• Anonymous
      January 21, 2010 at 9:40 pm

      Any one had abnormal (demyelinating) results on EMG, and had future EMG to show worsening of symptoms, or drastic changes? :confused:

    • January 21, 2010 at 11:22 pm

      Yes,When Kevin had a relapse. You are probably in a relapse, do you get ivig.
      Dawn Kevies mom

    • Anonymous
      January 21, 2010 at 11:50 pm

      [QUOTE=Dawn Kevies mom]Yes,When Kevin had a relapse. You are probably in a relapse, do you get ivig.
      Dawn Kevies mom[/QUOTE]

      Yes, got 5 days of IVIG……but had a bad reaction, still having breathing issues 3 weeks later!

    • January 22, 2010 at 10:34 am

      I posted on one of your other threads regarding amounts. The breathing issue is tough. In the begining, Kevin was terribly affected by breathing issues due to his cidp. Eventually they got better. You have to remember, you start healing from the toes up, a mm a day. Additionally, being that you are at week three since the last infussion, it may be time again. Some need to go every two weeks. One load of ivig is not going to get you back to 100%, it will take many, with no relapses inbetween for continual healing. Another component of the breathing issues in my mom opinion, is that the stress of the illness itself can cause anxiety attacks, I have seen it in Kevie. Besides that, something I am looking into for us is leaky gut. Stress, aleve, diet, candida, many things can cause it, some of the symptoms are fatigue, fevers,sweating, difficulty breathing, asthma like symptoms, migranes, inability to concentrate, and on and on. So that might be our cause of the breathing. As well we are weaning down, so I also have that challenge to factor in.
      Regarding your comment about the reaction…the cold hard truth is…it sucks, it happens and may continue to. I can tell you Kevie did get better as time went on, about a year and a half or so and it got really better from a reaction standpoint once we did it every two weeks, it was not as hard on his body. He does still get the headaches and backaches with occassional puking, but no where near what it was. I would say he went from a 10+ on the pain scale to a 6 now. So keep the faith, you need that medicine. Solumedrol prior to infussion could help along with the typical pre-meds.
      Dawn Kevies mom