peglem

If you are talking about IgG titer testing for infections-IVIG can give false positives, because there is no way to know if the antibodies in the serum are donor or self made. Really, that soon after IVIG there is no use trying to test for infections w/ IgG titers- the results will not be reliable. My daughter gets IVIG frequently (every 3 to 4 weeks) and its sometimes frustrating that you can't test for infections via IgG levels. I'd think testing for bacterial DNA would be the only way to identify infections that soon after IVIG.

The fact that you get tic reduction from abx would seem to suggest that the tics are connected to a bacterial pathogen. I don't think its necessarily one or the other. Tourettes is a description of a neurological manifestation- it can be caused by immune dysfunction.

Mycoplasma is a known PITAND trigger. Its very common to have more than one child w/ post infectious "symptoms." I wonder, did you notice your son's tics increase or change when your daughter had strep? Its also very common for PANDAS/PITAND kids to flare in response to exposure, even if they do not get an infection. (its the antibodies, not the pathogen that cause the problem.) Just my opinion- I don't know much about tourettes, but it seems to me that tics are a symptom of some underlying condition and finding the underlying condition is key- be it allergy, autoimmune, injury, etc.

The only thing I can suggest is to try to find a pdoc who is a DO (doctor of osteopathy). I have found that for some reason they are better at listening to patients than other docs. I have been through the ringer with psych docs.

Fish oil gives my daughter awful gas and that discomfort makes things worse. She does very well on cod liver oil, though.

I don't understand the team's interpretation....isn't PANDAS post infectious encephalitis?

If you really think they will not listen to you, then I wouldn't do it. What is their plan/purpose for hospitalizing her?

My daughter has been getting IVIG every 3 to 4 weeks for over a year. Strange how each on seems just a little different. Last Wednesday, her nose began running @ 1/2 hour into the IV, with VERY productive sneezes! This lasted for about 2 hours (the infusion takes about 6 hours) and abruptly stopped and has not returned since. Anyone ever seen this during IVIG?

What do you do when the ocd interferes w/ sleep? This is very common w/ my daughter. I will tell her that ________ is getting in the way of her doing what she needs to do and take away whatever it is she is stuck on. A huge meltdown ensues, but when it is over she can sleep. I know this will not work for obsessive thoughts, but if she is stuck on objects and I can just accept that we will get through the meltdown (severe aggression)...I can get her to sleep. Sleep always seems to improve overall health.

They should be able to do a culture to grow out and identify whatever it is. Wonder if it could be yeast?

My child is more the punching, pinching, biting type, but I think it would be hard to say what is the underlying cause. I suspect most of her aggression is due to either PANDAS symptoms or yeast.

I wonder if the vaccine can cause PANDAS flares? I hope they will test for that and make sure that the vaccine itself does not cause the autoimmune reactions that GABHS can cause.

I think you're supposed to take one dose/day. I'd call the pharmacist to check.

My pediatrician runs ours- we just do it with routine bloodwork.

We check liver/kidney function about every 6 months, more frequently if she is on something that is known to be hard on the liver (like rifampin or diflucan). So far no problems. Have been on abx for @ 4 years.

My heart aches for you. I want so badly to do something to help, but I don't know of any resources in Australia. Do you have DAN doctors there? (Defeat Autism Now)They will most likely know about PANDAS, although they probably will not be covered under insurance. My daughter was just gaining lots of speech at age 6 & 7 (she's developmentally delayed) and lost all of her speech at age 8, much in the way you describe- all speech attempts turned into "puh, puh, puh"- a sound she had previously been unable to articulate. I know its heart breaking. So sorry you're going through this.

It IS possible that your other child's strep is triggering behavioral flares because it is the antibodies that cause the PANDAS behaviors and not the bacteria itself. So, say your son developed PANDAS from one of his own infections. His immune system stored "memory cells" to rapidly make antibodies to strep whenever he is exposed so that he will not get actual infections- exactly the way the immune system is supposed to work to protect us. Only in this case, those antibodies are interfering w/ neurological functioning. Also, since your son is no longer getting actual strep infections- he's not apt to see a rise in strep titers either. BTW, lots of PANDAS kids are triggered by exposure w/o developing infections. My advice would be to seek out a doctor who is experienced in recognizing and treating PANDAS. In looking at the info you provided about your son's course, I'm concerned that he's escalating- sounds like each flare is a bit worse than the one before it...with treatment, he may be able to avoid "the big kahuna"

Several years ago (6 or 7) I had 2 children (separate incidences) who had injuries requiring stitches. Both needed a tetanus shot, but I could only get the Td (tetanus/diptheria) in the emergency room. And those nurses were very, very snotty when I asked if they had just the tetanus w/o diptheria. So its one thing to say, "Just get tetanus and nothing else." and quite another to find that available.

Here is a link to the trial info: http://clinicaltrials.gov/ct2/show/NCT01281969?term=pandas&rank=1

Is she tired like sleepy, or tired like lethargic, or both?

Sooo, are there supplements that help regulate blood sugar levels? I think that perhaps, when my daughter just freaks out w/o any obvious provocation that its because her blood sugar gets too low and her body overcompensates by flooding her bloodstream w/ glucose.

Wondering what your thoughts are here? Why do you think this? I've been wondering how the hormone cycle affects the immune system. I should clarify. I meant to say, if we can get their pandas under control prior to menstruation, I suspect we may have a better outcome. I only say this because of what I have read about lingering symptoms into adulthood with children who were not treated until they were older/teens. This theory is only conjecture on my part. Dang! I was hoping you had some studies or something! There just seems to be so little difinitive info on how estrogen and progesterone affect immune function. They know that it does have an effect. I do not want my daughter on birth control for birth control, but if it was clear that controlling for hormones could help, I might try that out.

I don't think menstruation made my daughter worse- but, we did not really have meaningful treatment until that 1st steroid burst, either. The menstrual cycle w/ hormone fluctuations does add another variable to figure out- ie..is it a PANDAS flare, or PMS, or??

Wondering what your thoughts are here? Why do you think this? I've been wondering how the hormone cycle affects the immune system.

Hubs side has lots of type2, and one niece on hubs side got type 1 when she was @ 10. I do think Allie has blood sugar swings, but hard to measure blood sugar when the needle sends her in to fight or flight (which floods the blood with glucose).