Hi,
My name is Felishia, i have a son named Wyatt who is presumed to have VWM disease (doing the test to confirm on monday). Im looking to talk with some families who have already been where we are right now, or families who are currently struggling with the same things. Also, any information on the disease and resources are always appreciated! Our son is 14 months old, and the apple of our eye, this world is a better place with him on it.
When i was pregnant with him, i was on high risk for a lot of reasons, one being the cm of his head. He has always had a small head, and when i was pregnant they just thought that because my husband has a smaller head that it was special thing that he got from daddy, like a trait. After wyatt was born he got viral meningitis at 1 month due to a mother not informing me, that her daughter (whom i was watching) had a fever. He stayed at the hospital for a week, and was released. We thought our problems ended there, he went onto 3 months and rolled over for the 1st time!! what a happy momma i was :) then his 4 month came around and he was no longer rolling over, and was severly delayed in alot of areas. Needless to say things got worse from there.. many doctors appointments, tears, and miles later we now know that our son has hypophosphatemic rickets (from myself), auditory neuropathy, cortical visual imparement, a dilated aortic root, seizures, high and low muscle tone, bowl problems (const.), now has a Gtube, and is assumed to have VWM. It has been a long roller coaster with few answers, but hey its just the process, im his mom, and im always going to want to know more. I know that there are different forms of the VWM disease, and wyatt is said to possibly have the infantile kind (the one presenting symptoms prenatally).
I am also a Marine wife, were stationed in california (going to CHOC orange) so family is there, but not close (originally from Utah), and there arent too many friends.. even still not friends who understand the struggles, and feelings that are going behind all of this. Hopefully, im not the only person out there that is going through this (which i doubt) but it would be nice to talk with you if you are out there.
Thanks so much,
Felishia
wyatts web page(tells his story)- www.myspace.com/pray4wyatt
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New here, looking for families with VWM disease
- By mommyloveswyatt
- Posted October 22, 2009 at 11:14 pm · 2 replies
- In Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM)
- Shared with the public
Explore topics in this discussion:
MiraLax Meningitis Rickets Seizures Fever Auditory neuropathy
2 replies
- Oldest first
- Newest first
- By lexismom
- Posted October 23, 2009 at 9:03 am
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Hi Felishia! Sorry to hear about your son, but I do know exactly what you are going through. Thank you for your reply on the digestion problem. Lexi has been on Pediasure though, it was actually one of the first formula's that she has been on. We have tried so many. We are meeting with a Nutritionist soon to see what she can help us with. Lexi started having her symptoms at a early age too. She had Strep Throat and a high fever at 14 mths old, and with the fever she had a seizure because it got so high. This is when we noticed somethingwas wrong. She just didn't seem to bounce back after the fever. We had to go to NIH in Maryland to have her diagnosed. the doctors could not pinpoint what she had. They told me she would not live past three years. She is now six years old and doing really well. Her digestion and sleep issues are really only her main problems right now. I would love to talk to you more about our little angels. Until then my prayers are with you and your family.
Sherry
- By mommyloveswyatt
- Posted October 23, 2009 at 7:21 pm
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Hi Sherry,
Thanks for the reply :) also i had a typo when i sent you my reply to your post... i meant bright beginnings soy formula :) not pedia sure (sorry), they were going to put my son on pediasure but its milk based, so hes in the bright beginnings. If you havent already tried it, then thats the one i would actually recommend :) Do you mind me asking a little more about your daughters sleeping problems and digestion? i sent you a friend request so we can just message each other instead of reply through the public post, if thats better for you.
My son has digestion problems too, hes never really made any of his bowl movements on his own so we have been prescribed ( its over the counter too) miralax to help him get stimulation on his own. and im starting to wander if hes having issues actually breaking down the formula its self now.
Also, im curious to hear about your daughters sleeping problems and what medications she might be taking for it. Wyatt goes in spurts with his sleeping issues he has. There are some nights where he'll sleep fine, and actually even sleep in, and then there are other nights where he will scream for hours until i go and hold him, but he'll still be awake. I finally get him to sleep, and then he wakes up again. Im not sure if this is similar to your daughters, or if its just my son going back and fourth wanting to be a mommys boy.
Our prayers are with your family :)
Felishai
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