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Where do i go from here?

Posted by wondurful on 12/18/2008 3:28:22 PM.

My daughter Navey has ONH she is five years old. I'm at a stand still with daily living skills such as dressing her self.  we got through potty training with a breeze, but i just cant seem to teach her how to get dressed. she is a very smart girl her only disability is ONH she has a fair amount of sight at least 1 foot not sure how clear though. she also has bit of a weight issue she is approx. 85lbs.
Cara

There are currently 13 replies.

      

  • 1 . Re: Where do i go from here?
    Posted by onh2004sunnyboy on 12/18/2008

    This is so crazy. Our children are opposites. As far as daily living skills go, my son Garrett can do things for himself, but I often don't give him enough of a chance. In fact, last year at school, I had no idea he could put his shoes on by himself until the teacher told me he could! He has troubles getting his big head in shirts, lol, but after that he can do it. I hold his pants and he puts his legs in and pulls them up. Socks are a no-go, he can't seem to get all 5 of his toes in. I do hand over hand for teeth brushing, but he is more than willing. he uses utensils now, just one year ago he would only use his fingers. I found that if i just gave him the opportunity and stopped trying to do everything for him, he put forth more effort. Now, if this is not the case for your daughter, than talk to her teacher and find out what advice she has. I've had the best luck with daily skills from talking to his teacher. his teacher seems to have the experience when dealing with kids with needs. Also, my son is not potty trained, and I am having a horrible time with it. How in the world was it such a breeze?! I heard girls are easier, but I wish I could stop buying diapers!! Any advice would be great. About the weight thing. Garrett is the opposite because he only weighs 33 lbs! He is tiny. I say, he has no-butt-syndrome. His butt doesn't hold up his pants. lol. He is a string bean. But i look at the genetics first to explain his weight. I've always been thin, and his father is a downright skinny-beanpole. Garrett sees an endocrinologist though, he takes thyroid medication. have you been to an endocrinologist? Part of her problems of getting dressed by herself could be due to inflexibility due to her weight, but if that's not the case, then see an endocrinologist and have her thyroid checked. Actually, have all her levels checked. Look out for deficiencies. They told me look out for excessive thirst or urintation (polydipsia and polyuria) and if you need anymore information about that stuff than email me @ sarahlee_2006@yahoo.com



  • 2 . Re: Where do i go from here?
    Posted by RinneyAnn on 12/19/2008

    Excessive thirst/urination is a sign of diabetes insipidous. Basically the child does not produce the hormone that tells the kidneys to absorb water. My daughter has it, and it is very, very, very nasty. If we do not treat it correctly, she can drown herself by drinking too much or her kidneys can fail if she doesn't get enough. It feels like a guessing game most of the time. Honestly, I think this is the worst part of her condition. The blindness we can deal with; it's the endocrine functions (or lack thereof) that are the suxors.



  • 3 . Re: Where do i go from here?
    Posted by Judith Lesner on 12/20/2008

    Hi onh2004sunnyboy,
    Great to hear about the successes you and your son have been having. Am so glad his teacher was able to help. Great advice to encourage parents to consult with teachers. Often children do some things at home and others at school. Keeping everyone on his team posted as to what he is doing is absolutely the key. Don't give up on the toilet training. Have you tried "pull-ups"? Our son was past 4 before he was toilet trained. We did a lot on "big boy pants" and rewards for using the toilet. If you go to the main page of websit and got to "search" box and enter "toilet training" it will lead you to lots of information on the issue. Keep us informed as to how it is going.
    Judith



  • 4 . Re: Where do i go from here?
    Posted by Judith Lesner on 12/20/2008

    RinneyAnn,
    Thanks for post on diabetes insipidus. I have worked with children with that issue and it is really critical that it be carefully followed.
    Judith



  • 5 . Re: Where do i go from here?
    Posted by debs on 12/26/2008

    Hi my name is Debbie I live in the UK. My 6 month old Grandson has just been diagnosed ONH. As you can imagine I am devastated I dont know where to go for help or support im really feeling ripped apart. I want to do anything i can to help Frankie thats my gransons name. I would be very grateful for any replies. Thank you so much.



  • 6 . Re: Where do i go from here?
    Posted by nanakru5509 on 12/26/2008

    Hi Debs, Our 4 year old granddaughter was diagnosed with ONH and Nystagmus when she was 11 months old but we were told she would be blind for life, Thankfully that was not the case.I remember feeling completely devastated, It does get better.I am constantly looking for new contacts on line and I have even been in touch with a ONH parent group who have gone to China for Stem Cell Therapy.We are not ready for that step yet. Although she can not see as we see she has learned to do everything in her own way. She is so amazing with everything she does, Get in touch with your school district Early Childhood Intervention and they will help direct you.Also your State's Commission of the Blind and visually impaired .Our granddaughter goes to a regular preschool ( with a personal Aide) and is beginning to learn braille.We think she can see a lot better than what the Doctor's say because she knows her colors and shapes. Every child is different I also talked and explained everything to her every minute( example this floor is rough the refrigerator is cold the bed is soft) and I let her go barefoot so she could feel the different textures. I would have her touch everything t Faces,toys, food. She loves music. I will keep you in our thoughts and hope for the best for Frankie and you.



  • 7 . Re: Where do i go from here?
    Posted by rbikandi on 12/26/2008

    We have been back from China for six months and I can answer any questions any of you may have. The most important thing to remember is fight for your rights, the schools must make accomodations. Macie is 15 and I have fought for years but it will work in your favor. Just let me know if you need anyhelp I've been thru most of it.
    Shel



  • 8 . Re: Where do i go from here?
    Posted by nanakru5509 on 12/27/2008

    Shel and Macie Hello from Nancy ( Atlantic city NJ ) Aiko's Nana. I am so glad to see you on this site, You have been so helpful to so many ONH families. I saw you on TV the Doctors and he was a jerk with you and Macie You both did a wonderfull job of explaining Macie,s trip to China. I try to stay up with your stem cell site there is so much info on there. You were actually the first parent contact I ever had for my granddaughter and I can't thank you enough your both pioneers. I am so glad to see Macie is doing so well. Keep up the good work and everyone who reads this should get in touch with you.



  • 9 . Re: Where do i go from here?
    Posted by debs on 12/29/2008

    Hi, nankru, thank you so much for your reply, Im still trying to come to terms with all this I love my grandson like any grandmother loves their granchild. I want to do evrything I can to help him. Although he is only 6 months I do talk to him all the time I even sing to him and he loves it. When im feeding him i tell him "here it comes frankie" and things like does that taste nice. Your idea of going barefoot is a great one too. I was looking into Stem Cell treatment. Do you know anything about it? Thank you once again, Debs



  • 10 . Re: Where do i go from here?
    Posted by rbikandi on 12/29/2008

    Debs,

    I have all the info you need on stemcells...just let me know what you need. rbikandi3@msn.com

    Shel



  • 11 . Re: Where do i go from here?
    Posted by Judith Lesner on 12/31/2008

    Hi Debs,
    You are so much on the right track with talking to your grandchild and narrating what is happening. It is great that you have started this at such a young age. It is great stimulation and social interaction for the baby.

    Judith



  • 12 . Re: Where do i go from here?
    Posted by helpherC on 03/17/2011

    Hi I am wondering how Navey is doing now? My daughter is almost 4 and is going through the exact same things Navey did. She is almost 60 pounds and was diagnosed with ONH - We have yet to have her tested for any other 'issues' that have been associated with ONH - I dont know where to go from here....please help!



  • 13 . Re: Where do i go from here?
    Posted by teresepawl on 03/17/2011

    Hi, re: the dressing, some children with ONH have difficulty knowing where their bodies are 'in space' (e.g., where the arm is in relation to their trunk). In addition, clothing is light-weight and does not give a lot of feedback (as compared to a 1/2 gallon of milk, a brick) re: how to handle it. An OT consult may be helpful. Sequencing and executive functioning may also play a role. Finally, I am assuming that your child is being followed by an endocrinologist regularly. That is critical.
    Best to you, Terese


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