Discussions By Condition: Medical Errors

My son has been misdiagnosed.

Posted In: Medical Errors 4 Replies
  • Posted By: ditzzyblonde
  • December 29, 2008
  • 06:43 AM

My son was born on June 26,1990.
He was badly brused and his face was very swollen when he was born but me being his mom i did'nt see that..All i seen was my sweet little boy..
We was released from the hospital the very next day.. I was told everything was fine..All his blood work was fine nothing to worry about..

When he was about 6 month's old we noticed that he wouldnt look at you.. It seemed like he was always looking past you..But he loved to look at the light..

We took him to the doctor and they said he was just going to be a slow learner....He wasnt crawling.. sitting up.. rolling over...lifting his head... holding his own bottle..

When he was about 9 month's old he got very sick..
He was in the houspital for 2 month's..
Flu like semptom's is what he had.

The doctor's noticed a dimple right above his tailbone..
(I had pointed that out to the doctor's many time's befor and was told it was nothing)
So thay did an altra sound on his back to make sure it wasnt a hole leading to his spine...It came back fine But

They said if there is a birth defect down there then there is one up here (in his head)...

They ran every test you can think of and they came back with soething called..

Adrenoleukodystrophy-ALD

I was told to take my son home and enjoy what time i have with him because he was going to die before the age of 3...

My son is blind he is deaf and he has the mentality of a 9 month old..
He doesnt walk..speak..feed him selph..dress him self.. he is still in diaper's..

When my son pasted the age of 10 me and the doctor's argued over his diagnosis and i got them to retest my son..
Now he has something called

Zellweger's disease

I was told at that time that there isnt anything they can do and there wasnt any info on the disease.. It was a waiting game to see what was going to happen next...

Ok now its 2008 soon to be 2009 and my son is now 18 year's old..
He is blind.. deaf.. and still has the mentality of a 9 month old still in diapers and will be for the rest of his life but

He is walking with a walker.. He help's me dress him.. like putting his arm's in the hole and he can help pull him his pants.. He hold's his own bottle and if he lay's it down he know's right where he put it and goes righ back for it...
So dont get me wrong i thank god every day that the doctor's were wrong.. But at the same time i need to know what he has because i have 2 girl's that are older than him and if they want to have childern thay need to know... Because now that my son is 18 and doing some of what he's doing the doctor's arnt sure what he has now...But there not willing to keep running test do to my insurance...

So if anyone has any idea's on how i can get around the insurance or know of anyone that is going throgh what i am PLEASE lat me know...

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4 Replies:

  • you need to go to a geneticist -- they are basically detectives of rare genetic diseases. Using your son's symptoms they can rule in and rule out different genetic diseases. I would expect that this could actually be covered under your daughters' insurance - most insurance companies allow genetic testing with family history. Also - it should also be allowable under your son's insurance.Good luck
    Anonymous 42789 Replies
    • January 12, 2009
    • 10:51 AM
    • 0
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  • What he has is a loving mom. Get him in at your local high school so you get a break. He can go there through his 22 year. They will have a few years to help you out. They should also provide PT/speech/deaf/blind teacher and transition to adult day care. Hopefully, you have applied for social security benefits long ago.
    Monsterlove 2921 Replies
    • January 15, 2009
    • 00:33 AM
    • 0
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  • He goes to a wonderfull school here in Illinois..As for social security we have applied sence he was 3 year's old and was told my husband made to much money..But now that he's 18 he reseves social security...
    ditzzyblonde 1 Replies
    • January 15, 2009
    • 02:53 AM
    • 0
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  • Blaze, how could she have been using cell phones or wi-fi 18 years ago?
    Anonymous 42789 Replies
    • January 29, 2009
    • 05:26 AM
    • 0
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