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Infant Leukodystrophy

Halls
0 Recommendations

Hi everyone,

My daughter is 6 months old and two weeks ago an MRI showed that she has the amount of myelin that a 2-3 month old would have. We don't know yet if it is demyelination or hypomyelination. We also do not have a diagnosis yet but the tests are being sent out.

She has severe reflux, sleep apnea, poor head and spine control. Her communication is just where it should be for 6 months. What I'm wondering is do any of you have an infant this young with Leukodystrophy? How long have they survived? How much myelination did your child gain before it stopped?

Any personal experiences with this disorder would be helpful. Thank you for any insight you can give.

Explore topics in this discussion:

Sleep apnea Leukodystrophy

6 replies

cavallino

Hi Halls,

I am so sorry to hear about your daughter. Our son was diagnosed with the same day that you wrote your post one day after his first brithday. We are currently going through lengthy diagnosic tests and genetic testing to confirm the exact type of disorder. Our son showed motor function deterioration only 3 weeks ago and is now unable to stand or cruise and struggles to crawl. His neck control is weak leaning back to the left and his legs are always straight and stiff. I have been stunned at how quickly these changes have occured. He also seems to be very grumpy for no reason and his sleep patterns have also been disturbed. We are in the same position as you not knowing if myelination ever occured or if it regressed. I would love to chat in further detail - can e connect in private? Happy to email or call.

TaSad

Halls and Cavallino,
I'm so sorry to hear of your daughter and son. I had a similar experience with my daughter who's MRI at 6 months showed severe white matter abnormality. They did a plethura of bloodwork, all of which came back negative. The MRI was sent to JHU and Dr.Naidu's team thinks it is MLC. They just said the myelin should be there more than it is so she is having a problem creating the myelin. Would love to speak with you further about your children's diagnosis. I'll friend request you each and hopefully we can speak further via email/phone,etc...

cjackson

Hello I am sorry to hear what you are going through, but I can relate!!! My daughter who is 2 1/2 yrs old will be having her 5th MRI done next Friday to check the white matter..She had her 1st one when she was a month old that showed way underdeveloped white matter, so they did another one when she was 2 months old that was about the same and they did a muscle biopsy and alot of blood work that all came back normal. She had her 3rd MRI when she was 8 months old and the white matter had developed just a little and the same thing when she had her 4th MRI. She has had so much blood taken for so many test and we are happy that they come back normal but then that puts us back at square 1. She is unable to take anything by mouth so she has a gtube but she still is like a newborn she is unable to walk, crawl, sit up, and talk. She is such a fighter especially since the dr's said she might not make it a year, and now she will be starting in school in September with the head start program. We see Dr. Naidu @ Kennedy Krieger, and Dr. Vanderver @ DC Children's who runs the white matter clinic. My best advice would be to stay positive, don't worry when you read stuff online because you can freak yourself out, and don't be afraid to ask your doctors question!!!

Halls

Thanks for your comments! They are all so helpful. My husband and I felt alone in this battle until we found this site where there are so many others in the same situation. I wish each of you the best with your children. It's so hard to see our precious little ones battling this disease.

TaSad

Hi:) Just checking in. Were the doctors able to tell you which exact leukodystrophy your daughter has? Also, you mentioned she eats through tube and can't talk, sit or walk.Was she ever able to do those things at any point?
Thinking about you guys and hope you are doing well

Halls

Hi TaSad,

Thanks for checking in. I'm not sure it you were referring to me or cjackson. My daughter is doing well, She is making small gains which is a good sign. She actually does eat baby food and bottle feed. She also smiles and babbles but she doesn't walk, crawl, or sit up. We had a genetics appointment yesterday that was kind of disheartening. The doctor said there's not much more he can test for and he also was glad to see she's made gains but told me not to expect much more. My husband was very positive and said that the doctors also didn't expect her to be able to eat and make any of the gains she has. So we are just waiting until next summer to do another MRI and see if there's more myelination. How about your little guy? What's new with him? Thanks again, we'll be thinking about you guys.

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