body temp messed up

    • Anonymous
      January 4, 2008 at 7:55 pm

      I am reletively new here…my 3 year old daughter, Hillary, had GBS pretty badly in April. She is doing well, but I have a few questions. She is a very tiny little girl–petite and small for her age, but healthy (until GBS). Anyway, before GBS she was always hot, even in the winter. Even if it was cold outside, she would sleep in short sleeves outside of her covers. Now, after GBS, she is freezing most of the time. Situations where a person is a little cold, she has blue lips! Anyone else experience this?? It is like she has been rewired.

      Also, is there a link between GBS and epilepsy?

      That is all I can think of right now. Thanks everyone.

    • Anonymous
      January 4, 2008 at 8:13 pm

      I know if I go outside in the winter my hands are freezing cold even with warm winter mitts on. I find I am either really hot or cold no middle ground.
      I try to wear layers so I can adjust the temp. Try a undershirt then layer with sweater to see if that helps. Also keep her feet warm, usually if your feet and head are warm the rest of the body might stay warm.

      Our family uses rice packs all the time. Make them by taking some cute material, wash and dry it. Then sew a pouch and fill with rice. Sew it closed.

      Place in microwave for 1-2 minutes. They stay warm a long time!

      Good luck.:)

      Rhonda from Canada

    • Anonymous
      January 4, 2008 at 11:05 pm

      The nerves by the spine control body temp and the body’s response to fevers and chills. Signals will be messed up for years until they heal. If they gave her blood thinners that would make her chill easier too. When in the ICU I was burning up and sweating to the point of a soaked bed. I wanted the fan on me it was so bad. I had them open the window and it was 16 degrees outdoors and I was still HOT and sweating. I had them turn of the heat in my cube. Nothing worked! for 7 or the 9 weeks I was in the hospital I used that fan and kept the heat off in the room. Then double blankets were still a must! Even now after 2 years and 2 months I watch tv under a down quilt. I wear flannel and log sleeved sweat shirts. Door opens and I get chilled for hours.

      My friends teen had GBS from the waist down and her fingers are cold to the touch and turn red. I can not think of the disease yet but being cold is not fun at all! Hot showers and baths are not good for the GBS person and children don’t enjoy them like an adult would anyways. But they don’t work.

      It is the faulty wiring of the body giving off wrong signals. I hope it does get better. Just work around it is what I am doing. I am aways over dressed in long sleeves in the Summer! Under dressed in the Winter. Remember GBS also stands for Getting Better Slowly!

      Please give her a big hug from us!

    • Anonymous
      January 5, 2008 at 12:22 am

      This is not an unusual residual ๐Ÿ˜ฎ Kit mentioned baths not being good for GBS but I would have died from being cold (well, it felt like it!). The only way I could warm up was to get into a tub of hot water ~ a shower never worked. Then once I got my temp up into a “normal” range, I’d towel off quick and jump into bed with my rice bag ๐Ÿ˜€ Sometimes my temp will go as low as 96.8; at least that’s the lowest reading I’ve caught up with. I find it extremely painful to be so cold. At one point, I was diagnosed with Raynaud’s Syndrome but now know that it was one of those frustrating residuals.

      Please give Hillary hugs from me ๐Ÿ™‚

    • Anonymous
      January 5, 2008 at 9:21 am


      keep her warm. her internal thermostat has been reset by gbs. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 5, 2008 at 8:56 pm

      Raynaud’s Syndrome that is what my friends teen daugher had. If I don’t come up with the terms I know I can count on this group! Their memories are better than mine for the details. Yep too hot or too cold would start my body into shaking tremors it was aweful. You have to find what works for your body. I was not able to sit in the tub for very long due to pain in the butt like I did not have any padding to sit on. I could see it was plenty in the mirror so I know that was wrong! I have experienced so many weird things from the nerves not functioning correctly. Coins on the floor felt like I stepped in a puddle from the dog. Towels felt like steel wool. Some things like rice and dried foods felt like they were sharp and would cut me. I would look at what I was touching and it was not hot at all or it was not cold or wet. It was and still is very strange. I can not feel money in my fingers. I have to watch what I am counting since I can not feel them there. Pages of a book are hard to turn and feel so I watch the page numbers so I don’t skip a page. Once you deal with this longer and longer you will learn how to tell people what you are feeling. For a child I know communication has to be poor. I had a tough time explaining what was happening and how I felt. Keep working on getting better and a possitive attitude is a big help! When I got tired I walked like a penquin. We would laugh about it. When I got tired my eye lids would droop. Hubby would ask me if I wanted to go home or take a nap. I knew he was seeing how tired I really was by my eyes or my walk. Take care everyone!

    • Anonymous
      January 6, 2008 at 2:41 pm

      Hi all,
      You are all so helpful but the situatoin is so discouraging! My daughter has been a very strong-willed, bright little girl since the moment of birth, and it is SO HARD for me to know what is GBS and what needs discipline. The more I ask quesitons here, the more I realize I have disciplined her for things that are from her GBS, not willful disobedience. Tell me she will understand this when she is old enough and I can explain it to her! Tell me she can forgive me! Many of the things that are showing up now (7 months after onset) are things her neuro won’t really discuss. He is good, but older and very black-and-white. Ahh . . . thank you for “listneing” and for your input. Keep the info coming as you think of things (like what things feel like to a GBS-er). THANK YOU!

    • Anonymous
      January 6, 2008 at 11:38 pm

      Well don’t be hard on yourself. She has forgiven you the next day and we are the ones that put ourselves on a guilt trip. Sure she will understand. The fact that you love her is what is in her heart and memory! That fact that you care! Run stuff by us and notice we tend to blame everything on the GBS and then find out later that we were reallying coming down with a cold and it was not the GBS. It is hard sometimes to be possitive all the time and we remind each other of that all the time. One thing we all need is support! One thing we all have is our opinions! Just answering each other’s questions is so helpful and we do have fun together too sharing stories. Come here to vent often…..we all do that! Just give her a hug and see if she gives you one back! Give her a complement and see if she gives you one back! Most of all give her a Smile and she will know you love her and she will smile back! Unless she is trying to think of a smart answer or deep in tought with one of her toys! Try having a special time to share a joke of the day…..laughter is the best medicine!

    • Anonymous
      January 7, 2008 at 3:05 am

      Hillary loves you! And kids “forgive” much quicker than us “adults”. We can learn a lot from them. There is no way you could know all the variables in this disease ~ even if an adult were trying to explain the residuals. After 13 years of living with GBS there are moments when my “wonderful, stand-by-me” husband doesn’t remember or get it ๐Ÿ˜ฎ Even tho we live in our “skin” we still don’t always “get it” either!

      Hang in there, Mom! You’ll be the best of support that Hillary could ever have ๐Ÿ™‚ Hugs to both of you!

    • Anonymous
      January 7, 2008 at 7:30 am

      My son (diagnosed 17months GBS) is 21 months now and therefore communication is pretty much nothing. He does start to sweat out of nowhere and sometimes he wants to run around with nothing on! I know all toddlers are like that but I tend to put it off on GBS because of the drastic changes in his feelings about temperature. Sometimes he cant take a nap unless the heat is on full blast!! He never wants to take off his socks, I think maybe because of the sensitivity of the floor and things he steps on? We are all learning and our children will eventually know the differences in their own bodies and be able to better help us out. I think LadyKITUSA had it right, lots of hugs, kisses, and smiles make all of our unfortunate mistakes, based on whether things are GBS related or not, OK. I think teaching Tucker the differences in dangerous temperature changes (freezing weather, heat stroke weather, etc…) will be the most difficult if his temperature feelings continue to differ from those of us without GBS. I know he will just want to be comfortable and I will therefore have to be stricter about what is healthier I guess. That will be hard knowing I am making him uncomfortable.

    • Anonymous
      January 17, 2008 at 7:45 pm

      Just to inject a little hope and a little humor here, I had the wide, uncontrollable temperature swings too, and occasionally still do, but this problem seems to be resolving itself. I’m 5 years post GBS now.

      Wish I had thought of shedding all of my clothes and runnning around naked!

      Continue to be a good mom, and whatever happens, your child will know you love her – that’s the most important.


    • Anonymous
      January 23, 2008 at 1:08 pm

      Yes! I was diagnosed with GBS in Nov ’07.
      I can recall walking ba5refoot in the snow!
      Now I sleep in PJ’s and with a blanket ande comforter!
      Used to sleep nude!
      As I sit here I am COLD! with the t’stat at 75!:confused:

    • Anonymous
      January 23, 2008 at 8:31 pm

      My toes are always cold! I wear more clothes than I ever had. Even layers in the Summer. I get the chills under a quilt. My hands are always tucked up to my chin to feel my warm breath on them or tucked in my pockets or between the side of the chair and my leg. I have notice that I sweat so bad in the ICU, but now I sweat very little and I am retaining water. The Doctor predicts that I am holding around 30 to 50 pounds of excess water. Just seems that I am never comfortable. I am taking your word for it that it will change after time! Boy are we weird or what? No wonder the Doctors are not able to figure us out! I think someone hit on something…..use your sense of humor to get thru all this! You have to be able to laugh at yourself and teach others to do that same. It is not that we are always whinning we are just so amazed with what all is consistantly changing with our bodies.

    • Anonymous
      January 25, 2008 at 2:26 pm

      thank you all. It is good to hear we are not alone. I’m sure I will be back soon!

    • Anonymous
      January 25, 2008 at 3:13 pm

      WOW,I just wanted to say I get really cold too! My lower legs and feet are cold all the time and lately whenever I go outside even just for a few mins to go somewhere,my lower legs and feet are ICE COLD for hours and hours after I have been outside. Kind of crazy I guess.

    • Anonymous
      January 30, 2008 at 8:01 pm

      It has been almost 25 years for me and I still struggle with the temperature swings. The most frequent thing for me is that I think my feet are cold but if I touch them they are warm to the touch and then sometimes it is the opposite. I can certainly understand why your kids are wanting to run around nude or don’t want their socks off….

      Kids are very resilient and forgiving. They will let you know what is going on for them through their behaviour. You just need to listen with your eyes and your ears.

      Hugs to you all.


    • Anonymous
      February 5, 2008 at 6:16 am

      same thing here with the hot/cold issues of my extremities. my irregular temps are obviously worse when i’ve had septic infections from like picc lines or PPE lines.
      anyhow, my most recent ordeal is having night sweats, neuro says it’s from the imuran i am taking. i also sleep with a CPAP mask, making me feel more smuttered at times, and a fan pointed directly at my head.
      well one day last month i was so frustrated with the night sweats and having to change my bed linens so often…..i did what my family refers to as a “britney spears”. i grabbed up the clippers and shaved it all off!!! ah!!! what relief it was!!! the night sweats have reduced ๐Ÿ™‚
      when i do have the occasional cold spell, i keep around goofy stocking caps and trippy sock hats from like hot topic!!

      it’s all about comfort!!! comfort means more to me than hair apparently!!!