My Daughter--age 4

My daughter is 4 years old. She was just diagnosed two weeks ago with Guillain Barre.
She has always been a monkey! Her favorite thing to do was climb all over anything and everything...and a VERY hyper child!
Out of nowhere, she started stumbling one day, then over a month got progressively worse each day, to the point she ended up a the hospital, which is when she was diagnosed with Guillain Barre. This was two weeks ago. She is still stumbling, she cant get up from a sitting position, and cannot sit up from a laying down position. My question is, WILL THIS GET BETTER and will she get back to her "monkey self"? I realize this will take time. She started physical therapy and occupational therapy last week and will go three days a week. I just want to know from people who have had this, or have it now, what can I expect?
PLEASE HELP!

Very worried mom
groesch34 groesch34
31-35, F
12 Responses May 15, 2012

Thank you for such a positive answer. At what week if at all did she receive IVIG? We are getting a second opinion tomorrow. I am so happy to hear she is doing so well.

She received IVIG (two treatments) about 3 days after she was diagnosed. And then again (two treatments) about a month later. And hasn't had any since then. The prednisone is supposed to keep it at bay...I am hopeful for you and your daughter.. Was she hospitalized when diagnosed? Are you in the United States?

Thank you for such a positive answer. At what week if at all did she receive IVIG? We are getting a second opinion tomorrow. I am so happy to hear she is doing so well.

Hi everyone..
First of all---thank you for everyone's comments, suggestions, and thoughts for my daughter.
It is now December 2012. 7 months since she was initially diagnosed with Guillain Barre, and now 6 months after being re-diagnosed as CIDP.
She is BACK!!!!! She is back to being a crazy, wild child!
She is able to walk, jump, run, climb stairs. She is in articulating AFO's right now, but can walk and run and jump and do all of those things without them on. She has been told by her PT to wear the AFO's though because it takes a lot more effort on her muscles to do all of those things w/o the AFO's on that the effort it takes with them on.
She takes prednisone on Fridays and Saturdays and is on Gabapentin 3 X per day.
She was told by her dr that she doesn't even need to do PT and OT anymore, but because she enjoys it so much and it doesn't cost us any extra out of pocket, she still goes once a week.
There are definitely times when she gets fatigued more than others, but overall, she is doing amazing and I hope and pray that each of you and yours have as good of luck as we have had. God Bless you all.

How is she now? My daughter, also four , has been diagnosed three weeks ago. She is still home and we have not done IVIG yet. We are starting pt tomorrow.

Hi sweetie, how awful for you, but by all accounts your little bubby should make a full recovery. I am still in recovery mode and although much older am sure symptoms and recovery is similar. I am swimming, which is great for me, your little child will get very tired make sure sh rests a lot. Also, personally, and this is my personal opinion, keep white sugar out of diet. Patience loads of cuddles patience love and did I mention patience? Good luck and hugs to you and your bubby

how is she right now ?.. my brother is now in the hospital and suffering the same illness..

Hi there,<br />
It is a very hard journey. However there is hope. If the diagnosis is GBS then there will be recovery. No one knows how much recovery, however there is usually a very marked recovery. I have had GBS and my father also had it. I came down with it in Dec 1999 I was 41 yrs old. My father was diagnosed with it when I was new born, he is now 85 yrs old.<br />
We both have different muscel weakness left from it , however are both able to walk and the lingering effects are relitively minor.<br />
Whilst I have had a good recovery I need to maintain a regular excercise patterns to work against the ongoing muscel weakness and lack of muscel stamina. <br />
<br />
My father had no pain, went into full paralysis in a matter of days and recovered slowly over 2 yrs after the 8 week period. I had a gradual paralysis with severe nerve pain however begain to recover quickly even regaining some movement in my feet and legs as weakness was developing in my arms and upper torso and face.<br />
<br />
Once the acute period is over the best assistance I gained was from physiotherapists skilled in the treatment of Guilliains patience and accupuncture. I had on going physio for a year after I got out of hospital. The accupuncturist said that if he had seen me earlier the accupuncture could have assisted with the pain a great deal.<br />
<br />
Whilst it is obviously different for a small child as they are still growing and developing their skills in movement. Please remember to care for yourself as much as possible. It is very shocking for you and all the family. I am an ex nurse and was so relieved that the diagnosis was GBS because of the recovery rate and the awfull things that I thought might be possible. I knew it would be very difficult just from what I was experiencing from the symptoms but I was so relieved it was GBS as the recovery rate is so good. So take heart. Think of it as a marathon race and care for yourself and all the other carers you and your daughter have because you are vital to her recovery.

My 5 year old daughter was just diagnosed with GBS at the end of March 2012. It has been a long journey and lots of emotional moments for both of us, but we are both fighters and will never give up. She was a very active girl who played soccer, danced and gymnastics, and she continues to work hard everyday. There are bad days though. Don't give up.

Bless your four year olds heart and bless yours. We will pray that she recovers and yes, it is a long process! It takes time. It took Andy Griffith three years to recover. I cannot imagine the pain your four year old endures. Mine started the first of December, 2011 and I am now walking with a cand BUT the pain continues in my feet and hands. Keep us posted on how she is doing.

Sorry - I meant to say "walking with a cane".

She had two IVIG treatments--a month ago. She still doesn't seem to be getting any better! suggestions? It's been almost 10 weeks that she's had this.

Has she had the IVIG? Therapy wont help. My son had GBS at age 4. Took weeks for diagnosis. Only when he had IVIG did he recover.

Hi worried mum,<br />
I am also a worried mum. My son is 2.5 years old exactly one week after hie 1st birthday he got Gillian barre, his right leg was totally paralysed left leg starting, he couldn't sit up. I was so so so scared. The doctors said hell make a full recovery. But after a check up three months later the neurologist told me he would never walk......my heart just broke he hadn't even taken one step.<br />
All I can say is never give up, listen to the doctors but know in your heart they don't k now everything. <br />
My sweet boy is improving everyday it's his right leg that has had little improvement he where's an orthotic shoe and he needs a leg brace, but he has just started walking using a special walker along with his orthotic. He's come along way, and has a long way to go but we will never give up, so dont give up on your little one being that little monkey. Time and hope <br />
I wish you all the very best