Recent content by jodeeszakacs

Wright, thanks for your extremely quick response! I am not feeling much peace of mind. However, in all of my hospital visits, no one has ever given me the information in terms I could understand as you have just done. I am not an unintellegent person, but I feel quite the opposite when I am...

Please Read, I Need Help We just came back from our neuro appointment. It looks like Joey has something that is too rare for our pediatric neurologist to diagnosis. The probable diagnosis Johns Hopkins is a rare motor neuron disorder, but he is only 8! The neuro is sending us to Cleveland...

I am interested in this thread. My 8 year old son (you can read "Can a child have ALS") has been clearing his throat constantly in the past month. I am literally saying about every 20 seconds. He sometimes even has a gag reflex that seems to accompany his clearing. I thought it was a new...

Thanks for your response. My son's first probable diagnosis was Fredreichs Ataxia. That was one of his first genetic tests. This came back negative. He has had more than 10 diagnostic tests. The only tests that show significant abnormality were his nerve conduction and the other test (I...

Thank you so much for your support. My son isn't doing very well, and he is VERY angry. He is one of five children, and he sees he is losing out on many things (food, outdoor playtime, school, etc.). He wasn't a product of drug abuse that we know of, but we weren't given lots on information...

My son only toe walked when he was first adopted three years ago. Now he can barely walk and definitely can not stand alone on his left leg. At least there is a shread of hope in what you said. Thanks!

Thanks for your support! It was Johns Hopkins that told me my son had a rare neuromuscular disease. That is what worries me the most. I am concerned that "the best" can't be wrong.

Okay, I hope I don't ramble, but I need some help. I have an adopted 8 year old boy who has, in the past two years, been seen by many physicians for muscle weakness, toe walking, and slurred speech. These conditions have gotten so much worse in the past year. He has seen numerous neurogists for...

Okay, I hope I don't ramble, but I need some help. I have an adopted 8 year old boy who has, in the past two years, been seen by many physicians for muscle weakness, toe walking, and slurred speech. These conditions have gotten so much worse in the past year. He has seen numerous neurogists...

I have an 8 year old with the same issues. We have also been awaiting a diagnosis for a couple of years now. I have taken him to Johns Hopkins also where I was told that it was most likely a VERY rare form of ALS. I was told there is no treatment and no cure so not to dwell on the "name" of...

I am sorry to hear about your husband. I also have an 8 year old boy. He is the one with the ALS. It is very terrible no matter what the age. I want you to know that I will pray for you, your boys, and your husband. I have learned to lean on Him, and He will strengthen us! Take care