The diagnosis is always difficult. Our son was diagnosed at six months of age and realistically we knew even before then. My son also has mental retardation and other medical complications. My son would be considered severely involved and would probably fit in to the "doom and gloom" description you mentioned. That being said he is beautiful, lives with us, goes to school full time and is adored by two brothers, a large family and a community at large. Our life, and his, is NOT doom and gloom. You may be amazed over the next few years at how well you will cope with these challenges.
I know at the early stages I REALLY wanted to know how severe it would be.....what I would be dealing with. And I really, of course, wanted it to be mild. Unfortunately what I did learn is that even the best experts don't always know. To find out the extent of your son's
disability the only thing to do is watch, wait and do all the right things you are doing.....early intervention, medical consults, and of course love your kid for you he or she is.
Matthew's eeg and mri were relatively normal early on too. Apparently the child has to be older to really see what is going on. The young brain is still too immature (as it was explained to me). Those tests have been repeated in the last year (he is now seven) and neither was normal.
With a loving, dedicated, concerned parent such as yourself. Regardless of the outcome, Rex is going to do well!
Laura
rex_mom <ebrody@...> wrote:
Hi, We got hit with the dagnosis of Hypotonia Cerebral Palsy today for our 14 month old, Rex. It's the first we heard this was a possibility even though we knew he had low tone. He's been in Early Intervention services since he was 3 months. Have any others children been diagnosed this early? What tests were run first? Does anyone know how we can determine how severe it will be for him and when we'll know this? Do any others have retardation as well, the doctor mentioned this as a possibility? Anything you can share would be appreciated. I am scared of the unknown, and that is all there is right now for me, too many questions and not any answers. The doctor was vague except to paint a doom and gloom picture. He told us Rex would be dependant for life and most likely retarded too. I'm going to get a second opinion, so anything you can tell me will
help when I meet with the new doctor. What should I look for? What should I ask the doctor? Are there any tests I need to have done? He's had an MRI and EEG, both normal. Thanks for your input. Elizabeth
Hi, We got hit with the dagnosis of Hypotonia Cerebral Palsy today for our 14 month old, Rex. It's the first we heard this was a possibility even though we...
... Hi, We got hit with the dagnosis of Hypotonia Cerebral Palsy today for our 14 month old, Rex. It's the first we heard this was a possibility even though we...
Thank you. I will look into TEFRA medicaid. We luckily have excellent insurance and have already reached our out of pocket annual deductable. How is your...
Hi, The diagnosis is always difficult. Our son was diagnosed at six months of age and realistically we knew even before then. My son also has mental...
Hi My son is 20 months and was diagnosed with CP and has more recently developed seizures. It's hartd to handle sometimes. I am also currently 36 weeks...
Hi, My son also has seizures (both while awake and while asleep) and I agree it can be very overwhelming dealing with it all. My only advise right now would be...
Hi Elizabeth- My name is also Elizabeth! My 2yr old son Geoffrey was diagnosed with cp after an MRI at 11months old. He had high tone and was a preemie so we...
... Thank you. I will look into TEFRA medicaid. We luckily have excellent insurance and have already reached our out of pocket annual deductable. How is your...
Rex is my only and he is a miracle. We lost four before he was born. He is showing signs of Autism as well. I'm scared too, but am being strong for him and...
We were trying to have another but the news from Wed. has kind of made us re-think it. It is so much to learn and take in. I try to be the strong one but...
I am an occupational therapy assistant and I work in settings where I treat kiddos with CP and autism. Most however are school aged. I know that the majority...
You are so welcome. Keep in mind that you can always post questions, I may not always know the answers, but I have resources. You seem to be doing a great...
... over come she had a stage 3 brain bleed , a pda ligation on her heart, hydrosfolic. subgaleal shunt, and we were told she would never funtion normally.At...
Thank you for the words of encouragement, it means a lot. I have an update about our son Rex. He has been well for a couple weeks now and is starting to army...
... hope.Does REx sissor with his legs? Moriah does and tipie toes so when we get the feet flat she will be off.I"l keep praying, And remember speek positives...
Hi, No he doesn't scissor his legs or stand on his tip toes. He puts most of his weight on his heels actually. I started taking him to a message therapist...
Hi Elizabeth how you doing this fine HOT morning?Moriah is doing wellhad to have new AFO's because she grew out of her's in less than 3 months.She has pt and...
Hi, We are hanging in. Our live in nanny was shaking Rex and we caught it on tape last week. We called the Sheriff, who is not going to press criminal...
--It has been a horrible week!!!!! Moriah almost died. she was eating and screamed a blood curdleing scream jerked back her head and went unresponive. we...
I am so sorry for what you have been through. I guess we both feel the impact of others lack of caring for our children. I am relieved to hear Moriah is...
I was reading you e mail about your little one and it breaks my heart my name is amanda and I am 20 years old and I have cp if you ever need anything or have...
... Thank you for your email. Everything is going well no more seizures.And Moriah is doing real well.she is on a real strong med tegretol. the side effects...
Elizabeth I posted pics of Moriah if you would like to see my miricle baby--- In cerebral_palsy_support@yahoogroups.com, Elizabeth ... caught ... press ... the...
I just had to chime in regarding the potty training issue. My 6 year old does not have cp or any other diagnosis and he still wears a pull-up at night. It...
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