was one who thought I was crazy and putting my child through unnecessary treatments to feed my own need ). She was so weird the last time we went there- talking about giving Allie prednisone "willy-nilly" (the pediatrician had prescribed to see if the hand problem was autoimmune) and saying if the mri doesn't show arthritis then its all behavioral and maybe I should just go back to the PANDAS specialist. (Dr. L, who really just said they should treat her immune deficiency). She did not listen when I told her I thought the hand thing looked muscular this time- I didn't think it was arthritis (which is why I went to the pediatrician, instead of her). I think maybe that has been straightened out... Dut, The ped. is considering Hashimotos and I'll go get that dang blood test this afternoon. Wanted to see if the clonidine would help first. Never heard of Prasad's- I'll look that up.

Mary, I can hear you hoping cautiously. Sending prayers for healing-for good this time!

Thank you for that. I feel somehow validated.

I'm not even sure what the heck is going on with Allie anymore. We've been getting IVIG every 3-4 weeks since March 2010 (1.5g/kg) She's been on 500mg zith every other day since sometime in 2009. Since March 2011, she's just had strange stuff going on. In March she had this thing that sorta seemed like lupus- tested w/ high TSH once during that, only to have a normal TSH w/in a few days of that. Went through weeks of +RST w/ neg cultures. Was dx'd by the rheumy at that time as having strep reactive arthritis. When she recovered from that (not really recovered until late April) Got this weird hand cramping thing at the end of June that looked more like it was muscular than joint related- recovered w/ a 5 day steroid burst and lots of magnesium. Still, if I lower her magnesium supplement, it starts coming back. But throughout all of this- she has this thing where she is like a little furnace- just emitting heat like crazy, stand w/in a foot of her and its like you're next to a campfire. Its not constant 24/7, but goes through weeks of it getting pretty bad and then better (but not gone). For the last few weeks she's been in furnace mode w/ constant hunger and is either super hyper or super lethargic, sprinkled with bouts of shrieking screams and smashing her head. She wakes in the middle of the night hungry even though I make sure her tummy is full before she goes to sleep. Her pediatrician last week asked me to try a 3 day trial of clonidine (to help her sleep and to reduce the screaming adrenaline surges during the day). I did it over the weekend- still wakes during the night, and did reduce the screamies-but lethargy was so increased that maybe she was just too tired? I've experimented this week w/ halving the doses in the daytime and that seems better. So, I'm thinking thyroid problems- seems to get worse the week prior to menstruation. The rheumy thinks we should quit IVIG- she thinks the problems with her hands and the lupus like episode may be caused by the IVIGs. (Allie has had elevated histone titers which would indicate medication induced lupus, but she is not on medication that is known to cause lupus). I'm wondering a few things, if anybody knows. She seems to be hypermetabolizing...So, could her thyroid cause her to burn through immunoglobulins faster? I just don't know whether we should try a break from the IVIG or not...will we be able to get insurance to approve a restart if we need it again. I'm just at the point that I don't know what is going on- so would love to reduce variables to get a clearer picture, but at the same time, I'm worried that she'll take a huge dive. I have a lab order for thyroid testing...should do that soon- just dreading doing the blood draw when she's so unstable its very,very difficult. Then there are the fluctuations in OCD. She's developed some new ones: the door on the medicine chest must be open so she can't see the mirror. I'm not sure if this is about the mirror or something else- she doesn't seem to avoid mirrors otherwise. Anybody whose kids can explain had something like this? Fixations on things (causes lots of anxiety, but can't break away from the object or trigger) is her biggest thing. The good news is, finally have the school recognizing this instead of trying to use ABA to fix her autism. They are really getting on board with helping her deal with it, which is so good because I cannot get a therapist that will help her with her OCD-I called every single one that is on our insurance and they all said they do not think they'd be able to help her. I just feel like I'm becoming this tired old lady- tired of searching for answers, tired of looking for doctors, tired of trying new things (not much faith in anything helping), tired of there always being something new to deal with-just when you think you've finally gotten a handle, tired of tests...and tired of just being tired. Menupause (tired of spelling correctly, too) is upon me and I've got horrible hot flashes as well. Not sure why I'm posting this...just need some understanding and well, frankly a pity party might not be such a bad idea right now!

I think the best abx varies from child to child. If I were you, I'd start with whatever worked last time.