Mad and in the hospital

    • Anonymous
      March 9, 2007 at 5:14 pm

      Hey to everyone.

      We’re in the hospital for a 3 day stay with Dell. He will receive 15 grams today, 5 and 5 next days.

      Yesterday, I thought we had it all worked out with the nurse manager regarding him getting lidocaine before the iv. Today, after being here for a couple hours, my husband and I were informed by her that they do not administer lidocaine on the floors, only in surgery and they never wil (lidocaine in the shot). I think my blood pressure went to 150/150.

      She assured me on the phone yesterday it would be no problem and we were hoping for a good, calm stick for our almost 3 year old. He can’t have a port because of frequent fevers.

      I called Administration while the manager was in here and admin came about 1 hour later. She was very nice, listened to our problem. She suggested lidocaine 5% instead of 2.5%. We will try that to test it out.

      Our child gets stuck a minimum 1 time a week. That is too much. I hate creating a problem for anyone but it seems like anyone would go out of their way to help a child that is chronic and can’t have a port.

      Thanks for letting me whine.

    • Anonymous
      March 9, 2007 at 5:21 pm

      Hi Dell’s mom: The only thing worse than having GBS is watching someone you love go through it-especially a child. So I think it is great you will fight for what is right and not to worry about causing problems. A great caregiver is one who knows how to fight-I watched my wife fight for me when I couldn’t do it for myself. So do what you need to do and take care of yourself as well-whine as often as you can. I wish you and yours the best in the fight to get better. Jeff

    • March 9, 2007 at 5:25 pm

      Dear Dell’s mom,
      I am so sorry that you and your family and Dell are going through this! We are being admitted on Monday. Kevin also is nervous about the needles again. I know it takes longer, but when we had our spinal, they used emla cream before the ladocaine and when he recieved the ladocaine for the spinal he did not even feel the needle go in for the ladocaine. Since the iv is not as deep as a spinal, maybe emla would work for the iv. I think I am going to ask for it. I will say a prayer for all of you! I am so sorry this is happening to all of us! Good luck to you and your family.
      Dawn Kevies mom

    • Anonymous
      March 9, 2007 at 5:28 pm


      We are here to listen to you. Wish we could be of more help. Hang in there!

    • Anonymous
      March 9, 2007 at 6:51 pm


      Chrissy said it perfectly, we are here to listen. It helps to get it all out. Thinking of you, Dell and your hubby.

    • Anonymous
      March 9, 2007 at 8:30 pm

      Thanks everyone. It is tough doing this but I truly believe in it. I would kick myself everytime they stuck him if I did not speak up.

      I like to be nice to all the nurses, most are very good to us. We have become friends with many, especially since we see them so often. I can tell you their marital status, how many children they have, etc. It’s the bad ones and the ones that really don’t care about the patients that really get to me. I don’t understand why they go into nursing.

      My other pet peeve, coming into the room in the middle of the night and not being quite. Please, my child is in here because he is sick and likely, we are not getting great sleep either.

      Thanks again to all my cidp/gbs friends.

    • Anonymous
      March 9, 2007 at 8:54 pm

      will someone pls correct me if i am wrong, but i thought lidocaine was not to be given to a gbser? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      March 9, 2007 at 9:34 pm

      I searched the net to find a link between gbs/cidp and lidocaine. I would like to hear from someone if they know of a link. I don’t want to be giving him something that will further deteriate his health.

      Thanks, Lori

    • Anonymous
      March 9, 2007 at 10:00 pm

      Lori here is a link that might be good for you

      Also will cut and paste the article here

      Here’s some information that you should show to your dentist. Jethro posted it on another thread.

      Maybe the best information for GBS/CIDPer’s would be “Guillain Barre – Do not use Lidocaine” see weblink [url][/url]

      An endogenous pentapeptide acting as a sodium channel blocker in inflammatory autoimmune disorders of the central nervous system.


      Nat Med 2000 Jul;6(7):808-11

      Brinkmeier H, Aulkemeyer P, Wollinsky KH, Rudel R

      Department of General Physiology, University of Ulm, D-89069 Ulm, Germany.

      Reversible blockade of sodium channels by endogenous substances has been claimed to account for the fast exacerbations and relapses commonly seen in demyelinating autoimmune diseases. Evidence has been provided that in the cerebrospinal fluid of patients with multiple sclerosis or Guillain-Barre syndrome, a sodium-channel-blocking factor exists that has properties of local anesthetic agents. This factor could contribute to the nerve conduction block and paresis seen in these disorders. We describe here a previously unknown endogenous substance in human cerebrospinal fluid with distinct channel-blocking properties even at very low (0.00001 M) concentrations. The pentapeptide with the sequence Gln-Tyr-Asn-Ala-Asp exerted its blocking action by shifting the steady-state inactivation curve of the sodium channels to more-negative potentials, as most local anesthetics do. In the cerebrospinal fluid of healthy individuals, its concentration was about 3 &mgr;M, whereas in patients with multiple sclerosis and Guillain-Barre syndrome, it increased 300-1,400%. At these concentrations, the peptide’s blocking efficacy was higher than that of 50 &mgr;M lidocaine. At a concentration of 10 &mgr;M, lidocaine is able to ‘unmask’ subclinical lesions in multiple sclerosis; thus, the endogenous pentapeptide may well contribute to the fast changes of symptoms. Furthermore, it may become valuable as a marker of disease activity.

      PMID: 10888931, UI: 20348033 END


      P.S. You should make a copy of this and give to your dentist. Tell your dentist instead of Lidocaine, you recommend mepivicaine (Carbocaine®) or prilocaine (Citanest®) without vasoconstrictors.

    • Anonymous
      March 10, 2007 at 11:07 pm

      I am going to send the lidacane info. to Abby’s neurologists next week and ask him what he knows, I’ll do it before Thursday for Dell.

    • Anonymous
      March 11, 2007 at 1:44 pm

      I can’t imagine what your child is having to go through at such a young age, it is hard enough as an adult and for children who are braving and enduring the process, kudos to their spirit. These are the true champions in my eyes despite all their suffering they still find a way to smile.

      I have come to learn the power of acceptance especially when it comes to health care professionals for some it is a means to an end, a job and for some doctors it is thier business. In this material age where green is the color of way hard is it was for me to accept but ultimately I am learning. Don’t expect compassion from doctors or nurses and if you get some consider yoruself blessed. Money is time and for them time is money and helping is “work” though we view that part of their work is to help and show compassion. the rules of engagement have changed while our expectations have not. So I try and lower my expectations and I find by doing so I am surprised pleasantly more often than disappointed and I hold on to the pleasant expereinces and let go the percieved personal injuries.

      To address the issue of anethesia and autoimmunity. I am not sure if lidacane is used to put you under or just numb you but any procedure where anesthesia is used and you are put under for any period of time there is a possibility because the control of your immune system is shut down in this process on waking up if you were enviornmentally exposed to an agent that is linked to autoimmune dysfucntion you have a stronger chance of developing it post surgery. I’m not sure why some people do and some people dont but atleast for Lyme’s disease and the autoimmune problems it triggers there is a close link to it happening post a surgical procedure or trauma.

      I was at the Northwestern ER facing this resident neurologist who basically said to me that I do not have CIDP and that they wanted to redo all of the testing done over the last year to get to this point of my diagnosis. He was wearing Dolce and gabbana eye glasses and he was very slick in usage of language in basically tell me to get lost when my primary care doc had sent me there to get admitted. In that moment I reacted with controled but obvious hostility. On reflection and in a short time I realised I have a choice here to not let his words effect me and not allow myself to get dependent in my mind on his opinion.

      Good look with your childs treatment and sending lots of good energy his way. Don’t let these individuals effect your state of mind you have bigger fish to catch and release.

      cheers and my sincere best wishes,


    • March 11, 2007 at 1:49 pm

      Hi Lori,
      We are going in the hospital tommorrow, I was wondering if you were able to find out if there is any correlation between Dells deterioration and the lidocaine? Kevin had three in-grown toe nails removed (lidocaine was used to numb) and after reading the article that Sue posted it makes me wonder if he is relapsing because of the lidocaine. Coincidentaly he started relapsing shortly after the toe nail issue! I hope Dell and you and your family are doing better! Keep strong! Sincerely,

    • Anonymous
      March 11, 2007 at 2:03 pm

      Regarding the Lidocaine…

      While the article is interesting I wanted to point out that we have to compare benefits vs risks with using Lidocaine.

      We use the Lidocaine cream on Emily’s port before accessing. If we didn’t she would feel pain every single week. I want to avoid that so we use it. It’s a VERY small amount that is absorbed. Do I think that could affect her immune system? No and neither do her main 2 dr’s.

      As far as spinal taps go, every CIDP’er has had them & many have repeat spinals as well. Can you imagine having a child lay on a table with a needle sticking into their spine without the area being numbed?

      I honestly do not believe that a small dose of Lidocaine can cause CIDP to flare up.

      Dawn – Kevin HAD to have his ingrown toe nails removed. The area had to be numbed. Don’t beat yourself up with thinking the Lidocaine caused his relapse. It’s not worth it & will only make you feel worse.

      Lori – I hope that Dell is doing well & handling his treatments OK.


    • Anonymous
      March 11, 2007 at 4:30 pm

      Me again, LMX topical Anesthetic Cream (or what most of us remember as Emla Cream, to use before accessing a port) is 4% lidocaine.

    • Anonymous
      March 11, 2007 at 5:30 pm

      Cindy is right, the 4% cream is totally different than the injections used to numb. A few months ago I brought this question up regarding dental work done and someone here stopped me before i had the work done (thank you, by the way) But then again, we are all different, some of us it might not bother at all and some it would, just like the flu shot. There is no simply answer here. We can only share our experiences and articles that we have found to help each other but that doesn’t mean it is written in stone for each one of us.
      I wish you well with your family, you are in my prayers for rest and peace of mind. Please keep this family posted!