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New dandy walker parent from UKHi there everyone, I am a mother to a baby girl who is now 4 months old and at 2 weeks old was diagnosed with dandy walker syndrome. I got told the worst like so many of you at 26 weeks pregnant, and although it has been difficult, Sara (my daughter) is doing great. She has not met many of her milestones yet, like smiling laughing reaching for things or even focussing yet, but I am very hopeful that she will eventually get there. She has also got a lot of difficulty feeding and her breathing is very laboured – we have an appointment at ENT (ear nose and throat) next week so we will find out what’s going on with that. But she is thriving and coming along slowly but surely. I have found it very difficult getting information about this in the UK and even many doctors and specialists seem very vague when giving me a prognosis or talking about what it means for Sara’s future. I was wondering if there is anyone else in the UK who is dealing with DWS and if there are any british support websites/ groups? Anyone I talk to about it has no idea what it is, and has never heard of it. I feel like I have studied the syndrome like a university degree over the past 6 months and I still don’t fully know what to expect! One thing I have noticed about these children is that they are all incredibly cute! 8 comments to New dandy walker parent from UKYou must be logged in to post a comment. |
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Hi Sara’s Mom,
My name is Maxine and i too have a little girl, she has Dandy Walker malformation and she is 2 years old..We are from Ireland, just across the water from you..Your daughter is really beautiful…My little girl is super…she had a real rocky start and spent the first 3 months of her life in hospital. Gracie is my daughters name .Is your daughter in early intervention programme.. and how do you find it…
Gracie has been discharged from Early Intervention, she is only 2 and she can do things like a 4 year old can do….I’m so delighted with her…Your little girl will do it too…in her own time…no rush…just keep on stimulating her..
..Has your daughter got a shunt? I am friends with a few people from the UK and the US through Facebook…you should set up an account. If you want you can add me as a friend and i could put you in touch with some people…My name is Maxine Carey..
I would love to hear from you again and hopefully i will be able to answer any questions that you may have..
God Bless
Maxine and Gracie.
Hey Maxine. Thank you for your response, its so encouraging to hear how great your daughter is doing. I have added you on facebook so would be great to get and keep in touch with others that have similar issues. Sara is in the early intervention programme, but so far we have not found it to be of much use, we have had to jump about a bit and stamp our feet before getting appointments for things and I feel when they occasionally do have a look at her its all doom and gloom..
Sara does not have a shunt no, does your daughter? I can only hope and pray that Sara does well too.
Thanks again for your helpful and encouraging response.. Hope to keep in touch!
Catherine and Sara.
Hi Catherine,
I am also in Ireland (hi Maxine
) but I’m originally from the UK. Our daughter Fionnuala is 3 and has DWS. She is developmentally delayed but is making huge progress. She has been crawling now for a few months and is learning to pull to stand. So I have to watch her like a hawk because she’s into everything!! Please do feel free to add me on FB too – my name is Tracey Holsgrove. Fionnuala does not have a shunt and at her last neurosurgery appt they seemed hopeful that she will not need one at all.
Keep in touch,
Tracey & Fionnuala
We are in the UK as well and our little boy is nearly 4 (4 next month.) He was initially NG tube fed, we have had major problems with weight gain with him which we later found out, after 2 weeks at Nottingham’s Queens Medical Centre was down to high blood pressure of unknown cause. He is now on medication which has dramatically seen a good increase in weight gain. He has been going to a special school for the last 18 months ago, now 3 full days a week and loves it. He cannot walk or crawl, and cannot speak sentences, but can communicate with gestures and the odd word, such as ‘good’ or ‘drink’. He adores music and can’t get enough television, particularly Postman Pat and Roary The Racing Car, as well as Justin Fletcher’s Something Special, which is fantastic from a Makaton point of view.
Hello,
Im fiona and my 22 month old was diagnosed with DW at 20 weks gestation, we are so lucky she hasnt needed a shunt, she is slighlty delayed particularly in terms of gross motor skills, she has been crawling a while but no sign of walking.
Her main problem is poor weight gain for which no cause has been found , she is 14 lb at 22 months. Despite eating well.
She is having a biopsy of her intestine next week to look for signs of malabsorption.
Sara is beautiful, I agree with everyone else go with your instincts, keep stimulating her and fight for everything you can.
A guy in Liverpool is trying to set upa DW group in the UK which would be fab, if anyone wants more details please message me on facebook Fiona Mitchell or email fiona@mitchell448.orangehome.co.uk
Hi everyone, sorry its taken me so long to reply, you know how it can be at times! Thanks for getting back to me its so great to hear all your stories. As I said I’ve been struggling to find information on Dandy Walker Syndrome, but after having spoken to a lot of people, whose stories are all very different, it seems to me that the main issue with DWS is delay, does anyone know if kids with DWS sometimes never start to walk or talk etc..? Its a lot to think about and requires a great deal of patience, I’m starting to think will my baby ever start to do these things? You are all much further on than I am, any tips or advice to keep motivated and patient would be greatly appreciated. Thanks again. Catherine and Sara.
Hi , i am new to this site , your daughter is beautiful . my son is 6 just turned all his milestones have been and still are very delayed . he has no diagnosis other than cerebellar hypoplasia and a large cisterna magna from his mri scans , he is also hypotonic and has regular therapys all over the board so to speak . he did not walk until he was 3 and he still is very wobbly and has to wear specialist shoes. After looking up this syndrome i am convinced this may be what his diagnosis is we are awaiting geneticist blood results at the mo . cameron also has global development gelay , in all areas ,especially , speech ,fine and gross motor . Forgot to say i am also in England . think i may mention this syndrome to his dr when we next meet . i would just love to have a diagnosis rather than just saying ” special needs ” all the time . wishing you andyour beautiful daughter all the best my email is vicky.windmill@sky.com if you want to private at any time i am also on facebook xx
Hi Vicky,I read your posting (below) today with great interest and hope that you don’t mind me reaching out to you. We have a daughter Edith who is 6 years old this March who displays similar symptoms as your son. She was diagnosed in 2009 with DW Variant although as I am sure you are aware this covers a very wide range! Edith has had trouble with balance and has a speech disorder. However, she is progressing and seems to be a consistent year or so behind her peers. She has challenges with retaining information but it does seem to eventually go in. She is in a mainstream school and has Speech and understand more about your experiences and how you have coped over the last few years with schools, SEN, therapy etc. We have learnt a lot about Edith and it would be great to share this with you also, a problem shared….! I tried your sky e-mail and it did not work so hope this finds you, Simon