This is my life.....

I decided to post one picture in the meantime.....From Lake Tahoe 4th of July Vomit Fest week. (this picture was the first day of the vacation, before she lost 1 lb from vomiting 7-10 times a day for a week).

OK, I had to post one more picture....Look at my beautiful beach babe! She's worth it all!!

If you've been wondering why it's been SOOOO long since I've posted....here is a clue. The letter below is one of MANY I've had to write to TRY to get get Kaitlyn into a specialty feeding therapy program that is PROVEN to help children....and have it be covered by my insurance....

Battling my insurance company (Blue Shield of California) has become a full-time job - ha, don't forget the fact that I do have a full-time job. Why haven't I posted in a while....well, I hope you understand (but I promise I have some amazing pictures and videos to share when I can finally get around to it!)

What is our country coming to? We have some of the best medical teams out there, but when it's not main stream and no one knows of our plight, we are left to fend for ourselves. I feel really sorry for those families who don't have the ability or the time to deal with issues like this. I don't know how many hours of my time this has taken.

I'm about ready to contact the media...Take a look at this CNN link that describes a bit of what my life is like. Why are we (families with children with feeding disorders) not understood?
or helped? http://www.kennedykrieger.org/video/cnn_feeding.wmv

I am so tired of the following questions/comments:

1. Wow, she's still NOT eating.
2. Just try putting sugar, chocolate, fruit, (you name it here) on your finger then she'll taste and want to eat
3. Oh, my child is a picky eater too
4. Oh, my child spit up a lot but grew out of it
5. You mean she doesn't eat anything by mouth, how can that be?
6. She'll grow out of it
7. Just have K watch my child eat, then she'll want to eat
8. Have you tried.....(put in your choice of foods here)


We'll here is the letter that I'll be submitting tomorrow to the Department of Managed Health Care, Independent Medical Review, (the governmental agency that oversees HMO's).

Now, don't get me wrong here, I have to honestly say that I have been extremely, extremely please with our insurance up to this point. I know that my daughter has had top notch medical care from the moment she was born (I can't say that my AMNIO was top notch)....and I'm sure her hospital bill was well over $1,000,000. Why in the world are they quivering about $15,000???? Especially when in the long term that $15K would likely save them more than that in all of the medial supplies, formula and nursing we would no longer need them to pay for??

Maybe I should start a foundation to get children into feeding much needed feeding therapy programs like this...(my daughter being the first beneficiary).

It makes no sense!!!!!

(some details have been omitted to protect privacy)

July 13, 2007

Department of Managed Health Care
HMO Help Center
IMR Application

RE: Kaitlyn McCarthy

Dear IMR Team:

I am writing to ask you for much needed help in facilitating approving Pediatric Feeding Disorder Therapy coverage for my daughter, Kaitlyn McCarthy.

My daughter (a micro preemie, surviving twin born at 26w6d gestation) gets all of her nutrition by feeding tube (g-tube) and has a severe Pediatric Feeding Disorder. In this letter I will only briefly go into her medical history, as this is all attached to this fax.

My daughter was released from the NICU at 1 month adjusted with an NG tube. G-tube was surgically inserted 3/06. She has spent her entire life with multiple emesis’ daily (up to 20x a day). She has a paralyzed vocal chord from her PDA ligation surgery while inpatient the NICU. She has been fed 100% via feeding tube since release from the NICU. She currently has severe oral aversions, refuses to take 99.99% of any food orally, doesn’t know how to swallow food or know what to do with it, and often vomits/gags when food is in her mouth. We have tried weekly feeding therapy for 7 months by Kate Hemlock (paid for not by BS but my the Golden Gate Regional Center (a federal program for children at risk of disabilities).

Here is a description of Pediatric Feeding Disorder:

Feeding Disorders
A pediatric feeding disorder is diagnosed when children fail to consume an adequate quantity or quality of solids or liquids to sustain growth. Feeding disorders are fairly common in infants and toddlers, with approximately 25 percent to 40 percent of these children experiencing some difficulties with feeding. The incidence of severe feeding problems has been reported to be even greater—as high as 80 percent—in children with severe to profound mental retardation. In fact, the number of children affected by feeding disorders is growing because medical advances have reduced the mortality rate of children born prematurely, a population especially at risk. Feeding disorders typically develop for several reasons, including medical conditions (food allergies), anatomical or structural abnormalities (defects of the palate), and behavioral mismanagement (e.g., early or delayed introduction of solid foods, excessive parental anxiety during meals or delivery of inappropriate consequences for food refusal). In most cases, no single factor accounts for a child’s feeding difficulties. Rather, several factors interact to produce them.Awareness of risk factors and clinical presentations of feeding disorders, combined with appropriate referrals at an early age, will produce the best outcomes for children and their families.

We have requested Intensive Pediatric Feeding Therapy from Dr. M Patel, (http://www.clinic4kidz.com/). Blue Shield (BS) and our medical group, Brown & Toland (B&T) have continued to deny all requests for this therapy. Dr Patel offers a very specific therapy that very few national providers offer. She has a long-track record and has published many medical articles on the subject. (I have not included a copy of her resume to this fax, as it over 15 pages long.) If you would like a copy, either contact Dr. Patel directly, or let me know and I can forward it to you.

If you are not familiar with Pediatric Feeding Disorders (as most of the medical and general public don’t understand that eating orally is not “instinctual”, here is a CNN news link that helps explain Feeding Disorders: http://www.kennedykrieger.org/video/cnn_feeding.wmv

The only other option besides Dr Patel is a multiple moth-long, more expensive in-patient feeding therapy program at Kennedy-Krieger (KK) in Baltimore http://www.kennedykrieger.org/kki_cp.jsp?pid=1574 . Dr Patel received her training at KK. Dr Patel’s program is unique as she works in the home, the natural environment where the child will be fed there day to day meals, whereas in the KK program, after the child comes home, the parents still have to learn how to feed the child.

They wrote in their denial letter to me: “The principal reason is that your medical group can provide appropriate services for your medical condition with in-network providers and facilities.” The secondary reason is due to questionable medical necessity. Per BS and B&T request, I was able to schedule an urgent appointment with CPMC (our in-network provider). They concurred with the rest of Kaitlyn’s medical team that they (CPMC) cannot provide the needed services and that only a provider such as Dr Patel trained in Pediatric Feeding Disorders can provide these intensive services.

This newest evaluation was sent to B&T and they are still refusing to cover Dr Patel’s services for my daughter. I do not have a new denial letter (this was told me verbally by B&T case worker on 7/5/07), as they said the original denial letter still stands (dated 5/20/07). B&T current stand is that my daughter’s disorder is “behavioral” so it is not a covered medical benefit. (Note that Kaitlyn’s entire medical team states that her disorder is medical in nature).

Just last week over the 4th of July holiday, we visited Lake Tahoe for our first vacation since my daughters’ were born - Kaitlyn was back up to vomiting 6 times a day. How can this be behavioral I ask? As quoted from the description of a Pediatric Feeding Disorder: “Awareness of risk factors and clinical presentations of feeding disorders, combined with appropriate referrals at an early age, will produce the best outcomes for children and their families.”

My BS EOC Benefit Plan booklet states: “When no Plan Provider is available to perform the needed service, the Personal Physician will refer you to a non-Plan Provider after obtaining authorization.”

All of the letter’s from Kaitlyn’s medical team concur that there are severe long-term consequences from delay of treatment for her feeding disorders:

From CPMC feeding clinic, “Developmentally there are windows of time where children are more open to being shaped for weaning and it’s important to take advantage of these “windows.” It is therefore recommended that Kaitlyn receive intensive daily in-home therapy that can provide medical management of Kaitlyn’s reflux while developing effective treatment methods the parents can incorporate into their daily routine.”

From her PCP, : “She has failed to progress despite all the wisdom and experience that has been tapped by…”numerous Pediatric GI, who are on the B&T panel.” It is medically necessary for Kaitlyn to try the approach to feeding aversion offered by Dr Meeta Patel.”

From her Feeding Therapist after weekly visits over 7 months: “Due to the developmental window that is very important for children to acclimate the orally sensory system to accepting different types of foods, and textures, it is very important that Kaitlyn begin to accept food consistently..

From one of her GI Doctors: “Given her limited progress despite such intensive therapy to date, I feel that with her underlying medical conditions she requires a higher level of intervention. …her feeding difficulties will only worsen with time if not corrected at an early age and she will remain G-tube dependent for years to come. Therefore I would like to pursue any and all avenues to achieve our goal of weaning Kaitlyn from her G-tube feeds.”

The Medical profession is very quick to insist that children with feeding issues go under the knife to have feeding tubes inserted. Although these tubes allow the child to thrive, they in turn cause significant long-term feeding issues, as the child never learns to eat orally or to feel hunger.

I feel my insurance is denying my case partially because they know once they approve Dr Patel for my daughter; they will have to approve her services for other tube-fed children that are in a similar situation.

As a side-note, Dr Patel is currently under contract with Kaiser, as they determined that they do not have an in-network service that offers the same therapy as Dr Patel’s program. I know for a fact that Kaiser has approved other patients to see (with success) Dr Patel’s program.

In addition to loosing a child and all of Kaitlyn’s prematurity-related medical issues, therapy and doctor visits and the strain it’s put on my family, a 100% tube fed child is extremely difficult situation to manage. I cannot main-stream my child in any child-care providers or schools. I cannot have family members give us a break. My husband and I never get a break from her care. We are a two income family. Needless to say, the stress of having a tube-fed, vomiting child is indescribable.

Putting aside the fact that having my daughter eat orally like a normal child would be a life-changing event for my family; my insurance currently covers feeding tube supplies, formula and nursing expenses. If we can get my daughter off the feeding tube, the long-term savings for BS would be substantial.

My daughter is due to start Dr Patel’s intensive feeding therapy program on 7/16/07. As indicated above from Kaitlyn’s medical team, the longer her treatment is delayed the worse her situation will likely become. I too feel it would be detrimental to delay this treatment.

Thank you for your review of this issue. I can’t tell you how many endless hours I have spent on it, as you can tell by this comprehensive packet of information I am attaching.

Feel free to contact Dr Patel, any of Kaitlyn’s medical team, her case worker at B&T or myself if you have any further questions. I look forward to your assistance in this urgent matter.

Regards,

Liz McCarthy
Mother to Kaitlyn McCarthy

Attachments:

IMR Application
This cover letter dated 7/13/07
Kaitlyn McCarthy Discharge Summary (NICU)
List of current Physicians
Letter, 5/10/07 to Brown & Toland from Liz McCarthy
Brown & Toland Service Denial – 5/20/07
Letter, 5/23/07 to Brown & Toland after first denial from Liz McCarthy
Letter, 5/24/07 from Dr. R, GI, UCSF
Letter, 5/24/07 from Dr D, PCP (I don’t’ have a copy of Dr D's original request for this service)
Consultation Note – 9/14/05 from K, Speech Pathologist
Progress Note – 5/25/07 - from K, Speech Pathologist
CPMC – NICU Developmental Evaluation 5/30/07
Blue Shield, 5/31/07 notice of request for appeal
Blue Shield , 6/8/07 - notice of denial
Evaluation Note – 6/26/07 – CPMC Feeding Clinic
Clinic4Kidz Feeding Disorders Program Overview
Clinic4Kidz Treatment Fees
Copy of email to Dr S, CMO of Blue Shield
Dr Patel CV is NOT attached. Please contact Dr Patel directly for a copy of her CV

Well, gotta go, it's midnight, I have to get up from the computer now to go fill a 60 cc syringe and push it in to my daughter's belly..... and then do it 2 more times, as I got behind her night-time feed sitting her for the last few hours writing this letter.

Ah yes, it's my life......