Dr. wants our son weaned off of ivig, started on iv steroid

    • Anonymous
      December 26, 2006 at 10:38 pm

      We came back from our 17 hour drive to visit with Dr. Thomas Crawford at John Hopkins. He is supposed to be a leading authority on CIDP.

      Dell was dx 12/05 with CIDP based on protein and biopsy. Dr. Crawford says he can not deny or go along with the dx of CIDP. The only thing he is sure about is Dell has an acquired (not genetic) neuropathy. He performed an EMG. He says, which most of you know, it is almost unheard of for a child under the age of 1 getting CIDP but he admits it is possible.

      Dell was “presented” at a round-table discussion with other Neurologists across the country. They present hard to solve cases and Dell’s case is right on the money for that.

      He wants Dell weaned off of the IVIG treatments (he gets them every 2 weeks). He also wants him off of oral steroids. He wants him to only be on iv steroids but I’m not sure how often, maybe every 2 weeks.

      The day after we returned home, Dell received an IVIG treatment and an iv steroid treatment. Since they are not compatible, the steroid was given first, over a 2 hour period, then the ivig was given.

      Please keep your prayers going for Dell. We are hoping for a recovery and him starting to walk. Christmas day, he started taking 3 steps at a time, what a wonderful Christmas present.

      Love, Lori

    • Anonymous
      December 27, 2006 at 8:40 am

      Lori, That is Great news that Dell took the steps, soon he’ll be running all around. I hope the Dr has found the right combination for treating Dell, he deserves it. You All are in My Thoughts and Prayers.:)

    • Anonymous
      December 27, 2006 at 1:50 pm

      Hey Lori…

      I am so glad that you finally got to meet with Dr Crawford. When I was telling our homecare nurse about Dell she too thought that the steroids were what was helping him along lately. She said that has happened with other kids that she has treated as well. What does Dr Crawford say about the nerve biopsy results? They showed demyelination right? Is there anyway to explain that other than CIDP? What does he say about the MG?

      I am SO excited for you all that Dell is starting to walk! I know there was a time when you didn’t think it would ever happen. It makes me want to cry tears of joy for you. Many HUGS to you!

      Emily is on oral Prednisone right now. Her IVIG treatments have been moved back to once every 3 weeks. Her eye is relapsed right now – she can only move it about 60% of the way right. (meaning it’s still in the middle & not turned in left & she can move it 10% past the middle. Does that makes sense?) We’re getting ready to have some bloodworke done to determine if she has a hereditary neuropathy. Honestly, I don’t think she does. She fits into CIDP too well. She had an IVIG treatment on Saturday (12/23) but it didn’t really do much for her. When her eye is like this it usually takes 5 IVIG treatments to get it better but the new neuro doesn’t want to do that. She’s going to up the dose of Predinisone when we see her in a few weeks, I think. We did see an immunologist that mentioned giving Emily low doses of methotrexate. I’m not sure about that doing that though.

      The new neurologist has FINALLY decided that Emily may very well have a variant of CIDP. She said that we (meaning she) will never really know because the right tests weren’t performed when Emily was first in the hospital. Which is 1 year from Dec 28th (tomorrow). 1 year ago today she woke up and couldn’t walk, lift her arms or open up her fingers. We’ve certainly come a long ways since then.

      Sorry, I didn’t mean to hijack your thread here.

      I’m SO happy for you that you are starting to get answers! I hope that 2007 bring MANY more answers for you and that Dell starts running around the house like a mad-mad.


    • Anonymous
      December 28, 2006 at 2:14 am

      What great news!! Has Dr. Crawford spoken with your local neurologist yet? I bet your mind is just filled with questions for Dr. Crawford…again.

      Abby is doing well. We are on 20 grams (Which is about .5 grams per kilogram weight) every 2 weeks for 3 months now. Never could get Dr. Sladky on the phone with our local neurologist. Kids are out of school till 1/8/07. I will call you soon.

      I hope Christmas was enjoyed but all.

      It’s going to be a GREAT New Year!

    • Anonymous
      December 28, 2006 at 2:20 am

      Hey there Lori, give me a call when you get a chance. Take care.


    • Anonymous
      December 28, 2006 at 11:50 pm

      Hey Lori

      I didn’t have a chance to call today. I just read about Dell Walking, you didn’t tell me that is great!! If you have time call me tomorrow. Guess what I am typing on? My sister gave me a Lap top with wireless. I am in the bed typing LOL Mason is next to me whining hahaha. He wants to lay on my arm. I will have to learn to type with one arm.

      Dr Powell heard back from Emry today. She has to send all of the records.
      Talk to you soon. I am so Happy for you. I have a good feeling about Dells new plan.

      2007 is going to be better for us all, it just has to be!!