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Belly Kelly 04-22-2011 06:22 AM

My nephew is special needs
Hello. My nephew is only 8 months old and has special needs. First, he doesn't appear to have any vision at all. He cannot focus on a toy or even grasp it. He is not yet crawling or sitting on his own. He can sit in a bumbo chair but that is it.
My brother and SIL have been to numerous doctors and they are perplexed. Many blood tests, MRI's, etc. He has white matter in his brain which parts are not functioning. The eye specialists don't think his eyes are working and don't appear to be maturing.

The good news is that he is growing, eating and gaining weight. He is already 22 lbs. He sleep pretty well at night.

He cries A LOT. I guess because he is so sensitive to noise. He gets overstimulated and can be fussy.

I am starting to lean toward cerebral palsy because they can't seem to diagnose him with anything. We have no idea if he will just have learning issues or if he will be mentally handicapped. Only time will tell. I am heartbroken for my family members.

I am looking for words of advice as well as information from anyone who also has/had a child like this.


Belly Kelly 08-01-2011 06:22 PM

Re: My nephew is special needs
I just want to provide an update. I hope somebody reads this one day and can relate or offer some advice. The doctor's still do not know what is wrong with my nephew.

My nephew is now 11 months old and still has not been diagnosed with anything. Genetic tests, blood tests, ERG, EEG, MRI's, MRS, CAT scans, Spinal MRI, etc. and nothing! The doctor's do think he has a vision problem called CVI. However, they are still not sure if he can see at all and have not formally diagnosed him with anything.

Here are some other characteristics:

-floppy head that always is looking up (even though he cannot see).
-eyes appear flat, back of head flat
-His legs do not function and he has no muscle power, he doesn't stand, no weight on legs
-His body is like a sack of potatoes
-Feet do not appear to be growing and are flat and pointed out
-Does not talk, but does babble.
-He can hear and likes to be sung to.
-is now having problems with eating, already has reflux
-still cries a lot - gets overstimulated easily, obviously because he cannot see
-born with Bell's Palsy

He now receives several therapies from the local IU and will also start feeding therapy soon. He is long and heavy (25 lbs.) but still doesn't eat all that well.

If anyone knows of anyone else going through this, please speak up. I would love to hear your story. My nephew's symptoms seem similar to those with Cerebral Palsy, but the doc's said they don't think that this is the case.

chicabella 08-14-2011 07:50 PM

Re: My nephew is special needs
Hello! I just want to reach out and tell you that I am so very sorry you and your family is going through this. It must be so difficult not to know how to help the baby. I hope your family can continue to seek different doctors until they find an answer.

Has anyone considered Spinal Muscular Atrophy? I would love to know if you think this could be the case after you check it out.

With much respect, I would love to share awareness that in the special needs community, it is considered appropriate to say that a person "has" special needs rather than "is" special needs.... Perhaps you had a typo or had never considered that before.

I wish you the very best as you search for answers. Keep us updated!!! I am so sorry!

Belly Kelly 11-18-2011 07:04 PM

Re: My nephew is special needs
Update, my nephew has now been formally labeled...

1. mentally challenged
2. Globally delayed
3. Visually impaired

My SIL's pregnancy appeared normal and I know we will never know why my nephew has all of these problems, but I can't help but wonder if it had anything to do with his birth? He was born with Erb's palsy but things got progressively worse from there.

Belly Kelly 02-03-2012 05:44 AM

Re: My nephew is special needs
Another update - my nephew was formally diagnosed with cerebral palsy as well. My BIL and SIL and going to start looking into his birth records. He had surgery this past week for a feeding tube because eating was causing food to go into his lungs. Poor guy has had nothing but a horrible 17 months of life. He really is a vegetable, it is such a shame. But he is very well loved by all of us and generally a pleasant baby. Who knows what the future holds for him. It is one thing to have CP, but another to be blind and mentally challenged. And again, being born with Erb's palsy just keeps us asking questions about his birth.

I keep posting this in case someone comes across something similar one day. We were all so perplexed and had nothing to read for help. Thanks for reading.

mustlovepoodles 09-08-2012 09:46 PM

Re: My nephew is special needs
I'm sorry your family is going through this with their precious baby. I just wanted to give you encouragement: I have been in their shoes. My youngest child was failure to thrive when he was an infant. By 4 months we knew something was terribly wrong. He had low muscle tone, he couldn't suck well, he couldn't smile or even make eye contact. He never cried to be fed and he screamed when he was held. DS didn't meet any of his milestones. We had specialists out the wazoo, all of them telling us horrible things. "He'll never sit up, he won't eat, he probably wont live long." Take him home and love him as long as your can, they said. :(

We had over 200 tests done with no results. DS was 2 years old when we finally got a break--one specific test revealed a very rare chromosome disorder, tetrasomy 12p, also known as Pallister-Killian syndrome. That explains everything! DS has cortical vision impairment (CVI), too. When he was an infant he have very poor vision. But we did a lot of vision therapy and now he can use his eyes enough to get around and find his food and toys. He's also moderatly hearing impaired, but he can hear music and hum several songs. DS is 17 now, a big 6'1" gentle giant. Against all medical prediction, he learned to sit, learned to walk, and learned to feed himself. He even taught himself how to swim a little! DS is in high school now and he walks about 2 miles a day. He functions much like a 1yr old--plays with baby toys, likes childrens music and videos. He cannot talk but he can sure let you know he'd rather eat ice cream than green beans! DS wears diapers round the clock, but he is 100% bowel trained and about 80% urine trained. Yay! Every dirty diaper I don't change is a victory. DS participates in Special Olympics--he has won a couple blue ribbons in swimming and this year he will go out for long distance track & field.

Was it easy? Of course not. Not when every doctor you meet is echoing bad news. But as devastated as we were, we never gave up. I took DS to PT or OT 4 days a week. I put him on horseback and into the pool. I rubbed his legs and arms with beanie babies to wake up his muscles. We carried him to the zoo, the amusement park, the library, on picnics, camping. We even took him to see the Grand Canyon and Yellowstone!

Tell your brother and SIL not to give up. There is *always* something you can do. It will probably take them a long time to push through their grief, and indeed, the grief never fully goes away. Every time we pass what would be a normal milestone--going to the first dance, driving a car, going to college--we grieve all over again. But time does somehow mend your heart. I can't imagine our lives with our our son. He is the light of my life. He is the most loving,undemanding, pleasant child who just wants to be in our presence. We have been most blessed by having our son in our lives. I wouldn't trade him for anything.


rudiraven 09-13-2012 02:29 PM

Re: My nephew is special needs

God bless you. What a wonderful person you are to share your story. We receive challenges in our lives, we don't know why, but there's a reason for everything. Love to Belly Kelly and her nephew, as well. :angel:

P.S. I love poodles too! Have 2 and 1 mixed :)

Belly Kelly 08-23-2013 08:07 PM

Re: My nephew is special needs
Thank you for sharing your story MustLovePoodles!

My nephew will be 3 in a few weeks.

He has extensive therapy every week - about 4-5 different therapies. He starts a school for the blind soon as well. He also has CVI, along with the cerebral palsy, and mental delays. We still aren't sure he will ever walk, as his eyes and brain do not work together.

Apparently, the docs said this is not a genetic disorder.

God Bless these special children!

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