• Anonymous
      January 11, 2009 at 1:09 am

      Hi, My son is sick tonight. He has a fever, stuffed nose and stomach ache. I just put him to bed and he is horrified he will wake up paralyzed again. He does not feel like he did then but I have to admit, I am a bit scared too. I guess it is natural. He started to pee a lot before bed which freaked me out. I decided to cath him to see if he is retaining urine. He is higher than he usually is at night… 30 cc instead of 10-20 but not too bad. He also had a ton to drink late tonight and his urine was clear. I hope that this is just a cold that will come and go! I planned to take him to the ER if he had a large residual of urine.

      I have decided to send his records in for a remote opinion from Johns Hopkins and to possibly take him there. I was going to get the ball rolling on this on Monday. Please pray for us tonight. You all have become such a support for me.

      I hope I come on tomorrow and say he is still walking.

      Take care.

    • Anonymous
      January 11, 2009 at 7:04 am

      I will say prayers for your son and hope he is doing better today! I am just wondering if maybe he is getting a Urinary Tract Infection. I know when I get a UTI I get cramps, and fever and the one thing I notice is a constant urine problem of peeing more than usual. And at night is when it effects me the most.
      But I hope he wakes up okay and has no problems today. Good luck with your son and may he get well soon! Hugs!
      Linda H

    • Anonymous
      January 11, 2009 at 10:22 am


      I hope your son has shown improvement this morning. I’ll definitely keep you guys in my prayers.

      Take care,


    • Anonymous
      January 11, 2009 at 10:38 am

      Hi, Thanks for your thoughts. I worried about a UTI as well but he also had a stuffy sounding nose. Still, he was up peeing all night…. 60 cc’s from 12:30-2:30! Each time he said he had to go, it was a normal amount of pee so I guess he was “over-hydrated.” His fever seemed to break but I still gave him another tylenol this a.m. since I don’t want him to be so fearful.

      The good thing is that his strength seems to be the same. I think this may a good thing for him (and me) in the long run. He was able to get sick with a fever and still be okay with his strength and sensation. He was so scared he would wake up paralyzed! I was scared too… mostly about the urination and not about him being paralyzed. I thought this may set him back but so far, so good. He is in the shower right now.

      We will see how the day goes. Thanks for your thoughts and prayers. They may have worked!

    • Anonymous
      January 11, 2009 at 10:39 am

      Oh, I slept in sweats and had the car keys and cell phone ready to go to the ER if anything changed. I guess it is good I did not go but I wanted to be prepared!

    • Anonymous
      January 11, 2009 at 11:02 am

      What great relief for both of you that your son woke up not paralyzed.
      Will keep him in my prayers that he continues to improve.
      Your a great mom and caregiver to your son.

      Take care

    • January 11, 2009 at 2:21 pm

      Your angst is normal, we still go through it. In my mind, little as it is, scientifically speaking it would make sense that a cold, infection etc. would cause a relapse. The immune system is turned on so you would think it would increase the autoantibody production ( since throwing out autoantibodies is what we are lacking, triggering the immune system increases the production and we can not filter them out through the thymus gland) But amazingly the relapse does not happen. In your case, I would say that is a bit of an indicator that it is not cidp, you got a virus and no worsenning of symptoms. In our case, w/cidp, I guess it means the ivig is keeping things under control autoantibody vs antibody producton. Who knows. In any event, I can see you exactly sleeping in sweats with the keys. I have been in that same place. It will get better.

      About the uti, get the urine tested just to be sure, it will ease your mind. I guess you could also carefully monitor intake amount vs output and ease your mind that the increased urination was in fact a large intake. Unless I had physical evidence, I would doubt myself and continuously play the what if game. It is easy for me to tell you that you are probably right, he just had a large intake, but until you yourself are sure you will wonder. It took me about 2 years and a month to stop second guessing myself. I just started doing it. We are moms! It’s our job!!
      Dawn Kevies mom

    • Anonymous
      January 11, 2009 at 5:43 pm

      Thanks, I spoke with the pediatrician on call and he went in to do a urine sample. She will be calling me with the results. I’ll let you know. I doubt it is but want to know for sure. Also, I am thinking that he may be peeing a lot from anxiety. I know that can happen. I am going to cath him tonight just to see what is going on to make sure he is getting back to normal with his post voids. I imagine they can be a bit higher when you are sick but who knows! I will call his urologist tomorrow or tonight if it seems like I should. Thanks again. I guess it is a good sign that he is not feeling at all weaker with illness. Dawn, it does make sense that this may not an autoimmune thing like GBS or Transverse Myelitis given that he did not feel weaker will illness so soon after. I think most people generally do feel weaker.

      I’ll keep you all posted.

      Also, we are going to send his records to the Remote 2nd Opinion Program at Johns Hopkins neurimmunology and infectious disease department for review. I am finishing the forms tonight and will get his pediatrician to sign a form tomorrow.

      Hope to go the the hospital tomorrow or Tuesday to get the records signed out to them depending on how he is feeling.

      I don’t think we will see the same neuro again. With this whole thing, he admitted that she really scared him when she kept saying “This could come back and it could be worse” during our last appointment. Like he needs more stress right now! She also is not getting back to us about his next set of tests.

      I think we will wait for Hopkins and go from there.

    • Anonymous
      January 11, 2009 at 6:36 pm

      That would be fantastic if his bladder is coming back to normal and that would be why he is peeing alot! Maybe that is what is happening. It is scary I know when you are not sure what could happen next!
      I know when I get sick with a 24 hour virus it takes me much longer to get over that virus. My husband got sick last year with a 24 hour virus and it only lasted 24 hours. I caught it and stay sick for 4 days. And for me it’s very typical to see a Lupus flare right after that virus. And anything that has to do with my nervous system. I get scared!
      I pray your son gets well very quickly and hope this never comes back. Wishing you my best! Hope everything turns out okay!
      Linda H

    • Anonymous
      January 11, 2009 at 11:27 pm

      Hello, His urinanalysis was normal but the pediatrician is going to send out for cultures just to make sure given his issues. His post void was 30 cc’s tonight… much better than the 75 it was earlier in the day.

      We will see what tomorrow brings. He still has the fever, aches, etc… I think it is a mild flu. Lets hope it stays mild!

      Thanks again for all of your help and support!

    • January 12, 2009 at 10:25 am

      I forgot to mention this before. When Kevin gets a flu or what not, the areas that he was affected in most with the cidp intensify. In his case, his ankles, back and hands increase with pain, BUT THE STREGNTH IS STILL GOOD. We have been sick for about a week now. Hope you guys feel better soon. Sorry, but diaharrea (spelling) follows!!
      Dawn Kevies mom

    • Anonymous
      January 12, 2009 at 7:21 pm

      Hi, He still had a fever this a.m., sore throat and an upset stomach. I had a hunch he had strep since the fever had not broken and it didn’t seem like the flu. I waited until 2:45 to bring him to the doctor because I wanted to see his physician given everything that is going on.

      He has been keeping up to date with his records. He was thrilled that he had something wrong with him that could be diagnosed and treated! How sad is that! I was glad that it was not the flu since this can be treated easily.

      His pediatrician was glad we are seeking a second opinion. I fedexes the records to Hopkins today. I don’t know about you all but I was really upset at all of the mistakes in the record.

      I wrote down our own version of his history with the record. I plan to go down the get the rest of his stuff sent out tomorrow.

      I will follow up later this week to see if we can get an appointment in a reasonable period of time. If not, we will do the remote opinion.

      It feels good that we are doing something. His neuro has still not called about vascular tests.

      Take care… just wanted to leave an update.

    • Anonymous
      January 12, 2009 at 8:28 pm

      Good to hear you found out what was going on with him. That Strep is going around. Can make you feel pretty bad. I hope you get lucky and get in fast at Hopkins! Maybe there will be an answer as to what happened. Good luck!
      Linda H

    • January 13, 2009 at 9:12 am

      Just a little trick we learned regarding records. If you sign a release at every hospital or specialist allowing the records to be sent to your local doc, you can avoid having to pay for the records. Also, each time we go to the doc, I ask for a copy of the notes either at the finish of the appointment or the next day I have the nurse fax it to me. We keep everything in a binder with tabs, neuro, primary, test results, hospital stay, etc. In the beginning, I carried this binder everywhere and always had copies so that I could give the doc one if he needed it. Twice the copies of the ncv/emg we had came in handy as they did not pull our last test up and would not have been able to get an exact comparison. I am sure you know all of this stuff since you are in the medical profession, but just in case stress form your son being the patient has gotten to you, I thought I would mention it. Thinking about you guys and glad you sent the info off to Hopkins. I am praying you get a concrete answer so you can rest easier. Good luck.
      Dawn Kevies mom

    • Anonymous
      January 14, 2009 at 8:43 am

      That sounds like a much better way to keep the records! I will plan to do that from now on. I am going to call his pedi office to ask for office notes after our next visits since I have it all up to now. Thanks for the advice. I always tell patients that most people keep better records of their car maintenance then their own body maintenance or illness. Now I have an answer when they speak about cost!

    • Anonymous
      January 14, 2009 at 2:48 pm

      Good afternoon,

      I’m a bit late on my reply, and for that I apologize.

      I have gone through GBS twice, both were severe cases, I have been told. I don’t think I get a sniffle/cough/fever/ache/anything that belongs on the Nyquill commercial where I don’t think about the symptoms coming back.

      No one can fault you for your angst, being prepared. It is always better to be prepared rather than not prepared. Even I still have all of my insurance cards at the ready AT ALL TIMES.

      One thing I’ll pass on that I had to learn again and again is something my Rehab doctor told me on a check up to see her. I was stating that I hwas having problems with something or other and she stated to me that I did not need to put my life on hold – meaning (to me) use caution, but live life to the fullest. Take each day as it comes and do the best you can.

      I read and re-read this message and it sounds remarkably like a Hallmark card for getting well, and I don’t mean to make light of it, however it was on my mind after I read your message.

      Please take care and be safe.

    • Anonymous
      January 14, 2009 at 7:21 pm

      Thanks for your advice Brett. My son is writing about this ordeal. He just decided to on his own. I think it is going to be very therapeutic for him and interesting for my husband and myself to see his perspective in a new way.

      One thing he already wrote in his introduction is so telling from a 12 year old boy…

      “. I had to realize that life in a hospital is a whole different world and you always have to take advantage of what you can do other than what you can’t do.”

      Of course, he needs a bit of grammar work but it is a huge lesson to learn at age 12. I try to remind myself of this all of the time. His teacher from last year who he has remained very close to is helping him edit this. I can’t wait to see the final product. It is already several pages and still just in the beginning!

      Take care.


    • August 16, 2007 at 10:38 am

      sorry no info

    • Anonymous
      August 16, 2007 at 10:50 am

      I can’t answer your questions, but I just wanted to send a huge hug your way. You seem to have the weight of the world on your shoulders and I know how hard that is. I’m sorry you are not getting help from your husband. You are a strong and amazing person. I know it gets really tiring being the strong one all the time and sometimes you just need someone else to take the reigns. That’s okay. You need time to be yourself too. Is tehre anyone who can take over just a couple hours a week for you- from the hospital, or maybe a local volunteer organization?
      A great big hug to you! Take care and be well.

    • Anonymous
      August 16, 2007 at 11:23 am

      Dawn, I can’t answer your questions either because I have the same ones – is it CIDP or GBS residuals? But I’m sending you lots of hugs and positive mental energy and I plan to ask my neuro 9/7 that exact question so if I can get a decent answer I’ll post it here.

      As for Kevin’s symptoms – my only suggestion is to watch and wait. Sometimes random things happen to me – a sudden crippling pain that goes away on it’s own, or a day where breathing seems more difficult – they usually do resolve on their own and I don’t feel a whole lot weaker overall. In fact yesterday I had a really good day but today I am exhausted again.

      I am so sorry you are managing so many things right now. It must seem like you are all alone out there. Please don’t give up. I know there were times when my husband was run ragged and there was little I could do about it but these things come and go in cycles. Things may look horrible this week but the same situation may look totally different next week. More rest would help you a lot, I think, so maybe you can start thinking about when/where you can throw a catnap in to recover some energy and see about getting some help. There may be people in your parent’s circle of friends that would be willing to help with things like grocery shopping and cleaning (even mowing the grass!) Surprisingly three young Morman’s from my neighborhood showed up at my door last week offering to clean the house – they heard I was sick and they needed to do community service for their church so offered to come in and clean the house. After I got done bawling at their kindness I did accept some help cleaning out the dog pen and their room. There are people out there who can help so please don’t think you need to shoulder this burden alone.

      In the meantime I recommend a glass of milk and a chocolate chip cookie. That always makes me feel better. 🙂

    • Anonymous
      August 16, 2007 at 11:24 am

      I am so sorry to hear your plight, Dawn. I can relate to you in some ways. You’re right about the friend thing, we all find out who the real friends are when things get tough. When I got sick, I would love when my sil would show up with a store bought banana bread, and ask, do you need help w/anything, the day after my mom had done all the cleaning etc. A real friend doesnt ask, they do. Best wishes to you and your son. You are strong, I know you will feel better.

    • Anonymous
      August 16, 2007 at 12:51 pm


      Please please please dont get into the funk you got into in the beginning of the year. I just dont know what to say to you to try and help things, i feel helpless.

    • Anonymous
      August 16, 2007 at 1:28 pm

      I’m so sorry to hear all of this. It really seems like the Universe is testing you right now. If nothing else, please try to do one thing: take care of Kevie’s mom. He needs you be well so that he can stay well.

      Big hugs,

    • Anonymous
      August 16, 2007 at 3:42 pm

      Dawn it sounds like the water slides might of been enough to set him back a few days where he would need to rest. I think the exhaustion is coming from the sinus infection. By now you should be seeing signs of the residuals letting up if it was last weekends celebrations. But I would not stop doing those kind of family events in the future. Just pace the day a little bit better with maybe a break in the afternoon when the sun is hottest with a board game on a towel in the shade. Or a rest after eating. Water will tire the strongest body out. The resistance from the water is quit the work out in my water classes. In the meantime treat the sinus infection. They zap my energy when I am healthy and on top of the GBS they would knock me off my feet. Kids are like puppies they will play till they drop from exhaustion. Now to yell at you! My dear you know we want you to come here and vent because we do understand. We have the same questions as you are asking yourself. But her it goes! There is no such thing as a [B]stupid question[/B] if it is important to you it is important to us you get an answer or at least some suggestions to work through. As far as getting help that sounds like you need to have a family meeting and find out who is more comfortable doing what detail. If no one wants to cut the grass you either cut just a smaller area around the house and cut the field a few times a year. Do only the things that keep your family healthy and safe. The things that matter should get priority. You, your Son and your husband can help with little things to help out your Parents. Don’t try to do this all yourself. This is a family issue and family should help. Find out where you need help from other friends and family and tell them you are NOT able to do those kinds of things. If they do not volunteer, shame on them! Hire someone to come in and help out once in a while. I think it was a great suggestion to have someone that needs to do community service to come in and cut the grass during the Summer and in Winter someone might need to raise money for their band trips and need Winter jobs. There are agencies and Judges that are looking for jobs rather than send someone down to the fire house to polish the fire trucks. Boy Scout troops and Girl Scout troops are always looking for year long projects too. Take a deep breath and don’t let anyone pile all this on you. Watch those glasses of milk and those chocolate chip cookies, they can be habit forming! YUM O! Private Message me if you need to talk!

    • Anonymous
      August 16, 2007 at 4:12 pm


      Have a good cry and let all of that stress out. You have been through so
      much lately…a caregiver to everyone. I, too agree with LadyKitUsa that the
      whole vacation might have been too exhausting for your son. He needs to
      rest a lot. So do you…but when can you do it with all that you do?

      The chlorine in the pool could have also irritated his system…the skin does
      absorb chlorine in the water. This could have had an affect on his sinuses.

      Just keep your eyes open, watch for signs, but try not to get upset. I agree
      a 10 yr. old shouldn’t have to discuss his pains, etc. Try to keep the issues
      away from him so that he doesn’t have to think about them before he starts
      school again.

      You need a vacation for you…maybe discuss sharing the load more equally
      with your husband?

      Many hugs for you and you do have the strength to get through this…no one
      ever gets tired of the questions or thoughts you have…you are a great
      person. Keep the faith.


      Miami Girl

    • Anonymous
      August 17, 2007 at 5:49 am


      Sending you huge cyber hugs from downunder!!!!

      You are such a strong and loving person who has taken on so much – not only do you care for your son (and the rest of your family) but you have taken it upon yourself to learn everything you can about your sons condition and make sure he is receiving the best care and treatment possible. That is a fulltime committment on its own. You have every right to have a melt down every now and then. You may as well make it a good one lol;)

      I dont think there is anyone here that doesnt have the occasional panic over a new symptom – is it a residual, is it a relapse? So dont ever feel silly for coming here and asking questions. I have just come back from a holiday interstate and i am absolutely shattered. I was fine at the time but believe me it is starting to catch up with me now. I have also had a chest infection which didnt help either. I think you just have to accept that no matter how great you feel, you are probably never going to be exactly how you were before and you can never tell how things will affect you. I can walk a long distance and have no problems yet standing still to do something like ironing will leave me with agonising feet. I have stopped trying to look at GBS logically, logic has nothing to do with it.

      Anyway Dawn, hope you are feeling better and hope you feel like you can come here and vent here anytime. Take care of yourself and that beautiful boy of yours.

    • Anonymous
      August 17, 2007 at 11:17 am

      Hello Dawn,
      I think every single one of us would say we’re not frustrated with you. I wish we had the magic for you that would answer your questions, but we don’t. Maybe time will show that Kevie was just worn out more then he was aware of from your trip to the Dells.
      You are just very overwhelmed by all that’s going on in your life and that makes you feel like you want to run away from everything, so please try to take care of yourself too. You cannot care for all those who need you unless you care for yourself first.
      We’re here for you to talk to anytime you need us because we “DO” feel what you feel.
      From my heart,[IMG][/IMG]

    • Anonymous
      August 17, 2007 at 11:49 am

      Dawn, stop apologizing to us, you know we are here for you as well as your family members. No matter what the problem is, we are here for you. Let it out Hun!! We do understand your frustration. I agree with what others have wrote, you need to care for yourself first, then deal with the other problems one at a time. You’re the Strength for Kevie, you need to destress so you can be an even Better Mom then you already are. You are a Wonderful Mom, doing all the research for Kevie, I just wish there was a manuel with all the answers to all the questions to this syndrome to make it easier and less stressful on everybody. But since there are sooo many unknowns about it there are no clearcut answers.
      Kevie might be just having a delayed response to all the activity of your vacation, it sounds like you all had a great time, and that in itself can lead to a lower energy level. Maybe a week of less activity will help, movie time, video time, just general relaxing-whatever way is easier on you and Kevie. Just as Kevie needs time to reenergize his batteries, you need to reenergize yourself. I know its hard to put your needs up front, before your families and kids’ needs, but it sounds like it would do you good right now. Take alot of deep breaths, sit in a comfy chair with a tall glass of something refreshing, and just reconnect to your inner you. You will have a renewed view of life, problems and family needs, but most important is the way you feel mentally, Refreshed and ready to go at it again. email me anytime, for any reason! HUGE HUGS!!!

    • August 17, 2007 at 11:57 am

      You guys are so kind. God brings us to others in the weirdest ways. If it had not been for Kevies illness and my stumbling across this sight, we never would have met (cyber met anyway) I wonder if everyone on this site really realizes how much understanding and kindness we get from each other. I do not even have GBS and you guys help me, how wonderful you all are!

      Kevie is feeling a little more energetic today, the breathing issue has seemed to subside by half. I guess it doesn’t matter if it was from the cold or his body catching up from the Wisconsin Dells trip, as long as it is going away. When he woke up today, he actually said he has not slept this good in a long time. I think that the melatonin that the doc suggested for sleeping is helping as well.

      Thanks again, you guys are really the best, what would I do without you?

      Dawn Kevies mom 😮

    • Anonymous
      August 17, 2007 at 2:11 pm

      Hey Dawn, I just wanted to add that my husband reminded me that I usually DO have a delayed response to overdoing it. Let’s take Sunday for example, we went to a family reunion about 45 minutes away, all in all a pretty lazy day, mostly spent it in a chair in the shade. Still I lasted for almost 3 hours which is kind of a record for me. I felt alright that night and the next morning I was only a little tired but that afternoon and the next day I was wiped out. Same thing happened Wednesday – had some energy, ran around doing house stuff, felt OK, managed to stay up until 8pm – then next day and today I’m feeling like I’ve been hit by a train again. I don’t know why that is but apparently it’s been going on like that for longer than I remembered, as my husband reminded me this morning.

      It may not be the same thing but I thought I’d throw that out there. 🙂

    • Anonymous
      August 17, 2007 at 5:50 pm

      Dawn, I’m sorry I’m just now finding this thread. It really doesn’t sound like a relapse from what you stated. It sounds like he overdid. I have exactly the same problem when I overdo. I feel so tired(especially in my legs). My pain also increases. It’s very likely his back hurts because he pulled it at the water park. He needs to rest for a few days(sometimes it takes me over a week to recover). I tried to ride my horse and it messed my gait up for 2 weeks and I hurt!! He may also be sick from a sinus infection. If he is not felling better now I would suggest a visit with his regular doctor for some antibiotics.
      When I got GBS I had to let go of my take care of everybody mentality. As Kevins Mom you need to ask for help from your family.It is not a weakness. It is necessary. You sound exhausted and everything always seems worse when this happens. Also, Kevin is at the age he can do more for himself. Enable him to take on more responsibility when he feels better. He will become stronger for this. And you really need some YOU time. Dawn you have been so supportive of me and it makes me sad to see you so stressed. Oh, also for the insomnia try neurontin. It makes me sleepy and helps with the leg pain.Benedryl is also helpful for imsomnia and will help his sinuses to boot. Thinking of you , Shawn

    • Anonymous
      August 17, 2007 at 8:37 pm

      Hi Dawn,
      I wish I had someone like you who was there for me!
      I’ve had CIDP for years now and I still can’t work out – when I am feeling horrible – if it’s a new attack or residuals playing up from overdoing things.
      I stayed up late last night watching a movie on TV – something I don’t usually do – and I feel horrible today. That was all it took to wear me out.
      I also know whats its like to be a mum (thats how we spell it in Australia – you probably know that though) and when our kids are unwell – we just want them to be better again, soon!
      I hope your son continues to improve.

      Best wishes,

    • Anonymous
      August 18, 2007 at 10:52 am

      Dawn –

      I’m sorry that you are having such a hard time. Is there any way that you could get a home health companion to help take care some of the parents? They can come out & cook, clean, take the parents to the dr’s, etc. You could also get a lawn service to come cut the grass. You are simply taking on too much. As mothers & women in general, I think we talk ourselves into being able to help everyone & we put our selves last. That NEVER gets us anywhere. You need to take care of YOU too.

      As for what is going on with Kevin, it’s probably just the sinus issues causing all of this. Kids USUALLY present with pain first with these diseases. So as long as he’s not having pain in his feet, ankles & legs…I’d say that he’s alright. The back pain is something to keep an eye on though.

      It’s in the hardest times of our lives that we learn who our true friends are. Sometimes though our friends can’t understand what we are going through or it might even be too hard for them to face themselves, so they don’t connect as often as they used to. That’s when you need to find people who can understand & appreciate what your life is like now. Try to find other parents, in your area, who have children of sick kids. Maybe call the local hospital to see if they have a support group.

      Take it easy, ok. It will get better.

    • Anonymous
      August 19, 2007 at 3:35 pm

      Hi Dawn, I am thinking of you and Kevie. I agree, it sounds like a case of slightly overdoing it. We just got back from vacation or I would’ve responded sooner. I took a whole 11 days off from the internet!

      I am glad it sounds like he is doing better now. Let me chime in with everyone else to say to try (I know, it is hard!) to take care of yourself too–you sound very worn out, and who wouldn’t be? I have felt very much the same way, and I don’t have aging parents to care for as well. Just worrying about your child is overwhelming enough! The good news is though, it really sounds like it was a residual flare up combined with that icky tired feeling from having a sinus infection. Try to focus on how much fun he had on vacation, and not on the after effects. Keep thinking how as time goes by, he will get stronger and stronger. Trust that.

      L. is getting stronger, bouncing back quicker, but still some days are harder than others. That is when all my worries multiply, and somedays you do just want to escape. Anyway, take care and I hope each day gets better.


    • Anonymous
      August 19, 2007 at 8:43 pm


      Ben and I will be going to the neurologist this Friday in Hoffman Estates. If Ben is feeling well, would you like us to stop by for a visit, or grab a bite to eat somewhere? Please let me know if we can be of any help. As you know, we’ve had a lot of set backs too this summer. It s*cks. I hate GBS. On a more positive note, the best things that have come out of this illness are: 1.) Great friends from the GBS forum; 2.) A closer, deeper relation with Ben; and 3.) A wonderful neurologist who we’d never have met otherwise.



    • Anonymous
      August 19, 2007 at 11:10 pm


      If you remember, our first dx. for Dell was SMA, the next one was the fatal disease where he would die before he was 5.

      Well, after returning from the hospital, I could not stop crying and planning the funeral. It was an awful time in my husband and my life. I needed help and I went to my og/gyn. I sat down at his desk and said “you have got to give me something.”

      I have never liked pills, I might take 4 tylenol in a year but I knew I could not do this own my own. After about the 2nd week, I couldn’t cry and I was really feeling better.

      Thank God, we found out Dell was not dying and I went off of them. But, I am a firm believer in them.

      I hope you don’t take this the wrong way, but that is my recommendation to you. You have a lot on your plate and the way you are talking about leaving this earth, that is not the way you should be feeling.

      Do you know what our priest spoke about in his homely today, Rose Kennedy buried 3 sons. She never lost faith and attended mass every day. I can’t say I would have that much faith but she must have been an awsome woman.

      Love to you and your family,

    • Anonymous
      August 20, 2007 at 8:23 am


      I am so sorry you’ve been having a tough time. I cant imagine my son having this crap. Having it myself is bad enough, but it’s me, and not him.
      I am sorry you have all the worry and stress.
      Please hang in there…you are so strong and such a fighter for that little guy.
      He’s very lucky to have you.


    • August 20, 2007 at 11:41 am

      Thanks guys for the replies!

      Lori, when Kevin was first mis dx with cmt and I was told both kids would be in wheel chairs I did go to the doc. She gave me buspar and xanax. I never took them so I could be on my game. Well, I did yesterday and the day before (xanax) It did nothing, not even a buzz. I know I will be strong enough to be here for Kev, it is just so hard sometimes. My husband is useless. He doesn’t even have a clue. Oh well.

      Maybe you guys could give me some thoughts on another subject, I am going to start a thread about sleep.

      As always,

    • Anonymous
      August 21, 2007 at 5:46 am

      Dawn, I am sending you lots of hugs and love your way for you and Kevin, Please know you are a very loving and caring mother. You need to try and take a few minutes a day to yourself. I know this isn’t easy but it will help you in the long run. Try to stay positive and know you need to take care of yourself because both your children need you. Hang in there and if you ever need to chat you know how to get in touch. Take care and know you are loved.

    • Anonymous
      August 21, 2007 at 10:50 am


      You didn’t say that you were stopping the xanex but it’s going to take up to a month to work.

      It took about 2 weeks for the one I was on to work. The way it affected me, it made me not want to cry all day like I had been doing.

      Love, Lori

    • Anonymous
      August 22, 2007 at 10:15 pm

      I am not going to have any answers to your questions, but I can feel for you and your pain,

      Hang in there, things will they WILL get better.

      Hugs from Minnesota.

      Natalie and Abby


    • Anonymous
      May 25, 2006 at 6:51 pm

      Had appt. with Neurologist. She will do Lumbar Puncture on Tues. to confirm GBS. She also thinks it could be Charcot Marie Tooth. I just looked this up and it doesn’t sound too good. Has anyone been tested for this or had this considered with GBS?


    • May 25, 2006 at 8:47 pm

      I want to tell you don’t be scared…..but you will be and we will be for you.
      We will be praying for and thinking of you and hoping for good news.
      Peace be with you.

    • Anonymous
      May 25, 2006 at 10:25 pm

      Hi PK,
      It’s ok to be scared, we’ve all been there. Just remember to ask questions when you want answers and realize this does get better. Keep us posted.

    • Anonymous
      May 26, 2006 at 11:21 am

      Hi PKRN,

      One of our Senior members from the old forums was diagnosed with CMT,
      hopfully he’ll see this and give you some answers.

      It’s ok to be scared, everyone is, not knowing much about these illnesses can wreck havoc on your thinking and emotions. We all understand what you are feeling. That’s why these kind of forums exist to help others. Plus at least you know that the great people here know exactly how you feel.

      That is why this is a Family. 🙂

    • Anonymous
      May 27, 2006 at 8:22 am

      Hi am a survivor of GBS and yes it was scary, just keep the faith and put you body and soul to the good Lord he will see all. I will pray for you.

    • Anonymous
      May 28, 2006 at 9:41 pm

      P K
      We are always scared of the unknown. I will be praying for you too. If you can ,take someone else with you for doctor visits. Sometimes they hear something we miss, or misunderstand , or ask questions we don’t think of.
      You are loved by all of us. Mary Ann