update on Ryan’s Progress

    • Anonymous
      July 4, 2010 at 11:51 am

      Just wanted to stop by and let you all know how Ryan is doing. Since beginning cytoxin in Feb, Ryan has been doing great! He is completely out of his wheelchair and walking. he uses a brace only on his right leg now. the foot drop in the left foot is almost gone so he doesn’t have to wear that brace any longer.

      He just completed his last cytoxin treatment this past Tuesday. He received 2000mg every 3 weeks for 6 months. Which came out to be 8 treatments.

      He is going back to college in August. He just got his truck outfitted with hand controls and is now driving. which has taken forever to get it done cuz when we first looked into it he needed $38,000 worth of equipment since he was in a wheelchair and needed so much more equipment than he does now. Michigan Rehabilitation Services (MRS) had to wait on the funding but once we had him re-evaluated he only needed the hand controls ($3500) to operate the gas and break. So much easier to get come up with 3500 than 38000.lol

      You might ask why hand controls if he is doing so much better? The reason is because his right foot the one that operates the gas and break still doesn’t have all the feeling in it. The right foot is the one that has the most nerve damage. we are praying that it is not permanent. He is getting feeling back to it but at a slower rate than the left. so it will take some time for the nerves to heal.

      But Ryan see’s Dr Richard Lewis in August and hopefully it will be determined that he is in remission. we are praying for remission. we are hoping that he will do a EMG. we are curious to see what it will show. I know there isn’t anymore demylination going on right now but we want a test to show it. Dr Lewis was so happy with his progress when we seen him in April. so this next visit will be a good one.

      I hope everyone at this site finds a dx and a treatment that will work for them. Ryan is 21 but was 19 almost 20 when he got sick and has been through hell and back. He went through so many treatments that didn’t work and just kept going downhill and we finally took the risk of doing chemo with cytoxin and it worked. he had no side effects that we can see so far except the nausea but that we knew was going to happen and it only lasted for 3 or 4 days after each treatment. thank God for anti nausea meds. Our oncologist who did the treatment for him told us this past tuesday that he was happy to do the treatment for him but since he had never had a CIDP patient he was shocked and pleased at Ryan’s progress. he told us that he didn’t think when we started that Ryan would ever walk as soon as he did. he didn’t think he would walk even after 6 months of treatments. But was so pleased that he is walking. Ryan was up and walking within the first 2 treatments. he tried to run a few weeks ago but it didn’t happen but this too will happen some day. the nerves have to heal. but he will try again soon.

      He continues to get better and we are thrilled. He still gets tired and has to take a nap but we are down to 1 nap at day instead of 4+ naps a day.

      I guess what I am trying to say is don’t give up no matter what. There are a lot of doctors out there that just don’t know enough about this illness and they tell their patients a lot of stuff that just isn’t true. They think just because they don’t know the answer there is nothing more they can do or they just follow regular protocal and dont go outside the box. There are lots of different treatments no just IVIG, prednisone, and plasma pheresis. alot of doctors think these are the only 3 treatments out there. that just isn’t true.

      But I am here to tell you be your own advocate. Find a neuro that treats lots of CIDP patients they are the ones who tend to know the most. Ryan has had 3 different neuros in the past 1 1/2 yrs. Ryan and I started researching CIDP the day he was dx. we looked at every treatment we could find and he did IVIG, Plasma Pheresis, steriods (prednisone) and he did them alone and in combination with one another and they didn’t give him much relief. From the start Ryan asked for cytoxin and was told no but he kept asking and finally was granted the treatment he wanted. The doctors never told him “never” they just told him “no, not right now it has so many side effects that we want to try this treatment first.”

      Just keep your head up and keep advocating for yourself. God bless all of you and I hope you all find remission soon. I will continue to give you updates on Ryan. It will probably come in August when he sees Dr Lewis again. But I do come here often to see how everyone else is doing. You all have been such a great source of support from the beginning and I know we couldn’t have gotten through all of this without your support and kind words.

      Happy 4th of July!!!

      Rhonda (Ryan’s mom)

    • July 4, 2010 at 2:27 pm


      YEA for Ryan & you! Thanks for sharing; Ryan’s story is encouraging. But also thanks for sharing your sage advice with others.

      Here’s hoping Ryan will have a full recovery quickly and your $3500 will be wasted expenses very soon.


    • Anonymous
      July 5, 2010 at 6:39 pm

      It makes me feel like a quivering wimp at times. But your strength and success gives ME hope that I too can get and be stronger.
      That Ryan is now MOBILE? Wow!! You better watch out…you know what I mean.
      Now, for you? Make it a point to either find a discount coupon for a ‘spa’ or get some good bubble bath stuffs and, of course candles, and go spoil yourself! You’ve earned this kind of treat at the very least!
      Just keep thinking, working, doing and pushing for the better stuff! Sounds like it’s in reach at last! Hugs and good things!

    • Anonymous
      July 6, 2010 at 12:17 am

      That is wonderful news, I am so happy for you both! 😀

      Sending positive energy for even more recovery.

    • Anonymous
      July 6, 2010 at 8:04 am

      It is so refreshing to hear such good news


    • Anonymous
      July 6, 2010 at 4:00 pm

      Rhonda, that is awesome news !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


    • Anonymous
      July 6, 2010 at 6:34 pm

      Great news! I hope Ryan is enjoying his summer!


    • Anonymous
      July 11, 2010 at 5:36 pm

      I completed a six month regimen of cytoxin three months ago with no benefit. Next month I will begin treatment with cyclosporine.

      Very happy for your son’s excellent results. My chemo doctor said it was like throwing darts which I interpreted to mean that they never know what is going to work for a particular individual.

      I have put my body through a lot over the last two years looking for something that will help. I’m reluctant to continue treatments but with a likely prognosis of being bed ridden if the CIDP is not arrested I’m going to continue.


    • Anonymous
      July 13, 2010 at 6:40 pm

      hi everyone

      yes Ryan is enjoying his summer especially now that he can drive. he has his hand controls and he now has his freedom back. he comes and goes as he pleases and is looking forward to going back to college.

      he is getting ready to go on a bike trip in a few weeks. its not a real far one just a group of his friends from school going to macanac island (sorry spelled wrong) and riding around the island all day. ryan is looking forward to it. I am worried of course like most mom’s do. he still does not sweat good and I worry he will get overheated and stroke out. but he assures me he will keep himself cool with water if he needs to and he will stop and rest often. he is hoping it wont get to hot out.

      He see’s Dr Lewis at teh begining of August and we are hoping for an EMG. we know he is better but we want to see it on the EMG too.

    • July 13, 2010 at 8:32 pm

      Ryan have a wonderful summer! And Mom I admire you more than you know.
      I am praying hard.