Did anybody ever heard of this diagnoses for someone so little and what is outcome??

Please, very worry!
Grandma and grandpa...

With love and best wishe,
Moldova

It's very serious. The outcome of every case of pediatric cancer is different, so you need to keep an open dialog with your grandbaby's doctor to understand how this will be treated. Is the baby at one of the cancer treatment hospitals?

I'll keep you in my prayers.

I'll pray for your grandchild as well.

Yes, it is very, very serious. But I will tell you this, the younger the child at diagnosis, the better the chances. My nephew was diagnosed with Neuroblastoma at 10 weeks old, just slightly younger than your grandchild. (it was discovered after he had his first set of immunization shots) He had a large tumor the size of a grapefruit in his abdomen, one on his head, one behind each eye, it was in his blood and bones. He was Stage IV sub B.... as bad as it gets. He was given a 20% chance of survival. I am thrilled to say that Zachary is now 20 years old and is planning his wedding for next summer.

His oncologist at Hershey Medical Center in PA was very aggressive with his treatment. I know he consulted with an expert from another hospital who looked at my nephew's records and told his doctor to stop all treatments because the chemo would start to damage other organs. She suggested experimental treatment (we interpreted that as, "keep him comfortable until he dies") His oncologist said he couldn't stop and thankfully, he didn't. It was a long road...chemo, surgery, more chemo, but he was declared in remission at about 18 months old and has been cancer free ever since.

I met a little girl last year who also had Neuroblastoma. She was also an infant and she was able to just have surgery, no chemo. She is now 6 years old. I have read about other children diagnosed at 4, 8, etc and sadly, they have passed away. So I do know this but not sure why, they have better chances when they are diagnosed in infancy. Again, it is still very, very serious and as a previous poster said, keep that open dialogue with the oncologist. And most importantly, pray. I truly believe that is why my nephew is alive today. Stage IV is as far as it goes and he is alive today because we prayed and my sister never treated him like he was sick. She had such a positive attitude and we all believe was so instrumental in his recovery.

Please keep us posted. I will pray for you.

Thank you so much for your responds! I am so sorry to hear sad stories when it comes to kids, makes it even worse.

Well, baby's CT of his abdomen was negative, but his Neurologis diagnosed him today with MYOCLONUS condition. When I read on Internet about this disease and how life long fight this may be - we are devastated. At first we were so happy his CT was OK, but now this.

He will have to have MRI of his brain, a lots of blood work, etc.
We all just in tears: why little baby has to suffer like this and innocent little smiling face doesn't even know what he has to go through.

Anybody heard about this condition?
Thank you so much for letting me to vent and thank you for listening.

All the best to you and your kids!:angel:

Hi there-just wanted to say what great news it is that the CT was clear, but yes, you are right...it sounds like the struggle for answers is far from over for your family. This past year my family has been through a neuroblastoma diagnosis with my son Connor (age 15 months when symptoms began) I would suggest you get every test available done-to begin the process of ruling out different conditions...the doctors have a much easier time diagnosing once they begin to eliminate other things...for example, has your grandbaby had an EEG to test for seizure activity? He probably has-I just was wondering for sure?
The reason I ask is because when Connor was first showing symptoms he was doing exactly what your grandson is doing (head jerks and later leg jerks) First they thought he was having seizures, then when all those tests were coming back good, the neurologist suggested it might be Opsoclonus Myoclonus Syndrome (OMS) associated with neuroblastoma tumors. His tumor was in his pelvis and the cancer is doing great (he was stage one as are most kids with OMS) but the OMS effects brain development and he is really struggling there...he is two now and can't say a single word. I encourage you and your family to fight for him, and YES-he could still have OMS-even with NO tumor! There are viral causes as well, and if other conditions are ruled out, and he is still experiencing these jerks-I would question the doctors about viral infections that could have induced OMS. Good Luck!
Debbie