Survivors' Stories page #4 - Ubaid's Story
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About ten days prior to Ubaid been diagnosed with GBS, our family visited a local Botanical Garden which also had a huge waterfall. As all other children were playing in this water, we saw no harm and Ubaid was playing freely, not swimming, just his feet in water with a little splashing. This park also had an Eagle sanctuary nearby and at the top of this waterfall we had noticed Eagles nest. It was almost one year after Ubaids illness did I ascertain that this might be the cause Of GBS. Nestings from the birds that fell in the water – I guess I might just never know.
Three days later Ubaid had a mild dose of diarrhoe and of course we thought its obviously something he had eaten. After this he was fine.
On the 28th December 2002, about midday he complained he had a pain in his leg and he starting limping. He had bought a new pair of sneakers and now we though perhaps this could be the course. Funny, how we always just assume. We had busy day that day, and after lunch we visited a bird sanctuary, which not only had exotic birds but also reptiles and insects. This was also another factor I initially thought might be a contributory factor. But Ubaid was already limping prior to us visiting the bird park.
That evening after having dinner at a restaurant with my parents, Ubaid
Decided to spend the night with them. They live about ten minutes away from my house. I was told that he had a restless night, complaining about pain in his legs and at one point he scram as if “muscles had just disappeared”. I received a call at about 10h30 that morning from my mother saying Ubaid got off the bed and just fell, had to be carried to the bathroom. I was convinced that he was playing some sort of prank, but when my mother call about half an hour later telling me Ubaid could not lift his cereal spoon and was now looking pale and tired, I panicked and immediately rushed to his side.
When I arrived, instinctively I knew something was wrong and my mother recall that when I arrived there, I simply walked in picked him up (energy I don’t know where this came from) and immediately took him to hospital with my husband. It was about 12h00 when we arrived at a hospital which is only five minutes away from my mothers house. Milpark Hospital casualty department luckily was not very busy and Ubaid was attended to immediately. I told them he could not move and is feeling
Listless, there was nothing else to say.
A standby neurologist suggest we do a scan and x-rays but nothing Wrong could be found. An hour later our family GP arrived. He is a close family friend and after all I had told him, he suspected Ubaid had Guillain Barre Syndrome. At this point in time I didn’t know what this was and to be very honest I was not interested. At the bottom of my heart, nothing could hurt my child and even if there was something wrong with him, its okay cause I’ll always be there.
It was then decided to take Ubaid to Garden City Clinic which is about ten minutes away from Milpark. Garden City has a specialized Pedantic
Unit and so arrangements were under way. We did not wait for the ambulance to transfer him and decided to take him ourselves. This ten minute journey was the scariest of my life. I remember telling Ubaid,
“you gonna walk, you gonna walk, everything’s fine”
Garden City pediatric ICU was waiting for us. After the admission and the formalities, He seemed a little settled. After that I only remembering coming out of the ward two hours later and surprised to see all my family sitting in the waiting room. I just cried and cried and felt absolutely helpless, something I never felt in my entire life.
Ubaid has a lumbar puncture done, where he was still not confirmed as GBS because his protein levels were still normal. As we were not allowed to spend the night with him, I left with a heavy heart but was a bit comforted at the thought that the hospital was only five minutes away by car. The next day, Ubaid was now completely paralyzed and starting experiencing pain. He had to be wheeled to the neurologists rooms
And immediately a nerve conduction test was done. The neurologists confirmed it to be GBS. I comforted myself with the thought of at least him being diagnosed compared with the other cases in the same unit, where parents and doctors where baffled with there children’s illness.
On Monday, 31/12/2002 when the world prepared it itself for the beginning of a new year, I laid helpless next to my son and felt like apologizing to him for what had happened. At about 10h30, a counselor visited myself and my father to explain to us what was to happen to Ubaid. His breathing was deteriorating, GBS had risen to his chest and he needed to put on to a ventilator. Ten days before this, my son was jumping from one sofa to the next simply because he was bored and today he could not breath. The curtain was closed and doctors and nurses were inside. About fifteen minutes later the curtain open and this is a scene to my dying day I will never forget. Ubaid on a ventilator, tape strapped to his face, wearing a napkin completely paralyzed. Life just ain't fair.
My first words to the doctor, “is my son on life support”. Amazingly Ubaid was still talking and in gruff but audible voice told me, “Im fine,
It will be okay”. My child gave me hope and I knew instinctively that whatever happens, my child is coming out alive. Death is scary but I can clearly admit, there was never a time when the thought entered my mind.
Plasmapheresis astounded me. Ubaid had a total of eight treatments and it was a sight to see. In addition to this he was on immuglobulin treatment. The attached doctors report details all his treatments accurately.
Ubaid was started on physiotherapy almost immediately and although he was in much pain, this continued twice a day. He then also started doing it on his own. About three days later, his arm was already moving and and progress continued on a daily basis. Still on a ventilator, Ubaid spent much of his time exercising, watching TV, talking to the patients next to him, entertaining the nurses. Despite this condition, he continued to be himself.
He was only served a concentrated vitamin enriched milk drink through his tube and occasionally would be spoilt with milkshakes but he could not really taste this. At one stage he asked when is he going to get his life back and I had no answer. I noticed that he got taller, I could see this from his bed and but he continued to lose weight. Sometimes he was pale and restless and sometimes in high spirits. Well he was just a kid who wanted to play and here he was stuck in a hospital bed with a vent.
GBS as told by one of his visitors who was a recovering patient means GET BETTER SLOWLY, something Ubaid and my family accepted. The bottom line was he was improving and imagine my surprise when one day I entered his ward and he started waving. He continued to get stronger and the doctors felt that he was ready to be off the vent. The head nurse and well as the assistants disagreed and on the eventful Friday morning Ubaid was taken off the vent. Throughout the day though, he struggled with his breathing, coughing, weazing and very very uncomfortable. This was 24/01/2003. At 2a.m. we received a telephone call that Ubaid need to be intubated again and I found that to be a very very traumatic time for Ubaid and my family. I wish I could have told the doctors what I thought but I controlled myself for the sake of Ubaid.
Ubaid got use to the ventilator and time passed quickly, he was comfortable and we did all we could to assist him. He was now getting stronger in his breathing, his movements were improving and the nurse started weaning himself off the vent slowly.
Eight weeks on the vent and on the 25 February 2003, Ubaid successfully was off the ventilator and the “breathing machine” was gone forever. That very moment as I walked into the ward, I cried like I never did before and ran to the waiting room. I prayed that no mother on earth must ever experience what I have. God is most forgiving and most merciful. Pain is bearable but unforgettable.
He also started to seeing an physiatrist which did wanders for him. He seemed more enthusiastic and was ready to come home. The nurses treated him to WWF Wrestling and he went on a stretcher accompanied by paramedics and nurses. He was lucky enough to receive each wrestlers autograph and this really motivated him. The rest of the days we entertained him by taking him to the helipad and visiting the entire hospital.
The night before Ubaid was discharged, he had to have a superpubic catheter inserted as the Doctor was not sure regarding bowel movement. He has a little operation done and it went off well.
On the 11/03/2003, Ubaid was discharged from hospital, 72 days in total. I truly admire him for his strength and his ability to overcome a devastating illness. I know that whatever I did, I did my best. My husband is a wonderful caring father and we were and will always committed in the upbringing of our children. Ubaid excellent progress till today, is because of the love and support he has received from everyone.
The first few days at home was very unsettling. He had gotten used to a little ward and the first day he was at home, I took him to my room. My bedroom is in the corner of the house and for one hour that afternoon all he did was look at walls and I turned him every ten minutes. It was actually quite funny when I think about it now.
We had the catheter checked and then it was changed to a smaller one and this lasted for about another four weeks. It was quite disturbing for him when I cleaned it every day and the day it came out we celebrated. Finally rid of all the gadgets.
His recovery according to what is expected from GBS is quite good. Its been very difficult, as the first few months we had to adjust our lives a lot, like installing a ramp for his wheelchair as we have stairs leading to the entrance of our house. He was sleeping next to me and woke me up often to turn him or just take him to the bathroom. As my house is double-story my husband and I took turns carrying him, and both bathed him and dressed him.
He had a nurse to assist him during the day for ten days when we were at work and even then he was not alone. He was always with his gran. Two weeks after discharged, we took a brave step. Ubaid started school. Not just any, but a special one. A school that caters for children with special needs together with phisotherapy and occupational therapy sessions.
He made friends easily and he also started doing hydrotherapy. He had private physio twice a week, hydrotherapy once a week, together with ot and physio in school. His afternoons were spent in either some form of therapy or going for drives in his wheelchair with his grandfather.
While he was at the hospital. He was televised with the wrestlers and he appeared on national television which stirred him up quite a bit. He received many gifts and visitors and I often found myself explaining to people about Ubaids illness as not many people know about GBS.
About a month ago, I told someone Ubaid went for bungee-jumping and injured his leg when he landed. Ubaid was in hysterics.
He was comfortable on his wheelchair and then he started crawling.
We massaged him every night and to this day after his bath he receives a leg massage. He was in a lot of pain and I often cried because I felt so helpless. He upper body became strong very quickly and after four months of the wheelchair, he started using a walker. It was very difficult at first and his back really hurt and two months after that, slowly he started walking unaided.
The reason I think his recovery has been good, is because he was diagnosed very early, he received IVIGS and Plasmapheresis a day later.
But I really will never know as there are some cases where recovery has made very quickly.
Ubaid has grown a lot. He is a eleven year old little man. He has grown stronger that before his illness. He use to suffer from tonsillitis and this has disappeared. He is an asthma sufferer but its very controlled. The winter that passed though not severe we took very good care of him, making sure his body was never cold. He appetite is excellent. With him breakfast he has two tablespoons of Omega 3 Flaxseed oil in juice. With his afternoon meal, he take 400ius of Vitamin E which was recommended by a GBS sufferer from the USA. With his evening meal takes a vitamin B tablet. Pain in his lower leg still persists but this is due to regeneration of nerve muscles and for this also recommended by a recovering GBS Patient, we use an ointment which has aloe vera and capsiacan in it. This is very soothing.
I have taken Ubaid for therapeutic reflexology, which deals with a trained reflexologist massaging the meridian points in his feet. Each section in your feet is connected with a part of your body and after three session so far, he really feels good. I have also taken him for Hot stone therapy which is the same thing but for his back and this assisted him when he started walking unaided for his back pain.
At the end of this year (2004) my intention is to take Ubaid to the coast and let him swim with dolphins as advised by a colleague. I also want to take him for eqi-therapy, something to do with riding horses.
Like any illness, GBS plays havoc on your mind and Ubaid sometimes has nightmares and is restless. I don’t think this is not a long term thing so Im not really concern. We talk about the time he spent in hospital and then after that he always reassures me that his much stronger now. Its hard sometimes for me.
Ubaid is still not running and he still cant lift his ankles upwards but he is getting there.
You know after a while its not so sad anymore, it becomes a challenge.
It is the fundamental duty of every human being never to give up hope.
There is always something good that will follow. He is destined for great things and this was just a slight disturbance in his life.
This lesson has also taught me many things. I have communicated with people from different backgrounds. From other religions and every one had the same message. People have prayed for Ubaid from all over the world and it is only through the power of prayer that his recovery is so remarkable.
Ubaid passed his grade five examinations with distinctions and received a total of five awards. He really did us proud. This year he has also started doing his afternoon religious class. When he comes home, he plays soccer with his sister, not yet running but jut kicking the ball around. I also bought him a punching bag with gloves which helps him a lot with his balancing. He is doing very well and started swimming classes.
I’ve also decided in playing a more active role in the fight against GBS and although it is very uncommon, people need to be educated on it.
I’m totally against the use of very harmful detergents, pesticides and other toxic chemicals.
I must mention something. Ubaid has never suffered from measles, chicken-pox or any illness, and has been inoculated against every disease even to the extent of boosters. Prior to GBS he was always very healthy and I don’t ever recall him being extremely ill.
Yesterday, 03/02/2004 we went to his neurologist for a check-up and his exact words to us was, “a miracle”. I am too happy for words.
Something the doctor also told me which might be of interest, is that recently he treated a patient with GBS onset with seven blood Plasma exchange. This was done on the same day the patient was admitted and one after the other as the days followed. IVIGS was never given to the patient and recovery was also immediate.
God says for every disease there is a cure. I wish to thank everyone concern to numerous to mention for there support and there love.
Ubaid needed and still needs a lot of motivation although this child is completely full of life. I constantly “nag” at him to do his ankle weights and encourage him to do exercise. Support is very important.
To Ubaid, you are truly an inspiration to me. All my life I have search for a role model, for a courageous and outstanding human being, little did I know that I would help create this person.
You will grow, you will err, you will create. Through all your dreams, your weakness and your aspirations, through turmoil, through joy, I will love you all.
GOD LOVES US.
WITH ALL MY LOVE, MY DEDICATION
Ubaid is twelve years old and is looking forward to becoming a teenager. He is so tall – sometimes its so hard to understand that he was so ill. Its been well over two years since He was diagnosed with GBS but believe me when I tell you everyday there has been Improvement. His upper body strength is fully restored. Actually he’s very strong And can play a mean tug of war.
He doesn’t need any Occupational therapy now, and practice has now come in the form Of general habits, writing, typing etc. He creates beautiful things with his hands.
He still continues with physiotherapy once a week and has taken up swimming which Helps, with his breathing. Of course walking in itself is therapeutic. He also does Cycling on a exercise machine at home.
He is healthy and lively and a wonderful person. He still doesn’t run, he can’t play Soccer on a field yet and sometimes wishes he could do things his friends do. But the Most amazing thing about him, he focuses on what HE CAN DO and believe me there Is a lot he does.
His toes are moving but he cannot wiggle them vigourously and he wears a special a.f.o.s to walk. This has prevented drop foot and he has control and balance of his walking. He even sleeps with a special orthopedic device. All in all, his balance is coming slowly but surely. Its seems like a long time and I now things might not be as quick or perfect as I hoped it would be. It is important to be focused and positive and most important, never to give up.
He has returned to a mainstream school and together with his religious class and homework, Life for Ubaid is very hectic. His progress on walking has been slow but he still has nerve Pain on his legs at night and we still continue with massaging. It gets better all time, slowly But surely.
Thank you for the opportunity to share my world with yours.
This page was last modified: July 18, 2006