15 Years

[flagbabyds]

_{so february 12 is my 15 year anniversary of being gluten-free! yayy!}

_{I need a good gluten-free cake recipe to bake tomrrow}

_{I know I won't be on here that day so I am posting now instead. I have a major test in AP us history on tuesday so this is being preamptive.}

_yay!

[Carriefaith]

Wow 15 years... That is an accomplishment!

Good luck on your test

[flagbabyds]

since i posted this a long time ago here it is again what my mom wrote for newsweek about my diagnosis:

What's Wrong With our Baby?

By Debbie Duncan

While much of the world watched the Olympice, my husband and i witnessed an event that gave us as much joy as any medalist's parents: our baby come back to life. Molly's symptoms had baffled her doctors more than 50 of them at a major university hospital, since mid-November. Why would an active and cheerful 17-month-old suddenly stop eating? Why would she stop walking and playing? When nothing showed up after three days of round-the-clock testing in December, we were sent home with instructions to pop a bottle of milk in Mollt's mouth first thing in the morning instead of breast-feeding her, to give her vitamins and not pick her up as much. Was this meager advice the best modern medicine could do?

Doctors' advice notwithstanding, I held her during ht eholidays as she continued to waste away. What was even more disconcerting was her behavior: she wanted nothing to do with toys, books, Christmas or her two older sisters. "No!" she yelled whenever the came close.

On Dec. 31, our pediatrician called at 7:30 a.m. She had been worried about Molly after seeing her the previous day, and had returned to the hospital to review the chart. One of the brain scans turned out to be cause for concern; she wanted us to see a neurologist is a nearby city as soon as possible. to check for brain disorders. Happy New Year?

"Molly's brain isn't the source of the problem," the neurologist announced 58 long and sleepless hours later. "She's obviously very ill, but she does not have a brain disease." My husband and I were positively giddy driving home that night. Molly wasn't going to die! Then we remembered we still had a sick kid on our hands, on who couldn't even hold her head up in the car seat.

Not knowing what was ailing my child had to be the most frustrating experience in my 38 years on the planet. Doctors, too, were clearld uncomfortable about being unable to come to a diagnosis for a 1-year-old who in two months had dropped from 23 to 18 pounds and lost all her body fat. Not that the didn't try: because Molly was so sick for so long, she continued to be poked and prodded, sedated, sliced and scanned in order to looke for what I started calling the "disease of the week." Different specialistes took turns chasing every possible lead:leukemia, mononucleosis, neuroblastoma(another childhopod cancer), infant botulism, neurmuscular disease( like muscular dystrophy), cystic fibrosis, heart disease and any muber of debilitating genetic disorders. While drawing her blood one Monday our pediatrician asked, "Should we add HIV to the list?" "Why not?" I replied over my baby's screams. I was numb. There were weeks when I actually wished Molly had cancer, just so she'd be able to begin treatment.

The next hospital stay, this time ion the oncology ward in late January, brought more "theories of the hour," but still no asnwers. It seemed as if everyone we knew had ideas to propose; we relayed every one to the doctors. Then finally, three weeks later on out thrid admission, with yet another docor's name on Molly's tiny hospital bracelet, I heard the magic words: "We have a diagnosis: celiac disease."

The doctors had not figured this out on their own, mind you. Just by chance, a colleague of my husband's (who's not a physician) asked if we'd checked for gluten inrolerance, a chronic disorder caused by a sensitivity to the protein found in wheat, oats, barley and rye. Though Molly did not have all the clasic symptoms(such as diarrhea0, I asked the docs anyway. New X-rays revealed demineralization of Molly's bones caused by malmutrition. An intestinal biopsy showed severe damage, causing her digestive tract to be unable to absorb nutrients. Ant another blood test?her 18th?found celiac antibodies.

HAPPY NOISES: ONce the doctors had a diagnosis, they were in familiar territory and could plan Molly's rapid recovery. She needed nutrition, but fast, so they pumped fats and other calories through a catheter inserted into the large vein leading directly into her heart, plus a special formula to her stomach via a tube running from her nose. Within days of beginning treatment she showed exciting signs of improvement. New noises?happy noises?came out of her mouth, her eyes were no longer sunken, she smiled 10 times an hour instead of once every six days and she toddled on her stiff little legs down the hall to physical therapy. Hospital staff who had seen me carry her over my shoulder all winter cheered.

Two months ago Molly's health seemed totaly out of our control; now amazingly, all she needs to thrive is to follow a gluten-free diet. We hope Molly is too young to remember the hell she went through before they found out what was wrong with her. Her illness was not without its costs, of course, and we (thank God) have mediacal insurance; I haven't asked our carrier how it feels to pay $100,000 for a food sensitivity. At home, work came to a stadstill, normal routines disappeared. Understandably, our other daughters felt ignored.

I doubt I will every understand why the doctors at the hospital didn't take out concerns seriously in cDecember, until another month of malnutrition left Molly's body so stressed that in January it appeared she had every disease in the book. Our pediatrician was the only physician who trusted our instincts from the outset. Should she, a practitioner witha full load of sick children?have to second-guess and sometimes bully the academic experts to care about the patients they share? And what if my husband and I hadn't cone up with the winning diagnosis? How much longer could Molly have survived if we hadn't been so persistent? If our evperience is not unusual, American health care is in even worse shape than some political candidates suggest.

Molly has rediscovered playing, and her favorite toy is a doctor kit. She obviously has a greater capacity for forgiveness that her parents.

Copyright 1992 Newsweek Magazine

?

[jerseyangel]

What an amazing story, Molly! Happy 15th Anniversary.

[Viola 1]

That really is an amazing story! Happy Anniversary Molly!

[blueeyedmanda]

Molly, that was a wonderful article. Congrats on your 15-year mark. It is an accomplishment and I bet you can vouge for how much food has come along in those 15 years.

[debmidge]

wow!

[Lisa]

Happy Birthday Molly!

[MySuicidalTurtle]

Congratulations, Molly! good luck on your test, too!

[babygirl1234]

wow 15 years thats great

[celiacgirls]

Happy Anniversary!

I like to make the Namaste chocolate cake mix. They carry it at my regular grocery store and at Whole Foods.

I haven't found a recipe from scratch yet that is as good.

[flagbabyds]

This is the other story my mom wrote in the San Jose Mercury News

Seven years ago, a family discovered firsthand the most precious gift of all

By Debbie Duncan

For years I had seen reports on the evening news of the Doobie Brothers' annual concert at Children's Hospital at Stanford. While the hospital is no more than two miles from my home, I always thought of it as a world away from my life and experiences. I had chlidren -three in fact- but they were all healthy. Until 1991.In mid-November my third child, 17-month-old Molly, stopped walking, talking, eating, playing, smiling, living. My husband, Bill, and I knew something was wrong, but we didn't know what. Neither did the doctors. Molly's helth was slipping away day by day.

Finally, in the middle of December, we decided to have her admitted to the new Lucille Salter Children's Hospital at Stanford for two days of round-the-clock tests. It was indeed a different world. In the playroom on the first day I met a mom and her 2-year-old; the little girl had just had a brain tumor removed.

The hospital hallways were wide, which was helpful because of all the IV poles and wheelchairs rolling from place to place. Molly had an MRI at midnight down the hall at Stanford Hospital. When she wasn't sedated for a test she cried for me to hold her. I tried to write Christmas cards because they had to be done, but I made little progress.

Our older daughters visited in the evening and worked on art projects with voluenteers. The girls didn't finish the tile they had been given to decorate, so I etched their names - Jennifer, Allison, and Molly - Into the clay after Molly feel asleep in her big hospital crib. The next day she was examined by more physicians and equiptment. In the afternoon a cheerful voluenteer came to our room to tell me about a special event, the Doobie Brothers' Christmas concert. "Would Molly like to go?" she asked. "She's just a baby," I replied. "But we don't have our next consultation until 6 o'clock." "Then come," the voluenteer said encourangingly, "it starts in about 15 minutes."

I met my new friend, the mother of the child who had had the brain tumor, in the hall. The toddler was sitting up in a stroller, her head wrapped in bandages. Molly slumped over me shoulder as I carried her downstairs.

"Oh good," the voulenteer told us when we arrived in the cafeteria. We saved the front row for infants and toddlers." They seated me about 10 feet away from the band. Other patients and their families surrounded us on three sides - kids attached to bags and poles, kids who had lost their hair from chemotherapy

A BLURRED PICTURE

The TV cameras were also wedged into the front of the crowd. When the Doobies started to sing "Oh-oh-oh, listed to the music," I suddenly thought, I don't belong in this picture. I'm supposed to be home watching the story on the news, not sitting here with a desperately ill baby who can't lift her head (The girl in teh stroller next to us was up and smiling.)

At that moment I knew Molly was really, truly sick. I felt tears welling up in my eyes, and I could also feel the cameras zooming in on me. I knew the cameramen were thinking, what a good shot. Soon tears were streaming down my cheeks.

We stayed in the front row thorughout the concert. I even managed to smile when I saw the band members use word sheets to lead the Christmas carol sing-along. At 6 o'clock Molly and I were back in our room with her sisters and dad, waiting for the doctor'r report. Bill turned on the news. The attending physician arrrived with "inconclusive" results. While I was talking with him in the doorway, 4-year-old Allison cried, "Mom, you're on TV!"

"WOW, mom," 6-year-old Jennifer chimed in, "you're famous."

I squeezed my eyes shut so my daughters couldn't see the tears. I didn't want to be famous. I wanted to be home and have my baby healthy again.

DIAGNOSIS

That Christmas Molly and I were home, but she was far from healthy. Christmas was a blur to me; picturtes of her show a wan, sad baby looking out from my arms with big, vacant eyes. Eight weeks and two hospitalications later, the diagnosis was finally made: Molly had Celiac Disease, or intolerance for the gluten in wheat, oats, barley and rye. She had been slowly starving to death.

Within a week of starting her new diet, Molly was actually smiling. Physical therapists taught her to walk and play again. We celebrated Christmas after coming home from the hospital the last time. It was the end of February.

Molly is 8 1/2 now. She follows a strict gluten-free diet, but other than that she's a normal, happy, healthy third grader. This month we decided to buy Packard Children's Hospital Christmas cards. Molly wanted to go with me to the gift shop. She punched the "UP" button on the elevator from the garage, and ran to the hospital entrance to jump on the spot that opens the automatic doors. (Molly rarely walks these days: she runs, bounces, or jumps everywhere she goes.) She made a dash for the tile-covered pillars. "There's our tile, mom," she pointed out. "With out names on it - up at the top."

Once again I felt tears filling my eyes there were no television cameras to record the event; this moment was private. Still, I could almost hear the Doobie Brothers singing for us. I reached for Molly's hand, and we strolled into the gift shop to select our family's Christmas cards.

[GeoffCJ]

Molly Congrats!!!!!!!!

I've just passed 6 weeks. I have a lot of respect for a young lady who is commited to her health, and has remained gluten-free for 15 years. It's not easy, and the fact that you're taking AP classes shows that you've got a lot going for you as well as being gluten-free.

I live in Sacramento, but end up in the Stanford area from time to time. I'll have to ask for restaurant recommendations next time I'll be there.

Geoff

[key]

Hi Molly, congratulations to you and your family for 15 years!!! I can relate to your parents desperation of a very sick little girl. That article is amazing! Watching a child waste away without a diagnoses is heart wrenching. You were even sicker then he was when we found out.

So, just curious as what you want to be?? You seem very driven for a young girl. You have alot going for you and we are all cheering for you. You are a true inspiration!

Take care,

Monica

[kbtoyssni]

Congrats! 15 years is amazing. And those newspaper articles brought tears to my eyes.

[Creative-Soul]

Congratulations!!! It's great to see someone so young be - and remain! - so concientious of her health!

[Tree]

Molly,

My hearfelt congratulations to you, and to your parents, who knew better than to give up on you.

I wish your whole family much joy,

Tree