Mri - Bardstown,KY

I say it shows that you have a good doctor who wants to have a second pair of eyes take a look and make sure he is right/ or wrong. There are doctors out there that once a parent states they would like a second opinion they get defensive.

I would try to take a deep breath. Take each day one at a time and don't make yourself sick with the "What ifs". Try to keep busy and focus on your precious babe. You need to stay strong. It's ok to have your moments just don't allow them to overcome you. It's great to be educated, but do not go crazy researching everything to death.

I'm not a doctor but, I had a son who it took years to get him diagnosed with profound hearing loss. There are many syndromes associated with hearing loss and genetics can also play a role. It took about 3.5 years from the time he was born with therapies as well as testing and specialist visits to finally get that sigh of relief. I just took it one day at a time. I tried to network with other families which wasn't easy but a great support.

I wish you and your family good luck, keep us posted.

I think it's always good to have a second opinion when there's something potentially serious at stake. Get a referral for a second opinion from your pediatrician (this may also be necessary for insurance). I'm wishing you and your little guy the best of luck!

Speaking from experience I say get a second opinion. My daughter had her first MRI at 10 months, her second MRI at almost 3 years old, and another a year later. The first MRI was clear. The second MRI we were told was clear but after seeing the same doctor months later he decided to "relook" at the previous MRI and as he suspected he found something he had missed the first time looking at it. What he missed was what is causing all of our daughters problems, atrophy of the cerebellar vermis. I would recommend a second look. As my experience shows, even good doctors can miss things...even big things.

The pediatrician is being diligent. The PVL would make sense and he/she is wanting to be very sure if it exists, is not being missed. It is better to deal with knowns than unknowns.

Your son is improving so it likely is not the PVL. At least, cling to that for now. I know how even waiting for doctors to say what something is NOT can be agonizing.

You ask what to do. Go get the second opinion, but with optimism and confidence that the hypotonia is idiopathic and your baby will continue to improve in spite of the doctors not knowing what caused it. Or maybe they will know and it won't matter because your baby will still continue to improve.

Remember, sometimes a more definitive diagnosis does not in any way change the prognosis - it does not change who your child is nor what the outcome will be because he is neither a diagnosis nor a prognosis.

You have my hugs and blessings.

I have two children with hypotonia and sensory integration disorder. We have never been sent for a MRI, though. My two are almost 3 and 5. They've been getting therapy since around 6 mo. It's a lot of work and can be very frustrating. But, I can tell you, it does get better. It turns out that it is heredity. They got it from my husband and you'd never know he has it, he must remembers having to work harder at things growing up. But, he played football in high school and college. So, hang in there!

I'm not a doctor. I don't have experience with hypotonia.

Find doctors that are skilled and well-versed in Hypotonia and take your son there. Find universities that are doing cutting edge therapy - take your son there. CALL around. Don't take NO for an answer.

There are schools (universities) out there that help families. Find a support group and start talking to the other parents and find out who they have went to. IF there isn't a support group out there - create one!! Get on Facebook and create a page. Get on Twitter and get the word out!! Just like yesterday - there was a mom on here who has a friend that works at a reknowned doctors office to help her with her baby's heart.

TALK!! ASK!!! Go to your hospital and ask questions about Hypotonia. Find out WHO is doing work on it.

I don't have an answer for you but will pray for your baby, you and your family. *hugs*