My son (3) was diagnosed with Guillain-Barre a little over three weeks ago. It has been a crazy time and we are searching for more information. He had 4 IVIG treatments, spinal tap and nerve conduction study. Not sure where to look for more information.
Hi I am also new to this group. I am 58, almost a year down the line since my GBS began and recovering slowly but well. I can imagine how difficult it must be for your little son. This GBS is a nightmare. I am sure he WILL recover it just takes time, I presume your son is in hospital and is under a good Neurologist? My prayers are with you all. I live in Africa where there is little support however I found very useful booklets and advice on the Gain website in the UK - www.gaincharity.org.uk they also have a facebook page. I hope you find the help you need. Wishing your precious little son everything of the best. Take care, stay positive.
I'm so sorry to hear that your 3 year old son has GBS. It was frightening enough for me as an adult, I can't imagine how frightening it must be for your child. Here is a website you can visit for more information. God Bless.
So sorry to hear this. It's hard to take as an adult, but must be super scary for a young child. The link posted by Spencer for the gbs-cidp organization is a good one.
May I ask what precipitated the onset? By that I mean, did he have the cold or flu a week or two prior, or did he have a vaccination a week or two prior? Are you in the United States?
Good luck and best wishes for your son. If he has any movement/mobility at all, that's a good thing. Some cases are worse than others. Four IVIG courses is a lot (I had 2). This means he is being treated aggressively, which is a good thing. Can you tell if he as "bottomed out" yet? (Reached the point of least movement/mobility, and begun to come back.) His age will play as a benefit in his recovery, as he is growing and developing at a tremendous rate anyway at this age, so he should recover more quickly than most. We will hope!
So sorry to hear your 3 yr old son has GBS? It was scary enough for me as an adult. I was 71 when I got it. Now at 73 I have plateaued In my recovery I think. I was given 5 transfusions of IVIG after finally being diagnosed. Hopefully his young age will be helpful in his recovery. What do they think caused his attack? Had he recently been ill or recently had a flu shot or such? You have come to the right location to get some answers. Praying for a speedy recovery for your little one.
Hugs & Blessings
Kay
I am so very sorry to hear of your little boy, I was diagnosed last September, I am almost entirely back to normal. The only difference being the tip of my nose, lips and feet tingle sometimes, and my balance isn't quite what it used to be but I/m 57 so I can live with the small loss. Please make sure your son goes through the rehab and help him do his exercises at home too. He will have problem with bowels and bladder function if he is out of diapers, he may have to go back in them for a while. Accidents are not his fault, it's part of the process, normal control will return with time. The IVIG is great and is a miracle. I didn't go to a physiocist, just intense physical therapy and aqua therapy. Riding his tricycle will help leg muscles come back, Gabapentin (neurontin) will be a good friend too, in the months to come. He won't be able to get flu shots or some other immunizations, which is a shame because he is so young going through this. My prayers are with you and your little son, but in time, he will make such strides that you will never know he had it. Let's just hope it's not CIDP, that can recur and we don't want that. Best of luck.
Your son has YOUTH on his side. Sounds like he is under good care.
Nebretta
I am so sorry that you and your child are going through the ups and downs of GBS. there is a wonderful support network on Facebook. It is the Guillain Barre Survivors group. It is a closed group for people and caregivers with GBS/CIDP. You will find just about all of the information you are looking for on this FB group. If you would like to join the group just go to FB and put in the name of the group and ask to join. You can use me as your referral. Everyone in the group will be more than willing to help answer any questions you have. I am a GBS survivor of five years. Here’s hoping your son makes a speedy recovery.
Yvonne Cherry
Thank you so much for the support and the great suggestions. I will checkout all of the suggested sites and resources. We are just trying to learn as much as we can so we can make educated decisions regarding our son's care.
This is a marathon and not a sprint.
My son had a runny nose and a low grade temp the day before we noticed the weakness in his legs. After three emergency room visits and two visits with his pediatrician, they finally figured out what was wrong and admitted him to the hospital for treatment.
LanceB said:
So sorry to hear this. It's hard to take as an adult, but must be super scary for a young child. The link posted by Spencer for the gbs-cidp organization is a good one.
May I ask what precipitated the onset? By that I mean, did he have the cold or flu a week or two prior, or did he have a vaccination a week or two prior? Are you in the United States?
Good luck and best wishes for your son. If he has any movement/mobility at all, that's a good thing. Some cases are worse than others. Four IVIG courses is a lot (I had 2). This means he is being treated aggressively, which is a good thing. Can you tell if he as "bottomed out" yet? (Reached the point of least movement/mobility, and begun to come back.) His age will play as a benefit in his recovery, as he is growing and developing at a tremendous rate anyway at this age, so he should recover more quickly than most. We will hope!
Hi RollerCoasterMom,
Thanks for you reply. It's a real shame it took three trips to the emergency room before he was admitted. I've heard of that happening to others, and it's too bad so many doctors are unfamiliar with the symptoms of GBS.
I was asking about viral infection or vaccination a week or two before onset of symptoms to see if the "trigger" could be identified. A day or two earlier would most likely not have been the trigger, it is usually a week to two weeks before.
I hope your son continues to make improvement. Best wishes!
LanceB
Sorry to hear what you & your son is going through, It is not easy as a mother to see what's happening to him.
My 11 yrs old daughter was down with GBS February this year. I'm very thankful she is pretty much back to normal now. My daughter however didn't seems to have find anything that triggered it. Her limps just get weaker & weaker gradually.Your son is young, he should be able to recover from it.
It is the pain in GBS that's most unbearable. My daughter use heat pack, it works best for her. Find a soft cuddly one if you can for your son. Some chemist/ drug store has it. Hope he get better soon.
As a parent of a young child who was diagnosed with GBS at 5 years old in 2011, I can so relate and understand how lost you feel with so little info about children and GBS. My daughter’s case was triggered by a flu shot. After a month of slow onset, she was hospitalized, spinal puncture to confirm and also had 4 doses of IVIG. We then began 2x weekly PT, for about 4 months and I worked on things with her at home. Within a week home from hospital, she was back at preschool for short days and gradually has regained almost all her strength. There is nothing she can’t do because of the GBS, but teachers have noticed differences in her physical abilities. I never let her know and don’t allow it to be an excuse to not do something. As a mom, I still see the weakness in certain areas, especially fatigue and climbing stairs. Although released by her neurologist, we have seen him within the past year, just for peace if mind if nothing else. Hang in there … Praying for you!
Bsolberg, are you aware of the Vaccine Inury Compensation Program? The US government has established a trust fund to compensate for losses resulting from illness caused by vaccinations. Please read the document here: http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/F/vicp-def.pdf It's kind of like filing an insurance claim.
Good luck!
Hang in there! I know it is a scary time with a lot of ups and downs, but your son's age really is a huge benefit. My son was 18 and in very good health before he got GBS. Although his case was very severe and he required life support, he recovered incredibly quickly because of his age and overall condition.
Another good thing is that between his age, the medications, and the effects of GBS, your son probably will not remember much about this time. My son cannot remember most of his time in the hospital, and only part of the time he was in rehab. I am so relieved because he was in a lot of pain and he was absolutely terrified the entire time he was in ICU.