just got back from the drs office

frankiesmom said:
oh yay! he wont need a feeding tube..he does need this vile stuff called peptamen jr..it smells like something ungodly, but he will drink it..he is going to see a GI specialist after all. i got the doctors report from the developmental pediatrician..it says moderate to severe developmental delay, very severe cognitive delay and neurologically involved..what that last bit means, i don't know..so at least we know somewhat of whats going on ! i did..but i truly hoped i was just being an overly worried mom..but oh well. hes happy, im happy. he sees his audiologist this friday to see how hes doing with his hearing aids..thanks for the suggestion of getting oto-ease..he enjoys that! i had to order it online though, i couldnt find it anywhere..even the drug store!
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Neurological involvement is also the nervous system and things like the head tilt, crossed eyes, deafness, falling over , from involvement of the cranial nerves specifically.
 
they referred us back to a neurologist...and i have no idea what else they will do..i know nothing about neurology except they read his mri. but you know what, i bet that is why she said that. thanks!
 
and PLEASE forgive my million and one posts about my little one..i am just trying to learn as much as possible :D
 
frankiesmom said:
they referred us back to a neurologist...and i have no idea what else they will do..i know nothing about neurology except they read his mri. but you know what, i bet that is why she said that. thanks!
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frankiesmom said:
and PLEASE forgive my million and one posts about my little one..i am just trying to learn as much as possible :D
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Hey, no one is complaining! Where else could you go and find someone who has problems with the cranial nerves to instantly recognize the cause of those symptoms?
 
frankiesmom said:
and PLEASE forgive my million and one posts about my little one..i am just trying to learn as much as possible :D
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Never, ever apologize about posting about your little guy! We are all very interested in his progress and his setbacks, and it is a priviledge that you have chosen to share him with us. We are happy that we can be available to support you.:grouphug:
 
well, we had frankies evaluation for ssi today..i applied back when i found all of this out..not so much because of the hearing loss, but for everything else. he couldnt even finish the testing..he did 1 part of it and he failed 9 out of 10 tasks on just that 1 part.. i felt so bad for him..she did too..she said she was very concerned and then asked how we were doing..i thought it was odd..usually those doctors are supposed to be suspicious, and she was when we first got there, because of how big he is..but she gave up after he wouldnt even pick up a block. i guess im glad he will get ssi, because he qualifies for our state disabled program which will pay for this expensive formula he was put on yesterday..but still...i wish he just had the hearing loss!! that wouldnt even be an issue really! *it would, but not a disabling issue*
 
frankiesmom said:
well, we had frankies evaluation for ssi today..i applied back when i found all of this out..not so much because of the hearing loss, but for everything else. he couldnt even finish the testing..he did 1 part of it and he failed 9 out of 10 tasks on just that 1 part.. i felt so bad for him..she did too..she said she was very concerned and then asked how we were doing..i thought it was odd..usually those doctors are supposed to be suspicious, and she was when we first got there, because of how big he is..but she gave up after he wouldnt even pick up a block. i guess im glad he will get ssi, because he qualifies for our state disabled program which will pay for this expensive formula he was put on yesterday..but still...i wish he just had the hearing loss!! that wouldnt even be an issue really! *it would, but not a disabling issue*
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You and Frankie have so much going on as it is, the last thing you need to worry about is the expense of special formula, fees for specialists, EI expenses, etc. This is the reason SSI is there. Frankie is one of the most deserving children of this benefit that I know of.
 
thanks! this formula is outrageously priced..200 dollars for a case of 24 8 oz cans! hes supposed to have 5 a day too..luckily, the dietitian gave us a weeks supply and faxed the wic office for us. i had no idea they would even pay for it! but he likes it..it smells awful but hes drinking it at least. obviously, he still hasnt picked up any sign language, and most likely wont for a long time, if ever..BUT..the hearing aids have made his life so much better..he can hear music, and he can hear his toys..so yes, hes missing out on the communication right now..and thats lousy..but at least he has some enrichment going on. we bought him a cute baby mobile that shines pictures on the ceiling and plays music..and he could hear it! he was so content last night, laying there,listening to "an irish lullaby" and watching his teddy bears and bumble bees dancing on the ceiling.
 
frankiesmom said:
thanks! this formula is outrageously priced..200 dollars for a case of 24 8 oz cans! hes supposed to have 5 a day too..luckily, the dietitian gave us a weeks supply and faxed the wic office for us. i had no idea they would even pay for it! but he likes it..it smells awful but hes drinking it at least. obviously, he still hasnt picked up any sign language, and most likely wont for a long time, if ever..BUT..the hearing aids have made his life so much better..he can hear music, and he can hear his toys..so yes, hes missing out on the communication right now..and thats lousy..but at least he has some enrichment going on. we bought him a cute baby mobile that shines pictures on the ceiling and plays music..and he could hear it! he was so content last night, laying there,listening to "an irish lullaby" and watching his teddy bears and bumble bees dancing on the ceiling.
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Good to hear that the formula is agreeing with him. I know that takes a load off of your mind. Just keep that enrichment going. You may not see results immediately, but you will see results eventually. Give that baby boy a hug for me!
 
oh im seeing some..he loves hearing himself make noise..even when we take his hearing aids off, he seems more in tune with things. we see his audiologist tomorrow and i will be happy to tell her that they are working out for him!
 
frankiesmom said:
oh im seeing some..he loves hearing himself make noise..even when we take his hearing aids off, he seems more in tune with things. we see his audiologist tomorrow and i will be happy to tell her that they are working out for him!
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Yeppers! He is connecting with his world. Wonderful to watch a child do that!
 
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Glad to hear that Frankie is making progress.
 
frankiesmom said:
oh yay! he wont need a feeding tube..he does need this vile stuff called peptamen jr..it smells like something ungodly, but he will drink it..he is going to see a GI specialist after all. i got the doctors report from the developmental pediatrician..it says moderate to severe developmental delay, very severe cognitive delay and neurologically involved..what that last bit means, i don't know..so at least we know somewhat of whats going on ! i did..but i truly hoped i was just being an overly worried mom..but oh well. hes happy, im happy. he sees his audiologist this friday to see how hes doing with his hearing aids..thanks for the suggestion of getting oto-ease..he enjoys that! i had to order it online though, i couldnt find it anywhere..even the drug store!
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I do have to say that it might be a little too early to tell how affected he will be. I know a lot of parents of kids with various and sundry developmental delays. A lot of them will tell you that the docs all told them that their kid would never do this or that. In some cases (like with profound intellectucal issues) that has been true, but I do think your son may really surprise the doctors and experts. I do think that his response to hearing aids has been awesome.....and hopefully it may stimulate some more development. I think when skills are really scattered, it can be hard to tell how well a kid functions.
Did you contact UCP or Easter Seals or the ARC? Those are great organizations for cases like your son.....and you know what...still push ASL. Virtually all kids with developmental issues (including mild) tend to have severe spoken language issues. Remember, go full toolbox, and hunt down every and any available resource.
 
there isnt an easter seals where i live..i was going to contact them! and we are still going to take our sign language classes and try to communicate with him..i think he will learn eventually!
frankie had a rough weekend..he completely stopped eating/drinking..he had to get an iv for fluids but hes feeling much better now..we also gave him *this is gross* a baby enema that the dr recommended and that helped a lot..that pediasure was too much for him i think!
i have contacted the local deaf community agency thing and no one has called me back..every time i call, the lady i need to talk to is either busy or not there..i might just drop in some time..i know they have to be horribly busy!
 
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Poor little guy! Hope he feels better soon.
 
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