Comments for Dandy-Walker Alliance

Comment on Slow Progress by kdkoala

kdkoala — Thu, 02 Feb 2012 19:35:01 +0000

I forgot to mention that my son has epilepsy.

Comment on Info PLEASE by Marie

Marie — Sat, 21 Jan 2012 18:17:37 +0000

Hello there.. I was just wondering how everything turned out??? I just found out last week that my baby girl has Dandy walker malformation.. There is a large gap between the two sides of her cerebellum. In between the sides there is a cyst present. I am 23 weeks pregnant so it is too early to do an MRI at the top of the brain but everything else appears to be normal. I would just like to know what is up ahead and the doctors cant give me any answers..

Comment on 24 and just diagnosed with DWS by AngelaJ

AngelaJ — Sat, 21 Jan 2012 16:25:41 +0000

Hi Joelle

Some friends and I have just started a support group on Facebook for adult onset of Dandy-Walker. I was diagnosed with it four months ago at the age of 42.

http://en-gb.facebook.com/#!/groups/136970403087710/

Thanks Angela

Comment on Husband has dandy walker with constant headache, Mayo Clinc couldnt even help! by amjeffers79

amjeffers79 — Sun, 18 Dec 2011 19:47:19 +0000

We went to Maryland to Dr. Rigamonti & he was amazing , they took my husbands shunt out which was over draining fluid that didnt need to be drained in the first place!!! He is feeling better now that the shunt is out ( He also got spinal mingetius while he was in the hospital) But he still has the same constant headache since Feb 20 2011. No one can find the cause of this headach & all the Drs say the DW cyst is not causing the constant headache. So we are back at square one still waiting for someone to find just a reason for the head ache & hoping for a cure or something to help with the pain! He was told he can no longer work & his dr told him to apply for SS back in July which we did still waiting for a answer even though they have hundreds of papers from all the drs & hospitlas we have been to plus letters from his doctors stating he can no longer work! Just wish they could find a cause for this headache But Dr Rigamonti & his team & people at John Hopkins were amazing !

Comment on Anat Baniel Method by ambermonkeen

ambermonkeen — Fri, 16 Dec 2011 18:54:41 +0000

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Comment on Anat Baniel Method by mmondia

mmondia — Sat, 29 Oct 2011 00:40:07 +0000

Hi,

Thanks for your inquiry. We did two intensives (4 days 2 lessons/day) in San Rafael and currently see a practitioner in Chicago every other month. Yes, it’s quite expensive and we actually don’t do the recommended number of weekly lessons because we simply can’t afford it. Unfortunately, they don’t take insurance so we are taking him when we can. But, that said, we do believe in the science and practice behind it. While we’ve done OT/PT for his motor skills, the approach of “there’s something wrong with him that needs to be fized so he can be other children his age” does not align with our our perspective on child development. While we see slow progress with Anat Baniel, we want to take him to practitioners that respect him where he is. Part of our willingness to pay for the treatment is due to this respect and trust they give in his ability to grow in his own time. It truly makes me see and work with my son very differently.
As for changes, we’ve stopped doing all other forms of therapy as suggested by the Anat Baniel treatment and we can only attribute his progress to the treatment. Could he have developed on his own without it or perhaps with other therapies? Maybe. But I can say that about all other forms of therapy. Anat Baniel is based on working with the nervous system, not just strenghtening the muscles which we often hear as a PT goal. it’s based on a well founded Feldenkrais method.
Not sure where you are located, but if you can find a practitioner (there’s a list on their website), you can see about getting an initial consultation for free.
Hope this helps, but feel free to contact me if you have other questions. Good luck and take care.

Comment on Anat Baniel Method by youngmomdwv

youngmomdwv — Fri, 28 Oct 2011 16:24:40 +0000

Michelle,
Hi I was wondering what profound changes Miles has had? I was researching about the Anat Baniel method and I dont have the money to go to San Rafeal california. Are there sponsors for this clinic?

Comment on SUCCESS STORY by sjlikener

sjlikener — Thu, 27 Oct 2011 23:24:34 +0000

I think all people with challenges-progress at different levels, and maybe you’re little grandson just has more motor problems than others. I know how frustrating it can be, but never give up, progress is slow!! Therapy is the best road to follow, it’s amazing how they can teach these kids, and teach the parents what to do to help. I have read other stories on facebook about their child (or grandchild) having great difficulty with motor skills, so I don’t think your’e alone, but ya sure feel like it huh!!! Tell your daughter to hang in there!! (not easy to do though!) Every little milestone these kids reach is fantastic, but sometimes just doesn’t come often enough! I’ll put your e-mail in my addresses, keep me posted-it is so good to have others to talk to!!

GOD BLESS

Comment on Anat Baniel Method by youngmomdwv

youngmomdwv — Thu, 27 Oct 2011 07:51:33 +0000

Michelle,
Hi Im a mother of a 2 yr 9 month old girl with Dandy Walker Variant. Like your son Miles, my daughter Nola didnt start crawling until she was about 2 1/2yr old, now she uses a walker but not that consistently. We have been doing all the therapies that you are except visual therapy. I have not heard of that method but i wonder if it would be great for nola, she sometimes will look at ther hands and bable (she does not speak yet, only mom every once in a while) it seems that she knows her hands want to do something but her brain to hand connection isn’t quite there, she lacks coordination in her hands sometimes as well. Just wondering where i can get more information on this method and see if it would benefit my Nola as well. Thanks for sharing!

Comment on DYLAN’S TEAM- Running for Dandy-Walker Alliance by sjlikener

sjlikener — Fri, 21 Oct 2011 22:50:42 +0000

YEAH!! We did it, and was a great success for us. Only 6 runners on “Dylan’s Team” but we raised $3,9002.00!! We are so proud to have accomplished this goal, and proud to be able to help out Dandy-Walker Alliance. But more importantly we we able to help increase the awareness of DWS just by our running shirts- with Dylan’s pic on the back. Many people asked us about Dandy-Walker Syndrome, and we were able to briefly explain this disorder to them. We hope they will in turn have the opportunity to explain this syndrome to others along the way.
Continued prayers and Good Luck to all people with Dandy-Walker Syndrome and their families.

Proud Gramma Sanny!!