What can I do for My Daughter

Hi,

Need some advice on what I can do to help my daughter. She is twelve years old and was diagnosed the end of July with Guillain-Barre Syndrome. She has not been given any meds of any kind other that for low thyroid which was found at same time. She had a checkup yesterday for Leukemia, which she is almost three years cancer free thank heavens! They did a cbc to check her blood counts and her arm has been hurting ever since. She is not one to cry or complain, so when she does I know that her pain is over the top. She said her muscle felt tight and like it was going to snap when she extends her arm. It is too painful to even have her arm touched. this makes it near impossible to do her occupation therapy exercises, aside from the fact that those cause her even more pain, which means we don’t do them on that hand and arm. What can I do to help her manage this pain? She refuses to take any pills unless absolutely has to, she has been putting hot pack on it; this seems to help a little. We tried to get her to put a cold pack on it but she just looked at us like we were crazy.

She is almost to the point where she can’t walk. She is worse now than when she was released from the hospital two and half months ago. Her physical therapist and her Hem/onc doctor sent their concerns to the neurologist that she needed to be seen. (her neurologist doesn’t want to see her until Dec., unless she had a dramatic change i.e. She wakes up paralyzed) Her Hem/onc doctor voiced his concern that may be she continues to get worse, slowly, because she was never given treatment, and that they don’t think twice giving and ivig treatment where sometimes in other medical fields they do, and that they would willing to give them to her if the neurologist decides to go ahead with them.

I want to do the best thing for my daughter and right now I don’t know what that is, or what to do to help her. Any advice will be welcomed thank you.

My Neurologist explained GBS as one of the types of issues that he has very little control over. He can't prescribe or change a type of medication regiment if he saw me more. I have some bad days were I feel worse than I was a feel days before. Though I have never felt worse than the day I left the hospital.

There is a percentage of regression like eight percent. If you thought you were getting worse, I would force the issue or seek a second opinion especially if the your oncologist/hematologist thinks so. GBS is kinda split between the two specialists (it's an immune deficiency due to antibodies in the blood attacking the nervous system).

I am not a doctor just a patient, so take my comments as opinion only.

great post!

I have just joined and have a daughter who is 6 with GBS. She has been getting better over the past few weeks but tonight started complaining of pain again, like your daughter she is not a complainer and I know that she must be very uncomfortable. What did you do? Have you gone back to the hospital yet? I hate the thought of her in pain and going back to where she was, unable to walk or even sit up. Is it possible to havr recurring attacks?

great questions worried mum

My daughter’s Occupational Therapist contacted the neurologist and he got back with us right away. (We found that it was faster and easier to go through her therapist then to try to contact him directly) We went to the neurology clinic the next day and she was retested and diagnosed with cidp. They started her on the ivig treatments and after a very rocky road of dealing with her allergy to blood products; she has made a dramatic improvement. We ended up having to force her to take some ibuprofen and using a ton of ice packs on her sore and hurt muscles, sometimes alternating with heat packs.



Worried mum said:

I have just joined and have a daughter who is 6 with GBS. She has been getting better over the past few weeks but tonight started complaining of pain again, like your daughter she is not a complainer and I know that she must be very uncomfortable. What did you do? Have you gone back to the hospital yet? I hate the thought of her in pain and going back to where she was, unable to walk or even sit up. Is it possible to havr recurring attacks?

Hello N.O. and Worried mum! How are your girls doing so far?

I'm new here and I also have a little one who was diagnosed with GBS one year ago: my 6-year-old brother. He was at the ICU for about a week, but luckily, he didn't have respiratory or heart complications. He spent almost a month at the hospital altogether and I guess his progress has been good in general. It's hard for me to really tell and also to deal with it because he lives with my dad and his mum, and I only get to see him every few months. I feel kinda guilty sometimes because I wish I could help out more... It really sucks to feel so powerless. He does have a great attitude and strength and also, he hasn't suffered from much pain other than when he's at physical therapy, but he gets such mood swings!! He's been going to school since january and the interaction with his buddies has really helped a lot. He can walk without any aid, but he has a bit of something I believe it's called drop foot in english (?), so he walks a little funny in one leg. He still has problems raising his arms because his shoulder muscles haven't been able to fully "awake" yet. His doctor has mentioned the possibility of it never "awakening" if it doesn't respond in the next six months and I wonder if this is true, because from what I've read, there's no such thing as a "deadline" for recovering from GBS, each case is different and each one has to go at his own pace... Does anyone have something to share about this? Has anyone had to get a muscle implant in order to regain its liveliness??

Hope and strenght for everyone!

Hi marianela

Its good that you have found this site - it certainly helped me. My daughter didn't have the symptoms that your brother is having but every case seems so different. It does sound like he is getting the right treatment - I know physio was the main help for my daughter.

On a positive note it sounds like he is going in the right direction and its god that he is back at school with his friends. My little girl is 7 now and has regained all her strength and is able to handstands again - something I never imagined last year. The only thing she does suffer from is temper tantrums - which sounds like your brother - she often gets very angry if things aren't exactly what she wants. I thought this was just because she was 7 but maybe its because of the GBS. The other thing I have noticed is the fact she gets angry when she is tired and has pains down her side. the only solution I have found is to get her to bed and to sleep as quickly as possible.

I think your brother is very lucky to have such a caring big sister. Love worried Mum x

Hello Marianela,

I am sorry about your little brother. My daughter has an Pediatric Occupational Therapist that really helps with her hands, arms and shoulders. I don't know if your brother has one or not but I would suggest getting one if he doesn't. They will give exercises to do to keep his muscles from atrophying. They really help my daughter.

If you brother is on a steroid that will contribute greatly to his having mood swings. One thing that I have found that helps my daughter is to let her talk. About what she feels how it is effecting her. What she would like us to do or not do to help her. The best thing you can do to help your brother and your dad is to spend time with your brother. Listen to him, really listen to him when he talks to you. Play games with him, play with playdoh. Enjoy him! Let the GBS be about him and what he is going through and not you and how it makes you feel. Love him and show him that know matter what he does or says you will always love him. This is a big and scary thing that is happening to him and it is a lot for some one so young to go through. He might not be able to articulate what he is feeling, so don't push him to just listen and be there for him. Maybe call to talk to him when you are not visiting your dad, so that he knows you are there for him and space doesn't change your ability to hear him and love him.

Hope this helps. Let us know how he progresses, my prayers are with you,

N.O.


marianela said:

Hello N.O. and Worried mum! How are your girls doing so far?

I'm new here and I also have a little one who was diagnosed with GBS one year ago: my 6-year-old brother. He was at the ICU for about a week, but luckily, he didn't have respiratory or heart complications. He spent almost a month at the hospital altogether and I guess his progress has been good in general. It's hard for me to really tell and also to deal with it because he lives with my dad and his mum, and I only get to see him every few months. I feel kinda guilty sometimes because I wish I could help out more... It really sucks to feel so powerless. He does have a great attitude and strength and also, he hasn't suffered from much pain other than when he's at physical therapy, but he gets such mood swings!! He's been going to school since january and the interaction with his buddies has really helped a lot. He can walk without any aid, but he has a bit of something I believe it's called drop foot in english (?), so he walks a little funny in one leg. He still has problems raising his arms because his shoulder muscles haven't been able to fully "awake" yet. His doctor has mentioned the possibility of it never "awakening" if it doesn't respond in the next six months and I wonder if this is true, because from what I've read, there's no such thing as a "deadline" for recovering from GBS, each case is different and each one has to go at his own pace... Does anyone have something to share about this? Has anyone had to get a muscle implant in order to regain its liveliness??

Hope and strenght for everyone!

How is your daughter doing?

Worried mum and N.O., thank you so much for you words of support and advice! They really helped me feel better and think of other ways of helping :)

Prayers and love,

Marianela

please keep in touch - its so good to know other people understand what you are going through

marianela said:

Worried mum and N.O., thank you so much for you words of support and advice! They really helped me feel better and think of other ways of helping :)

Prayers and love,

Marianela

Scott,

My daughter is doing great. she is slowly getting her strength and endurance back. We do have a few concerns though, she can't feel her bladder so is unable to tell when she needs to empty it. Which has caused her to have a bladder infection that we are having a difficult time clearing up. She is going to see a urologist on the 20th of June. So hopefully they can figure something out. she is also having difficulty swallowing, her neurologist put her Zantac and it is helping, a lot. He is slowly backing her off her steroid and slowly starting her on a different drug, which she is very excited about. She is having a hard time with the weight gain, and in her words, her steroid chins. She can't wait until she completely off the steroids and lose the "steroid weight".

She has an amazing attitude over all though. I don't know how she keeps smiling and laughing with everything she has and is going through. She even makes all of us laugh, (Family, doctors, neighbors and friends).

Thanks for asking,

N.O.


Scott Orn said:

How is your daughter doing?

I'm glad she is doing so well. At least she is finding humor in the "steroid chins." :)

Thanks for the update.