Brainstem Implant

deafdyke said:
Well I AM definitly gonna be there since my mom's hosting it! REALLY looking forward to this one, since it's at Disneyland!
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Wish I could be there to meet you. :D
 
When I said "accept the way he is.." I was not saying that you don't accept his handicaps but more of why not let him be himself.. don't try too hard to "fix' him - biology has its limits and it takes a lot of mental work to make something happen. I know you mean good intentions for your son and I don't question that at all but personally, I would rather let a mentally-physically disabled person be happy and maximize their potential mentally than to implant them with an implant that may serve no useful purpose.

Also, when you said he has a history of infection, i would be seriously concerned about the idea of putting an implant in a person with history of infection. there are children who died from CI complications due to infections in their past. I wouldn't want that happen to your son. Implants form a biofilm and if its infected with harmful bacterias, they have to be removed and that can complicate even more.

I just want you to think about it. Seriously. I saw a picture of your son and he looks so lovely. Personally, i wouldn't do that. You may not like me for my opinion but just please understand that i just wouldn't want to put a child through that kind of risk, especially with an implant that's not so common and with a history of infection.
 
was not saying that you don't accept his handicaps but more of why not let him be himself.. don't try too hard to "fix' him - biology has its limits and it takes a lot of mental work to make something happen. I know you mean good intentions for your son and I don't question that at all but personally, I would rather let a mentally-physically disabled person be happy and maximize their potential mentally than to implant them with an implant that may serve no useful purpose.
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Netrox, I know your intentions are good.....and what you said is something to think about......(and for ALL kids, not just special needs kids) But, the potential IS there. I mean I could understand not implanting if the person was medically fragile (like trach, heart probs, seizures etc) or if they were so profoundly mentally effected that they didn't even know who their parents were. I mean Cejow's son says some words (and that's really good b/c a lot of kids with chromo 18 syndromes have significent apraxia) and understands some Signing.....the potentional is there to open another door.
Yes, there's the issue with parents turning their special needs kids into a version of little Charlie from "Flowers for Algernon" but you know.....even parents of kids without special needs can go overboard. I think what parents need to understand and accept is that a) their kids are their OWN person and b) all kids are blank slates for which everything is possible, but nothing is promised!
 
deafdyke said:
Netrox, I know your intentions are good.....and what you said is something to think about......(and for ALL kids, not just special needs kids) But, the potential IS there. I mean I could understand not implanting if the person was medically fragile (like trach, heart probs, seizures etc) or if they were so profoundly mentally effected that they didn't even know who their parents were. I mean Cejow's son says some words (and that's really good b/c a lot of kids with chromo 18 syndromes have significent apraxia) and understands some Signing.....the potentional is there to open another door.
Yes, there's the issue with parents turning their special needs kids into a version of little Charlie from "Flowers for Algernon" but you know.....even parents of kids without special needs can go overboard. I think what parents need to understand and accept is that a) their kids are their OWN person and b) all kids are blank slates for which everything is possible, but nothing is promised!
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Well said Deafdyke. Cejow sounds a very committed parent who obviously does her research carefully. I don't think she would proceed with a BI if there were risks to her son's health or that there was no benefit to him. Those factors are yet to be established since obviously testing would be involved. She is obviously in the research stages and is piecing together information to see what the options are.

I hope that you aren't discouraged by the remarks on here Cejow and I am confident that you will arrive at a decision that is best for your child. I wish there were more caring parents like you - no mean feat when you have twins on your hands as well :) My sister once worked at a facility where many children with similar disabilities are just dumped for others to raise.
 
Hi, Cejow

I see your son the picture and cute kid :D.. I am curious how old your son is? :)
 
R2D2 said:
Well said Deafdyke. Cejow sounds a very committed parent who obviously does her research carefully. I don't think she would proceed with a BI if there were risks to her son's health or that there was no benefit to him. Those factors are yet to be established since obviously testing would be involved. She is obviously in the research stages and is piecing together information to see what the options are.

I hope that you aren't discouraged by the remarks on here Cejow and I am confident that you will arrive at a decision that is best for your child. I wish there were more caring parents like you - no mean feat when you have twins on your hands as well :) My sister once worked at a facility where many children with similar disabilities are just dumped for others to raise.
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I just want all the info I can for him. We are NOT going to implant him if there is a slight chance. If it is around 70% or higher it will work then my husband and I will discuss it and then as you know he has to go through all the testing first. The most I can do is ask and get all the information on everything before we go in for something like this. If it's a no go then we will continue what we are doing.
It's funny to watch him sign eat though. If he doesn't get something right away he shoves his whole fist in his mouth and screams at me and has this look like mom feed me or I will eat my hand. lol His speech therapist loves it. She says he definately knows what he wants. lol.
He understands ASL though. That was a big breakthrough!!!! I cried the rest of the day!!!! We were at Sea World and the ASL interpreter asked him if he could see the whales, he looked around her and shook his head yes!! She then told him no sign to me that you see them and he said yes!!!!!!! I almost caught it on camera but I was so excited that I ummmmmm got pictures of my feet. lol. I am really pressing for an ASL teacher for him at school. His hearing teacher and I went rounds on that. She told me he doesn't understand and won't ever understand he's too mentally retarded. His teacher at the meeting thought I was going to punch her, and jumped in and said even she had seen him understanding. Eithere way implanted or not we are going to keep up the ASL.
 
netrox said:
When I said "accept the way he is.." I was not saying that you don't accept his handicaps but more of why not let him be himself.. don't try too hard to "fix' him - biology has its limits and it takes a lot of mental work to make something happen. I know you mean good intentions for your son and I don't question that at all but personally, I would rather let a mentally-physically disabled person be happy and maximize their potential mentally than to implant them with an implant that may serve no useful purpose.

Also, when you said he has a history of infection, i would be seriously concerned about the idea of putting an implant in a person with history of infection. there are children who died from CI complications due to infections in their past. I wouldn't want that happen to your son. Implants form a biofilm and if its infected with harmful bacterias, they have to be removed and that can complicate even more.

I just want you to think about it. Seriously. I saw a picture of your son and he looks so lovely. Personally, i wouldn't do that. You may not like me for my opinion but just please understand that i just wouldn't want to put a child through that kind of risk, especially with an implant that's not so common and with a history of infection.
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The infection was that bad because he didn't have ear canals, or enough of one to really matter. There was no way to get medicine in there. With Silas's genetic condition you run into the really weird problems as his geneticist said. You will see things that are beyond comprehension to most people. I'm sure deafdyke knows what I am trying to say. If it wasn't for the research group our geneticist would still be in the dark. 18 ring isn't even in a lot of the genetics books. I just want the best for him.
 
DeafMonkey said:
Hi, Cejow

I see your son the picture and cute kid :D.. I am curious how old your son is? :)
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Thanks!!! He just turned 7 here in March. I know he is small. They are trying to figure it out. He has no parasites and his growth horomone is fine according to the lab results and all he does is eat. lol. (boys :ugh:) They are talking about growth horomone therapy. But genetics isn't done talking to research about it. So we will see. We see him again in July.
 
Cejow said:
Thanks!!! He just turned 7 here in March. I know he is small. They are trying to figure it out. He has no parasites and his growth horomone is fine according to the lab results and all he does is eat. lol. (boys :ugh:) They are talking about growth horomone therapy. But genetics isn't done talking to research about it. So we will see. We see him again in July.
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Cejow-.. I just wanted to say.. you got beauitful son! and will be praying for you and your family to make hard decisions.. just go follow by your heart.. let it guide you.. :)

Yeah same with my daughter Marsha shes almost 2, she is small for her age, Dr said she have trouble with growth horomones because her glands have cysts, it blocking her growth.. so they are waiting for her to turn 2.. will discuss what to do with her.. she is now 22 months old and stil wearing 12 months clothes.. the problem they dont want surgery or mess with glands because its important for horomones, now they are hoping that cysts go away by themselves .. so i have been massaging her neck.. it seems little bit work.. and she grew few inches.. lol..

anyway.. good luck. and hope that you will find a way for your son.. :angel:
 
Cejow said:
I just want all the info I can for him. We are NOT going to implant him if there is a slight chance. If it is around 70% or higher it will work then my husband and I will discuss it and then as you know he has to go through all the testing first. The most I can do is ask and get all the information on everything before we go in for something like this. If it's a no go then we will continue what we are doing.
It's funny to watch him sign eat though. If he doesn't get something right away he shoves his whole fist in his mouth and screams at me and has this look like mom feed me or I will eat my hand. lol His speech therapist loves it. She says he definately knows what he wants. lol.
He understands ASL though. That was a big breakthrough!!!! I cried the rest of the day!!!! We were at Sea World and the ASL interpreter asked him if he could see the whales, he looked around her and shook his head yes!! She then told him no sign to me that you see them and he said yes!!!!!!! I almost caught it on camera but I was so excited that I ummmmmm got pictures of my feet. lol. I am really pressing for an ASL teacher for him at school. His hearing teacher and I went rounds on that. She told me he doesn't understand and won't ever understand he's too mentally retarded. His teacher at the meeting thought I was going to punch her, and jumped in and said even she had seen him understanding. Eithere way implanted or not we are going to keep up the ASL.
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Ah, I see where you are coming from. More power to you!

My "ditto" to netrox was more in the lines of the risk factors of a ABI period and when you mentioned infections...oh well that concerned me. My apologies if that came across wrong. I'm sure you all will weigh all the information and factors and do the best for Silas.
 
With Silas's genetic condition you run into the really weird problems as his geneticist said. You will see things that are beyond comprehension to most people. I'm sure deafdyke knows what I am trying to say
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LOL! Boy do I! I STILL remember Dr. Eavy commenting on my ear canals.
Hey.....has your son seen an augmetive communication specialist? These are speech therapists who are trained in teaching kids who are nonverbal how to communicate using alternative methods. You might want to see if organizations like the Arc or United Cerebal Palsy can help you!
 
No we have never Aumentive communication therapist. Never even heard of one. I will ask his pediatrician next time we see her. I will check into those organizations. I am hoping to get him into special olympics here soon he's 7 now. :D Thanks for the info
 
DoofusMama said:
Cejow-.. I just wanted to say.. you got beauitful son! and will be praying for you and your family to make hard decisions.. just go follow by your heart.. let it guide you.. :)

Yeah same with my daughter Marsha shes almost 2, she is small for her age, Dr said she have trouble with growth horomones because her glands have cysts, it blocking her growth.. so they are waiting for her to turn 2.. will discuss what to do with her.. she is now 22 months old and stil wearing 12 months clothes.. the problem they dont want surgery or mess with glands because its important for horomones, now they are hoping that cysts go away by themselves .. so i have been massaging her neck.. it seems little bit work.. and she grew few inches.. lol..

anyway.. good luck. and hope that you will find a way for your son.. :angel:
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Thanks. Silas is 7 and wearing 3t clothes. I look at other 7 year olds and then it hits me how small he is. :doh: I guess I just don't see him as small I see him as my baby.
My daughter was 24 months and in 12 month clothes but she was only 2lbs when she was born. So the doctor thought that was phenominal. He used his doctor status to sneak into the SCICU (special care intensive care unit not as complicated as the NICU) to see the girls after they were born. Silas missed an appointment and the doctor called because he knew I don't miss appointments. My husband answered and said "oops sorry I forgot, the girls were born last night". So the pediatrician snuck in to see them. They were so tiny that everyone of the nurses would draw straws to see who would get to take care of them. lol
 
Oh, and I WOULD see if he could get on growth hormone! Maybe with the ABI and growth hormone it might turn out that he's NOT that MR!
I'm trying to think.......the Arc and UCP are the only nationwide orgs that I know of.....it does sound like your state's really bad with mainstream ed for kids with special needs. Do you know if there are regional programs or schools in your area?
 
deafdyke said:
Oh, and I WOULD see if he could get on growth hormone! Maybe with the ABI and growth hormone it might turn out that he's NOT that MR!
I'm trying to think.......the Arc and UCP are the only nationwide orgs that I know of.....it does sound like your state's really bad with mainstream ed for kids with special needs. Do you know if there are regional programs or schools in your area?
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Silas is in a program here at the beaches called MOVE. Really good program. The program consists of making the kids do things. Here is a link about it.
http://www.move-international.org/stories/storyReader$176
Silas wouldn't be walking if it wasn't for this program. Until we got here in Florida, no one ever worked on the walking or standing much in school or therapy because they said he never would. (silly doctors :ugh2: ) Silas didn't sit up until he was almost 2 but that was lots of work between my husband and I.
We have Florida School for the Deaf and Blind and after talking with them the reason they are hesitant on taking Silas is all his doctor needs right now. He would go down sunday evening and not be home until friday evening. If we lived closer the would go everyday and be home at night. St Augustine is just too far for my husband to drive to work everyday.
 
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:) It sounds like you really believe in your son Cejow. Keep up the good work. Thanks for sharing your experiences - I have learned something.
 
R2D2 said:
:) It sounds like you really believe in your son Cejow. Keep up the good work. Thanks for sharing your experiences - I have learned something.
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I try. As bad as it sounds someone has too. They said was profoundly mentally handicapped and it was like everyone gave up on him. They wanted to put a feeding tube in at 2 but I figured since he was drinking his formula from his bottle and even though it was a feeder bottle he was eating on his own I said NO!!!! He will learn to eat. Now that he has found his mouth there is always food in it. :rofl: I don't like taking No for an answer and until I have exhausted every means for him I can't give in. I guess that's what I get for being Irish. lol
 
They said was profoundly mentally handicapped
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He sounds more severe.....I mean he understands signs without intensive therapy?!?! That's GOOD!!!!!!!!!!! And you said he does say some words? Again that's an awesome sign!!!! Maybe if you get hooked up with an augmentive communicative specialist you could find that your son isn't as affected....and maybe growth hormone could really help him!
 
deafdyke said:
He sounds more severe.....I mean he understands signs without intensive therapy?!?! That's GOOD!!!!!!!!!!! And you said he does say some words? Again that's an awesome sign!!!! Maybe if you get hooked up with an augmentive communicative specialist you could find that your son isn't as affected....and maybe growth hormone could really help him!
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I was reading where the growth horomone may help. He does say mama and dada every now and then, used to be a lot until he got that infection. :tears: But the important part is he is still alive. :D Silas can sign himself, eat, drink, more, bubble, ball, water (his favorite), fine, happy, sleep, no, yes, stop and a few more I just had a brian fart. lol
I will look into that therapist. We go see his doc this week. :D
 
netrox said:
I don't know much about your son and how mentally disabled he is but no offense, I fail to see how the implant would benefit him. It just upsets me that you would even think about it considering that brainstem implant is more dangerous than a cochlear implant and the odds of him making a use out of it is nil - may detect sounds but that's about it and that is NOT a good reason for it. And that he has a history of infection in various places indicates that he should NOT get an implant.

I have a CI myself and I love it but if I have a child who's both *mentally and physically* disabled with a history of infection, I would rather just let him be that way than to implant with a brainstem implant. Why not JUST ACCEPT the way he is?
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You are right about this little boy!!! my heart goes to him... the mother should accept him the way he is.. at least he could use some sign langauges to communicate with his mother... Just be thankful!!

Thanks!!

SxyPorkie
 
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