I guess I should be thankful. My fight with our insurance company about the coverage of Botox is over. And it didn’t end on a happy note. Dr. Fehlings (who is beyond amazing) drafted a letter to our insurance, stating Jillian’s benefits from our first round of botox. Sadly, it didn’t matter.
I need to add now that I am SO thankful for amazing friends (you all know who you are) and an amazing husband who I called at work in tears and he felt helpless. I’m sorry I made you feel like that, hon, but we all know you don’t read my blog. 
I’m still trying to process everything that was said. I’m sure I will blog the company name and try to do everything in my power to get Jillian the medication she needs. I’m allowing myself a pity party today and tomorrow I need to play adult and pretend that I’m not so heartbroken as I feel on the inside.
When I called my insurance company today, I explained I wanted to talk to a supervisor. She asked the details and put me on hold. I told her that I had a letter of appeal from Jillian’s doctor and I wanted to know who the appropriate person was to direct this letter to. When she came back on the phone, I was not connected with a supervisor, in fact, I was told they didn’t care. I wouldn’t say today was one of my finest moments on the phone. I said “it doesn’t matter that my child is in pain? It doesn’t matter that it has been proven that botox worked the last time? It doesn’t matter that I have to hear my daughter with tears in her eyes saying her legs don’t work anymore? It doesn’t matter that she can no longer go up and downstairs (crawling) because she lost confidence in her once loose muscles?” You know what this “lovely” woman said to me? Unless you change the venue, aka not at Sick Kids, we won’t approve it. It won’t matter who you talk to.
Good bye, flat feet, we hardly knew you.
Wanna know WHY we get it done at Sick Kids? My daughter is given 6 injections in each leg, 2 different muscle groups and she’s given conscious sedation. Frankly I don’t mind needles and I wouldn’t want someone jabbing me in my already tight muscles with needles without some sort of sedation. The insurance rep then had the NERVE to say that I was overreacting. The reason they won’t cover it? Because it’s administered in a hospital. If it were a private clinic, that would be ok (maybe). It is administered in a clinic WITHIN sick kids. So, there’s where it sucks.
My favourite part of Dr. Fehlings letter? “We are hopeful you will reconsider the coverage of Botox (Botulinum Toxin A) for Jillian as it has been shown to be efficacious for this young girl allowing her to walk, sit and play with her peers.” So today? I’ll have a pity party, then hopefully brush myself off and find out where to go from here.
Until I get to that point? CP can suck it.
Have your pity party then FIGHT! You are strong and you know me and MANY others are behind you and ready to fight right alongside you. This is NOT right. Jillian is such a fighter and has proved it many times over. The leaps and bounds we saw through your videos and pictures thanks to Botox was amazing. I have tears in my eyes because this little girl who can conquer so much is being held back and confined to a wheelchair because of some insurance company.
Thank you ever so much for your awesome blog post. I was reminded (not only by you) that I’m not the only one cheering her on. I guess it’s that whole village mentality. You need a village to raise a child. And who cares if they’re a physical village or online?
Stay strong! Take a bit to think and fight! I agree that Jillian is a fighter and she shouldn’t be dented this treatment. It’s obviously worked very well.
Hope things work out well soon !
Thank you so much!! I really hope we can figure out away around this. I don’t like feeling helpless.
HUGE hugs and prayers and I totally agree with Nolie, have a pity party but do not dare settle for that kind of treatment! YOU CAN FIGHT THIS!
Thanks, Candy! I really hope I can. No, I KNOW that I HAVE to, if I don’t, who will stand up for her?
I have to agree with Nolie here. Your insurance sucks butt and I will help you fight. They will not and can not just dismiss you like this. Squeak your little heart out because eventually they will get tired of hearing from you.
you’re the bestest beastie in the whole wide world. You know SO much about this saga yet you never tell me to put my big girl panties on and get over it!
Ditto Nolie! Let me know if you need any help blogging about it, tweeting about it, or fundraising for Jillian. Don’t be afraid to ask! Insurance companies suck!
Thank you SOOOOOOOOOO much. I’m just so freaking overwhelmed!!
Oh girl I am so sorry to hear about your struggles with that dumb ass insurance company…You are entitled to a pity party after how they spoke to and are treating the whole situation. Don’t let them get your spirits down. You are strong and Jillian will walk on her beautiful flat feet. XOXO
Thanks! I really hope so too!! I know that I’ll start fighting again. I have to since no one else can.
Cheryl you have every reason to be angry and upset. Don’t give up and don’t stop fighting. Let us know what we can do to help and we will. We are here for you in whatever capacity you need. Hugs and love for you, Jillian and the whole family.
Thanks so much, Lorie! That means a lot to me!
I am so sorry! How very rude of her to act this way. It is YOUR child and of course you want help for her! I honestly hope someone will listen to you and she can get the care she needs…
I really hope so too. I won’t give up, I just need to gain my thoughts and my composure. Maybe sometime in the near future I could talk about it without crying. That would be a great day!
Hugs to you and Jillian! You both are very strong. I will help in any way I can too. I can’t believe they are not helping, wow…
Thanks Kim. I’m really glad other people see that this is a problem too and I’m not just overreacting!
You know, I’d never wish anyone to go threw something like this, but I can’t help but wonder how fast that insurance company would change their minds if their president or CEO had this need. It’s so not fair that someone behind a desk, with very little to NO knowledge on most of these conditions and treatments has the right to a yay or nay. I’m so sorry Cheryl!
I always wonder about that too. If the CEO (or whatever) NEEDED a form of treatment, I’m pretty sure they wouldn’t back down from that fight. I guess I need to stand up for the little people.
You know I love you.
and I love you right back
I’m willing to pick up a sword and fight alongside you. There’s enough of us that we could inundate that insurance company with letters in protest. Are there any government officials we could blast with letters? The news media?
Like I said to Nolie- it’s the whole ‘it takes a village to raise a child’ mentality. I am very very fortunate I have so many people behind us!
So can you change the venue with your doctor, and go to a clinic like they want, and have him do it there? That’s what I would do.. if that’s the only reason they’re not approving it, then find a way! Someone who has a clinic will be sympathetic to your plight. Keep fighting, sweetie! xo
I just don’t even know if they’d fund it in a clinic either. They seem to turn words around to suit themselves. Frankly, I think they want me to just give up. There are valid reasons why it’ll be done in a hospital and they can’t even take the time to listen.
I am so sorry Cheryl. The truth is that you shouldn’t have to brush it off. It should be approved and this sorry excuse for an insurance company should never have the right to tell you that you are “overreacting” when it comes to your own child. {Hugs}
<3
I am so heartbroken for Jilly. I hope something changes! Your an amazing mother and I know you’ll fight for her!
I really hope I can find my mojo/juju/groove back soon!!.
I’m sorry. I don’t know how they expect a two year old to just ‘handle’ getting six needles without sedation. I could see this reaction if she were 16 maybe. Don’t give up.
total of 12 needles. No way do I want to shove needles in her already tight muscles without some sort of pain medication!!
Just when I think I can’t be shocked at the health care coverage of this country (or lack there of) I surprise myself by reading posts such as yours. Keeping you all in my thoughts of strength. Love and hugs!
I’m not sure if you’re talking about the US or Canada, but since I’m Canadian, we do have universal health care. I just wish that raising a special needs child wasn’t this hard sometimes.
Cheryl — I am sorry to hear about this ridiculous situation!
There is so much research evidence in favour of Botox that I’m not sure how the insurance company could deny it.
What have you heard from other parents? Are their insurance companies covering it?
Why will they not cover it in a hospital?
Perhaps you should fax a copy of Darcy’s letter to the insurance CEO and let him/her know you will be contacting local health media to get your story heard. xo
Apparently within the hospital (especially with Darcy and Meagan), OUR specific insurance company is the hardest to work with. I really wish I got some wonderful job that came with stellar health benefits. But then, if I work, I’d only be working to afford day care.
They won’t give me a solid answer about WHY they won’t fund in the hospital, frankly, I think it’s stupid that they’re denying a 3 year old a better quality of life.
I need to pick myself up, brush myself off and figure out where to go from here. Thank you SO much for your support, too, Louise!
I wish I could fix this for you.
Can we all start calling the insurance company? We could annoy them to giving in.
Have your pity party and then know we are all behind you as you fight for that beautiful little girl.
Thanks Rachel. I’m trying to figure out what my options are. It’s just highly frustrating, you know? Hopefully I’ll figure out something soon!
I won’t share platitudes of commisseration with you because in fact I have NO idea what you’re feeling or going through and I won’t pretend to know how you feel. That being said I will pray that your darling, courageous and determined daughter will get the injections she needs in a way that you and Adam can afford, whether it is through insurance coverage or other means. Life sucks sometimes good thing we have friends to cry to when it does.
I am so sorry Cheryl. I know that this is one battle lost but you WILL win the war. I know you won’t give up and you will fight to get Jillian what she needs.
Much love and prayer from us all,
Jen, Jason, Eva and Jakie. xoxo
It just means that more fight is needed then you thought. It’s not the end. Send them an e-mail ! Sometimes it works much better then phone calls. I have an experience with phone calls being ignored and e-mail working (not medical). Attach a scan of her doc’s letter. Dont talk to a representative anymore. Find a manager’s direct phone number. There should be a way. Representative on the phone works as a shield, don’t bother to talk to them. Sending hugs to you and your beatiful daughter. You will win !
Oh Cheryl. I remember the WW post when you first put that photo up. This break my heart and angers me for you. A friend’s some was diagnosed with CP a few months ago and they did Botox last week. I sent her a link to your blog so she could follow Jillian’s journey and know that as a mother, she wasn’t alone. I know you will fight and fight hard, but for now, you deserve a pity party, I am so sorry this didn’t turn out like it should have…
That breaks my heart that the insurance company is handling this in such a cold manner. It angers me they don’t care about her well-being and development and only want to follow protocol. Hopefully you’ll be able to fight this one and get their decision reversed.
I am so sorry Cheryl. Your insurance sucks and has no compassion for their members. Although they don’t have compassion, there are a ton of other people out there that do.
Keep your head up. I will be keeping you and Jillian in my prayers and hope that something changes soon…