Our son gets SSI and was approved when he was around 6 months old and I don't think he was any "worse" than what you guys are describing so I am a little confused. I think this varies greatly from state to state and I also think that it is dependent on your income as well. That should not influence the decision as the whether they are "disabled" but it does decide if they actually get a check or not. Luke was diagnosed at three months and the hospital did the initial referral to SSI when he was first diagnosed. At the time he was on enzymes, vitamin and iron supplements, zantac, albuterol, pulmozyme, pulmicort and cpt two time per day. He was actually hospitalized at the time of diagnosis for respiratory issues and then again a couple of months later, so I am not sure if that is why we got approved or not. But the breathing treament thing varies from clinic to clinic as far as when they start them on nebs., so I don't know that they should be able to count that against them. Our doctor wrote a letter to SSI stating that Luke could not be placed in daycare and I had stopped working at that point, anyway. I know they told me at the initial appt. that CF is not an "automatic" qualifier, so I guess it does depend on their current condition. I think I would still appeal it based on the medications, the daily treatments and the extreme risk of placing them in daycare esp. the first winter. Maybe your team could could send some more detailed info.
