white matter brain disease leukodystrophy

I am a mother of a beautiful 10 year old boy who has this form of leukodystrophy, I would like to talk to someone who knows anything about it or anyone who has it....I just joined this website....so please contact me . It would be greatly apprieciated
God Bless

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I too love and serve the Lord Jesus Christ! My son Joshua has a leukodystrophy called h-abc and we depend on God for strength, hope, peace, and endurance and he has never failed us. Do you know what kind of Leukodystrophy your son has? I will keep him in my prayers. With God all things are possible!!!

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Hi, Thank you for your prayers I will also pray for you and your family, My son has white matter brain disease , He is a precious gift from God.....You are right with God all things are possible.....

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Please feel free to email me or call. I know more than I wish to about these disease and want to provide you with any info I have and contacts for the future. Ignorance is not an option. Gina, Evan's Mom
ginacinsc@aol.com
949/842-9975 We are in California

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Thank You Evans mom, I will email you. Any info would be greatly appreciated.

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Do you have much info on White Matter brain disease? What are Johnpauls symptoms? When did he start showing symptoms? Did he ever need medicine? Josh has been on carba-dopa, artane, and is now on baclophen. He also had tendon lengthening surgery (instead of botox injections), which really helped his spasticity in his legs.

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JohnPauls is not on any medicine "yet". He didn't start walking until he was almost three, and he is slow, but a fighter, he is 10years old with a incredible personality but he is about a 4year old age level.. He has clonus, which effect his muscles , they are very stiff and they shake alot if he is sitting in certain way, he is and has been in speech and physical therapy since age 2...I wouldn't change anything about this young man, he is my Angel from above, the purist, kindness , most thoughtful little boy i know.. and he is so cute i can't stand it...and what is so beautiful he knows the lord....and you can't get any better than that when we have children....with or without special needs....

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Hello,

I am very sorry to hear of your struggles with unspecified leukodystrophy. It seems to me that most of the children with this disease are really special and somewhat angelic. He looks like a really sweet boy.

My son Dane Stream died in May of this year after a fifteen year battle with the disease. That's the bad news. The good news is that he had such a shiny spirit that I cannot help but feel he really is in such a better place.

However, back to your son, I do have a lot of suggestions. Regardless of the insurance you have, it will be easy to reach maximum coverage levels and tempting to get have them drop you at some point. Just stay on your toes as they can be very insidious about this.

Second, you will need to really create a large community grassroots system to help you. This disease is emotionally and financially draining. The more you learn to organize to take care of yourself now the better off you'll be for your son.

Any equipment any body suggests that he might need, obtain it, even if it feels premature. Our experience was that sometimes we would wait until it felt like Dane really needed it, (because we were trying to be helpful to Dane's psychological needs and also we were in some denial about what it really all meant to have this illness), therefore we would wait with slightly disasterous consequences, such as, he would change very quickly and then we would be waiting a long time to receive the appropriate equipment for his needs.

I am so glad that you found this site and that you are reaching out for help. It's one of the best things that you can do, keep getting information, build support, take care of yourself and pray that more money will go to finding a cure for leukodystrophy. Any energy you have or that any one offers to do legislative action is probably a very good idea. Our political system isn't designed yet (and this is regardless of party affliation), to really spend the money in research that leukodystropphy deserves.

Should you want to connect me directly, please feel free to do so. I know it can be a hard path that you are on and it can be an amazing path.

I will hold you both in my thoughts and prayers, Blessings,

Deb
debinmoon@gmail.com

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I know what you are going threw. My daughter is almost 2 years old, and they still don't know what type of leukodaystrophy she has. She has had so many test done and they all come back normal which I am glad but then it puts us back at square 1 again.. Do you see Dr. Vanderver at DC Children's Hospital she is the neurologist that her main focus in the white matter. I live in the Northern VA area and If you ever wanted to get together to talk that would be great. I have never met anyone in my area that their child can relate to my Brianna and I would love to talk about it to someone who could relate to me...

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Hi, Deb, Thankyou for your kind words of encouragement, I am sorry to hear of the loss of your prescious Dane, (what a beautiful name).
Yesterday I took JohnPaul to his neurologist and she did tell me it is SALLA Leukodystrophy...
So now he has a name ...I feel for all of us who struggle with this , but I do know that God put these precious children in our lives for a reason, and I will be honest with you JohnPaul has taught me so much, and he is only 10, So in all reality we are the special parents to even get a chance to spend (any time) with our little angels.. That is the Blessing...I Thank You again for all of your support....I will keep in close touch with you and my prayers go to you and your family...God is Good!!!!!!!!!!!
Amy
JohnPauls mom

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Hi, My name is Amy, I am JohnPauls mom, I just read your post and can't believe you have the same Dr... I love her.. she is so brilliant...
I would love to get together any time. I live in Rockville Md, I just went and saw her yesterday in the Frederick office.... We also did a study at NIH last year for her for the Leukodystrophy.... you can get in touch with me anytime to talk and we need to get together ...
God Bless you and your little Brianna..
Amy

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Dear Amy,

Thanks so much for responding and feeling for us. I think you are right about these special people with any kind of leukodystrophy, there are incredibly special and wonderful to be with, although it can also be really hard.
I feel like it is also true that it makes us better parents, strong, loving and accepting.
I am glad that you and Brianna's mom have found each other, what wonderful support for each other! When Dane was little no one had even really ever even heard of leukodystrophy.
Like Brianna's mom Dane's tests always came back normal as he got sicker and sicker....so, having a diagnosis, while hard, is a little easier than nothing, but the mystery is still there. Why are our kids sick?
Anyway, I am holding all of you in my thoughts.

Love,
Deb

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I am so glad to be able to chat with you all (Thank God for the Computer) because I would feel so alone because their is no one in my area that I found that can relate... I am alway here for anybody to talk to and Amy I hope one day we can meet up. My schedule is open!!

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Sorry you haven't heard from me lately, i just moved, and me and my husband seperated as well, so more stress to deal with...But I have to be strong..please keep in touch
As soon as I am settled i would love to meet you and your little angel...

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My name is Melissa. I have a 3 yr. old son who after 8 mo. of testing has just recently (Nov. 20) been diagnosed with Vanishing White Matter Disease (Childhood ataxia with diffuse central nervous system hypomyelination, or CACH). Anyone who has any information on this disease or information about a ?Dr. Nadoo? at John's Hopkin's Hospital in Maryland would be greatly appreciated. I just recently subscribed Inspire. Please help!!

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Hi, Melissa, I am too new to this site, it has been awsome ....and makes you feel not alone, if you know what i mean...I do not know the DR. you are refering too, but I can recommend a fantastic DR.. one who I trust with my life, she is just amazing..Her name is Dr. Vanderver and she is JohnPauls neurologist and she works at Childrens Hospital In DC... If you need her phone number I can give it to you...I think that is beautiful that you have found your strength in God, my faith is the only thing that has helped me get through all of this with my son...I am proud of you for your recovery too...I once used and it is such a better life now I tell you....Just being there for my children and feeling Gods uncondional love is the best HIGH ever....Please feel free to get in touch when ever you need a friend and I will be praying for your little angel, and your family...
IN HIS LOVE
amelia
JohnPauls mom

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Amelia,
Thank you so much for replying to my message. I need as much support as I can get at this time. Also someone to talk to. My son's Neurologist at Nationwide Children's in Colombus Dr. Zamel & Donna Kring NP has been wonderful. They were so determined to find the cause of my son's illness, for that I am so grateful. They have contacted John's Hopkins Hospital in (I think) Maryland and have been cooresponding with them about my little guy. They called to get him an appointment there only to find out that they dont except my son's insurance (Ohio Medicaid for disability) and are now trying to contact Social Services to see if they could help pay all or part of the $750.00 visit. His walker was also not covered by his insurance. We are still waiting to see if we were approved for ?B.C.M.H? thru his doctors office. It is supposed to cover anything his Medicaid does not. I have not been blessed with alot of money and do what I can to get by. I cannot work due to my son being 24 hour care. His father works very hard at Vinyl Kraft (they make windows) for minimum wage. Where I live this is considered to be a very good place to work. The town I live in is full of poverty due to no jobs. It has not been easy. Listen to me I am just rambling. I am meeting with a reporter for our local newspaper on friday, and I am thinking about contacting the local news about a story also. Is this a good idea? When my son was diagnosed I was immediatly determined to educate the community about this awful disease. I was supprised at how many people I have talked with that knew nothing about VWM/CACH, even his doctors knew very little about this. WOW!! Whats your thoughts?
Forever grateful,
Melissa

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Melissa -

I am so sorry to hear about your son. A little advice on Medicaid, pick up the phone and call them. If they don't respond to you the first time with what you want then just keep calling. My mom had cancer and was on Medicaid the doctors kept calling them and it did no good. After my mom called them she got all of her treatments paid for in full. She got the best doctor in the world who is located in Boston, MA. Medicaid even paid for an ambulance to take her to her doctors appts. We live about an hour and a half away from there. So it's the squeeky wheel. Good luck with Medicaid and keep us informed on how you and your son are doing. We will be praying for you.
Warm wishes,

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britt_carrier,
thank you for your advice about my sons insurance. The only thing that we have had problems with them paying for is his walker, (still dont have it). The doctors that his neurologist want to send him to is the ones who dont accept his insurance. I know that it will all work out with lots of prayer.
-Melissa

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Please know that they say they do not but contact someone else at KKI. My nephew had ALD and went to KKI and he had medicaid and my sister really had to be on the phone everyday until they agreed to take her insurance. He went to KKI then to MN for a bone marrow and he was on medicaid. You are not the first person that I heard that this has happened to. You cannot grow money outside on a tree so what are you supposed to do to get care for your son? I know that you are not the first to go through this so if anyone else on the forum sees this and has been through this can you please offer some advice for financial for Melissa and her son.

I just think that you shouldn't have to worry about financial stuff when you have to worry about knowing that you have done all you can do for your child.
What state do you live in. I know where I live I can get a lot of my handicap needs taken care of by donation. We have a place where you can go to get wheelchairs and stuff that were donated.

You can email me directly if you want to talk more.
a.l.d.me@hotmail.com

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Hi cjackson,
My son is 3 yrs old and has recently been diagnosed with Vanishing White Matter Disease or CACH/VWM. This is a rare form of Leukodystrophy, which there is no cure. Like your daughter he has been through a big load of testing and everything has came back normal. His MRI's were the clue to his diagnosis. This all started in March, they did an MRI and it showed that some of his white matter was gone. Then they did another MRI in Oct. and it showed that there was a signifigant loss of more white matter in both hemispheres of the brain. Since he has been sick he has lost his ability to walk, his speech & motor skills have haulted, but he is still very smart. He refused to give up! If you want to talk more just add me as a friend and we will talk!
Praying Always,
-Missy

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