chrisw

My son had IVIG with Dr. K back in April 09. Before the procedure, Dr. K requested the mycoplasma test among a few others. My son was positive. He also had positive strep around the same time.

This wasn't addressed to me but I did contact Beth about the Augmentin that is not XR. She said she did not know and to ask my doctor. I've emailed my doc ad put in a phone call too and I'd expect to hear back today. I'm not filling our prescription until I hear back that that level of Clavulonic acid is okay for her. My dd has been prescribed 2000mg of Augmentin that is NOT the XR. I'm not sure my doctor knew that the levels of Clavuloic acid were different. I did ask her the difference between XR and regular and the only thing she mentioned was the time release issue and the expense and availability of XR vs. regular. I can't imagine that our pharmacy couldn't order it though. Angela Shouldn't a pharmacist know if this is safe?

Well, I called Diana for more info. She called the father to get clarification. It was JUST the regular flu shot, but it did cause a bad exacerbation. SORRY!! But, I think this speaks to the issue of the fact that we don't always know how our kids will react. My son will not be getting any flu vaccines. Christie

Hi All, Wanted to pass along some info to you about the H1N1 vaccine. I spoke with Diana P. yesterday, and she told me that a 5yr. old Pandas child whose symptoms were under control with antibiotics got a flu vaccine (either a combo of regular flu and H1N1 or just H1N1) and is now in a MAJOR exacerbation. She said that this is not someone who posts on here and she wanted me to post this for your info. I don't know any other details other than this. Thought you should know. Christie

Hi Stephanie, My son had IVIG with Dr. K in April of this year. He runs between 85-95% better than before IVIG, depending on the day and if he has been exposed to things at school. Life is good right now and he is much happier. He takes 500mg. of Augmentin daily (he is now 10yrs. old) and is SO MUCH easier to live with. I have faith that he will continue to get better and eventually grow out of it. You are in my thoughts. Hang in there. Christie

Hey Fallingapart, If your weird, then I am too!! I ordered the colostrum lozenges from Synertek after MUCH research. I have been giving 1 a day to my son for about 2 weeks. I was really impressed with their website and info. Just google Synertek colostrum. When Diana went to see Dr. Cunningham, she asked her about colostrum and Dr. C said it sounded like it was fine as long as it was pasturized (which it is). Evidently, it really strengthens the immune system in many different ways. My son says the lozenges don't taste good, but they don't taste bad. I've taken several and they aren't bad. I just have my son suck on them for a minute or two and then chew it up and swallow with some water. On this website, they claim that colostrum can raise serum IGg levels up to 50%. I have no idea if that is true, but if this will give him just a little boost, it's worth it. We live in Florida and have had MUCH sickness in our schools (swine flu, and strep) lately. The other day at my sons school (he's a 4th grader) they had 95 absent. He has had nothing but occasional sneezing (I should probably be dusting my house right now!) since school started. I plan on getting the powdered form for my whole family also. I wonder if I could add it to chocolate milk without any notice? Christie

Hi Melanie, I'm SO glad to hear that you are seeing improvement! Were you able to secure prophylactic antibiotics for Danny? Without them, he WILL be vulnerable to strep and if infected, he will likely regress. The antibiotics are part of the IVIG equation for success. I hope I'm not preaching, but IVIG is so expensive and such a big deal to not give it every opportunity for success. My son had IVIG in April of this year and continues to do well. Overall he continues to be about 85-90% better than before IVIG, but I can STILL see MILD behaviors (usually just one at a time and manageable) return occasionally and then fade away. I believe this occurs from being exposed to germs at school everyday. His overall health continues to be good and the few times he has acted as if he is going to come down with something, his immune system seems to fight it off quickly. I would say that the IVIG was a successful treatment for him, but I really believe he would be back to where he started or close to it without the protection of the abx. The abx. gives the IVIG an opportunity to work and possibly time for the immune system to "learn how to behave" properly. I have NO regrets about doing the IVIG and would do it again if neccessary. I am SO happy for you and Danny and I pray for continued improvement. Christie

Hi Lena, So sorry for what you are going through! I was just curious about your child's IVIG. In a previous post, you said that he experienced no relief after IVIG. Was he placed on prophylactic antibiotics after his IVIG? I noticed that you mentioned other meds but are you just now starting abx.? From what I understand, IVIG is basically going to be useless unless the child is protected from strep for at least a year. I hope the penicillan helps. Hang in there. Christie

Will be lifting Shae, you and family up in prayer. So sorry you all are going through this on top of everything else. Christie

Welcome!! And WOW!! I know many of us are always wondering about the future for our children and your post is SO encouraging!! I am so excited to hear of your daughters recovery. I think I can speak for many on this forum when I say THANK YOU, THANK YOU, THANK YOU for taking the time to share that with us. Christie

It's bovine cow colostrum. Evidently they can only get it right after or soon after calving.

I have been researching bovine colostrum and think I have decided to give it a try. It has a bunch of immunoglobulins (IGG, IGA, IGM) in it which are evidently the same whether from a cow or human. Go figure. My son's IGG1 subclass is below normal and his IGG3 is on the low end of normal, so I don't think it can hurt. From what I have read, it is not classified as a drug, but a food so it supposedly has no side effects. Here is a VERY informative website (I don't know how to do a link) all about colostrum. It is www.icnr.org. I just want to do all I can to protect my son through this school year. I'll let you all know what I think when we try it. Christie

Hi Eddie, Is your son on prophylactic antibiotics? Did he get his IVIG with Dr. K?

I was fortunate to have an easy going Vet who just agreed to put my dog on a round of abx. She said that they don't even do a test for strep in that office.

Wonderful, wonderful news!!! I am still in awe over the last 2 wks. of school with NO problems concerning separation anxiety or homework issues for my son. Is anyone else out there toying with the idea of making there kid where a mouth and nose mask to school??? I'm still really nervous about germs. Hope things continue to go well. Christie