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Dandy Walker Variant-Positive StoriesMy son is 11 months old and has seizures. He can’t sit, roll over, reach for things, etc. I’m wondering if anyone know of any positive stories. I’m trying to hold out hope for my son. Thank you. 11 comments to Dandy Walker Variant-Positive StoriesYou must be logged in to post a comment. |
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Is your son in Early Intervention? At 11 months my granddaughter was not sitting up either but through all the therapies she receives, today at 3 she is sitting up, walking, and climbing. She can feed herself finger food and is working on speech. These kids can do things it just may take them a little longer than other children and they may need some help along the way figuring out how to do things. My granddaughter has siezures too and one of our concerns when they started her on medication was that it may make her tired and less motivated to try and move around. Depending on what meds your son is on that may be interfering with his motor skills, he may just feel tired all the time from the meds. If you think that may be an issue for him check and see if there is something else that will control his siezures without the side effects. If you son isn’t getting any kind of therapies please post back here with the state you live in and we’ll find you the information to get started.
Hi Terri,
Thank you so much for responding to my post. My son is in our state infants and toddlers program. We just received the DWV diagnosis. His doctor believes that the seizures are causing the delays because he seems to be more alert and babbles a lot more now that he is on medication to control his seizures. His medication may be changed due to the side effects. I’m happy to hear that you grand daughter is sitting, walking and climbing. I my son will be able to do that.
Ramona
Oh, I forgot to mention that we live in MD and they have a great infants and toddlers program.
hi, i’m new here. I’m gemma, mum of 2 kids, my son is 3,5yrs old and Caitlin has turned 2 in May. we live in the netherlands by the way.
Caitlin was diagnosed with DWS when she was 5,5months old. And had her operation (an endoscopic third ventriculostomy) 2wks after diagnosis.
everything went great and at 8months she’s started with the developent, the moment she lifted her head up for the first time when she was on her tummy, i’ll never forget that. when she was 8,5months things went downhill and she got 3 lumbar punctures in the space of 6 days.
from the age of 10months things started to get better and better. she’s been surprising every surgeon and doctor time and time again. on the 18th of may she turned two. and she’s developing at the speed of a 3yr old. she talks and talks and talks. she is capable of doing so many things. sure she has diffeculty with small things but i can not express how proud i am of her. she lights up a room when she walks in and isn’t afraid of anything.
we have been warned time and time again that it’s never sure things will keep going this well, it can all get blocked in her head and she will need surgery and get a drain then. i’m still learning to take every day as it comes and we will see what the future holds for us/her. but i am aware that we/she is so so lucky that (even though they found out about the DWS when was already 5,5months old) she is this healthy.
so kdkoala, keep up hope, there are positive stories about DWS aswell.
keep us up to date about your little boy. he sounds like a real fighter
Thank you so much Caitlinsmum! I really appreciate you sharing your story.
you’re welcome kdkoala! it’s sometimes so nice to hear the positive stories aswell
Hi Kdkoala,
What county in Maryland do you live in and what hospital is your son seeing specialists? We live in Montgomery County and usually head down to Children’s Hospital in DC. Have you looked into the DD Waiver yet and REM? Both great resources that I send you information on if you’re interested. Our son Ryan is now 5-years-old with DW and hydro and used to have seizures.
Thanks,
Eric
301-919-2653
To all the moms out there – yes there is hope!!! My daughter was diagnosed with DW invitro 19 years ago. She was never, ever (still isn’t) on the growth charts, weighs 82 lbs and is 4’8, but has just finished her 1st year of college, was on her high school Alpine Ski team. You would never know that she doesn’t have one scrap of her cerebellum and that she had a vp shunt placement at the age of 15. We had early childhood intervention program when she was little and just took every day one day at a time. I threw away the charts and the books that said when she should do anything at a given time and just focused on what she could do and never treated her any different. We were just grateful for every little victory that was given. We let her fall down when she tried to stand, bump her chin when she tried to hold her head up…was thankful for every sound that came out of her mouth and for ever sentence (evenutally) that she made. You just can’t get so overprotective that these children can’t learn to do for themselves. Yes, it is hard to treat them the same, but I am convinced that it is necessary. The doctores were always amazed at how well she was doing. Sure, she had a hard time with math later on, but honestly, very few females have an easy time with it! Please feel free to email me if you would like to know more or have any questions. joycebeene@onemoon.us
Ramona,
My son was diagnosed invitro 9 years ago and we were told he might not make it through the birth. He was born and had some issue with eating but grew out of that. as he grew he was immobile and we were told that he would never walk. We got him involved in early intervention and he started his therapies. once he was 2.5 he started crawling. once he was 3-4 he was givin a reverse walker and started to get mobile with that walker. eventually he upgraded to crutches on each arm. around 7 years old he started walking with 1 crutch. and now at 9 he has no crutches and can slowly run. He also just learned how to jump. DJ has had a lot of support from Early Intervention, Family, and Church. Please never loose hope as we were told he would never walk. and look at him now.
Dave
Our son was born in January 2010 and in the womb had been diagnosed with DW at the 22 week scan. This was obviously very hard to take at the time. I must admit that my wife managed to put it to one side and soldier on much quicker than me. It took me a few weeks, if not months, to get to grips with the anger and the why us questions. On the day of his birth we were obviously worried that he’d have to be taken away and operated on quickly, but thankfully this was not the case and he was straight back up to the room with us. He is now over 6 months old and thankfully no action has been required to date. You would never know he has a problem as he is making great, great progress and is so beautiful with a lovely bubbly, smiley personality. Of course anything can still happen as he is still very young and we would expect a shunt to be required at some stage, but we do realise that we are very, very lucky. We would not swap him for the world, he is magnificent. Anyway, just wanted to leave a positive story for those of you out there who have just got the same news we got last year. As you will see on this website, it is not the end of the world. We have a beautiful baby boy who we love very, very much and has made us so, so happy. Dublin, Ireland.
What does the dandy-Walker variant involves? my unborn baby was diagnosed with agenesis of the inferior part of the vermis. This means that is the variant of Dandy Walker? What should i expect? is less serious than the syndrome itself? so far this agenesis is the only problem diagnosed and i’m trying to be optimistic because i think is a good sign that he hasn’t any other problems! I would like to know about similar cases, please en-light me!