some questions

[HeatherHayes]

my son is 2 1/2 yrs old and was once able to cruise around furniture and crawl but all that came to a sudden stop when he was 15 months. he is currently in physical therapy as well as occupational therapy and early intervention. He was hospitalized due to losing more deveopmental milestones so they put a feeding tube in and did all kinds of blodd test for metabolic syndrome but that came back negative. he is very floppy and has no control of head control and has no muscle.. what does anybody thinki?

 

[Ms. Pie]

I'm sorry he's not well! Poor little one! What do his doctors say they think is the problem?

 

[ottawa girl]

That is really really sad. I can imagine what you are going through.

I know you are likely desperately seeking answers, but I honestly do not think you will find them here. This forum is for motor neuron disease, mainly ALS. The kind of disease which typically begins in older adults.

On a personal note, my great nephew is 2 and just started walking. (Sort of) He is also far behind, but has made significant gains with the Physio, Speech and Occupational therapies he receives weekly. His head no longer bobs, except if he's really tired. His gross motor skills need improvement, but we notice positive changes every time we see him. The recent addition of small orthotics has helped with the walking. The doctors had initially diagnosed hypotonia, but have recently dismissed it. We are in the dark as to a specific diagnosis. This despite testing of all kinds including extensive genetic testing. Our little guy also suffers from mild febrile seizures quite often as well, but he does not appear to be any worse for wear after these episodes. We hope he will outgrow those.

I hope your baby recovers soon.

 

[kiara]

I'm so sorry for you and your son, I can imagine how hard is being in this situation. I'm sure that so young children can't contract als but I know there is one type of motor neuron disease that can affect children and infants, it's called SMA. There are also a lot of metabolic diseases that cause muscles weakness in children. Let the doctors do their job I'm sure they will be able to find what is wrong with your son. Keep us updated about how he's going. hugs