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Saturday, July 14, 2007

more feeding issues....

I posted the link to this CNN clip on Feeding Disorders below in my previous post, but I thought it might be really helpful/interesting for those of you who don't understand how a child refuses to eat, (so I'm pointing it out again):

http://www.kennedykrieger.org/video/cnn_feeding.wmv

Keep in mind the child in this clip is 10....That is what my future will look like if I can't get Kaitlyn to eat soon.

..........................

My friend Lisa B is amazing!!!

Not only did Lisa help me edit the previously posted letter (I posted it before her edits, it's much better now). She spent hours on it, and then she proceeded to help even more by writing the following.... Lisa said she teared up writing this, I know I teared up reading it.....

Thank you Lisa from the bottom of my heart.

To Whom It May Concern:

I am writing independently in support of Liz McCarthy’s appeal to have her daughter Kaitlyn’s feeding therapy covered by her insurance through Blue Shield of California (Brown & Toland Medical Group).

I am a physician in San Francisco, California and I am also a mother of two sets of twins. I heard about Liz through the San Francisco Parents of Multiples Club and I was incredibly moved by her story and her twin girls, Kaitlyn and Corinne. Shortly after their birth (and the tragic death of Corinne) I discovered that I was pregnant with another set of twins (two girls). As I prayed that my own girls would be healthy, I prayed for Liz and for Kaitlyn who was born at 26 weeks gestation.

I continued to follow the story of Kaitlyn and her brave battle in the same Neonatal Intensive Care Unit (NICU) where my first set of twins spent their first month of life. Kaitlyn endured far more than my children (and most children) did but she is clearly a fighter and she survived to come home from the hospital months (and many surgeries and procedures) later. I’d never met Liz or her family but their incredible ordeal was compelling to me.

Months later I delivered my girls prematurely at 34 weeks and, quite ironically, my littlest baby M had some of the same (but much less severe) gastrointestinal problems that Kaitlyn has. M was in the NICU, and then had trouble eating and digesting food, and was eventually tube fed.

Liz heard about my struggles, emailed me and phoned me, then spent hours supporting me through the unbelievable challenge of caring for a child who cannot eat. She was unbelievably helpful and seemed to know more about pediatric feeding disorders than most of the physicians I consulted. Liz and I finally met and I understood where Kaitlyn (and Corinne) got their strength.

I would do anything to help Liz and Kaitlyn and I am hoping that this letter will further encourage the powers that be to cover the costs of Kaitlyn’s feeding therapy.

As a physician I am well aware of the indications for and complications of tube feeding. I have seen first-hand what patients endure with repeated surgeries for gastrostomy tubes, nutritional deficiencies, failure to thrive, overwhelming systemic infections, and even death. The costs associated with the care of a tube-fed patient are high and can be astronomical with any
(common) complication. The psychological toll that this takes on the patient and the family is immeasurable.

As a parent I know that having a child with special needs is exhausting, expensive, physically and emotionally draining, and heart-breaking. Kaitlyn has a chance to be a normally eating little girl with the assistance of Dr. Meeta Patel and her Clinic 4 Kidz. Kaitlyn, in my professional and personal opinion, has a severe medical condition and feeding disorder which is amenable to treatment but only with intensive therapy such as Dr. Patel’s group provides.

I have met Dr. Patel and reviewed her procedures and publications and I strongly believe that her services will enable Kaitlyn to eat. I also believe that the relatively small cost of this feeding therapy compared with the costs of long-term (and possibly life-long, if the issue is not addressed soon) tube feeding.

By the grace of God, my daughter Mis now off her feeding tube and is eating orally. She was treated by the same group of therapists and many of the same gastroenterologists who saw Kaitlyn. Fortunately, M medical issues are much less severe than Kaitlyn’s, as Morgan had 8 more weeks in utero. If M was still tube fed I would have her treated by Dr. Patel at the first opportunity (particularly since Dr. Patel has a contract with Kaiser).

I am hopeful that your department will be able to assist Liz and her family in getting this critical treatment for their daughter so that she may have the best start in life. Please feel free to contact me at the addresses or phone number above if I can assist in any way.

Thanking you in advance for your consideration, sincerely,


Lisa Ann S. B, M.D.

4 comments:

skeybunny said...

I am not looking forward to the time I have to fight this same battle with our insurance company for Evan. He still has a ways to go in improving his swallow before being considered "safe" to eat orally...then we can think about a program like Dr. Patel's.

I have had similar arguments with our insurance: trying to get them to pay for home nursing, pay for more than $5000 per year in durable medical equipment, pay for more than 20 outpatient therapy visits per year (Evan sees 3 therapists per week--doesn't take a genius to figure out 20 visits doesn't last very long). I've determined that the whole purpose of "Case Managment" is to just take longer to say no.

The problem is that the people hired to handle these cases have never lived it--they don't know what it's like to be physically exhausted taking care of a special needs child, they don't know what it's like to dream about how amazing it would be for a child to be able to eat a meal by mouth. And the ones I have encountered don't seem to have much ability in the ways of empathy either.

I don't expect our insurance to pay for everything, but our contract says we have $2.5 million in coverage for our son. I have faith that Evan will max out his benefit, and it drives me crazy that the insurance company makes up all these rules to micro-manage how we spend the funds getting there.

I wish you luck in your appeal, and have nothing but empathy for what you are going through.

Laura said...
This comment has been removed by the author.
Jodi Donnelly said...

Hi Liz,
Thinking of you and your beautiful daughter. I wish I were closer and could give you more than e-support. Will you be able to get K into Dr. Patel's therapy if you can't get your insurance to cover it? I'm sure you'd get a lot of support if you were to hold a benefit...I know you have a lot of preemie/MOM/feeding group/PROM friends that would likely be willing to give a little. A friend of mine is raffling a quilt for her son's medical bills.

Sending you virtual hugs,
:) Jodi from PROM
www.carepages.com
Login: anthonycdonnelly

Laura said...

I want to apologize for posting the "8 random things about me" tagging thing on your blog. I got the idea from Billie's blog (another Mom of special needs children) and thought it would be fun to send to blogs that I follow/keep in contact with. However, as someone pointed out, it was somewhat insensitive to post it to a blog of someone who is going through difficulties. I did not mean to bother you or offend you. I have been following Kaitlyn's story for the past year and even donated $20 to the March of Dimes in her honor. Theefore I considered you somewhat of an online friend. I've always had an interest in preemies because my Dad, my cousin, and several of my friends were premature, some of them microreemies under 2 pounds. I am well aware of the long term disabilities that can result from prematurity. I removed the post and I'm going to be more careful in the future.