Son needs medical treatment

[Delaney21]

I would appeal to your state insurance. My son has a chronic illness and is on the medical waiver program for our state's Medicaid program. We had to appeal when we wanted to get out of state treatment for my son and eventually (after having every single doctor that has seen my son write letters of necessity) the state decided to cover it. Don't give up.

 

[SandrA9810]

My best friends daughter, Taylor has CRPS. It was awefully painful and her foot turned totally purple. Her mom took her to Boston Childrens Hosptial where they have a special unit for this disorder. After 5 or 6 weeks of intensive therapy she got the use of her limb back. It doesn't really go away she will always have to do certain exercises. But they work magic there. If you go to their website, there is some useful imformation. It takes weeks or sometimes months to get a space in these programs. The sooner you get treatment the better. Good Luck getting money from the dad. Take him to court, your childs health is worth it.

It's good to hear these stories. And I guess if it's the fourth recommendation for this particular treatment, she has tried other methods to no avail.

My dad was good at disappearing, and my mom not so good about doing a thing about it. His insurance was supposed to pay 1/2, my mom pay a 1/4, and my dad pay the final 1/4. The insurance and my dad were supposed to reimburse my mom after she paid out of pocket. Really weird crazy thing. So yeah, she never went after the money she was owed.

I would find any way to have the treatment done, and then worry about the cost.

 

[Shelli_5]

Please ask to speak with a social worker at the hospital where your son will be treated. They will have tons of information for you.

Good luck!

 

[akcire]

Please ask to speak with a social worker at the hospital where your son will be treated. They will have tons of information for you.

Good luck!

I have frequently posted of my involvement with my local Ronald McDonald House. If you think you may have a need for the services of RMHC, you will want to work with the hospital social worker for a referral--that is how most placement at the house works, unless you are a previous guest (then you may contact them directly). Most of the houses ask for a donation, however no one should ever be turned away for an inability to pay. Also "the house" provides more than lodging--typically it is full of food and other items which have been donated for the benefit of the house families.

Good luck with your situation

 

[kandeebunny]

My best friends daughter, Taylor has CRPS. It was awefully painful and her foot turned totally purple. Her mom took her to Boston Childrens Hosptial where they have a special unit for this disorder. After 5 or 6 weeks of intensive therapy she got the use of her limb back. It doesn't really go away she will always have to do certain exercises. But they work magic there. If you go to their website, there is some useful imformation. It takes weeks or sometimes months to get a space in these programs. The sooner you get treatment the better. Good Luck getting money from the dad. Take him to court, your childs health is worth it.

I'm going to put my 2 cents in again lol. IF you choose to do treatment, I would reccommend coming out to Boston and seeing the Dr's at Childrens. I am VERY biased however, as I owe my life to them. Anyways, they will treat, then worry about how you can pay them, they have charitable giving programs, they JUST opened the Manton Center for Orphan Diseases (google it...it's AWESOME and the people there are amazing!) and while you would NOT qualify for RMDH here (cancer only) they have other free housing options for patients families as well as homestays.

I would still personally look in to alternative medicine, chronic pain sucks, it sucks even more from nerve and neurological problems, but can be coped with. I just worry about long term effects of these programs/drugs that are so new. As someone who did clinical trials of treatments that were deemed safe at the time...well needless to say some of those drugs got pulled from the market, some never made it there, and there have been long term consequences.

Either way if you have any questions, or want more info on Boston's services feel free to PM me. I wish your son the best.

 

[zumbergc]

have you tried acupuncture to help with the pain.

 

[southern_redhead]

How many friends/family do you have that live locally to you??

A common thing I see among friends, or even family members trying to raise money for a reason, is they'll hold a car wash. Sometimes at a gas station/corner store or their house if it's on a main road.

You could do 2-3$ a car or donations only. Sometimes donations will get you a lot more than setting a price. Often times in high school, a trucker would pull up with his cab and pay like 2-3 times a normal price, just to have a bunch of kids hand wash it. Of course it was always fun climbing on it to get to the top.
Or if your boy is old enough, ask his friends if they want to help. Give them like 10-20 bucks each with a couple of 5$ pizzas at the end of the night.

Around here we have benefits. They will usually do a fish fry or BBQ plate (sometimes they grill) then do things like party jumpers, cake walks, auctions, etc..... Many times local businesses will donate money to fund the start up (food/jumpers) or will donate an item to be auctioned. It is a tax write off, their name is displayed at the benefit so free advertising, they are happy to do it. Try contacting your local paper to see if they know of anyone who routinely does these. Where I live usually friends and family get it up but there are two or three people who you ALWAYS see their names attached to these. I think they are just super planners and very giving so they are kind of "go to" people for this. Many of these benefits raise into the thousands.

 

[hugabearjo]

Thanks guys for all the support. I am sooooo happy to hear that the treatment works. I was told that only 5 hospitals in the nation do this treatment. Boston being one and we are lucky to have two here in the PNW. Seattle Children's and Emanuel Children's in Portland, Oregon. I have a call into the social worker hoping for some program.

As to the SSI.... I don't mind answering.... it is a long long process and we have been denied once and are on an appeal. Hoping they will recognize it soon. His age makes them want to fight it. I won't give up.

As for Dad, he isn't off the hook and I will bill him but, I also know his track record and know this will be funded on my own. Unfortunately, through the 11 years I have been single parenting it, he has never stepped up to the plate.

I know I am one of the strange ones but haven't even dated in the last 11 years, too busy raising my kids. Ex tends to throw that up every once in a while, that if I would just remarry I wouldn't have to bill him for insurance their step dad could cover it. This gives you an insight to his mentality.... lol... I have just have learned through the years that you can't get blood out of a turnip.

I have a job interview tomorrow morning praying for good things.

Thanks again for all the support it means the world to me to know that so many people care about me and my son.

God Bless each of you.

 

[scrapquitler]

Biggest Problem-
MY portion of the treatment they want to give him is $5000 and I don't know where or how to come up with that kind of $$$$

Check with the hospital where he will be treated, they usually have some kind of grant program which can help you with the bills, on a sliding schedule based on your income.

Even if you don't qualify for that, the hospital will usually always work with you to come up with a payment plan (interest free). Even if you can only pay $50 or $100 per month, as long as you are making those payments consistently, they will accept that.

Also check to see if there is some kind of 'association' or something affiliated with that disease and see if they have some sort of program to help you.

And depending on the disease or condition that he has, maybe Shriner's can help?