peglem

Oh, I'm so happy for you guys! What fantastic news! And God bless these doctors who have the human decency to help our kids!

Absolutely! I'm all for tearing the "spectrum" apart. As soon as you find cause of the autism symptoms-get that sucker off the spectrum and treat it for the root cause= call it the disease that it is! Looking forward to the day when presentation of autistic symptomology becomes a matter of investigating the possible causes so it can be treated properly.

So, after 5 days of prednisone and keflex (have 5 more days on that), there is not much improvement. We are still checking for lupus...but if it is the drug induced kind (which would be sweet because then you just remove the causative drug to reverse) then, I think her zith is the only thing that could be causing it. This is just so weird. Contacted her psychiatrist yesterday, who said she did not think this could be caused by going off lamictal. So her ped asked that we go ahead and get the labs drawn, which we did yesterday. Wanted to wait till her next IVIG and save the trauma of the venous blood draw, but we got her through it, only because we have a wonderful phlebotomist who is kind, patient and understanding (her son has issues). My hope is that we are dealing with separate issues of photo-sensitivity and something else, but not lupus. In looking through notes and posts I have made in the past- I see that we were dealing with similar symptoms in the past-just not as pronounced and obvious as they are now. Thanks so much for your prayers and please continue them...pray for her doctor as well!

This is so helpful!! Thank you for taking the time to spell out everything you've done and are currently doing. My daughter is in K now, but we (finally! by ourselves, with no help from the preschool) identified sensory issues when she was at the start of pre-K in the last school year. She could have really, really used all the things you described. It's no wonder I have PTSD around the separation issues...I didn't have any support either and things just got worse and worse. I'm so glad you had those kinds of supports in place for your son at such an early age. I did have the thought this morning, before I read your post, that many of her issues right now are ones that are unresolved from years of undiagnosed sensory issues and really horrible seperation anxiety due to the SPD. I believe, at this point, that the only reason they have surfaced again in the last few months are: a. Because she was snowballing into a major PANDAS episode (totally understandable) ...and then, as the abx and ibuprophen and Enhansa have been clearing the PANDAS symptoms, b. As a learned behavior from recent PANDAS and all those years when we had NO supports in place. Your reply today, and this entire thread, has helped me realize what we need to do next -- as we get supports in place for next year some of it has to include some kind of therapy (either from the SD or out of our pocket) and maybe a more structured, predictable routine for drop off with the school personnelle (sp?). I've felt so helpless over the years about this separation issue that, although I've been extremely effective in other areas, I've just totally dropped the ball -- Until now, that is! Thank you, thank you! Malke If your child needs therapies, and not just accommodations, you'll want an iep. 504s are for accommodations that can be made w/o bringing in special services.

Okay, deep breath. I know and understand and have lived that sick feeling of "here we go again." So sorry. Try to focus on the fact that your child is able to identify onset and can give you a heads up before it gets too bad. And you DO know what to do! Prayers for a speedy resolution! You'll get him back!

http://emedicine.medscape.com/article/136471-overview lots of info on different immune problems and treatments Still nothing I can see about IgE deficiency.

Came across this when I was looking into drug induced lupus: http://cueflash.com/decks/Antibiotic_Pharmacology Thought some of you might find it useful.

I really appreciate the prayers! The last thing her doc said, as we were walking out the door is, "I'm gonna have to pray for this girl." She had a lot of trouble sleeping last night. Turned off every light in the house, including the porch light. Was moaning in her sleep. She got up @ 2:30AM and insisted I make pancakes. I gave tylenol and she went back to sleep @ 6, then slept til 9. Felt very warm when she got up. Gave more tylenol and had to make some more stupid pancakes. Her hands are still swollen and sore, the facial rash is still there. But she seems a bit happier. It sucks when she can't use her hands because she really needs them to communicate.

I love this article and the last, summary paragraph leaves me with a sense of hope! Thank you!

About a week ago Allie had that one or 2 nights where she seemed afraid of blankets- that passed, but then she started with this thing where she gets "claw hands" or her fingers are very straight with a contorted thumb...but kind of frozen, like she can't move them or it hurts to move them. Its been getting progressively worse all week. Ibuprofen helps a little. She also has the facial butterfly rash back, and this time its sand papery. She's just not feeling good. Her behavior is wonderful- very very few and minor incidences of SIB or aggression. So, we went to see her pediatrician about it today. He sent his student in 1st, and I know she's thinking lupus (me too, but trying not to think lupus). Ped came in and decides we'll start with treating for an infection under her skin (possibly staff?). So he prescribed keflex and prednisone. Says we'll be able to tell if that's helping by Monday, so I'll call to let him know then. But, he's ordered labs to check for lupus...we'll get them done next time Allie has IVIG in a couple of weeks. I shouldn't be scared- I know God has it all worked out, but part of me is very scared. Prayers?

ANA are antibodies that attack the cell nucleus. Anti neuronal antibodies (at least the ones Cunningham tests) are antibodies that activate receptors on the neurons.

Benedril does that to my daughter. I'm finding as she heals her reaction to medication is changing and I'm often at a loss what to do.

I don't know. There is little known about the significance of the individual subclasses. Did you get a baseline of the subclasses before abx?

I'll give it a try.

Has your child been on prednisone recently? I wonder too, if abx can bring down the total IgG? The mycoP going down may mean that the treatment is working.

What I'm hoping for you is that the IVIG shut down production of your son's own antibodies, or slowed it enough that he will not be making any of those wanky antibodies in response to this.

Its hard to judge sudden onset at an early age...and this disorder can mess up development. When a very young child is ill, sudden behavior changes are attributable to the fact that they don't feel well. I would go to Dr.L before psychiatry because 1)You really haven't had much success there and they'll likely just make "best guess" and try different things. and 2)If it is post infectious or infectious in nature, then not only will it be difficult to tell if the psych meds are working (because things will still vary w/ infection or exposure) but it will also be more difficult to tell if treatment for immune problems are working. Dr.L is very good at what she does- she knows medications that affect neurology as well.

Wow, what an ordeal for your family! Sounds like you have a good plan for the future!

My daughter's IgE was <2, I don't remember the exact # (and the records are not easily accessible). Her IgG4 was something like 4- but, w/ the IgGs normal levels vary with age so you need to know normal range for age to gauge how low it is. I seem to recall that low normal for her age at the time this was measured was 11. But, I'm not for sure on that. What I'm wondering is if the low IgE is indicative of low histamine levels, which I don't think we've ever checked- but that has neurological implications, as well as digestive implications.

YES!!!! and I have not heard of anyone else that has this! We also have low IgA. Please, please let me know what you learn about it from Dr. T. Tons of studies have been done on he significance and implications of elevated IgE- so little on IgE deficiency. From what I've read- Low IgE, IgA and IgG4 (separately or combined) seem to increase risk of autoimmunity...but that's all I can find about it. But, also, from what I can tell, IgE triggers mast cells to raise histamine levels- causing inflammation. So, w/ so little IgE, where is my daughter's inflammation coming from? Maybe the body shut down IgE production to try to quash inflammation? IDN! My daughter does really, really awful on antihistamines...maybe because she doesn't have an abundance of histamine?

I think this may be the reason for the "transient tics of childhood" thing. Isn't there is supposed to be some immune cells (T-cell type?) that kick in to destroy faulty antibodies that attack self tissue? If that were in working order, it would be transient. So perhaps, for some of our kids, its a malfunction in the "mop up" immune cells.

Mine did not. Except for low IgG, IgA, IgE all labs were normal except for once we had out of range neutrophils- can't remember if it was low or high though. We've done a lot of labs- sometimes blood sugar levels are wacked. But, in the face of a multitude of +strep tests (really, numerous is too small to describe it) we only once had slightly elevated ASO- it was usually very, very low.

Amber, how did it go with your little one? Hope everything is good! Thinking of you and sending prayers!

So lets see if I have this straight: A carrier has strep living on the surface, but does not exhibit an immune reaction? So, are they able to self infect? I think this is what happens when my child gets dental work or even just bites her tongue.

No, its not stevens johnson- I thoroughly looked at that when we started lamictal. This rash was there previous to going off lamictal- its getting worse though. It could also be sun sensitivity from other meds she is on. Lamictal is one of those meds that really, really affects other meds, so maybe going off has caused some symptoms that it was suppressing. I hate that there is so little information about how lamictal works and what interactions it has...but when we 1st started things were so terrible and we were impossibly desperate, so we had to try something.