[karenB]

Does anyone have any information regarding any foundations that can help pay a child's medical bills? I tried two state organizations, but am not qualified for help. They base it on income rather than how much you owe in bills, and we owe quite a few adoption loans to make our little miracle happen. I'm looking for an organization that is not based on income... Caleb, our son, was diagnosed with severe positional plagiocephaly a week after bringing him home from Guatemala. Our insurance will not cover the treatment, and we have a long drive to get to the doctor. So, the gas is even adding to our expenses for his treatment. My husband is still in Iraq, and hasn't even seen Caleb yet. We're taking this one day at a time. If there is any information for any organizations that may be able to help us pay for the medical bills, please let me know. Caleb and I both thank you for any information.

[Clayton0122]

Hi Karen, The pics I have seen of Caleb are darling. He is growing like a weed. I know this must seem overwhelming for you. I wish there was somethign I could do.

Have you thought of contacting the shriners or Kosairs etc. Places like that sometimes have lower rates and also do things for free. They may also be able to help you in the direction of places to get grants etc.

I don't know if that is much help but I sure do wish I could do more. I will be praying that you get the help you need. I know that you all have been in my thoughts and prayers very often and I check your site often.

Is D. still coming home for a visit in June? I hope so. I am sure he can't wait to meet Caleb. I bet you can't wait for it either.

Well anyway, if you ever need to talk just email me or call. I am always here. Wishing you the best and praying for you all.

[DPline]

I have told you this before, but this just makes me nuts that the military insurance won't cover something like that! (Though I have known others who have had tons of problems with this insurance too.)

I am wondering if you contacted the Shriners Hospital in your state if they could be of any help. This is a little ourside the realm of what I believe they usually treat, but I would think it might be worth a phone call.

Edited to add: Oops! Mandy and I were thinking the same thing at the same time!

[jeannecr]

I agree with asking the Shriners. Also, you could contact your nearest children's hospital and talk to someone there.

As a last resort, you may be able to deduct these expenses on your taxes--doesn't help now but could give you some relief later.

Here's wishing good health for Caleb!

[karenB]

He's already set to get his helmet. I can't switch doctor's now, but when my husband comes home (which I'm told is sometime in July now) he said we'll check some Army organizations. I'm hoping to get it settled before he gets home though so he won't have to worry. I'll call shriners right now and see if they can give me any direction to go. Thank you!!! Karen

[tammy2]

Contact the cleft palate foundation who also deals with craniofacial conditions. 800-24-cleft. Even if there is no financial help this would be a great place to get tons of information and possible link you to some community resources that might be available.

[karenB]

Well, the Shriners said they do not help Caleb's type of medical issues. I asked if she had any contact information about other avenues we might persue. She gave me the St Louis Shriners phone number, but said they would say the same. Some let me know about a grant we can pursue through the military. I'm going to check on that and the cleft palate foundation next. Thank you for all your help.

[dawnrenee58]

Why has Tricare said they will not pay for this? My hubby was in the Navy for 8 years, he actually worked in Urology, and so I have had some experience with them. It can be wonderful to not have to deal with copays and medical bulls, but the bureaucracy can be so annoying!! My best friend was actually in the approval part of the Tricare office, so let me write her to see if she knows any ways to get around the system. She has been out for about 3 years, though, so I don't know how much she will remember!


If all else fails, write your senator!!!


Have a great day...with your baby!!!
Dawn

[karenB]

Dawn THANK YOU THANK YOU THANK YOU for asking your friend. If she get help me get some loopholes, please do. So, far everyone I've talked to that has tricare and had this problem has fought tricare and lost. Some have even written the congressmen and still tricare wouldn't budge. Tricare considers it to be "cosmetic" and "experimental". How they can consider this "cosmetic" or "experimental" is beyond me. Here's some plagiocephaly facts...

• Torticollis- Face turns to the right or left with a head tilt
  
• Misaligned ears
  
• Nose pushed to one side
  
• Unilateral cheek prominence
  
• Bossing of the forehead
  
• One eye appearing larger than the other.
  
  Head shape abnormalities are believed to cause:
  
• Migraines
  
• Temporomandibular Joint {TMJ} Syndrome
  
• Eyesight problems
  
• Severe Psychological Consequences
  

Also, Caleb, without treatment, will not be able to participate in any school sports that require head safety equipment. I'm seeing to it one way or another he gets the treatment, but its financially draining to do it. 3K total. I'm hoping for a grant or if your friend works out to let me know any loopholes to get his medical care paid for I'd be FLOORED. If it works, I can share it with other military families going through the same thing. Let me know. Thank you so much! Karen

[karenB]

PS So far Caleb has mostly the rear skull malformation, but the DR said without the treatment his face would start to malform too which later would require major reconstructive surgery of the face and skull. He has been diagnosed by 3 doctors with severe plagiocephaly. The helmet treatment will avoid future malformations from happening to Caleb. We adopted him early enough to catch it early and start treatment at a good time before his skull sutures have closed. The doctor said it would progressively get worse and to act on it now. So, we have. We pick up the helmet on the 25th, but I put it on a CC we can't afford, and we have four $280.00 monthly payments coming up with the doctor himself to check Caleb's progress and adjust his helmet etc as he's in therapy. So, that's where I stand. I hope your tricare friend will reply to you soon. Thank you.

[annaguat]

Hmmmm....Well that sounds like my DD. We saw the pediatrician as soon as we came home and he said she did not need it and it would not affect her face. We are scheduled to go in at her nine month check up in a couple of weeks. We are also in the middle of switching insurance and the new one will kick in June 1. Anna

Originally Posted by karenB

Dawn THANK YOU THANK YOU THANK YOU for asking your friend. If she get help me get some loopholes, please do. So, far everyone I've talked to that has tricare and had this problem has fought tricare and lost. Some have even written the congressmen and still tricare wouldn't budge. Tricare considers it to be "cosmetic" and "experimental". How they can consider this "cosmetic" or "experimental" is beyond me. Here's some plagiocephaly facts...

• Torticollis- Face turns to the right or left with a head tilt
  
• Misaligned ears
  
• Nose pushed to one side
  
• Unilateral cheek prominence
  
• Bossing of the forehead
  
• One eye appearing larger than the other.
  
  Head shape abnormalities are believed to cause:
  
• Migraines
  
• Temporomandibular Joint {TMJ} Syndrome
  
• Eyesight problems
  
• Severe Psychological Consequences
  

Also, Caleb, without treatment, will not be able to participate in any school sports that require head safety equipment. I'm seeing to it one way or another he gets the treatment, but its financially draining to do it. 3K total. I'm hoping for a grant or if your friend works out to let me know any loopholes to get his medical care paid for I'd be FLOORED. If it works, I can share it with other military families going through the same thing. Let me know. Thank you so much! Karen

[DPline]

One more thought Karen . . . Maybe your local Rotary? They are very involved in both local and international community service. May be worth another phone call.

Cosmetic and experimental - phooey! Having been through this with my older son and seen what can happen when severe cases are not treated, I am appalled. Yes, some cases are minor and cosmetic, but it can also cause serious medical issues if untreated in more serious cases. You are doing the right thing, even if Tricare is not!

[karenB]

Anna, How is your daughter doing now? Was she diagnosed with severe plagiocephally with secondary torticollis too? Curious because our doctor said Caleb's brain is only growing and pushing to the left and it would continue to malform to the front and even cause eye problems eventually as well as the malformation of his face. He was the third doctor to diagnose Caleb with severe plagiocephaly. I hope your daughter is doing well. Maybe hers was a very mild case.

[karenB]

Debbie, Caleb's is so severe, they are even checking his hearing next Monday. I feel in my heart his hearing is alright, but the doctor said it was best to get it checked because of the difference in his ear sizes due to the plagio. I can't for the life of me figure out how tricare can get away without paying for it. Especially when my husband is spending another year in Iraq fighting for our family and they can't insure us good.

[shellydm]

Hi Karen-
I PM'd you.

Shelly