nervous & excited

    • Anonymous
      July 19, 2009 at 1:21 pm

      It’s hard to believe that Tuesday is only a few days away. Tuesday is the day we see Dr. Richard Lewis. Tomorrow after physical therapy we are traveling the 3 hours across to the east side of the state to get ready for our appt. we are staying in a hotel. Ryan will meet up with some of his college friends for dinner and to hang out. Then Tuesday meet the doctor at 11:30 am. We are all so nervous but excited. Nervous because we don’t know what to expect and scared he isn’t going to be able to help Ryan. Excited about the possibilities of what he might be able to do for Ryan. Ryan so badly wants to get out of this wheelchair The past 8 months since dx has been hell on our family and life changing for Ryan. I am so hoping he can come up with a treatment that will work better than the IVIG has so far.
      We are praying for a little good news. I want to know what variant of CIDP Ryan has so we have an idea if there will be a recovery or hope that a treatment will work. I know there are a few variants that are worst than others.
      Ryan had to go to the ER the other day because he was running a little fever and had a really bad migraine. He was given IV fluids and had blood test run. everything came bACK ok. We think he was a little dehydrated. I did however ask for a B-12 test to be drawn to see if his b12 was ok. That isn’t back yet but we should know by tomorrow.
      well I thought I would just post to let you all know what was going on. Have a blessed day and hang in there.

    • Anonymous
      July 19, 2009 at 5:53 pm

      You have alot to be excited about. Dr. lewis is supposed to be the Master of this disease. He had also worked with my neuro Brown. together there were 4 Dr’s that named the varient MADSAM Or Lewis Sumner Syndrome. They were as follows, but two somehow didn’t get the credit they deserve.
      Dr.’s Lewis, Sumner, Brown and Asbury. Google all four names at once.

      Once again, Good Luck and hopefully he can develop a treatment or figure out
      if there is something more to for you all.–tim–

    • Anonymous
      July 19, 2009 at 8:34 pm

      Good luck, I hope you get some answers.

    • Anonymous
      July 19, 2009 at 11:25 pm

      Rhonda – you and Ryan are in my prayers.

    • Anonymous
      July 20, 2009 at 12:09 am

      Rhonda – Good luck with your appointment. Let us know how Dr. Lewis is and your experience with him. I was thinking of going to him myself and would like to know your experience with him. I live close to Detroit, so it would not be a long drive for me. I do know a woman who is going to him in August. From what I have heard he is really good and if you live far, he can recommend someone closer to you once he gives you his diagnosis and treatment plan. Good Bless and we are praying for you and Ryan.
      Clare in Michigan

    • Anonymous
      July 20, 2009 at 11:18 am

      Be sure and take all of Ryans previous blood work, etc. so that Dr. Lewis can look at it all at a glance. I carry all the stuff in a three ring binder. When the doctor mumbles something I whip it out so that we do not have to do things twice or so that they can look at the results of the same test over time. Dr. Lewis has been known to diagnose people with things different than what they think they have. Lets hope that is the case with Ryan and he can be treated easily. I think about Ryan a lot. He is at the beginning of his life and wants to live a normal life like his friends. Isn’t it strange that we got the luck of the draw or whatever? God is still in the healing business.

    • July 20, 2009 at 5:52 pm

      Selahs mom, so glad you do the three ring binder thing!! I never go to a doc appointment without ours!!!

      Rhonda, good luck to you and Ryan. If anyone can help you, Dr. Lewis can. I spoke to him for a long time asking all sorts of questions about my son at the symposium, and he graciously answered each one of them. he is a compassionate, understanding man with a great gift for healing.
      Dawn Kevies mom

    • Anonymous
      July 20, 2009 at 7:30 pm

      Good luck!!! I know you will really like Dr. Lewis.

    • Anonymous
      July 20, 2009 at 9:23 pm

      Ditto on the three ring binder. it makes it easy for them, Organize it in Chronological order so he spends less time trying to figure out what you been through and more time thinking about the actual problem. I was complimented by my dr in how my records were kept. I also gave em a disk with everything on electronically so they can keep it.tim

    • Anonymous
      July 21, 2009 at 11:03 pm

      Well Dr Lewis was wonderful. He spend alot of time with us. He went over everythin in order since October 2008, looked through the records we took with us, did another EMG. He confirmed that Ryan has CIDP. He said on a scale of 1-10 10 being the worst, Ryan is about a 7. But he said he in confident he can help Ryan but it will be a long journey and we need patience. He told us not to do IVIG any longer cuz it isn’t helping Ryan. Instead he wants to do Plasma Pheresis and 80 mg of Prednisone for a few months. If it works good then we will start to wean him off or get him down to a lower dose of prednisone. Not thrilled with teh side effects of the steroids but if it helps RyAN get better and walk then we will do it. since we live so far away he wants to work with our current Neuro and just see us every 3-4 months to start. we are fine with that but boy I do wish we lived closer so we could see him on a regular basis. He did give us his card and told us to email him and keep him updated on Ryan’s progress. He also said if our current neuro didn’t like us seeinghim and didn’t want to work with im then he would help us find a new nuero close by us that would. Cuz Our current neuro is got the God complex (i’m so wonderful I don’t need the patient or other doctors telling me how to deal with my patients) so if he reacts like that to us going to dr lewis then we will go with who ever dr lewis wants us to see. it’s about Ryan and I don’t have time to stroke a doctors ego.
      But dr. lewis is very kind and patient and he seems to really care about the patients and their care.
      we knew Ryan had hemolytic anemia but our docs told us that CIDP caused it but he said no. He said the hemolytic anemia was what probably caused teh CIDP. we told him that when ryan was little he had a problem with his spleen being enlarged and our pediatrician blowing it off that that was ryan’s norm. he said no that was an early sign that someting was wrong then. so he wants ryan to see a hemotologist before we get started with PE and steriods so they can get a bunch of blood work to try to figure out what is causing the hemolytic anemia.
      So we are very pleased with dr. lewis and would tell everyone to see him if they could.

    • July 21, 2009 at 11:27 pm

      So glad things went will. i would have expected nothing less! It sounds like you are at the starting line of your journey, ready to go. We will pray for Ryan and you!
      Dawn Kevies mom

    • Anonymous
      July 22, 2009 at 12:19 am

      Sounds like you have a good plan. I really like that he was receptive to the fact that your local doc might not like him calling any shots. That was very perceptive on his part. I like that he is looking into the anemia thing. My daughter also has two things going on and i think it makes a difference. Some doctors don’t really care about the cause of someones cidp but I think it matters. I am very happy for you and want you to know that we prayed last night as a family for the appt.

    • Anonymous
      July 22, 2009 at 4:04 pm

      Glad you had a good visit and direction is in play.
      Good Luck in the future.–tim–