Your Opinions, Please,..

[Butterfly_8t8]

No, no, please Nikki ( that's my middle DDs nickname, too, BTW, and same spelling ), ramble on all you want,.. I'm the same way, and I appreciate all the information you've been providing. THANK YOU!

I keep contemplating whether I even want to go ahead and go back to that pediatrician tomorrow,.. why waste my time taking my other daughter to see him, if I feel so uneasy about his compitence, you know? And the more I think about what you've been telling me about Shriner's the more I think that maybe I'll go ahead and give them a call in the morning... after I cancel the ped. appt.

Now, since I already have really good insurance, and I have good income (although not much left over by the time I'm done paying for everything),.. will I need to pay a portion of the bill, or is it free to people no matter what? I noticed on the app that it wants insurance information. Also, it asks for a sponsoring Shriner,.. what do I do,.. leave it blank? I suppose as you said, if I call, they'll walk me through it all, LOL. I'm a worrier, too,.. I don't want to ask for something that we don't qualify for, or if it means someone else in greater need not getting the help. I guess you can see how ignorant I am about Shriner's,.. I've heard of them, and yes, have seen them in the parades, but I just don't really know much about it. I'd love to hear any more you're willing to share. And what does a 'Shriner' do aside from the little hat & parades?? Not poking fun,.. seriously don't know! Am interested!

Thanks again very much! (((hugs)))

[nikyergen]

Butterfly (I like that name), Shriners is free to every child regardless of the parents income or insurance status. You won't ever see a bill. The purpose of the insurance information is that there are a few things that are billed to the insurance. For Crystal it was $2,500 of blood work. The insurance paid $1,000 of it and Shriners paid the rest. When I got the bill for the remaining $1,500 I called Shriners and asked them what I was supposed to do. They said nothing. That OHSU has to send out the bill to bill the insurance. But, that Shriners would take care of the balance. I never saw another bill after that.

Don't look at using Shrine Hospital as wanting Charity. It is not. It is getting the very best doctors in the world to take care of your precious child. You will qualify. They take all walks of life because they want what is best for the children. If you need any help filling out the application, call the Shrine Hospital. If they feel you need a sponsor to sign it, let me know. I'll have my husband find one for you. They are really easy to get.

We understand about having good insurance and good income, but being out of money after the bills are paid. I think it is the American Way. I couldn't figure out how we were going to handle another $20,000 in debt.

I'd like to share more with you about Shriner's. They are a fun group of men. Here's my e-mail - nikyergen@hotmail.com. If you would like to e-mail me I can give you more indepth explanation of the men in the funny little red hats. We tease my husband about his all the time. He takes it all in stride and is very proud to be a wearer of one of those funny little red hats.

By the way, if you don't like your ped doctor. Cancel the appointment and get into Shriners. It may take you a little while to get in, the case load is big. But, well worth the wait.

Nikki

[Butterfly_8t8]

More discoveries!

Well, I went ahead and canceled yesterday's appt. w/ the pediatrician, and then at the same time let them know I wanted to switch to a new pediatrician so that's now in the works.

We're getting set up with Shriner's (THANK YOU!!), and they're having me fill out applications for all three of my girls because my other two girls are showing signs, too, now that I've looked at them more closely and know what to look for... you know, I'm feeling guilty for not noticing these things sooner! But, I hadn't on the other two before this,..

My middle daughter has one shoulder blade waaay higher than the other, and the shoulder on that side also looks like it starts from her neck about 1/2-3/4" higher than the other side. How have I not noticed this before??? Now, looking at her from the back, I can see how her left side looks larger porportioned than the right side because of how it is shifted. Her spine doesn't look or feel like a 'curve', but is very bumpy and almost jagged-like,.. as if the bones are each kind of poking in different directions all the way up,.. does that sound familiar to anyone?

My youngest daughter seems like she may also have a bit of a curve in her spine, not bad, but then about mid back it divets a little. There's about a 2" section where I can't feel her spine at all because it scoops in,.. does that sound like something?? And I don't know if it's just really bad posture, or if it's something, but her shoulders both roll forward really bad,.. I tried to get her to stand straight, but I couldn't seem to get her to,.. And, her left shoulder blade sticks out like it's poking out,.. the shoulder blades look even, but the one just really juts out. Anyway, Shriner's wants to see her, too.

I looked even more closely at my oldest last night by turning out the lights in the living room and then looking at her under a lamp so she was lit up, but the background was dark,.. it really helped to be able to see her curves so much better, and I was shocked. She, too, has the left shoulder blade that juts out. They are uneven, and below the left side, her waist 'creases', but only on that side, as if that side is slumped down. When she bends over, and I look from behind, she has a large hump on the right side of the spine, and then her left side just drops off in a severe slope, like she's twisting. From the side and front, I can see and feel how bad her ribs are sticking out,.. way out past her breastbone, like her whole rib cage is being thrust upward. I almost feel sick that I haven't noticed just how bad this is before this, except that her hair is waist length and that's how she wears it most of the time,.. most of her body is disguised by her long hair so I guess that's something I need to remind myself.

Anyway, thanks again for letting me know about Shriner's, too,.. they want to see all the girls, and reassured me of everything about the process. They encouraged me to take pictures from all the different angles and views for each of the girls to send in with the applications, and also let me know to prepare for about a 2-3 week wait on processing, but that I should call to check the status after 1 week. They're being so great!!

I would love comments from everyone on what I've described for each of my daughters here, too,.. if any of it sounds familiar in a way that you could help enlighten me on it. I'm still trying to educate myself on everything as much as possible,............... My girls are all twisted up, and I didn't even realize it, but now that I do and I know more about this, I'm not going to be passive with these other doctors' 'opinions' anymore. Shriner's here we come!

[nikyergen]

Butterfly,
Here's the good one. All three of my daughters have scolioisis and/or kyphosis too. Shriners didn't want to see just one, they wanted to see all of them. Let me give you a good piece of advice. Take at least one adult with you, possibly two. That way each adult can be assigned a child and can listen more intently, instead of you trying to listen on all three and sort it all out in the end. Be sure to ask for a typed transcript of the diagnosis and appointment. It will help you to decifer what is going on.

Shriners are wonderful people and I am proud to be part of that community. When you go for your appointment you will see kids that don't show any signs of a problem to kids that are very severe. They take treat of all of them with the same love and care.

When it came to Crystal pre-op appointment, Dr. Krajbich talked directly to her. He asked her what her questions were, what scared her, what made her the most nervous, what she expected the outcome of surgery to be, etc. Then the Anesthesiologist did the same. Then the variety of nurses that would be caring for her before surgery and in the recovery room did the same. Craig and I just sat and listened and watched. After each one was done with Crystal, they would ask if we had any questions, etc. They really worked hard at making Crystal comfortable.

I think you will really like your experience at Shriners. We did.

Don't feel guilty for not noticing your girls backs. It isn't uncommon to be missed by the parents. We missed ours and were shocked to find out all three of them had scoliosis and/or kyphosis. We felt guilty for a while. But, then realized that it wasn't our fault and that they were being treated now and that was what was important.

Let me know if you have any more questions.

Nikki

[Butterfly_8t8]

Thank You

Thanks, Nikki,

I really appreciate your support. I'm not sure if I can pull off taking other adults with me, but I like the idea,.. at the same time I feel like I really want to be there for each of my girls' exams, etc. Do you know if I have to take them all at the same time, or will Shriner's be willing to make individual appts for them? I don't mind making separate trips even if I need to in order to do that. I'm pretty attentive and usually have questions about things as we go along, and the only two people I could ask about accompanying us, I don't know if one even could, and the other, well, is not attentive so I would feel like I was missing things even more so. I don't know who else to even ask,.. I don't really have anyone like that. I'm pretty much on my own here for the most part,.. neartest family is at least an hour in each direction, and most work (luckily, I work from home so I can homeschool, etc., too, and it makes my schedule pretty flexible.),.. I really only even get to see my DH when he comes home on weekends. Do you think I can do separate appts for the girls so I can be in on EACH of their exams, etc.?

Thanks for the note on requesting copies of the transcripts, too,.. even if I can be in each appt., I'll want to get those,.. I don't think anyone can manage to digest all the information that can come at you. I know it's good to try to take notes, or take someone with you just for an extra pair of ears,... I might be able to get one person for that, but I would still rather it was both of us, rather than me miss anything.

Thanks again so much for all the info,.. you have no idea just how much I appreciate it, Nikki,.. THANK YOU. (((HUGS)))

[Joe's Mom]

I live in PA. Our state has a program call "Medical Assistance based upon Disability" (Sometimes referred to as the "Loophole" or "Loophole Child". What it consists of is Medical Assistance Coverage (Medicaid) for children with certain handicapping conditions. The conditions covered are many and scoliosis is among the more severe of them. What happens is that, regardless of your financial status, if your child has a handicapping condition, he or she is able to get this secondary coverage. Your primary insurance coverage is used first and whatever isn't covered (through copayments or % payments or just amounts not covered for whatever reason) is then billed to the State. Sometimes they make a payment for the services (if the insurance company payment still falls under the "allowed" amount for the service, MA will pay up to the "allowed" amount) but more often it just means that the hospital or provider simply can't go after you for any extra that isn't already covered. Not a great deal for the hospitals or providers, but it does help families.

I have begun the preliminaries for my son, who may well need surgery this year. Our insurance has a 10% payment we much make, but it is capped at $1500 per individual and $3500 per family, thank goodness, but some just say you will be responsible for 10% or 20% or what have you.

My son is eligible until he is 21 years of age, so if he has surgery at age 17 or 18 this program will defray our expenses considerably.

Not sure what other states have this, but you may want to see if your states do as well. Sometimes it goes under the name CHIP.

[nikyergen]

Butterfly,
You can make separate appointments for each daughter. The only reason we do ours all on one day is because of the distance we drive.

I have to chuckle, we homeschooled our 3 girls up until last year. They wanted to go to high school and be more involved in the community. So, we let them and they are doing so well.

I don't know what your DH does for a living, but mine travels too. So, know what you mean about seeing them only on the weekends. He drove our semi-truck for many years, now he works for Eagle Freightliner here in LaGrande and travels away from home 4 days a week. I start a new job with Trebar Kenworth in Ontario, Oregon, on 3/6/06. Which will mean a move for us. But, my husband's job gets to move with us, so it makes the move much easier to take. This move does mean that we will see more of my DH.

I'm glad you used the info. I find that there are so many people that are uninformed about Shriners and don't know all the facts. I think you will like your experience at Shriners. It can be pretty intense, but with the transcripts, it will help.

Well, I better get. I have a few things to finish up this afternoon and a meeting to go to this evening. Keep me posted on how things are going.

Nikki

[Butterfly_8t8]

Joe's Mom,

Thanks for the info,.. actually, we do have the CHIP program here. I checked it out a couple of years ago when my youngest daughter became symptomatic of her Neurofibromatosis. We didn't qualify because we already had health insurance. Here, I was told, we would only qualify if we didn't have any ins. We had insurance, but it wasn't enough to handle her medical needs,... our out of pockets nearly ruined us. We're okay now, and because of our business, we were able to choose excellent coverage for both ourselves and our employees. I'm actually working on tryng to start up a non-profit to help other NF families who are in the same shoes we were,.. our income was too high, we already had insurance, and even though we didn't hardly have any debt aside from our mortgage & utilities, we couldn't keep up. We had 47 separate medical bills at one time just for my youngest, and were eating top ramen just so I could fork out $1000./mo. on making minimum payments to only half of those accounts, and I still had collections beating down my door telling me I was being irresponsible by not paying all the medical debt off. The nerve! Anyway,.. thank you for the info,.. unfortunately, out here it seems like you have to be eating catfood in the dark before you qualify for help,.. if you have good income and ins anyway,.. well, except for my now knowing about Shriner's. I honestly don't think people should have to loose everything before they are eligible to receive help,... thankfully, we got help from our community because they felt the same way.

Good luck with your son,..... I hope everything works out great for him & your family, too. (((hugs)))

[Butterfly_8t8]

Nikki,

Thanks,.. I was hoping that was the reason you did them all at the same time,.. La Grande is quite a drive.

My DH doesn't travel, but our company is based an hour away. Funny, we used to live in that same town,.. the area was a better choice for basing our business. We relocated down here for a new job he had taken,.. after he had commuted for a year, and then after that got old, he stayed down here and came home on weekends,.. that got really old and 9 months later we decided to move here. He had job security. Well, a year later, apparently not, and since he was the highest paid employee and had actually just been promoted with a good raise less than 2 weeks before,... Well, long story short, 3 newbies replaced him at minimum wage. All of this right in the middle of the financial medical mess I just mentioned to Joe's Mom above... In many ways it ended up being a bigger blessing in the long run because we managed to get all the rest of the medical bills written off, and because of people in the community, we made it through all the hard stuff. Then,.. 7 months later, we started up our own business, as his former employer's ONLY competition for the entire state, and there's not much else in the surrounding states,.. was a great move on our part. But, now the kids & I are stuck down here and we're only seeing him on the weekends again until we can relocate back to where we came from, LOL. It's a struggle getting a company off the ground, and we are really learning why they say that growing too fast can be just as dangerous as not growing fast enough,... we're fighting to keep up with demand, and juggle everything else,.. such as me, running administrations (A/R, A/P, H/R, Payroll, Marketing, Website, the whole 9 yards) from a home office here so I can keep homeschooling, and everything else I'm supposed to try to do, and he's up there working 14-16 hour days, and doesn't include drive time because he's actaully living there during the week. We do have 2 full-time techs and 1 part-timer, but it's not enough. We really need to hire at least 1-2 more FT guys,.. we just aren't in a position to quite afford them yet... part of that is also due to our choice to provide the best health insurance we could find,.. not just for ourselves. Our business is only 8 months old, and is doing incredibly well already, but we're hanging on by our fingernails to keep up right now. Anyway,... we have to wait things out awhile before we can relocate again, and we're trying to prepare to buy the building & property that we're leasing,.. a year and a half left.

I'm glad to hear that you'll be seeing more of your DH,.. have to say, I'm a bit jealous, LOL!

How long did you homeschool your girls? I've been homeschooling mine since the start,.. but mine are still fairly young. The oldest is 9 1/2 and in 4th grade, middle is 8 and in 2nd grade, and the youngest is 6 1/2 and in kindergarten. With all the medical problems in our house, it's been good, too,.. the younger two have had a more difficult time obsorbing things. They're doing a lot better this year though since their other medical conditions have eased up on the pain side of things for them.

Goodness,.. how much of my life did you want to know,.. right, you didn't really ask, did you? LOL,..

I'll catch everybody after our genetics screening tomorrow,.. have a good night!

[nikyergen]

Butterfly,
I was just surpised we live in the same state, you are from the area I grew up in, and that we have done some similar things with our kids.

We actually started our kids in public school, but didn't like the out come. One of their teachers told them that mom wasn't going to be there all the time and that she should just quit relying on mom when she has a bad day. Wrong thing to say to my kids. Pulled them out and homeschooled them for 6 years. Our are almost 14, 15, 17. However, the public school they go to now is incredible.

Anyhow, I did enjoy reading about what you do. I find it interesting that you are forming a non profit for NF. I think that is wonderful. I can't imagine having all that you have to deal with. You are one busy wife, mom, lady. Keep up the good work.

Let me know what you find our from Shriners. I am anxious to hear when you have an appointmnet. Crystal and Michelle have their next appointments April 27, 2006. I probably won't got for that appointment, dad will. Starting a new job, I don't feel comfortable asking for time off. Dad will probably also go when Dr. Krajbich gets Crystals foot surgery schedule. That will be three or four days. His boss works work things in for him, so then he doesn't have to use his personal leave or vacation leave to go. Which I think is so nice.

Well, I better get. I have lots to do today. Tomorrow is Friday and I hate being tied to housework on Friday. The girls only go to school half days on Friday and we usually go to town in the afternoon and window shop.

Nikki

[Butterfly_8t8]

Well, today's appt. turned up with no NF for either of the two older girls, and they are still "on the fence" about me. The youngest is an absolute "yes' on the NF, which we already knew.

The genetist checked out all three of the girls' backs, and confirmed all of my new findings,.. every single one, and then some. The girls also are uneven in their shoulders and hips,... and after looking at me, too,.. says I have exaggerated Lordosis, for sure, too, and that my shoulder's are uneven also. Well, finally somebody gives me an explanation for my back pain after all these years. She checked out some other stuff for us, too, but most importantly confirmed all my 'findings' on all three of the girls... they all have scoliosis, in various different ways, and the oldest is definitely the worst twisting in all directions. She agreed that all three girls need to see an orthopedist right away, and is going to get us that referral. She's concerned about whether we'll actually get into Shriner's,... My thought is, "well, if you'll give us the referral,.. all I care about right at the moment is somebody who specializes in pediatric orthopedics actually seeing them.". I just want my kids taken care of before this has a chance to get any worse,.. or much. So, she's going to work on getting us the referral to see a pediatric orthopedic surgeon thorugh Kaiser, and meanwhile, I'm still going to file tha apps with Shriner's, too. Might as well cover all my bases... she may have just been being skeptical becasue she didn't approve of me trying to go outside of 'the circle', too,.. I know it sure seems like they are concerned about keeping patients on their own 'turf' as much as possible. I am already finding a lot of both pros and cons with having KP for ins.

Anyway, it's been a long day,.. 3 hours in genetics today, on the road 3 hours, misc other erronds we had to run, and I barely slept last night. I didn't get to bed until 11:00 PM, then woke again at 11:30 PM, 12:30 AM, 3:30 AM, 4:00 AM, 4:30 AM, 5:30 AM, and again at 5:50AM,.. my alarm was to go off at 6:00 AM so I just got up. I'm absolutely wiped out, and it's not even 9:00 PM here yet.

Hey, good luck with the new job! Thanks for all the support, and for the extra 'chatting',.. it's been really nice for me. I sure don't get enough of it. I'll keep you posted on things as we learn more. I'm so glad I found both of these support boards.

(((hugs)))

[nikyergen]

Butterfly,
Your doctor obviously hasn't been educated about Shriners. You will get into Shriners without a doubt. They don't refuse anyone. Why she would think you wouldn't "Get Into Shriners" is beyond me. If we got in with our girls, you will most definitely get in with ours. You obviously use Kaiser, which is a good insurance. However, they absolutely hate for you to go outside their system. Why I don't know. When I had Kaiser, I was very displeased with any medical care I got.

Hurry and get your apps into Shriners, time is of the essence. Give them a phone call, they should accept the apps over the phone. Lots of people do them over the phone. Everyone from millionaires to those that can't afford the gas to drive to an appointment. It doesn't matter. I am sorry I sound so harsh. I just get very tired of the uneducated assumptions people make about Shriners. They have no clue how Shriners operates. It has nothing to do with the parents income or anything. It has to do with an orthopedic problem that needs to be treated by the best doctors in the world. It's doctors like the one you saw today that prevent children from being seen by the best doctors in the world. You only want someone with lots of experience in your childs particular problem working on them. Too many kids get treated by someone that has done minimal work in the area they have a problem in and then have a lifetime of problems. I'm telling you this from personal experience. We trusted to many doctors. The best doctor we saw would only recommend our kids to Shriners. If we requested somewhere else, he would recommend it, because SHRINERS IS THE BEST.

You do not need your doctors recommendation to get into Shriners. They are not by referral only. Many people take their children there for a problem that hasn't been seen by any other medical person.

I am so frustrated with someone that would tell you that they doubt you would get into Shriners. That is so untrue. Please don't give into the Kaiser system. Please have your children seen at Shriners. You can see the doctor at Kaiser too. But, at least use Shriners for another opinion. It won't cost you anything but the gas from Salem to Portland and back. You won't get a bill for their opinion. I'd love to educate the doctor you saw today about Shriners. Then, she would probably readily do referrals to Shriners. Please trust me on this one.

Our doctor at Shriners, Dr. Krajbich is one of the leading surgeons in the world for pediatric orthopedic surgeons and scoliosis/kyphosis/lordosis treatment. He teaches these surgeries all over the world. I don't think we could of got much better than that. You probably won't get into him, but all of the doctors that work with him are very good to. We did see Dr. D'Amato twice and really liked him too. I would of felt complete comfortable with Dr. D'Amato treating our girls too. We requested Krajbich and had to wait for a while to get into him. You will get in much quicker with one of the other doctors. We requested Krajbich because Crystal has more than scoliosis/kyphosis to deal with orthopedically. She has to have surgery on her feet within the next 3-4 months. So, we anxiously are waiting for them to call us with a date for surgery. It may take two surgeries to completely get her feet done, but it's worth it. Dr. Krajbich is going to try to get it all done on the first surgery. It will just depend on how things go during surgery.

I am sorry I was so pushy, but your doctor doesn't realize that you don't have to have a referral to get into Shriners and they don't turn any child away. It is not Shrine Hospital for Crippled Children. It is Shriners Orthopedic Childrens Hospital. The reason for the name change is because of people like me. It had the word Crippled in it. In my eyes, my children weren't Crippled. But, yes, all three of my children have orthopedic problems. I didn't think we would get in either. But, we did and I am glad. Now, I had all this doubt and my husband is a Shriner. There had to be a lot of educating on me. Now, I understand the whole thing and get upset when someone gets discouraged from using Shriners because of someone else that is not informed.

I enjoyed my chat with you today too.

Nikki

[mariaf]

Hi Butterfly,

I just want to say that I agree 100% with everything Nikki just said (Hi Nikki). My son's former doctor was also uneducated about Shriners and, if we had listened to her, my son would have been prevented from seeing one of the best doctors in the Northeast at Shriners Hospital, Philadelphia.

(By the way, I know many, many people who called and applied right over the phone. The only two crieteria to be met is that the child be 18 or under (existing patients may be seen until age 21 in come cases) and that the child have a condition that is treated at Shriners Hospitals).

Our former doctor called the stapling surgery my son had performed at Shriners "experimental" and blew it off without so much as a second thought. Well, thanks to that "experimental" procedure David no longer spends 22 hours of every day in a back brace and is getting, in my opinion, the very best care we could find for him ANYWHERE. Period.

It gets me so angry when doctors, either because they are uninformed or perhaps afraid of losing patients or whatever, discourage people from applying to Shriners. I know so many people who found Shriners care superior to the care they were getting before. (I guess Nikki and I will have to fight over the title of Shriners No. 1 Fan - LOL!)

We happen to be middle class, working people - lucky enough to have medical insurance. We could go to just about any doctor in NY if we wanted but choose to travel nearly 3 hours each way to see the docs at Shriners. Speaks volumes, doesn't it?

Good luck to you Butterfly. I would call Shriners right away - if you haven't already done so.

take care,

[Snoopy]

I know we have an excellent doctor for Jamie, but the more I hear about doctors not wanting their patients to go to Shriner's, or doubting they will get in Shriner's etc., the more convinced I am that Jamie is in excellent hands with Dr. Segal. When we went to our first appointment with him, we had just seen Dr. Betz the month before. When Dr. Segal saw that, he asked why we were there? Why weren't we staying with Dr. Betz because we were in excellent hands with him.

It's reassuring to know at least some doctors are for Shriner's.

Mary Lou

[mariaf]

Mary Lou,

Yes, I recall you telling us that Dr. Segal said that. And, I agree, that would make me very comfortable with him. It shows that he is secure (rather than egotistical), open-minded and well educated in his field.

There should be more like him!

take care,