Nurse G

Worried Dad, Got chill bumps reading your post. I agree 100%. Well said. Hope things are looking up for you and your family. Glenda

Hi Green Eyes, Sorry about your sons increase in symptoms. Alot of us here can definately relate. March will be a year since my sons symptoms started, and we've hit ground zero several times. Our latest was after a simple 24-48 hour GI bug at Thanksgiving. It took his system approx. 6-8 wks to return to baseline. He continues to take Keflex 500mg for prophylactic measures, and it works well at this point. He is not the same child I had a year ago, but so much better than the initial onset. Sorry also to hear about his dad being "not on board" with IVIG. I think the potential of having your child improving long-term outways the risks of possible side-effects. It's something my husband and I are hoping to have done for our son soon. Hope things start to turn around. Call/E-mail me if you need to talk. Glenda

Hi Lisa Glad to read your son is improving. I agree with EAMom on the video taping idea. When my son started with tics out of nowhere 5 days after his first strep infection (that's been diagnosed anyway) in March of 08'. I made a 30 second video of him at the table coloring. He jerked his head back so forcefully and so many times it made me feel sick. It proved though to be a very useful tool. When we went to see his pediatrician, I think he felt I was over-reacting also. My son had only 2-3 minor tics during our visit with him that day. He said "I haven't seen him do anything abnormal". So, I showed him the video, and I saw an instant change in his demeanor. Same thing happened 6 wks later at our pediatric neurologist apt. until we showed him the video. I would also recommend you find a good DAN doctor. My sons has been incredible. I pray you and your son get the help you need. Glenda

Hi CWMOM, Have you had your son tested for strep? He can still be positive without common symptoms. Anytime my sons symptoms increase I always have him checked. His pediatric neurologist told us with certain antiobotics, if you miss one dose the levels drop considerably, and it gives strep a chance to infect the child. He specifically said this happens with Pen V.K. Not sure if this could happen with Amoxicillin?? Hope this helps. Regards, Glenda