"I’m Ege, and I’m 8 years old with GBS"
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September 2, 2006 at 5:50 am
Ege cannot write here, because he’s in ICU for a week now. Dr. was quick to diagnose him with GBS, something his family has never heard of, neither myself.
Hello to everyone. My name is Murat, and writing on behalf of and with hope to help Ege, my close friend’s son, only 8 years old, living in small holiday village of Dalyan on the west mediterranean coast of Turkiye.
I’ve found the site while searching to find out more about GBS and decided to join so as to be able to tell more about this syndrome to Ege’s family. They’re now in a university hospital in Izmir and it’s been a very terryfying, painful, and long week for them. Ege is now in ICU attached to a resp. machine (or whatever it’s called in English), and have been having IvIG two days after his first symptoms (double sight, vomiting, head pain, nembness on face, followed by a complete paralysis in roughly 24 hours).
I’ve read the success stories, almost all of them mentioning a 90-95% recovery – which is good! If I understand correctly, 1-3 weeks in ICU is normal, to be followed by a physical therapy for a month or so, and, though each case is unique, a near-full recovery in 1-3 years. We hope for Ege and all others to get well sooner, of course…
Tomorrow, I’ll go and visit them in Izmir. Their latest concern was the high blood pressure Ege has been encountering for the past two days. Can anyone comment on this? Is this normal? A side effect of the IG?
Many thanks for any support… glad to be part of the GBS family!
We hope and so we live.
Murat. -
September 2, 2006 at 12:40 pm
Murat, I am sorry about Ege no child should have to hurt like this. My son is 5, he started having problems in july. The times he was in the hospital he had high blood pressure 187/110 is was scared. The Dr said it was just because he was upset. I know better. When I got home I bout a blood pressure cup that goes on your wrist. He still has bad headaches, stomach pains leg cramps. The hardest part has been for me is the not knowing, I know we are blessed it could be worse. I thank God everyday, and trhen I pray he takes his pain away.
I will pray for him as I pray for my own and eeveryone else here.
Trish
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September 2, 2006 at 12:43 pm
Murat,
I had fluctuating blood pressure for months until it finally settled down. With GBS, blood pressure and even body temperature can go up and down without warning. It is common.
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September 2, 2006 at 1:27 pm
Trish, Kathryn,
Many thanks. I’ll share your experience with the family tomorrow.
I hope quick recovery for all the suffering.
All the best from Dalyan,
Murat -
September 2, 2006 at 2:28 pm
I did not have high blood pressure and when I got
GBS it weny sky high I was on 5 blood pressure pills a day
I am now on 1 pill a day and a very low dose Good Luck to the family and I am sorry that an 8 year old has to go thurough this. Take Care
CarolGBS 12-2005
Quote Reflect upon your present Blessings, of which every man has many
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September 2, 2006 at 11:13 pm
My 16 year old son had high blood pressure with GBS. His normally runs very low as he is very athletic. He was on meds for about a month and then within 24 hours his blood pressure suddenly returned to normal.
Best wishes to Ege for a speedy recovery. My son is nearly 100% recovered 2 1/2 months after his diagnosis with GBS.
Good things can happen!
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September 4, 2006 at 9:29 am
Hello again!
I’ve visited Ege’s family yesterday in Izmir, and gave your wishes and comments about the blood pressure issue. They were very thankful and happy. On their behalf, I thank everyone for comments/experience.
I couldn’t see Ege as he’s still in ICU, but better as of this morning. We also took yesterday his younger brother so he can see Ege as well as his parents after a week, and explained to him why Ege’s there, etc. Very emotional moments…
I must say, the family is much much better now as they know more, what to expect, and that we’re all around to help and support.
Hoping a good week for all of us…
Murat -
September 4, 2006 at 2:14 pm
Im glad to see that the help and advice from this wonderful GBS family gave the family some comfort by relieving some concerns and giving hope for recovery. Im looking forward to seeing more updates and hopefully soon seeing them from Ege himself.
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September 6, 2006 at 2:56 pm
More good news from Ege…
His eyes are now open, can see his family, but he also sees all the tubes and wires around… a bit scared, I was told.
He has also started to move his shoulders a little bit; also some limited movements on the hands…
I’m sure I’ll be here with Ege, writing to you all one day, hopefully soon.
All the best..
Murat -
September 7, 2006 at 10:16 pm
Hi
My son is 22 months old and has GBS. He has been in the hospital for two weeks. He was on the respirator for 4 days. He was better and then he got worse when the doctors removed the breathing tub. Ege will get better, there will be a long road ahead of him. Prayer is the best form of medicine and I will add him to my list. I wish him a speedy recovery and know that GBS can be overcome. Best wishes Paul
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September 16, 2006 at 8:14 am
Yes, finally, Ege is now able to breath by himself; they have removed the ventilator yesterday.
He’s smiling, eating, moving his arms and legs… Drs said he could be out of the ICU as early as monday.:)
His parents are much releived… Toys around him… together with hapiness.
That’s what we were all waiting for. And we’re ready for the next step, with patience.
All the best,
Murat (on behalf of ege) -
September 16, 2006 at 12:06 pm
That is great news Murat! I am so happy to hear Ege is doing much better. Thank you for keeping us informed!
Lori
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October 18, 2006 at 11:45 am
Hello everyone!
I thought I’ve posted before that Ege has been out of hospital, back at home, and that he was quickly recovering.
But I realize the post is not here.
So, there you have it… Ege is back home. He has started to receive PT at home, because his parents thought it’s a much better environment than an hospital, and that the positive effect of being close to friends and family is something to seriously consider. I think they proved to be right, as Ege is improving very rapidly, now able to stand up and walk a few steps. He was so eager and motivated that few days ago, he prepared himself to be up on his feet to give a big surprise when his father was back home.
School has already started, and Ege’s primary school teacher is giving him private lessons so he will not be too away from school when he joins his friends for the spring semester.
So, all is fine with Ege here in Dalyan.
All the best to you,
Murat (on behalf of Ege) -
November 26, 2006 at 2:49 pm
My son Caleb who just turned 11 was diagnosed with GBS and is in ICU. Fortunately he has not had any breathing difficulties, just trouble walking and a little weakness in his arms.
My heart goes out to Ege and all the other children and their families. I pray that all of our kids come back home strong and healthy,
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June 2, 2007 at 12:52 pm
Just had a chance to read this. Hope ege is doing better. It would be nice to hear an update if someone knows anything. God Bless all of the little children who suffer from this illness. It is hard enough for us adults but I can’t imagine a child having this. Take care all and have a great summer
sherry
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July 7, 2007 at 7:35 am
Hello all!
It’s been some time I haven’t written. Sorry for that.
It’s been almost a year now, and today, we are going with friends to “Yuvarlakcay”, a cold river near Dalyan, to enjoy a happy day for my son (yes, it’s new!!! his name, Poyraz). Ege is coming with us, and it’s a happy moment for him too; because, it was here at this river he first had the symptoms of the GBS and now he’s ready and strong to face it.
In general, Ege is doing very good, I can say, enjoying almost a 100% recovery.
All the best to everyone.
Murat -
July 10, 2007 at 1:38 am
wonderful news!! I am so glad to hear Ege is doing so well. Give him a big hug for us!!
Lori
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March 2, 2008 at 2:58 am
Hello everyone!
This is to update you on Ege’s GBS case since he was diagnosed 1.5 year ago.
In my previous messages, I’ve posted that he had a full recovery; today this is still valid. He continues his education without any problem. He enjoys life, loves school, goes to a “ka-ra-te” sports center.
His parents, however, were a bit worried recently due to his performance on memory. During his math studies, his parents told me, he gave the correct answer for a simple algebra question that was asked to his younger brother; but could not remember the answer when he was asked the same question two minutes later.
Before they take him to a dcotor to find out whether this is normal, we discussed possible reasons. Perhaps, we said, this is lack of confidence generated by the GBS. His father questioned the possibility of IvIG’s side effects, if any.
Anyone familiar with same after effects? Side effects of IvIG on GBS cases?
I appreciate if you can share your knowledge and experience.All the best
Murat (on behalf of ege) -
March 2, 2008 at 10:24 am
I have the same question.* My son, 11, also complains of memory problems.* Others on the site do as well, however, they are usually on neurontin or Lyrica, we are not.* We have cidp and recieve ivig once a month, no other drugs besides tylenol and one benadryl for 4 days.* At first I thought the problem was just normal selective memory because Kevin gets frusturated sometimes with math (we miss 7-10 days of school a month and the catching up gets hard)* He also is able to memorize just fine in social studies, they just had a states and capitol test.* XBOX games and the very involved maps in some of the games are not a problem as well.* But now you have made me wonder.You mention that there is a desire to do math, unlike my son’s lack of desire, so that throws my selective memory theory out the window.* I also contemplated depression as a possibility, however, you expressed a full recovery, so there is probably no depression in your case.* Most importantly, your case only consisted of a minimal amount of ivig, as compared to our monthly ivig doses.The only deductions I can come up with, are that unlike what I have previously read, there must be some sort of cns connection with gbs/cidp, since it is affecting the brain.* Perhaps the brain doe get some type of injury contrary to previous beliefs.* Maybe the brain feels it was injured and will repair?* We go to the immuno. on the 6th., and the neuro on the 20th, I plan to reopen these questions.Dawn Kevies mom
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March 16, 2008 at 11:56 pm
Hi guys,
I am 44 years old and was diagnosed 4 years ago. I am having a terrible time with memory, even though in the hospital when i was tested they said my memory was fine..my friends and family will be the first to tell you that my memory is really really bad now. We have told the dr’s this all along but they don’t seem to concerned about it. I can have a conversation with someone and five minutes later not be able to tell you a word that was said. It has very frustrating at times and quite funny at other times. And of course my kids take advantage of this. I have realized that the more distractions there are the harder it is for me to remember something. For a child this is very difficult anyone because everything distracts them but hopefully whenn doing school work and things you can have the environment as calm and quiet as possible. Good luck..Sherry
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March 23, 2008 at 1:21 pm
As a reply to Dawn Kevies Mom, yes, ege received a small dose of IvIg and for once only at the time of his illness. Currently, he is not taking any drugs or receiving any medication. No problem during games, etc.
It could be that he has the lack of confidence in him, knowing he had this disease and thinking it would affect his performance. But if so, that should also affect his performance during games, but that does not happen.
Regards,
Murat (on behalf of ege)
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