Hello All. My Daughter was diagnosed with suspected Miller-Fisher variant of GBS a few days before her 2nd Birthday. This was in 2008, she is now 8 years old. She was a mild case with a stay in hospital of just under 4 weeks. She work up one morning unable to open her eyelids and was admitted to hospital that afternoon after a referral from our GP who immediately suspected GBS. She deteriorated quickly, was in a lot of pain and lost the ability to walk within 24-36 hours. Whilst she was extremely unwell, the GBS paralysis did not spread to her upper body and the paralysis of her facial muscles, other than her eyelids, was not severe. She was treated with intragam immunoglobulin. After a week the lower body paralysis started to reverse and, being so young, she just started crawling again as soon as she could. She regained control of her eyelids and facial muscles after 4 weeks.
As my daughter was so young we have found it very difficult to interpret whether some of her ongoing 'idiosyncrasies' can be attributed to the side effects of GBS. She experienced skin sensitivity for a long time following her return home (she wore silky boxer shorts and a lose t-shirt as her main attire for the next 18 months) which I assumed at the time to be related to the GBS. She also has a long history of suffering from headaches, sever car sickness, some general muscle (leg) pain and stomach pains which may or may not be related to her GBS 6 years on. She was too young to talk of her experience both while in hospital and during the immediate recovery period and has she only recently used words like 'fuzzy' to describe her vision during her prep year at school 3 years ago (she has 20/20 vision).
We manage my daughters headaches by asking her to rate the pain on a scale of 1-10. She seems to live with at least a mild headache much of the time and complains of a headache on most car trips, even short ones. Her brothers would say she complains before the car has even left the driveway... Her personality is not to let things slow her down, so, out of the car, it is only when the headache reaches a 3 or 4 on the pain scale that she starts to complain. I've only recently discovered that one of the reasons why she still loves her blanket is because the blanket cushions her head when it is sore in the car. For longer trips we use sunnies and a hat to help block out bright light.
I am obviously interested in the side effects of people, particularly children, recovering from GBS. Can anyone provide some insights? We are six years down the track and I am still trying to understand the physical ailments of my daughter. The catalyst for this email was another difficult holiday with constant headaches and two recent school assignments on headaches (my daughters choice of topic).
Thanks to all.
Wow, since your daughter was so young and growing, I imagine the effects on her body will be pretty different than most people who get it. My son got a really bad case (it was also Miller-Fisher) at 18, but he was nearly full grown. The doctors said he made pretty much a full recovery, with only some mild leg and foot nerve damage. He has been off all medications for a while now. He does have frequent headaches which are aggravated by light. Although that began with the GBS, I am not sure if that is a result of the GBS because so many people get headaches.
The only other things we have noticed is intermittent leg and foot pain. He has, however, recently developed a case of foot drop on the left side, and a couple weeks ago his doctor found that his left pupil is larger than his right pupil. The doctors told us we have to wait and see if these issues get worse. However, they also said that these problems may go away by themselves, explaining that GBS made his nervous system more sensitive than ours. As a result, little things that would not normally aggravate a nerve group could well aggravate his. That makes a lot of sense to me, and we finally found a group of neurologists we know have treated a lot of people with GBS, so I trust them (as much as I can anyway). So, in your daughter's situation, maybe it is just be that her regular activities are stressing specific nerves that cause these problems. If that is the case, all you can do is treat the symptoms and try to get her to rest more (like that is going to be easy with a kid).
Hang in there!
My daughter was 10 when she had GBS 6mths ago. she is recovering ok with little known side effect so far. From what I've read, each GBS case seems to be very different. It's hard to know if her headache is related. I remember myself suffer from migraine since the age of 10, & headache from most car trips. Is your daughter sleeping well usually? Could the headache a side effect of her quality of sleep? I took my daughter for a few acupuncture sessions after GBS. Not sure if it helps in your case, may worth a try. But make sure the doctor is recommended by people & experienced with children.
Take care & God Bless.
My daughter was treated for GBS 2 years ago when she was 6. Now at 8 she still gets stomach pains usually when tired or dressed and is very sensitive when having her hair brushed. She also has constipation which causes her significant pain. She doesn’t let things stop her but her tiredness is something I have to monitor as it definitely appears linked to her aches and pains.
She doesn’t mention headaches often but I do try to remind her to drink water.
Good luck and it’s so good to know that there are others to talk to.
Hi there. Thanks all for your responses. Given my daughter was only 2 when she had GBS we have no 'before or after' so yes, she may have experienced headaches and light sensitivity regardless of the GBS but we will never know. We only know her journey since then and the ongoing discomfort she experiences. And yes, she is also a child so it is difficult to interpret her situation as tiredness etc. will play a role. It is interesting to hear about the experiences of others as I had no idea what I was dealing with at the time and with little language to communicate it was guess work to know what the issues were much of the time. Doctors at the time said due to her age she would recover quickly, and certainly she got more exercise than most as she was prepared to crawl long before she could walk again. Having said that, leg pains, foot pain and stomach aches still occur for my daughter and they can be quite severe at times. She has, I think, outgrown the hyper skin sensitivity although brushing hair is an ongoing ordeal. Again, this may not now be GBS but I do remember how much pain she was in with the GBS and brushing hair was a no go zone for a very long time. Thanks again all, I appreciate your responses and suggestions. S
My little brother was also treated for GBS 2 years ago at age 6, just like Worried Mum's daughter. It really is quite different in every case. He still has some walking issues since he still has a foot drop, but he's still working out every day. Also, he still hasn't made a full recovery on his arms, but he has better control of his hand movements and skills. He still falls down every now and then, but he won't let that stop him. He does feel tired quite often when relatively long walks or stairs are involved. But all this time I haven't really heard him complaint about headaches or stomach pain.
We've taken him to several specialists and it's not yet clear wether he will or won't be able to make a full recovery. This place and your stories do help feel a little less lonely in the world!
Much strenght and blessing for all!