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Raising Special Needs Kids Raising Special Needs Kids

Hi I am new to the group!:)

Posted by on Mar. 31, 2014 at 8:34 AM
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Hi everyone my name is Shaelyn I am a SAHM to a beautiful 17m old boy named Jasper. I am here for advice and support. Jasper is milestone delayed with mild low body muscle tone,aprexia, and he has an eye issue that he always tends to look out the outsides of his eyes first and then turns his head to focus the Neuro Ophthalmologist just calls it a visual disturbance. There has not been a real diagnosis and that is very frustrating! My son didn't roll over until 7m didn't sit until 9m didn't crawl until 12m he is 17m and can cruise on furniture but can not walk or stand without assistance. We see our new 2nd opinion for ophthalmologist in May and neurologist in June and I am hoping for some answers. Have anyone you seen similar symtoms ? They are all pretty mild but effect his development. We are doin PT,ST,& VT please help!:) PT suggested mild Cerebral Palsy thoughts?
by on Mar. 31, 2014 at 8:34 AM
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jjamom
by Michele on Mar. 31, 2014 at 8:45 AM
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Welcome to the group! I hope you get some answers from the new opthamalogist and neurologist.

My son has low muscle tone (delayed milestones as well) and a speech disorder. His eyes are fine (slightly nearsighted, so glasses in his future, but not yet). My son has Down syndrome. I am not real familiar with CP, but there are some moms here who are. Hopefully they can help.
Irislady17
by Bronze Member on Mar. 31, 2014 at 9:53 AM
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Welcome to the group! Your little guys symptoms sound very similar to ours. My son also has oral apraxia, low tone, and cp. So you are definitely not alone here.
sunflower37
by Member on Mar. 31, 2014 at 9:54 AM
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N.Carter2001
by Silver Member on Mar. 31, 2014 at 9:54 AM
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Welcome to the group. My name is Nicole.And im a mom of 2 boys and i have cerebral palsy. I know it took me a very long time to crawl,roll over, walk. When i did start to walk i was on my toes. Now a days people say they cant tell i have cp. I was slow learning growing up. Doctors said i would never wright,read,drive ect. Im doing most everything on my own. Or it just takes me longer to do stuff that is hard for me.I even got my learners permit.Sorry im not much help. Does he walk on his toes when he hanging onto stuff ?  

dawncs
by Dawn on Mar. 31, 2014 at 10:15 AM

 Welcome to the group! I know from my own personal experiences how frustrating it is to get answers. Some of my own symptoms of my chronic medical condition do not fit the norms for that diagnosis either. Good luck!

s_toman7
by New Member on Mar. 31, 2014 at 11:00 AM


Quoting N.Carter2001:

Welcome to the group. My name is Nicole.And im a mom of 2 boys and i have cerebral palsy. I know it took me a very long time to crawl,roll over, walk. When i did start to walk i was on my toes. Now a days people say they cant tell i have cp. I was slow learning growing up. Doctors said i would never wright,read,drive ect. Im doing most everything on my own. Or it just takes me longer to do stuff that is hard for me.I even got my learners permit.Sorry im not much help. Does he walk on his toes when he hanging onto stuff ?  

Thank you all!! And    N.Carter2001 he does some weight shifting on his feet. It's reall hard to get him to walk holding my hands he either picks his feet up and wont stand or he will take 4-5 good flat foot steps then he try's to walk on the knuckles of his toes and the puts one leg in front of the other off balance if that makes any scenes to you lol. The only thing that makes me happy is there isn't anything more I can do with therapy we are doing everything that would help. It's like no doctor can stay on the same page ophthalmology says he has everything to see but there is nothing more I can do then we go to neurology and he say I'm most concerned he doesn't talk it's so annoying! I wasn't satisfied with those answers so we are waiting for a neuro appt at Miami childrens hospital. Nobody knows what his eye tracking thing is and nobody even wants to give any idea what is going on over all.

jjamom
by Michele on Mar. 31, 2014 at 11:35 AM
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I think taking him to a Children's hospital (as you have planned) will be the best way to get your questions and concerns answered. They have nearly every specialty and can refer you as needed and also run any if the tests they feel are needed. In addition, they see the most complicated cases, so unless it is something very rare, chances are they have seen it before. There is also the chance that the symptoms are unrelated to each other, but I bet they'll still be able to dx and get you all headed on the right track. Good luck!

Quoting s_toman7:

Quoting N.Carter2001:

Welcome to the group. My name is Nicole.And im a mom of 2 boys and i have cerebral palsy. I know it took me a very long time to crawl,roll over, walk. When i did start to walk i was on my toes. Now a days people say they cant tell i have cp. I was slow learning growing up. Doctors said i would never wright,read,drive ect. Im doing most everything on my own. Or it just takes me longer to do stuff that is hard for me.I even got my learners permit.Sorry im not much help. Does he walk on his toes when he hanging onto stuff ?  

Thank you all!! And    N.Carter2001 he does some weight shifting on his feet. It's reall hard to get him to walk holding my hands he either picks his feet up and wont stand or he will take 4-5 good flat foot steps then he try's to walk on the knuckles of his toes and the puts one leg in front of the other off balance if that makes any scenes to you lol. The only thing that makes me happy is there isn't anything more I can do with therapy we are doing everything that would help. It's like no doctor can stay on the same page ophthalmology says he has everything to see but there is nothing more I can do then we go to neurology and he say I'm most concerned he doesn't talk it's so annoying! I wasn't satisfied with those answers so we are waiting for a neuro appt at Miami childrens hospital. Nobody knows what his eye tracking thing is and nobody even wants to give any idea what is going on over all.

raysma07
by Bronze Member on Mar. 31, 2014 at 11:53 AM
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Welcome!

mandee1503
by Amanda on Mar. 31, 2014 at 2:00 PM
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Welcome to the group!
DW030714
by Member on Mar. 31, 2014 at 2:32 PM
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When our son was around 20 mos old his therapy team (PT and two OT) suggested we see a neurologist to get diagnosed with CP. Basically, CP is a blanket term for a brain injury that happened in utero, at birth, or just after birth. The neurologist will examine the medical records and order an MRI to see if there is brain damage. Your son sounds similar to my son, minus the vision problems. We had help in our area through Early Childhood intervention. If you don't already have them helping you, find one in your area. Good luck!

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