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Mystery Diagnosis

 
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Junior Member
Registered: 09-28-09
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I have a son who is going to be 3 years old next month on the 7th.It is going to be a happy joyful day,but also a very sad day for me.Me my husband and our family have been going through alot.When my baby boy was born it was a joyful day he was so beautiful and precious.We brought him home three days later and everything was great.About 4 or 5 months old we noticed that he was gaining any weight no matter what we fed him.It also took him about a hour to drink a bottle.At that point we knew that he needed to be seen at the doctors,When the came in the room and told me that he only weight about 7lbs and hadn't gained any weight i was shock or more then less in denial that there was something wrong.I didn't want to believe that something maybe wrong with my beautiful baby boy.So his doctor sent us to the hospital where they looked at him and couldn't really determine nothing.But the managed to make me feel as if i was a unfit mother and he would be taken away from me and his family.They put him on a special diet to were he had to eat a bottle every three hours of a high calorie formula.He was in there for about a week or two.The sent him home with me and told me to continue to feed him every three hours and to take him to Physical Therapy because he wasn't able to do anything at his age.They involved DCF into my life to watch me ,husband and our kids as if we neglected them.Do you know how it feels to have some come into your home and watch every move that you make and determine what you are going to do in your life and with your kids.It is very unpleasant, it makes you feel as if you are a terrible parent.But we followed what ever they wanted us to do and lived our lives and they seen that we were good caring parents and wanted nothing but the best for our kids.They closed the case.Aden (my son) continued to go to his doctors appointments and Therapy.We went and seen a neurologist and he did all kinds of test on him like MRI'S (two of them)CT Scan,Blood work,every test that you can imagine was given to this baby.Everything came back fine,here he is now 1 years old and still no answer to why he is not doing anything he should be at his age.One year goes by still going to Therapy and well child checks and living life to the fullest with him and still no answers.So finally we call another Neurologist an set up a appointment with then for a second opinion.We get there and the only thing that he does is look at the records that i brought from the other doctor and tell me what i already know.And writes it in the computer that he has Cerebral Palsy.Now here we are all crying and just can't understand what happen,every test that was given to him to check for anything came back negative,and why didn't it show on his MRI'S.So we live with the answer that we got from him and continue to love him and work with him to get him better,and then we got to thinking well maybe we should set up another appointment with his Neurologist (the 1st one) and see what he has to say now that it has been some time and nothing has changed.So we do and he says that Aden has no sign of Cerebral Palsy and he wants him to get some Botox shots in this neck that way he would be able to hold his head up.So we go and see a Adult neurologist and she says that it would work but it would have to be researched to see if it has been used on someone his age.And also she would like to do a muscle biopsy on him to check for any muscle disorders.So we go home and we wait and wait and wait,Finally i call her to get you will receive a phone call in two to three days.She calls us to let us know that it has been known to be done on kids his age and younger ,but there are some side affects ...So we say like what and she says a child has died from it.Well our first answer to that was no ,but then we thought what if it would help him ,but then something bad may happen.That isn't a chance that we are willing to make.We are not sure what the next step will be ,but i do know that he will be three and i have never heard him call my name ,seen him walk,crawl,sit up,play with his feet,nothing.Do you know how hard it is to see your child and he can't do nothing but lay there.I may never see him do anything ,may never see him play with his brothers and sister,kick a ball, play a sport ,read a book,tie his shoes,feed himself,Go to school, go to prom ,have a date,do anything.I have to think about it everyday whether or not he will ever get better.I have to continue to tell his brothers and sister way he is still a baby when they ask me ,and have to understand that they just want there brother to get down and play with them and go swimming and play on the swings .I sit here and think will i have to add on to the house to make room for all of his special needs equipment and get a special van.And i worry about how i am going to do it with the money that we make.I am just scared about the future and what it may have in store for our family.If you can help us in anyway please e-mail me back.Thank you and God Bless.

Christina MacIntosh/Sullivan
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