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Old 09-27-2016, 02:01 PM
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My hero

I would like to share a little about my son.
In 1981 my first child was born. Towards the end of my pregnancy I knew there was something wrong. I would feel him bumping, rhythmic and then many hours would go by until I would feel him move. I went to the ob/gyn and he would tell me his heart beat was good and they would have me drink orange juice, but still, no movement. They had no explanation.
When he was born, he didn't suck well, but he was a beautiful boy and everyone said he was fine and sent us home. He would have episodes of bending forward, hard, followed by a load yell. This would go on for 20 mins to and hour and be followed by extremely sound sleeping.
He was finally diagnosed with Infantile Spasms when he was 6 months old and 2 days after his DPT booster. Shortly after this, he was diagnosed with Tuberous Sclerosis.
We were told he had very little possibility of living up to or past the age of 2, because of the amount and locations of brain lesions. He was tube fed and non-ambulatory,
At around the age of 2 his seizure pattern change to Lenox/Gaust. Syndrome and he suffered as many as 300 seizures daily. He developed 2 Giant Cell Astrocytomas in the Forman of Monroe, a place in the ventricles of the brain, that required surgery. The surgery was a disaster and he developed a severe bleed requiring more surgery.
Tuberous Sclerosis is known to be a source of epilepsy that can go diagnosed until someone is born with a severe form, but we had no family history on any side of our families.
My son developed tumors in his heart, lungs, kidneys,eyes, liver and muscles, besides the continually growing and forming tumors in his brain. I was told many times that his 'growths' were not cancerous and that only their positions would cause serious problems.
At the age of 20, he had Inappropriate ADH (?) and went into a coma that was reversed in the ER. At this point he had also developed dementia, besides the profound developmental problems. The episode, I was sort of told, was due to metastasis of the tumors in the lungs that spread over 6 months to all his organs.
His life was so difficult and he was always trying to make us laugh. He would to the rudest things and burst into laughter and really just wanted all of us to be happy.
He died at the age of 21 and it wasn't until his hospice care that a doctor came into my house and saw what I had been dealing with for all those years. We had tried so hard to make doctors see that he was a human being and not their test dummy, but it never worked. Even, fresh out of surgery, a Fellow at the hospital tried to get me to show her his 'spots'. I told her that they are there and would still be there when he woke up. I had teams of doctors insist that I disrobe him so that they could, for the good of all the other children, see all of his skin manifestations and deformities. But, at the month before his passing, this hospice care doctor saw what I had always seen and he promised to not forget him.
Do not accept a doctor that you can tell does not really care about you or your child as a human being. Remind them, if you can, that all life is precious and that you or your child have a right to enjoy life to the fullest. Also, never beat yourself up over the decisions you make that don't work out. Remember, that you can only make the choice that is good at that time, with all the information that you are given or find. There are few right or wrong choices.
Thank you for having me here and allowing me to share. I pray that all of you find happiness.
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Suman (09-27-2016)
Old 09-27-2016, 02:28 PM
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Please accept my condolence for your loss.
Thank you for sharing your story and your advice at the end. It gives strength where I'm weak and encourages me to continue to press on.
May God bless you!
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Old 09-27-2016, 02:34 PM
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Thank you!
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Old 09-27-2016, 02:41 PM
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Thank you for sharing.You so right can only make the choise by information at the time.
There another lady on here who got son with Lenox maybe she contact you
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Old 09-27-2016, 03:21 PM
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Do not accept a doctor that you can tell does not really care about you or your child as a human being.
Wise words, won at too great a cost.

Thank you for sharing. Hugs to you and your family.
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Old 09-27-2016, 04:43 PM
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Very sorry for your loss.
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Old 09-27-2016, 10:47 PM
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I'm sorry for your loss!

Thank you for your kind and encouraging words!
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Old 10-11-2016, 12:37 AM
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What a hard path you have walked, but I could easily see your love for your son in your words. Thank you for sharing your story.
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