Thank you!

    • Anonymous
      May 14, 2010 at 11:05 am

      I just wanted to post a big thank you to everyone on this site for the support and encouragement and advice. I really believe that this site is a godsend for a lot of people. I was talking last night to my husband about how even my own family does not understand what I went through and what I continue to go through. The doctors don’t understand. My hubby, to his credit, has been wonderful. Some friends have been helpful, while others that I expected to be were not. Who can blame them? How can anyone really understand? I had never heard of GBS or autoimmune diseases and had no intimate experience with anyone who has this.

      When I came on this site, I had severe anxiety and depression about what was happening to me. I now know that I am not alone. I wish that we didn’t see new people on here, and wonder why these diseases keep occurring and there is so much suffering. I told my husband that this forum has been a godsend for my sanity and there are a lot of “angels” on here. This has been much cheaper than therapy. 😉 So thank you all for helping each other out and for trying to see the positives in the negatives and giving hope. Hope you have a nice weekend!!

    • Anonymous
      May 14, 2010 at 12:43 pm

      Welcome to the GBS/CIDP family Jessicah! I too, want to thank you all for your support, caring, sharing, & prayers, & helpfulness. Their is comfort sharing with sooooooooooooooooooo many fellow sufferers & family members.
      When I fisrt got sick I was terrified, watching my health, & sanity go down hill. Knowing something critical was wrong & worse, Drs. not knowing what was wrong. They kept refering me to other Drs. I stopped counting at 13 Drs.
      Anyway, thanks so much everybody!

Thank you

    • Anonymous
      February 28, 2008 at 5:52 pm

      Thanks it looks like it is working. Good Job.

Thank You!

    • November 3, 2007 at 3:11 pm

      sorry no info

    • Anonymous
      November 3, 2007 at 8:51 pm

      Tell him that this first time might pinch a little, that’s what my son, Kendal, said to tell him since they probably won’t use emla on it. They just pulled the skin a little tight over the spot to access and popped it in later on when he did not want the emla and he could barely feel it. But the first time he couldn’t have emla either and it was just a little pinch because he didn’t watch. Later he must have got used to it because he used to watch and tell them how to access his port himself of course then he would also tell me when I accessed it too. LOL Kendal wants tolet your son know that he knows exactly how he feels about that and to not worry too much and keep his head up, and stay strong it will all work out for the best.
      Trust me Dawn it is amazing what these kids can go through but yet still be a kid, yeah they do grow up a little faster than most but they still can act like a kid. I hope he has fun with his friend. Is what his friend have called perthis disease? Just wondering one of my nephews had that and was in a body cast for 3 months over the summer no less and a brace after for about two years. He is fine now at 24 and married with a kid of his own. Anyway our thoughts and prayers are with you both.

    • Anonymous
      November 4, 2007 at 12:35 pm

      I’m still not sure why you can’t use Emla for the first access. Emily’s nurse insisted upon it.

      Do you have the number for your home care nurse? You can call them & ask them what to do about it. Since Kevin is such a trooper maybe he won’t need the Emla. Make sure you tell him that the first time might be a little more rough because it’s new & the area is tender.

      I think most people keep the Emla on for about 30-60 minutes. Emily is more sensitive & needs it on for 1 1/2-2 hours.

      Good luck.

    • Anonymous
      November 4, 2007 at 12:56 pm

      Blue Man Group!! I love to watch them. I would not want to sit too close! LOL 😮 You can tell Kevin that there are many more here that care and just are able to read the posts but not able to respond or someone has already said what they wanted to say! But that does not mean that we do not care any less! Hugs! (((((Kevin))))) :p 😉 😀

      Oh I got this message, I over did it for Kevin. Good thing there are ways to keep someone like me from overing doing it for a child!

      “You have included 5 images in your message. You are limited to using 4 images so please go back and correct the problem and then continue again.”

      OK I took out the others that were COOL too! LOL

    • Anonymous
      November 4, 2007 at 10:10 pm

      Most of our kids use EMLA from the beginning-especially with the very little ones, we want it to be as gentle and kind as possible from the beginning. It is better for the needle to access the port not go through the incision line, but at both major hospitals I have worked the incision line is typically below the port. The tagaderm patch that it put on to hold the EMLA will tug a little more when it is taken off the first time. Using adhesive remover helps it to come off easier. EMLA works best 1 to 4 hours after it is placed. LMX4 works faster and typically we access port after this has been on for 30 minutes. After a while the skin (and child) are more used to the procedure and it is less painful, so some children use EMLA only 30 minutes before or LMX4 only 15 minutes of so before access. The longer the “magic cream” is on the port, the more numb it is.

      I also wanted to mention that some kids hate how sticky that tagaderm is and that it is hard to take off. The kitchen product “Press and Seal”, a saranwrap type sticky clear sealer works pretty well to cover the cream on the port and keep it from getting wiped off or on the clothes, but comes off really easily. Older kids like Kevie sometimes like it better because it does not stick much. You could think about using this in the future if the tagaderm removal part is tough.

      Because of comments here, I got to thinking that I have probably seem 1000 children with ports in the many years in health care and so I have seen some serious infections and complications from ports. I think ports are a tremendous blessing and it is seldom for a child getting chemotherapy not to have a port or a central line (Broviac/Hickman) because it is so important to help children get through medical care by minimizing pain and scaredness. The few that do not have these typically have a PICC line. My perspective as someone who has seen a lot of ports is different than most of you and I treat them with respect as I appreciate that they make a world of difference to providing gentle, reliable, central (to large vessel) IV access. We discuss with our families the importance of this respect and special care about infections and think that having everyone on board about it from child, to parent, to nurses, to doctors, etc it reduces the risks of infection and helps everyone to recognize this possibility faster to help keep the kids as safe as possible by starting aggressive antibiotics as soon as there are signs or symptoms of a possible infection. I do not mean to sound negative about ports, but do mean to say that being careful with them is a way that all of us can make this safer and reduce the risk of a serious infection associated with a port.

      With Hope for cure of these diseases (and gentleness to be given to all people).

    • Anonymous
      November 4, 2007 at 10:50 pm

      Hi Dawn!

      Kevin, if your mother is making you read this, I’m so glad to hear you’re hanging in there! If you end up riding down to DQ, get me a cheesequake blizzard please!

      Talk to you guys later!


    • Anonymous
      November 5, 2007 at 7:59 am


      I have not replied to any of your posts but I have kept up. I’m so glad he got the port. It is like night and day in Dell’s case. We love it and unless we start having some bad things go wrong with it, knock on wood, I never want it out.

      Love to you both,
      Lori and Dell

    • Anonymous
      November 5, 2007 at 9:54 am

      Hi Dawn,
      I am so glad the port is in. You sound very upbeat. It must be such a relief to have that behind you both.
      I hope things go well with the ivig & that Kevie gets his strength back quickly. I’m thinking of you guys.

thank you

    • Anonymous
      January 9, 2007 at 3:35 pm

      thank all who was kind enough to answer my first question. pinkynose was a very special pup she passed away sept25 my heart is stll breaking one more question for you does anyone have bowel blocks and bladder problerms I had colon cancer before the gbs in fact on dr suggested the mild chemo might have gave me gbs i just thankful to be here so what will be will be:)

    • Anonymous
      January 9, 2007 at 6:11 pm

      Did I understand you correctly that you have had GBS for three years and still cannot move? My Goodness….. And now your doctor has suggested that chemo may have brought on the GBS. Is there anything out there that doesn’t bring on GBS????? As I said in previous posts, the AMA doesn’t seem to have any idea what causes this. How do we avoid getting it again if we don’t know what causes it??

      My cockateil Percy died in my hands the night that my mom had a stroke and was in the hospital dying. He waited until I rushed home to shower and go back to the hospital to sleep at my mom’s side. My mom died the next morning. So my heart was broken twice in 12 hours. That is part of the stress that brought on my GBS.

      I am not one to push alternative methods of healing, but it your case, what would it hurt? I treat my body like a plant and give it supplements to keep my body healthy so it can fight off diseases. As my GBS was raging, I took what I needed to stay ahead of it. For Bladder and bowel problems, I took adrenal extract and cranberry capsules. I remember my butt felt like two HUGE marshmallows. Read my previous posts if you are interested.Vitamin C fights cancer….Linus Pauling, the only person to win 2 Nobel Prizes a book entitled: Vitamin C and Cancer. IS your blood type A?

    • Anonymous
      January 9, 2007 at 6:40 pm

      no i move i went from no movement i just worry after alll this is it’s is caomming back or this is as good as it gets:rolleyes: 🙂 to wheelchair to walker and now all alone:) my main worry is my feet and arm s are acting up alot i take my A’s B12 D’s and C daily Have been I don’t know dealing with a lot of stress and hoping that can cause my bowel and bladder trouble i don’t know just woke up on my Bday couldn’t move was on chemo at the time was in hospital 1 week before they even consider gbs fought for a neon findly did a tap and too pp weeks in rehab and came home in a wheelchair but it was home

    • Anonymous
      January 10, 2007 at 2:24 am

      To answer your question, yes! Usually it is not bowel blocks, as such. The nerves are not talking to the bowels so they don’t know what to do, hence no peristalsis (wave like motion) to move the contents thru. Then one may become constipated and need assistance. On the other side, things may not digest properly and one may have exceptionally soft stools.

      It is easy to forget (or not know) that most everything which happens in the body must be assisted by the nervous system. If your bladder nerves have been affect then you will have those issues.

      For me, when I have ‘over done’ and become to tired I’m usually not surprised when I have a flare of anything :p

      Since you previously had colon cancer it adds another demension to what may be going on in your body. Besure to check with your physician.