my 3 month old son was just tested positive for delta f 508 by a dna test. This was after a stay at the local hospital in the intensive care unit. Luckily for us I am laid off right now and collecting unemployment so I am getting paid to stay with him at the hospital while my wife works and she takes over on the weekends so i can spend time with our other son. My question is, is there any financial aid that will allow me to continue to stay home home with him to assure that he will recieve the proper care needed to to help insure that he will live a long and happy life? Before i was laid off, we made pretty decent money with the two of us working. Things were tight, but not unmanageable. Now with the layoff and the extra money needed for his care, I dont know what will happen. I am thinking about just getting a part time job evenings to help pay the bills but i am sure that with extra medical expenses it just wont be near enough. Any suggestions or possible thoughts on the matter would be greatly appreciated. I work in heating and cooling and the job market does not really allow for second shift, so any job i took evenings would probaly require a substantial decrease in income, and if my taxes from last year were used it would not reflect our present situation. thanks for any possible help.

Is there a reason you have to stay home with your child once out of the hospital? Our child was in the NICU for 6 weeks after being diagnosed at birth because of a bowel obstruction he has homozygous delta f508. DH and I work full time and DS goes to day care. We do his treatments three times a day and he gets enzymes with each meail. He's 23 months old.

There really aren't any financial aid programs. Your child isn't sick enough to be on SSI, in fact CF kids AREN'T necessarily sick -- they're normal children with a genetic disease. It's a progressive disease that will get worse but at this point we both work full time and are trying to sock away money into a medical expense account for when the time comes his insurance caps out or he needs a lung transplant. We aren't eligible for any programs as is the case with most parents of children wcf.

I hope your son gets better and released from the hospital soon. Our son is 11 mo old and he also was in the hospital for about 2.5 months. While we were there the social worker told us that we could apply for SSI but we never followed up so I'm not sure if it is possible. Talk to the social worker in the NICU and they should be able to tell you what options are out there.

our doctor told us not to put him into any day care situation until he was at least 6 months old which is almost exactly the time my unemployment would run out. He was pretty severly ill and from what my wife was saying he (our doctor) didnt want him exposed to any unnecessary bacteria until his immune system had been given enough time to fully recover and build itself back up. I also worry that if we put him into day care they would not provide the care he needs- that they wouldnt do the nebulizer, the chest and back thumping, feeding the enzymes before every meal, etc. to maintain his health. I guess I am just afraid for his safety and think that I as his parent would be able to best see to his needs. unfortunately our cash flow situation may require that he goes to a daycare provider while myself and my wife both work days. That is the whole reason behind my question.

Ratastosk, did you have any problems finding a daycare provider willing to do all the things necessary to keep your sons health up? Just wondering how all that works, will probably start a new thread on that one

We applied for SSI and were denied. Our state assistance is income based and you have to be very low income. The social worker checked on that. I was on maternity leave for 3 months. DS goes to a day care center and I was really really scared that they wouldn't take him 'cuz of the enzyme issue. But they've been GREAT! We do cpt three times a day -- he doesn't get it during "school", nor to they give him any of his medications other than the enzymes. I've got it timed, figured out so we do all that.

I get up at 6 and start his CPT while DH holds the nebulizer. Then while I get ready for work DH holds the nebulizer and does tobi for half an hour. Then at 5 we do another treatment and one again before we go to bed. DS sleeps through that one.

I asked his doctor about day care and they were only concerned about the number of children in his room. because he goes to a center he's in the baby room with only half a dozen infants and not with ALL the germy children. At a home day care you may run into a dozen kids -- including school age kids who bring home stuff from school

Basically the day care give him enzymes with meals, they feed him higher calorie stuff, which we've offered to bring from home (whole milk, carnation instant breakfast). When he was an infant they gave him higher calorie formula using the recipe we got from the dietician.

My daughter is 3.5 months but she was diagnosed at 2 weeks. I also stay at home while my husband works. We felt it was the best for our kids. I am afraid to put her in daycare and expose her to studd. Plus it is too expensive since we have 3 kids. Money is very tight but we manage. You can always try to apply for SSI. Every thing is worth a try to us. We were denied because of income. Our social worker at our cf clinic told us about a state medicaid program that goes just off the childs disability and not the familys income. I have an appt. next week to get on the waiting list that is like 3 years long. Some new laws are going to go into affect here so the list is being shortend so that we will be at the top by July this year or Jan of next year. I'm not sure what state you live in but some do have programs like this. The only requirement is that SSI has to find them disabled and the child can't have more than $2000 in assets. We just won't let our daughters savings account get that high. If you have a social worker at your clinic talk to them. They should know of different programs to help you out in many ways.

We're looking at setting up a health savings account for DS. Something that can only be used for future medical expenses, but cannot be touched by him and therefore can't count against him in the future when he doesn't have insurance.

Ds is almost 2 and he also goes to a day care. He can't live in a bubble and eventually will be going to school. We do take precautions and make sure to wash his hands, wipe down grocery carts, avoid sick people and those nasty toys at the clinic.

My five year old nephew has cf. Until a year ago or so, his wife's insurance was an HMO but changed to a PPO. While their insurance was an HMO all of their expenses were paid. However, after the change to the PPO, they had trouble coming up with the co-pays, hospital deductibles, prescription drugs. That is when they found out about a program to help families with special needs children. It is called the Katie Beckett bill. It is a medicaid program that will pay for most everything your insurance won't cover such as deductible, co-pays, emgergency room co-pays etc. They applied and it took almost six months to get approved. I would definitely talk to your hospitals insurance/social worker about this. I don't know of anything that will actuall give you income. My brother works nights and his wife works days, that way they were able to keep their son out of day care. Good luck to you.

we have a special childrens health fund here that will cover all of our deductables thru the state. its income based, i think we will pay $80-100 a month, but i think it will be well worth it. I decided that the best possible thing for me to do in our situation is to find a job on second shift outside my field (hvac) so i can be home during the days and my wife during the nights. the hvac field is kinda in a slump anyway so i figure this is just a good chance to get into a different field, even if the pay is a bit lower. oh, and thanks for the replies too.

i dont know where you are in the world, but here in england we have disability living allowance, i get £160 per month extra to anything else i earn and you can also get carers allowance because you care for them which is about £160 per month ( subject to earnings) this helps look after her and pay for all the extra food she eats..lol, but when my daughter turns 16 she gets the money for herself as well as benefits, or her waged from a job.

Hi,

I"m guessing you are in the US.....

Here in Australia if you are unable to work because your child or spouse has a disability or genetic disorder that requires full time attention, you can apply for a career of a disability pension. Where the gov't will supply you with assistance to not go to work and care for your child.

Although, the only part where the Australian gov't has failed is the fact that they do not recognize CF as a disability worth supporting on any lists for subsidies etc. Therefore all my medication is at full price and a bottle of enzymes can cost over 150 dollars. I am also *once unable to work* not eligable for a disability pension, and at the moment and not eligable for a 'dissability allowance'... where as a child with ADD or ADHD is entitled to it and their parents entitled to a subsidy as their child must be a handfull?

I hope all goes well with your son.

JD

yes, we are in the u.s. Midwest state surrounded by water with a peninsula above us. Still trying to find a job but not having much luck. So i decided to go and get me some of that college type edj-eka-tion and attempt to find a career where I can work seconds or swing shifts without a problem. I am actully looking into resperatory therapy, which a local school offers as a 2 year associates degree and would be dirrectly related to our sons condition. I am really suprised at the diversity of locations of people using this board.

I live in the midwest and a number of CF parents that I've met are nurses or in the medical field. Greater flexibility with work schedules, I suppose. I thought about going back to school and becoming an RT. The irony about DS's CF is that I've always been soooo squeamish about mucus/plegm. Probably the one and only thing that grosses me out. Guess someone's trying to tell me something. Guess I'll stick with being a government bureaucrat.