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Does anybosy know what this might be. My nephew has something wrong with him and they keep us shut out.

My nephew turned 3 in Sept. and he still cannot sit up on his own, has to eat through a feeding tube and doesn't really look at you when you are talking to him. My step brother and wife are very touchy about this and have not told us exactly what he has. They have been to the best Dr.'s in the US, so they have to know something. All they say, is that they have a special needs child. Does any of this sound familiar to anyone?

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Asked by Anonymous at 1:39 PM on Mar. 6, 2011 in General Parenting

Answers (8)
  • It sounds like he could have many different things going on. It's not always easy to figure out exactly what the condition is or are. To me, it sounds like you are being nosy and need to respect your step-brothers' family wishes to not have to discuss it. All you really need to know is what they've told you: they have a special needs child who is getting the best medical care he can.

    Answer by silversmom at 1:43 PM on Mar. 6, 2011

  • It could be so many different things or they could be telling the truth, theres no definite diagnosis yet. Just remind them you love them and their child and you are just concerned and want to help out as much as possible. GL

    Answer by aheuszel at 1:43 PM on Mar. 6, 2011

  • Its hard to say there could be multiple things going on in conjunction with one disorder. I know when my dhs son was born he was told due to being deprived oxygen during his birth (he was a premie) he would be seriously disabled, on a feeding tube, and need alot of help. He also ran the risk of being blind. All of that was due just from being premature and oxygen levels dropping during his birth. I also know people whose kids have other disorders where they have similar problems.
    Just be there for them and when they are ready to share more information they will.

    Answer by gemgem at 1:47 PM on Mar. 6, 2011

  •  There are several diseases or syndromes or whatever, that have those symptoms.  It would be hard to take a guess at which one though without knowing more details.  If the parents want to talk about it, they will.  If not, that's their choice.  I know it must be hard, he's your nephew and I'm sure you would want to help out in any way you could, but there's not much you really can do.  Know what I mean? Just be as supportive as you can.  I'd want to educate myself as much as I could to be able to understand, but if they don't want to give you the diagnosis there's nothing you can do.  Sorry.


    Answer by CookieMom108 at 1:48 PM on Mar. 6, 2011

  • I agree with the previous posters. Try to respect their privacy in terms of not giving a specific diagnosis. There could be any number of reasons they don't want to talk openly about it. Maybe it is something genetic and they blame themselves, or maybe it is just too painful for them to discuss. I could certainly understand that.

    At the end of the day, you know some of the issues that he is facing, you know that they are taking him everywhere he needs to go for treatments, and the way they and you care for him is not going to change based on full disclosure of his particular ailments.

    Answer by Mom-2-3-Girlz at 2:17 PM on Mar. 6, 2011

  • Rather than focus on naming his disease, focus on what you can do for your brother and sister-in-law. Offer to provide respite care, so they can get a night out.

    Answer by rkoloms at 2:32 PM on Mar. 6, 2011

  • I think you are being awfully nosy. You can't imagine how they feel or you wouldn't be going around them trying to get a diagnosis on their baby. You need to sit back and be patient. You have as much information as you need for now. It is very difficult time for the parents, I am sure. When they are ready to let the world know his diagnosis, they will share it with you. Until then, clamp your lips and be supportive any way that you can.

    Answer by spottedpony at 2:54 PM on Mar. 6, 2011

  • Maybe they don't know what he has. I follow the caringbridge of a little boy who has so many symdromes that what he has doens't have a name - they've also seen many many doctors, he goes to the hospital for days to weeks at a time once in a while, they just don't know. And as far as respite care - not just anyone can do that, sad to say, some of those monitors & things, even the parents can't take the baby/child home with until they can pass days of testing in the hospital. Let them know you love them, you care about them, and if there's anything you can do to ask, and offer to bring meals, etc, to give them "time off" that way.

    Answer by Anonymous at 6:23 PM on Mar. 6, 2011

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