trggirl

My daughter almost always vomits with strep.

Please keep us posted Peglem. I think it is very interesting information you found about LD IVIG causing inflammation. You may be onto something there.

Hang in there Melanie.

I am praying for Lauren. Thank you for the update. Please let us know what happens with everything that is happening today. It must be so scary.

Wow, that is fascinating!!

I just wanted to chime in and say it was extremely informative.

Hi, I copied this from another thread [i]This is Buster's "very easy to understand" description... PEX is plasma Exchange -- you put in someone else's for your child's Plasmapherisis -- you take out your plasma and replace it with Albumen IVIG -- no removal of your plasma, you just add a very sterilized version of someone else's in addition[/i] You can get steroids from your local doc, but there are many posts of good and bad results so do a lot of reading before you make a decision to use them.

Hi Charlotte Mom, I was also hoping you would post about your IVIG experience if you had the time.

Ok, I am getting more and more lost with each post and each study. LOL!!!! But I know my daughter's aluminum was very high in her hair sample. So........somebody please help me. Is that a clue to an immune disorder?????????

Just FYI, our experience was that Texas Children's Hospital does not believe in PANDAS. When I presented Cunningham's and Swedo's studies, the doctor told me about all the "great" researchers that did not think the studies were good. Please, please post if you have a different experience.

Buster, I totally got lost in your post (lost due to my slow brain, your post was fantastic) and will try to read it again later but in the meantime, with all the proteins and antibodies and inflammatory markers mentioned in the paper, is there anything else we can test bloodwise to help our picture of what is going on? For example can we test TLR2, TLR4, inflammatory cytokines, IFN Beta, or anything else from a blood test?

Ok, I just went back to read about Guillain-Barré Syndrome and it talks more about rubbery legs as opposed to legs that are asleep. Just wanted to mention that now that I have probably scared you to death. And I will say that my daughter complains often about her legs falling asleep. I even mentioned that to her doctor.

I'm not even sure I want to post this but I think information is good so I will just tell you our experience. After some vaccines last year my daughter was complaining about her legs. The complaints ranged from hurting to not feeling her legs. I especially remember her wobbling on them and telling me they felt wobbly. I called my doc and he told me to rush to the ER and have them check her for Guillain-Barré Syndrome. If you look it up, it's scary. And please understand, this may not be what your doctor is thinking at all. I think I would call him and ask for more details if it was me. Again, I am so sorry to post something so scary and I hope I am doing the right thing. On a good note, they evaluated my daughter in the ER and did not think she had the syndrome. The leg issue passed within a couple of days.

But to just bring out a point, not all of us have the elevated antibodies, but it seems that most of us do have the CamK II elevated proteins. So it seems it is the CamK that is tying us all together in some form or fashion.

Yes, my daughter did this. She would say a sentence and then say it over and over. She also did it on reading. We had trouble making it through a page of a book because she would read a word or sentence and then have to repeat it many times to the point that she would forget what she was reading. When we finally made it to the next sentence, she would start the process again.

Peglem, you find the best studies and articles concerning CamK II. Thank you!

Hi there, We are in the Champions area. We should talk!

I wish someone had an explanation for it. Are there possibly other antibodies that are elevated?

He will be in my prayers.

My daughter has the same thing. Cunningham results of 237, but all the antibody titers were normal.

MMC, did you have ADHD issues as a child? If so, did you outgrow it?

SFMom, since his levels have been lowering, have you noticed any difference in behaviours?

We tried Intuniv last month. I think we made it for 3 weeks and it was just no good for my daughter. Her fears ramped up, her tics were as bad or worse, she woke up three to four times a night, and her focus went from bad to worse. This was my first and only try at the ADHD meds and it was not good. With that said though, after agonizing about it for months, I am glad I tried and can cross it off my list. I was torturing myself wondering if I was not doing right by my daughter by not giving her a med that could make her life easier.

SFMom, my daughter's rash does feel a bit like sandpaper. It is really light though. You have to be looking for it although it was more pronounced this past week. What does that mean?

SFMom, my daughter's rash does feel a bit like sandpaper. It is really light though. You have to be looking for it although it was more pronounced this past week. What does that mean?