What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

question about SSI?

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.

I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!

Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.

I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!

Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.

I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!

Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.

I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!

Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 

TobysMom

New member
So,I've been going through all the processes of claiming SSI for DS, and they send me a form to fill out about his PAIN. My son is 4 months old, how do I know wht pain he is in, other than from his severe reflux? I didn't know PAIN was required for claiming SSI for a life threatening condition, like CF. I dont want to call and tell them "well, he doesnt have pain" because he doesnt seem to cry out of pain or anything, except sometimes when hes pooping (TMI, i know! LOL) he mostly strains though when he poops.
<br />
<br />I just dont get it and I feel like because he doesnt "tell me" he has PAIN, that we may be denied!!
<br />
<br />Any advice? Since, I am not a CFer, I dont know if there are pains you may get that I am not aware of.
 

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.

They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.

My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.

Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.

Good Luck
 

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.

They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.

My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.

Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.

Good Luck
 

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.

They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.

My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.

Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.

Good Luck
 

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.

They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.

My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.

Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.

Good Luck
 

JazzysMom

New member
Pain is not one of the requirements to meet under the SS guidelines for CF. Its lung function, inhaled meds, hospital admits &/or iv therapy & all the other stuff is extra on top.
<br />
<br />They are confusing CF with another illness are they? The only time pain came into play for me was when I originally hired a local disability lawyer for my appeal. He approached it like a back injury.
<br />
<br />My CF doctor was not happy with that approach thinking it would cause a problem down the road. BUT with that approach pain, range of motion & activity based on that pain was asked about.
<br />
<br />Have you been assigned a casework at SS yet? I would call & explain it to them. If you cant get anywhere with them directly maybe recruit Beth Sufian's advice since she knows the ins & outs.
<br />
<br />Good Luck
 

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.

i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.

i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.

i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.

i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

TobysMom

New member
thank you!! i will call and ask, however, i figure w/out his enzymes, his belly would hurt... and w/out his zantac, his esophogus would hurt... but ill wait for a call back, i just let a message.
<br />
<br />i do appreciate your input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!

Mom of katlynn 9 yr. old CFer
 

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!

Mom of katlynn 9 yr. old CFer
 

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!

Mom of katlynn 9 yr. old CFer
 

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!

Mom of katlynn 9 yr. old CFer
 

katlynnsmom

New member
Hello...Don't give up on the SSI. You might get turned down at first . My daughter did, she was only a few months old. So I got lawyer that deals with those cases. He filled out some paper work and sent it to them. Then she was approved...which he got a percent of her pay. Which the first thing she got was backtime pay...they went back to the time I first filed for it.But it was worth it.She gets medicaid SSI...if it was not for that I could not afford all the med's she is on...So good luck!!
<br />
<br />Mom of katlynn 9 yr. old CFer
 
Top