We are being admitted

    • Anonymous
      December 29, 2010 at 4:34 pm

      Just got an email from dr. Said Dell’s results of his MRI show worsening. Protein in CSF higher than ever. Enhancement on MRI.

      He emailed again and showed me the plan:

      1 gm methylprednisolone q week
      human ivig 04 mg/kg q 3/4 days
      ivig done same day as steriod at 15 cc/h up to 99 cc/hr

      I tried to get our homehealth agency to do it at home but they do not have the staff. I guess that means 04 mg/kg for 3-4 days?????

      The above plan was from a podcast I heard last night from Dr. P James B Dyck and Dr. Jennifer Tracy, taken from a paper they published in Current Opinions of Neuro. The article is called Investigations & Treatment of CIDP…. If you can pull it up, it is a great podcast.

      I sent the link to my neuro. last night and I appreciate him listening to the 30 min discussion.

      Please say prayers for Dell that this will work. I will take the computer to the hospital and keep you updated.


    • Anonymous
      December 29, 2010 at 5:57 pm

      I am saying prayers for Dell! Keep us posted Lori.

    • Anonymous
      December 29, 2010 at 11:08 pm

      Best wishes & Good Luck.

      When you have time will you send us the link you gave to you neuro? Thanks.

    • Anonymous
      December 30, 2010 at 12:21 am

      I really hate this illness, hard enough to deal with it at my age. But when I hear of a 6 year old having to go through all of it, it really makes me angry! Sending prayers your way that this treatment allows him to get back to walking again without the walker. Also that soon this illness would go into remission for him.

    • Anonymous
      December 30, 2010 at 4:00 pm

      We were able to go to the infusion center at the hospital for the day and not to the floor. Wonderful.

      Dell got 500 mg solumedrol iv before 6 grams of ivig. He’s getting the other 500 mg solumedrol since he has finished the ivig. We will go home after completion.

      In 4 days, he’ll receive 6 grams ivig again. We’ll do that every 4 days and each week do the 1 gram solumedrol.

      Our dr. will be getting in touch with Dr. Dyck to see when we can go to see him.

      See if you can access the below podcast from Dr. Dyck:


    • Anonymous
      December 30, 2010 at 6:09 pm

      I’ll try to send good thoughts to you via the internet ‘ether’!
      Will worry until I hear some good news.
      Hugs and hope! ALWAYS