POTS and finances

[Jean123]

How in the world do people cope financially when it is a child that is affected with a disabling condition such as POTS. My husband and I both have disability insurance but, nothing for our kids!

Due to my son's continuing problems with POTS we are looking at going from a two income to a one income family. We don't make a lot of money however, we make too much for any government assistance.

I am still working however, it is more part time than full time. The medical bills are starting to pile up and we still have a long road ahead of us. We have pulled together all of the resources we can think of (neighbors to help us with him when I am working, my husband takes longer lunches from work, my mother was helping but will be having surgery soon and she works also).

Where do you go to get assistance for working families who have children with disabilities????

Any suggestions out there?

[geneva]

I am always so impressed by the wealth of knowledge available through members of the forum. Lynna, I hope that the information provided will help you find resources available here in TX. It must be terrible trying to balance the need to be with your son full time and trying to work but it sounds like you are doing a good job. Another thought I have is whether your doctor can order home care services? This wouldn't be full time of course but might allow someone to come in weekly. ALso, what about getting a church member, high school or college student who might come and be with him part of the time and hopefully without pay? Often just having another person in the house can give you and your son peace of mind. I hope that as time goes by he will find treatment that works for him.

Good luck pursuing the SSI and medicaid route but from others experience it will take both patience and perserverance but hang in there.

[morgan617]

My son has had juvenile arthritis since age 11. He also has Crohn's disease (inflammatory bowel disease) hyperparathyroidism, severe reflux with several histories of ulcers, severe migraines, and anxiety disorder. He is 23 now and has been refused for ssdi twice. He is attempting to go to school, but it's pretty difficult for him. His spine is already fusing in places and he has an 80% chance of needing hip replacements before 30. We got an extension on his dad's insurance, but have to reapply every year, even though they know it's progressive and incurable. the insurance company would make him permanent, but someone at his dad's work makes the decisions. Thank God he's got a great doctor who's willing to do anything to help him. His rheumatologist won't even help!!! He takes 24 pills a day and just one of those scripts costs 1300 to fill. If we didn't have co pays and insurance, he would be severely disabled. Even with all these meds, he's only about 60%. So every year we have to worry about what we are going to do if they reject him. He is totally unable to work at any kind of job at the hours and level to get his own benefits, ssdi, says too bad, you just support him. My husband has to work 70 hours a week and my ssdi, though I'm grateful for it, doesn't help much. It wouldn't pay for one month of his meds. So I don't know what to tell you. I hope the above info helps you and you can get what you need for him. It's not bad enough to have a chronically ill child, but then they punish you for it. What a world morgan

[Dawg Tired]

If you call a children's hospital, such as St Judes; ask to talk to one of the social workers. They are a wonderful resource and a large hospital has some very knowledgeable people that can come up with programs the rest of us would have no idea about.