update on frankie

You mean the doctor is saying that he might be on this feeding tube for all of his childhood and adolescence?

Wow, that's a tough thing to face. A friend of mine has had oral cancer and cannot eat anything either; she has been on a feeding tube for about 3 years now. Had hopes of getting off it but so far her mouth and swallowing issues, despite numerous surgeries, continue.

It is amazing what people can come through, and what medical technology makes possible. A generation ago, I bet you would not have seen feeding tubes being used as they are now, almost as a routine sort of thing when needed.
 
frankiesmom said:
if he would eat and not keep falling over, i think i could just go with it..but this feeding tube sucks, and the fact that he is eating barely anything really sucks. hes happy with it but the goal is to get him to eat..and now hes dr is saying that he might be off of it as an adult, and that would be really good for him..ugh..i just wish we had some damn answers! yes, i said that i wasnt going to chase a diagnosis, and im not but still..there has to be another kid like frank! i did read that being mentally delayed and deaf is pretty rare though.
:hmm:
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Listen, You're not going to like this, but it needs to be said. Your child has aversions to food for whatever reason. He NEEDS this feeding tube to get full nutrition. Trust me... If you add malnutrition ON TOP OF his other issues, it won't be pretty. I really doubt he'll need the tube until he reaches adulthood, but he will probably need it for awhile, so get used to it. I would also get him into a feeding clinic to help him work on his aversions to food.

You need help with this NOW or HE WILL be on the tube for life!

I am not saying that you should implant your son, or your instincts as his Mother are off, but you must trust that he has special needs and you, as his Mom, needs guidance to help him. Get him into some occupational therapy and PLEASE for his sake, check into a feeding clinic for him. He needs to learn how to eat and overcome his aversions NOW. It's a whole lot easier to do knowing he's getting decent nutrition with the feeding tube than having this kid fall of his growth chart because he didn't have it.
 
From what she's said before, OceanBreeze, it sounds like more of an issue that he physically cannot handle food, can't chew and swallow, due to lack of muscle tone, rather than to food aversion as such.

Not that I know much about the condition, but those are two very different issues.
 
Beach girl said:
You mean the doctor is saying that he might be on this feeding tube for all of his childhood and adolescence?

Wow, that's a tough thing to face. A friend of mine has had oral cancer and cannot eat anything either; she has been on a feeding tube for about 3 years now. Had hopes of getting off it but so far her mouth and swallowing issues, despite numerous surgeries, continue.

It is amazing what people can come through, and what medical technology makes possible. A generation ago, I bet you would not have seen feeding tubes being used as they are now, almost as a routine sort of thing when needed.
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I doubt it, but its possible. It depends on Frankie's diagnosis, which no one has pinned down yet. If that Dr IS saying that, I'd take Frankie to another Dr who's more optimistic. I'd also get into a feeding clinic and get him into occupational therapy.

As for the use of feeding tubes, they've been used this way for the last 30 yrs.
 
frankiesmom said:
if he would eat and not keep falling over, i think i could just go with it..but this feeding tube sucks, and the fact that he is eating barely anything really sucks. hes happy with it but the goal is to get him to eat..and now hes dr is saying that he might be off of it as an adult, and that would be really good for him..ugh..i just wish we had some damn answers! yes, i said that i wasnt going to chase a diagnosis, and im not but still..there has to be another kid like frank! i did read that being mentally delayed and deaf is pretty rare though.
:hmm:
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Will he drink from a bottle, I was thinking maybe you could made Frankie meals so he could drink them.
 
Beach girl said:
From what she's said before, OceanBreeze, it sounds like more of an issue that he physically cannot handle food, can't chew and swallow, due to lack of muscle tone, rather than to food aversion as such.

Not that I know much about the condition, but those are two very different issues.
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Ugh You're right about them being different... I retract what I said. Then, he might be on the tube for life. But, its better than having the child become malnourished.
 
Of course. That's why she went ahead and had the feeding tube installed.

(Is "installed" the right word? Should it be "inserted?" "Implanted?" Whatever it is...utilized, anyway.)
 
I'm going to gently remind frankie'smom that she needs to take sometime for herself. I can only imagine how stressful this is for you. Make sometime for yourself so that you can re-engage with more energy. You seem to be carrying this burden alone. It might be a good idea to get other people involved with frankie's care, including feeding. Believe me, I know how tough being away from frankie and turning care over to family members will be for you. You're not going to make it if you don't, though. Your health will suffer and then you won't be able to take care of anyone.
 
I know it's all still new, but you'll get in the swing of things with his g-tube. It's really not that bad, and we are fortunate to live in a time where we can ensure people are getting all the nutrition they need, whether or not they can consume it orally.

Malnutrition can have even more adverse effects on a person, so at least he will not be malnourished. Anything he consumes orally will just be a bonus at this point.

I agree with the recommendations about getting him OT to help with the oral aversion issue. It may or may not be something he can physically do, but the time is now to get him on the right path. The early years are so crucial in the long term...
 
I should have said, "the time is now to give him the opportunity to develop the skills he needs. That's more of what I meant.
 
oh trust me, he is in feeding therapy, occupational therapy, physical therapy, and god knows what else i cant remember right now..he definitely has an oral aversion, but with the low muscle tone, it is an even bigger challenge, and yes, that is why we got the feeding tube sooner rather than later, because i could see where this was headed.
there are some incredibly smart people on here and i have a question. with my first 4 children, i recieved the rho-gam shot for rh negative blood, or whatever it is..anyways, with my 5th, they told me my blood type had "changed" and i no longer needed it...well, being the completely clueless with anything regarding science person that i am, i went with it and didnt recieve the shot for him, my 6th child or for francis. my question is if having an rh incompatibility could be what is up? he was pretty jaundiced at birth, but didnt really have much else, except that he never developed certain milestones, and he failed his hearing screening as a newborn..could this be it or not? i am going to ask his dr tomorrow.
 
CSign said:
I know it's all still new, but you'll get in the swing of things with his g-tube. It's really not that bad, and we are fortunate to live in a time where we can ensure people are getting all the nutrition they need, whether or not they can consume it orally.

Malnutrition can have even more adverse effects on a person, so at least he will not be malnourished. Anything he consumes orally will just be a bonus at this point.

I agree with the recommendations about getting him OT to help with the oral aversion issue. It may or may not be something he can physically do, but the time is now to get him on the right path. The early years are so crucial in the long term...
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he LOVES occupational therapy..they have a big swing that they sit on together and he really enjoys it. he gets frustrated when they try to get him to balance himself, but other than that he loves it.feeding therapy? that is a different story. he is also going to the neurologist this week too..not sure what they will do since hes already had the mri.
 
frankiesmom said:
oh trust me, he is in feeding therapy, occupational therapy, physical therapy, and god knows what else i cant remember right now..he definitely has an oral aversion, but with the low muscle tone, it is an even bigger challenge, and yes, that is why we got the feeding tube sooner rather than later, because i could see where this was headed.
there are some incredibly smart people on here and i have a question. with my first 4 children, i recieved the rho-gam shot for rh negative blood, or whatever it is..anyways, with my 5th, they told me my blood type had "changed" and i no longer needed it...well, being the completely clueless with anything regarding science person that i am, i went with it and didnt recieve the shot for him, my 6th child or for francis. my question is if having an rh incompatibility could be what is up? he was pretty jaundiced at birth, but didnt really have much else, except that he never developed certain milestones, and he failed his hearing screening as a newborn..could this be it or not? i am going to ask his dr tomorrow.
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I don't think we can answer that for you, but, a developmental ped should be able to.

Btw, I'm sorry if I came across harsh in my other post.

I just want you to realise that Frankie is going to need a LOT of support. You going it alone really is NOT a good idea. I would also probably nix the idea of going to a feeding clinic; as that may not be the best fit for him. However, going to OT IS a good idea. That's really where you'll probably make the most progress with this. If, for whatever reason you don't, you can always revisit the idea of the feeding clinic. I can tell you that feeding clinic protocols are kind of rough, so if it's recommended, really research it and decide if you want to go that route.
 
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frankiesmom said:
oh trust me, he is in feeding therapy, occupational therapy, physical therapy, and god knows what else i cant remember right now..he definitely has an oral aversion, but with the low muscle tone, it is an even bigger challenge, and yes, that is why we got the feeding tube sooner rather than later, because i could see where this was headed.
there are some incredibly smart people on here and i have a question. with my first 4 children, i recieved the rho-gam shot for rh negative blood, or whatever it is..anyways, with my 5th, they told me my blood type had "changed" and i no longer needed it...well, being the completely clueless with anything regarding science person that i am, i went with it and didnt recieve the shot for him, my 6th child or for francis. my question is if having an rh incompatibility could be what is up? he was pretty jaundiced at birth, but didnt really have much else, except that he never developed certain milestones, and he failed his hearing screening as a newborn..could this be it or not? i am going to ask his dr tomorrow.
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Yes HDN can cause mental retardation.
Without use of Medical Intervention, the immune system of an Rh-negative mother will not be controlled. These sensitized antibodies it has created are from the first pregnancy are specifically programmed, ready and waiting to attack the Rh-positive (Rh+) blood cells of your subsequent pregnancies. As the antibodies begin to attack and destroy the red blood cells of your pregnancy, it can lead to serious complications including Anemia, Jaundice, Cerebral Palsy, Mental Retardation, Heart Failure and even death in severe cases. This horrible condition is called Hemolytic Disease of the Newborn or HDN and in severe cases would typically cause a still birth or cause death very shortly after birth.
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The Rh-Negative Registry - Rh- Negative Mother & Pregnancy
 
yeah, he had to be under one of those lights after he was born..damn, wouldnt this be something if this is why he is like this? hes not got heart problems though, except for the murmur, and they said its harmless. how can they test him for this i wonder? and i wonder if you are rh negative, if you stay that way..i am definitely calling tomorrow.

i am O negative and my husband is B positive..the place where i had my 5th told me that when you are O negative, your blood type can switch from positive to negative and back again..
 
also, i am lucky enough not to be going alone at this..my husband works all day, and then helps me with frankie as much as possible..we talk endlessly about ways to help him and things we can do for him..if i didnt have my husband, i would absolutely lose it.
 
I can tell you that if you are RH-negative, that stays with you. I am. You would get a Gamma shot after any birth or miscarriage (which is how we found out I was.) it's part of routine blood screening in any of those situations. You'd also get a second Gamma shot at 28 weeks along in a pregnancy. If you think you might have more kids you definitely want to confirm whether you are (key note: father of the child has to have a positive blood type in order for it to be an issue.)
 
right, i am O negative, and he is B positive. we had that confirmed with the first children.
they tested both of us. were blood tests less reliable in the early to mid 90s?
 
Edit: I just read some of your earlier posts and see that you've received those shots already, so you already knew. Sorry, I didn't mean to "explain".
 
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