update on Ryan

    • Anonymous
      August 30, 2010 at 7:14 pm

      Well here I am again giving an update on Ryan. After battling CIDP for almost 2 years and doing all of the normal protocal and failing.. Ryan did the cytoxan infusions for 6 months and is now officially in remission. its been 2 months since his last treatment and he is off all of his meds except his pain meds. he is doing so good that Ryan went back to college. he moved almost 2 hours away and is back to his life.

      He has started posting on this site as mccy_blueyes. I am so proud of him and so happy that he is back at school. I do miss him terribly and worry like crazy but very excited for him.

      Just know that no matter how bad things get there is always hope. ryan went through some very bad times when none of the treatments were working and he was decling fast. we were in a state of panick at times worrying about what treatment to do not knowing if it weas going to work, worrying if he was going to end up on a vent before we found anything that would work. to tell the truth I worried a lot. But we kept the faith and stayed in prayer and trusted that something would work. praise the Lord cytoxan worked.

      I continue to pray for those who are struggling with CIDP that you will find a treatmetn that will put y ou into remission.

      Rhonda (Ryan’s mom)

    • Anonymous
      August 30, 2010 at 8:57 pm

      God Bless you and Ryan! I’m so happy for both of you. Ryan has his life
      back now and I have no doubt that no matter what he decides to do he will
      do it well and to the best of his ability. You are both so lucky to of traveled
      this journey together, side by side, through hell and back again, sharing your
      tears and truimphs….together, with God right there with the both of you.
      You both have been my hope and inspiration. Thank You,
      Miss Judy

    • Anonymous
      August 30, 2010 at 11:50 pm

      As you know I came down with CIDP in March of 2002 & my case was very similar to Ryan’s. I had the cytoxan Jan-Sept in 2003 & it put me in remission; I have been in remission for 7 years now this September. The even better news is that Ryan will most likely continue to see improvements for up to 2 years from now. I am so happy to hear that he is back in college. I know how you must worry, I remember when my son in a wheelchair (spina bifida) went away to college back in the fall of 2002. Duluth, MN is not exactly ideal college conditions for a wheelchair student (wintery climate.) But he managed & graduated with honors, even though 6 months after he left home his mother became very ill with CIDP. It will all work out just fine…

    • Anonymous
      August 31, 2010 at 2:02 am

      I’m so happy to hear about Ryan. I know what It’s like for your child to leave and go to college. I also know how terrible things can get with all the infusions and worry. I’m so happy for you both.

Update on Ryan

    • Anonymous
      January 8, 2010 at 2:28 pm

      For those of you who have been following Ryan’s journey with CIDP. He was Dx last Dec with this hellish disease. Ryan has a very aggressive form of CIDP and is in a wheelchair. He has over the past few months began to be able to walk short distances with a walker aas long as he has his AFO’s on.

      well he is back in the hospital again with a blood infection. He came in on Wednesday morning to have a plasma pheresis treatment done which was the first one since October. He has had his perma-cath in the whole time but it hasn’t been used. the home heathcare nurse has been coming in everyother day and flushing it. But apparently bacteria was growing in the catheter and when they hooked him up to the pp machine and turned it on it pushed all that bacteria into his blood stream. within a matter of 30 minutes he was running a fever of 103.7, freezing with cold chills, his muscles where cramping so much from being cold and running that fever that he couldn’t breath they had to put him on oxygen. they admitted him into the hosptial and he is in isolation. we have to where gowns, gloves and we are suppose to wear masks too. he is on IV antibotics. hopefully he will be out of here soon. He’s feeling better now but he will have to be here until the blood infection is better.

      He was suppose to start chemo this week but that won’t be happening anytime soon.
      Just thought I would update you all.

      Rhonda (Ryans mom)

    • Anonymous
      January 8, 2010 at 2:38 pm

      [I]My hopes and prayers are with you and Ryan.[/I]

    • Anonymous
      January 8, 2010 at 4:18 pm

      Is Ryan’s catheter a tube that is hanging out of his chest? If so, Emily had one too, called a Broviac, and she too had an infection.

      What happens is proper sterile technique was not being used & that is how the infection developed. I would be having a VERY long talking to with that nurse about her proper sterile technique. If you need advice on what that is, just let me know. Also, catheter’s like that need to be flushed DAILY with saline then heparin – not every other day. I had to flush Emily’s Broviac every day & was trained on the proper way to do it.

      He will be antibiotics for a few weeks, I’m guessing. Emily was on them for 3 days in the hospital when they did another blood test. She had to wait 24 hours after the test (to see if bacteria grew) and then she was released. During that time she was on HEAVY duty antibiotics, 2 of them to be exact. Then she was sent home & put on antibiotics for 2 weeks. She was fine after that.

      HUGS to you all! I know how stressful this is & I’m keeping my fingers crossed Ryan gets over this ASAP & can get back to walking.


    • Anonymous
      January 8, 2010 at 6:30 pm

      yes the catheter was on the outside. those do get infected easier. I already talked to the nurse about it but we don’t think anything was done on purpose. she was always careful and I watched her do it everytime.

      yes it was flushed every two days but that was because that is what the hospital told us it had to be. actually radiology who put it in told us once a week but the doctor said every other day to be on the safe side.

      It has been in since July and has not been used since October. it should have been taken out. They were suprised it has been in since July usually these perma-caths are only in for 2-3 months not 5 months.

      we are upset about the situation but it happens. we are just focusing on Ryan getting better and getting home.

      Thank goodness if they decide to do anymore plasma pheresis treatments before cytoxan begins then it will be with a vas cathe and it will only be in for a few days. Ryan hopes they forget about it and just get teh cytoxan started once he is over this infection,

      Thanks for the concern you guys are all great!! everyone looks out for each other.

      Rhonda & RyAN

    • Anonymous
      January 10, 2010 at 10:24 am

      My prayers are with Ryan and his entire family….

    • January 10, 2010 at 3:18 pm

      HI Ryan’s Mom!
      My heart goes out to you with all you and Ryan have been through. Please know that I am sending prayers and good wishes your way!
      I can only expect a good outcome with all the care and concern you’ve given to Ryan.

    • Anonymous
      January 10, 2010 at 5:38 pm

      Wow i am so sorry Ryan is going through all of this. I will definately be praying for him and your entire family. I am new to all of this and everyday i learn something new about this disease. I didnt know symptoms could be so severe! Take care!!

    • Anonymous
      January 11, 2010 at 8:57 am

      So sorry to hear about Ryan’s set back but I’m sure after he recovers from this and he starts the cytoxin he will be up and running with all the prayers being said for him and you.

    • Anonymous
      January 11, 2010 at 9:28 am

      He is still in isolation but he is getting better. They are still giving him IV antibotics as the bacteria he tested positive for is a new superbug that tends to be resistant from antibotics but the two they hav ehim on is doing the trick. They do blood cultures everyday and he has been testing negative the last 2 days so it looks like he maybe getting over this.

      He is scheduled to go down to radiology later this morning to have a vas cath placed so tehy can give him 2-3 more Plasma pheresis treatments this week before he leaves the hospital.

      They said he will probably start chemo end of month or eginning of next month. they need to make sure he is recovered from this blood infection first.

      Thank you all for your continued prayers and encouraging words.

      God Bless all of you

      Rhonda & Ryan & family

    • January 11, 2010 at 4:24 pm

      Rhonda, Prayers are being lifted for Ryan, you , your family, and for the skill, knowledge, and wisdom of Ryan’s docs. Gary

    • January 11, 2010 at 6:42 pm

      Hi Rhonda,
      It sounds like you guys are turning the corner!! We will say a prayer.
      Dawn Kevies mom

    • Anonymous
      January 13, 2010 at 3:03 pm

      Thank you to everyone who has been praying for Ryan. He had the Vas Cath placed ad has had 2 plasma pheresis treatments done so far, He is scheduled to have one done on Friday and then the plan is to remove the Vas Cath and let him go home.
      However his whiteblood cell count is going up again. so we don’t know what that is all about. They did more blood work so depending on what it comes back as will determine if he gets to go home on Friday.
      I will let you all know as soon as I do.

      Thanks again

    • Anonymous
      January 16, 2010 at 10:28 am

      I just wanted to let you all know that Ryan came home from the hospital yesterday after noon. It’s nice to have him home. He will start cytoxan in aobut 2 weeks. He has to finsih his antibotics and then have another blood test done to check to see if the bacteria infectiion is for sure gone and then they have to check his whiteblood cell count. If everything is ok then he will start it.
      Again thank you very much for all of your prayers. I have attached a pic of Ryan on my profile.

    • Anonymous
      January 16, 2010 at 8:38 pm

      [QUOTE=Rhomcc]He is still in isolation but he is getting better. They are still giving him IV antibotics as the bacteria he tested positive for is a new superbug that tends to be resistant from antibotics but the two they hav ehim on is doing the trick. They do blood cultures everyday and he has been testing negative the last 2 days so it looks like he maybe getting over this.

      He is scheduled to go down to radiology later this morning to have a vas cath placed so tehy can give him 2-3 more Plasma pheresis treatments this week before he leaves the hospital.

      They said he will probably start chemo end of month or eginning of next month. they need to make sure he is recovered from this blood infection first.

      Thank you all for your continued prayers and encouraging words.

      God Bless all of you

      Rhonda & Ryan & family[/QUOTE]
      Hi Rhonda

      Just wanted to say best wishes for Ryan. Dreadful at such a young age.

      God be with you- right now.

      John ( UK)

    • Anonymous
      January 17, 2010 at 10:23 am

      Please keep us informed. I will definately keep you in my prayers. I have been following Ryan’s story and visit the sight frequently and always keep
      everyone in my thoughts. Ms. Judy

    • Anonymous
      January 17, 2010 at 11:17 pm

      It is really nice to see a picture of Ryan so that we know what you are talking about. By the way, he is extremely Handsome. We often pray for Ryan when we do our family devotions at night. I hope this works for him and he can go back to being a normal 20 year old and get married and have children and everything else that he should be looking forward to. Keep us posted. It is hard to see our childen suffer.

    • Anonymous
      January 21, 2010 at 12:43 pm

      Thank you for all the prayers. He is doing much better since getting home. He is recovering very well. I am taking him to Central Michigan University tomorrow morning, he has a interview for a RA position there for next fall. I hope he gets it because it will give him something to work toward. He says he is going back to school no matter what next fall. He can no longer take online classes after this semester because there just isn’t anymore availble to him for his major and minors.
      CMU pays for their room and board if they are a RA (Resident advisor). So that will be nice not to have to cove that expense. But it will be good for him to get back to his life and friends. But while we are up there tomorrow he is going to hang out with his friends and go to dinner with them. so it will be fun for him to do that.
      He sees the neuro on MOnday and has some more blood work done then and if it all comes back good then he will be starting the cytoxan.

      I will keep you all updated on what happens on Monday.

      Have a great weekend everyone

      Rhonda (Ryan’s mom)

    • January 21, 2010 at 3:19 pm

      Hi Rhomcc and Ryan,
      I am so proud of Ryan and I have nothing but admiration for the both of you for the way you have handled this tremendously difficult journey.
      I am certain in my heart that all the prayers, concern and support coming from everyone in evey direction are leading to bigger and better things for Ryan and your whole family.
      Sending more prayers and blessings!

    • Anonymous
      January 25, 2010 at 8:10 am

      today is the big day, ryan gets blood work done this morning to see if the bacteria infection in his blood is completely gone and also to check his white blood cell count. Then off to physical therapy and then neurology appointment with local neuro. The local neuro will consult with Dr Lewis and as long as everything looks good then Ryan should be starting cytoxan this week or next week.
      Dr Sullivan (local Neuro) should let us know today what the plan is.

update on Ryan

    • Anonymous
      November 24, 2009 at 11:43 pm

      Just wanted to let you all know that Ryan has been doing well. He has been doing good. He has been doing very good with his walker and at PT they have tried him using the forearm crutches. he does good with them but it makes me nervous. This past week they had him try a 4 point cane and well lets just say I don’t like him using it. he almost fell a couple of times but I know they have to try it to see if he is able to use it. To say the least I was happy when they were done trying it out. I think I held my breath the whole time he was using that cane. lol
      Ryan had his appt with the hemotologist and we got his test results back and they don’t think he has any underlying medical condition other than the CIDP. They think his immune system is what caused Ryan’s hemolytic anemia and not anyother condition. The hemotologist gave him the go ahead for Cytoxin. So he was going to caLL Dr Lewis and our local neuro Dr Sullivan and set up the cytoxin treatments. They said he could begin with in thenext week to 2 weeks from now.
      Ryan is very happy and is hopeful that he will be able to get better. His CIDP has been so aggressive that he was confined to a wheelchair within 4 months from dx and has been there ever since (april 2009). he has made some progress and yes he is very happy with that progress but he is hoping for more.
      I will let you all know once he starts the cytoxin how he is doing. Thank you for being such a great source of support through this difficult time. Ryan’s illness has been very difficult for him and the rest of the family too. Its good to know that we have a group of people who know what we are going through.
      For those who have begun cytoxin recently how are you doing? and what should be expect?

      Thank you
      Rhonda (Ryan’s mom)

    • November 25, 2009 at 12:39 am

      Hi Rhonda,
      I hear the hope in your words. Things sound like they are going in a forward direction. How great he is keeping up w/pt, because when the cytoxan starts working, he will be ready!! Sometimes I get mad, sad, pissed. Just the other day I was thinking, What do I have to be thankful for? Posts like yours and hearing Kevie right now having fun with his friends while playing xbox live refresh my memory. We have lots to be thankful for. Keep us posted!

    • Anonymous
      November 30, 2009 at 9:26 pm

      Hi Ryan and Rhonda, Had my 3rd Cytoxin treatment slightly over two weeks ago. The last one made me feel quite crappy, compared to the other two. I enjoy(live for?) good strong coffee in the am. On Saturday following the chemo, my wife knew I was feeling side effects when I skipped my coffee! Then the next day, a lucky niece got my ticket to the Packers/Cowboys game. Was the Cytoxin worth it??????????????????? YES. In conjunction with the Cytoxin, I recieve the PE weekly. Well after 15 years of getting stuck with needles, I now know what a needle stick feels like! It ain’t fun either. This is my best sign that my nerves are getting restored. Given all I’ve been through, I have been stronger since September and am looking forward to this Winter and 3 to 6 more Cytoxin treatments in the coming months.
      So all in all, a little short term discomfort now, and watch out later. Boy is my buckets list growing with options!

    • Anonymous
      December 1, 2009 at 11:49 am


      I am glad to hear that you are feeling better and that cytoxan is working for you. Ryan still hasn’t started it yet we are waiting on everything to get set up. we should be hearing from the doctor within the next day or two. I will keep you all informed once he starts the treatment. we are hopin git works for him. He gets very excited when he reads your posts and others posts about what cytoxan is doing for you. He is hoping it helps him also.

    • Anonymous
      December 1, 2009 at 7:10 pm

      I’m very glad to hear Ryan is up and walking.
      Was that just with the prednisone? (or pred combination with something else?)

      I hope the other med really does it for him!
      I’ve heard wonders about it.

    • Anonymous
      December 1, 2009 at 8:07 pm

      I had to go back into your early post to understand how far he has come. I am so happy he is improving. it sounds like it has been a long year for you and your family.

    • Anonymous
      December 2, 2009 at 3:55 pm

      Tara I must say yes it has been a very long year for our family. And Ryan has come a long way since July when he first started seeing Dr Lewis. Diagnonsense Ryan has been doing Plasma Pheresis and high doses of Prednisone. It has been almost 7 weeks since his last pp treatment and we are starting to wean him again off the prednisone. we were weaning but then on Nov 2 when we last saw Dr Lewis he wanted us to stop weaning the prednisone and wean off pp treatments. so now that he is almost to the 7 week mark he wants us to go ahead and begin the weaning off the prednsone again.
      He sent us a email this morning and wants Ryan to wait on the cytoxan for a bit. He wants to get him weaned down off the prednisone some before we begin the cytoxan. Ryan is a little upset but he understands that we need to see if after he is weaned down off both if he stays going uphill. if he begins going downhill then the cytoxan will begin immediately. But now its just a wait and see how it goes coming off the prednisone.
      A little disappointing for Ryan since he was told last week that cytoxan would begin either this week or next but I think because of Ryan’s age the doctors want to be cautious.
      It will all work out and we know that God has control over all of this and we need to leave it in his hands. I am thankful that Dr Lewis has Ryan’s best interest in mind. Ryan has been sick the last two days anyways. He has been running a low grade fever. n ot sure why but I am hoping he starts feeling better quickly. so he wouldn’t have been able to begin the cytoxan this week anyways.
      Thank you to all of you who have been praying for us and giving us support by your words of encouragement

    • Anonymous
      December 3, 2009 at 4:49 am

      Hi Rhonda,
      I have been meaning to write to you about Cytoxan, but haven’t been in great shape the past few weeks.
      But now that it is coming soon for Ryan, I want to tell you all about it-
      the good and the bad. I have been on Cytoxan for over 2 1/2 years now.

      First, he will most likely be admitted to the Oncology Ward for a full day.
      (Yes-it takes a long day–I get admitted at 9am, and usually leave at 7pm.)
      I have been at the maximum dose of 2000mg whenever possible, (this all depends on each months bloodwork, as if your white blood count goes to low, {anything below 3.8) or your Absolute Neutrophils go too low, (anything below 1500), your dose for Cytoxan gets lowered for the next month’s administration).
      Does Ryan have a port in? If he doesn’t, your doctor should arrange for one, since it makes life so much easier with a port in, for the infusions.
      For the first two hours, they will load him with fluids, (D5 1/2 N.S.).
      It is important that over the next three days, he drinks LOTS of fluids.
      If you are a concerned mother, (as I know you are), then ask the nurse for a copy of the orders faxed from the doctor. Every once in a while, something might get missed, and having been doing this for so long, I know to make sure EVERYTHING is on the order sheet, as if something is missing, then I tell the nurse, and they simply call the doctor to get the correction.
      You should show on the order sheet:
      -D5 1/2 N.S. @ 200cc/hr x 2hrs
      -The dose of the Cytoxan, such as I get 2000mg
      -Messna at a dose to match the Cytoxan, (to match my 2000mg of Cytoxan,
      I get 1000mg of Messna), IV pre-Cytoxan.
      -Messna at the same dose, IV post-Cytoxan
      -Zofran 32mg IV
      -Decadron 6mg IV, (or your doctor may opt for a different steroid)
      -Port flushed with Heparin.

      Now the reasons for these other meds with Cytoxan:
      -Cytoxan is extremely harsh on the bladder and the kidneys. Messna is used
      to protect the bladder and kidneys. That is why they give it before and
      after the Cytoxan infusion. This is also why it is important that he drinks
      lots of fluids over the next three days.
      -A side-effect of Cytoxan is nausea. Most doctors will infuse 32mg of Zofran
      with the Cytoxan administration. And will usually give you a prescription to
      take at home, but usually only 4mg or 8mg per dose, every 6 hours as
      needed. I also have another anti-nausea med, Tigan 300mg, that I can
      use in-between the Zofran doses, if I am real nauseous.
      -The Decadron or steroid is to assist with any inflammation.
      -And after all meds have been infused, they usually hook me back up to
      the Normal Saline bag, and finish out more fluids, as I said above, they make
      sure you get plenty of fluids.
      This lasts all day long. I go to a very good medical center, and all the nurses know me there on that floor. But, do double-check yourself that nothing is missing on the order sheet. The nurses do not mind if you question something.

      Now, when he gets home, for the next three days, every time he goes pee, it is important for him, (or if he has assistance from you), that you take some toilet paper and wipe the rim of the bowl and throw it into the toilet. Then flush the toilet twice. Then wash your hands vigorously. The nurses taught me that–he will have a toxic chemical in him. And of course it has to come out of him–in his pee–so, if it gets on your hands, you must wash them well. The nurses said that wiping the rim each time will not let anyone else come into contact with the toxic chemical. And they said the second flush makes sure it goes down the tube for sure.

      Now, Ryan is going to have some good months and some bad months. First of all, the first day after chemo, he will usually feel totally wiped out of energy the whole day. So, he should never make plans to do anything that day. Just get lots of rest. The good months is when he will have little or
      no nausea. The bad months is when the nausea is there–but that’s why you should have prescriptions at home for him. My first year of being on Cytoxan, on a bad month, I would be nauseous for maybe up to a week after.
      Now that I’ve been on Cytoxan for so long, I get the nausea for 4 weeks,
      right up to my next infusion, and I am losing a lot of weight. That is why my doctor is pushing me to take the Marinol now more often, (that is the pill form of Marijuana, which takes the nausea away and increases the appetite).

      Next–EXACTLY 10 days after he gets the Cytoxan infusion, he will have to go and have lab work drawn. Usually a CBC, CMP, SED RATE, and CRP.
      This will all tell the doctor what the next Cytoxan dose will be, with the aim of watching the white blood count and Absolute Neutrophils. Don’t be too worried if his red blood count runs low too, as if that gets too low after a long time, then they just give him a couple of units of blood–but that rarely happens.

      Cytoxan will work very well for many people, and for many people, it will put the CIDP into remission. For me, it was a last-ditch-effort. I did not put me into remission, but it slowed down my progression of the CIDP. Before I went on Cytoxan, three years ago, two of my doctors said I had about two years left to live. Then I went on the Cytoxan, and last year, my neuro told me that he thought the Cytoxan added about another two years of life. But there are risks involved with Cytoxan–too much destroys the bone marrow.
      And I knew that ahead of time, as now my blood labwork is coming in way low. But my choice was to either let the CIDP run fast through my body and I die of that, or to use the Cytoxan for this long, which slowed down the CIDP alot, but that now it is wiping out my bone marrow for being on it for so long. At least it gave me more time.

      So, Rhonda, I hope I was able to help you know what to expect, and I do hope this will work WONDERS for Ryan. But I had to tell you both the good AND the bad with Cytoxan. And as I mentioned above, ALWAYS ask to see the orders faxed over to them, as I have caught it twice where something was accidentally missed on the order sheet. Accidents can happen.
      Take care,

    • December 3, 2009 at 9:59 am

      How kind of you to give such a detailed explanation. Saving others with info you have learned in order to spare them is a true act of human compassion!
      DAwn Kevies mom

    • Anonymous
      December 3, 2009 at 12:22 pm

      Thank you Ken for sharing all of that info. Its good to know so that when he does get started we know these things. we knew about the side effects but I had not known about wiping off the toilet. That is good to know because we have 3 other kids and I wouldn’t want them to be exposed to anything toxic.
      Ryan isn’t starting cytoxan yet. Dr Lewis wants to wait a while longer now. He wants to wean Ryan off the prednisone. he wants to know if the improvements Ryan has made over the past few months are from the pp treatments of the prednisone. but he said if he begins to get weaker he will start the cytoxan right away. Ryan is disappointed he isn’t starting right away but he understands.
      I hope you start feeling better. we pray for you and your partner often. we do appreciate you sharing your knowledge with all of us. Its very helpful.
      God Bless
      Rhonda and Ryan

Update on Ryan

    • Anonymous
      November 2, 2009 at 8:23 pm

      Today was our appt in Detroit with Dr Richard Lewis. Ryan was so nervous because he wante4d to talk to him about cytoxin. Ryan wasn’t sure how it was going to go because it was brought up in an email to him and he immediately said he wanted to see us so he was scared the answer was going to be a big “NO”. But it went well. Dr Lewis knows that Ryan wants so badly to get back to normal (the way he was prior to being sick) he told Ryan he may not get to where he was before getting sick but he thinks cytoxin will get him better and possibly into remission. however, Ryan also has hemolytic anemia and we still don’t know what caused that. So he wants Ryan to see a hemotologist first and make sure that the cytoxin won’t make the hemolytic anemia worst. he will speak to the hemotology doctor once we have our appt with him and they will decide if its the right treatment for him.
      In the mean time we are going to try to stretch out his plasma pheresis treatment. he is suppose to get it on Friday but we are not going to do it and see how things go next week if he is still good then we will for go it next week too. we are trying to see how long we can go without it. if we make it to 7 weeks then we can stop it all together. if not then we have to contact him as soon as we start the treatment at the first sign of weakness. so we will see how it goes because we are trying to wean him off both plasma pheresis and prednisone.
      I will post more once we see the hemotologist and speak to Dr Lewis.
      Rhonda (Ryan’s mom)

    • Anonymous
      November 3, 2009 at 6:56 am

      Hope Ryan can get appt with hemotologist real soon so the cytoxin can get started. Sounds promising keep us posted.

    • Anonymous
      November 4, 2009 at 1:28 am

      I hope everything goes well for him. you cidp moms are something. I applaud your strength.

    • Anonymous
      November 4, 2009 at 10:35 am

      I am so glad that Dr. Lewis understands how much Ryan wants to be better than he is, as good as he can possibly be. I remember telling Dr. Parry, I wa crying actually, that I couldn’t live like I was. We had tried IVIG, solumedrol, & Plasma pheresis for 10 months without any lasting improvement. I couldn’t walk & had no real use of my hands. He understood & I believe he felt my pain. That’s when he suggested Cytoxan, I said Yes right away to his plan. I am glad that Ryan got to see a specialist in the field of CIDP; I am so happy about that, please keep us posted.

    • Anonymous
      November 4, 2009 at 1:31 pm

      [B][FONT=”Century Gothic”][SIZE=”2″][COLOR=”Sienna”]I can only echo what the others have said … Please keep us posted.

      Many supportive thoughts are going your way and Ryan’s way …[/COLOR][/SIZE][/FONT][/B]

update on Ryan

    • Anonymous
      August 3, 2009 at 10:05 pm

      PE and 80 mg of prednisone seems to be working, I don’t want to jinks it but he seems to be getting stronger. He has had 3 PE treatments so far (every other day for two weeks then every other week going forward) and he can wiggle his toes on this left foot, which he was doing a little bit before but it seems to be more than what he was doing.
      today he was laying on his stomach and he actually lifted his butt right off the bed and was almost up on all fours. which says alot for this treatment because as of a week ago he could barely slide on the slide board he was so weak. he would never have been able to lift his stomach even alittle bit off the bed let alone get on all fours. so we are praying for continued progress with this treatment. I just wanted to let you all know how he was doing.

      Have a good night!

    • Anonymous
      August 4, 2009 at 7:39 am


      I am so happy to hear that Ryan’s treatment is getting results … every little thing that is forward movement is so very encouraging … even if it’s a butt raise!!! 😀

      Thanks for the update – look forward to hearing more great things!!!!! Please let Ryan know we are pulling/praying for him (and you).

      Hope today brings much more toe wiggles!

    • Anonymous
      August 4, 2009 at 9:26 pm


      So happy to hear about the progress! Keep us updated.

    • Anonymous
      August 4, 2009 at 11:48 pm

      Woooo Hoooo.. good for you Ryan. Keep up the good work.

      Keep us posted Rhonda

    • Anonymous
      August 5, 2009 at 1:28 am

      Sounds pretty good !! I am so glad that there is good progress.

    • August 5, 2009 at 11:43 am

      Great news!
      Dawn Kevies mom

    • Anonymous
      August 5, 2009 at 3:39 pm

      Great news and my prayers are wth you all…

    • Anonymous
      August 8, 2009 at 3:38 pm

      I am very glad there has been some strength showing. I am hoping the PP will work for Ryan. He is WAY too young to have to deal with this.

      I wrote a post to you two. Keep up the faith that the PP will work. If ever you want to contact me, me email address is:
      If you ever have an questions on meds, PP, or anything else, just give a shout! I’ve been through it all…

      All the best,

    • Anonymous
      August 10, 2009 at 4:50 pm

      Ryan walked today!!!! For the first time in almost 5 months Ryan walked. He was at physical therapy today and he put his AFO’s on and told his therapist he wanted to try to walk and she did a few things first to check to see how stroing he was and then said lets go for it. He did it!!! with her holding his gait belt and him using a walker. I cried.. tears of joy.. but we video taped it so I could email it to Dr Lewis so he could see what a remarkable change there is in Ryan. He isn’t going to believe its the same guy. a few weeks ago Ryan couldn’t lift his butt up off the table even a little bit. I had to help him with all transfers and now he walked.. Praise the Lord!!!! Thank you Jesus!!! If you can’t tell I am over joyed. Finally a treatment that is working. The past 10 months have been hell for Ryan and us and we were wondering if he would ever walk again. thank God it is working. Now we will be praying that it continues to work. He still has a long ways to go before he will be allowed to walk on a reugalr basis or by himself but its a start.


    • Anonymous
      August 10, 2009 at 8:54 pm

      That is the best news! I am so happy for both you and Ryan. Keep up the great progress!!!

    • Anonymous
      August 10, 2009 at 10:28 pm

      Rhonda – that is outstanding (every pun intended) news!!!!! Tell Ryan I will be looking for his name is a marathon next year! Please keep us posted – it always is so wonderful to read good news. Thank you!!!!!