Wednesday, January 30, 2013

Turning Points

If last week was a turning point in that I had to stop ignoring the fact that Pumpkin isn't getting better, this past weekend was a turning point in accepting that supplementing her and not treating her was not going to make her better.

On Saturday, Pumpkin got all dressed up for a tea party she was invited to with her friends.  My three girls were so pretty in their fancy dresses and makeup.  Their two friends came here and we took pics together.  After about 5 minutes of the photo shoot, Pumpkin needed to go lay down.  This has been happening whenever they do anything - take a walk, shop, etc.  She gets tired out quickly.  She has been needing to sit or her stomach hurts.  I found out on Sunday night that she had gone to McDonald's on Friday and had some french fries and a shake.  This may have been the source of her pain.  Seeing her so thin in her dress up clothes, hurting, weak, not able to was breaking my heart.

After dropping her off, I cried in my car.  I realized the time had come, we had to do something.  I talked with Pumpkin about her treatment options, which for me right now seem to be prednisone (very effective, but many side effects and often symptoms return after weaning off of it, so has to go onto another heavy duty med), budesenide (a steroid, not as successful but less side effects), or EEN (exclusive enteral nutrition).  EEN is a full liquid diet of a special formula (many to choose from) either by mouth or by NG tube.  As Pumpkin cannot even drink three cans of her Ensure a day, it would be near impossible for her to do 6 or more a day.  After we watched a video of a little girl showing Pumpkin how to do it, she decided that the NG tube probably would be a viable option.  She would have to do this for 6-12 weeks continuously, then slowly start regular foods again when all of her Crohn's symptoms have subsided.

I wrote Pumpkin's GI specialist an email and she called us on Monday night.  She is in agreement with this plan and will call our pediatrician when she gets a formal plan written up.  I'm still waiting to hear from them.

Tuesday, January 22, 2013

Facing Up to The Monster

So I have a few minutes to stop and think.  Of course what my minds first leads me to is my daughter, Pumpkin, who is 13 and was just this month diagnosed with Crohn's disease.  She weighs 70 lbs and is in the <1% for her weight in this age group.  Although she looks tall because of her skinniness, she is only in the 30th % for her height, which started out at the 75th% or better.  She is just starting puberty.

Pumpkin homeschools because the stress of school makes her abdominal pains and anxiety worse.  She has trouble with the social realm of being a shy, sick girl in a private school who struggles academically.  She is much happier at home.  Academically she is doing fine, in my opinion, and is thriving with real literature like 101 Arabian Nights, Beowulf and soon will be studying Arthur and the Knights of the Round Table.  A couple years ago she had some neuropsych testing and found that she doesn't learn well auditorily at all.  I think this was her biggest struggle in the realm of a regular classroom.  She couldn't take the information presented auditorily at the front of the classroom and process it into words on a sheet of paper (notes).  She also had problems keeping up with written notes on the board getting put down into written notes into her notebook.

This week, Dr. Wilson, the pediatric GI doctor called and had a conference with myself and Pumpkin's pediatrician, Dr. Schramm.  They want to start her on prednisone.  Frankly, I'm freaked out with the side effects of all the Crohn's meds.  I wish I could see into the future.  Will the meds help her overall in the long run, or will they hurt her?  Will she become dependent on them?  Will she ever be able to maintain as well as she is now (which isn't good) without them?  Will they help or will they hurt?

I hate that there is no good cure for Crohn's disease.  I have no one who is giving us hope of a healthy life - only of remission for weeks or years, with the fear that one day, without reason, it could relapse and she'd be back to square one in a matter of days, maybe worse.

I read books about Crohn's and diets.  They all seem so contradictory.One says low fat, one says low carb, one says all natural/organic, another says use supplements like Ensure or Boost.  Ugh!

I guess I have to go back to the Person all my hope comes from, and that is in the Creator Himself.  He knows Pumpkin and this health problem that she has.  He is the Healer.  He may use the meds, or He may choose to heal her silently like He did for my other daughters, Bubbie's scoliosis and The Boo's seizures.  Lord, help us.  This is too big for me, and I feel paralyzed with fear of making her worse.  Only You know the perfect cure for her sick body and emotions.  Help me make the right decisions.

Thursday, January 17, 2013

A little hike in the snow

On Sunday the weather decided to warm up a bit.  It had been rainy all weekend but I decided it was time to get the kids outside for some fresh air and exercise.  We went downtown Soldotna and walked along the river.  Pumpkin was feeling pretty weak and sat down a few times on our less than 1/2 mile hike, but I think it was good for her nonetheless.  (I asked her when we got home what she had eaten before our noonish walk and she told me that it had been very little - that is probably why she was so weak and tired.  She perked up after a good meal.)  We tried to play at the park a bit before we went home, but it was just too nasty out and with Pumpkin feeling poorly I decided it was best to go home. 

Monday, January 7, 2013

We have a diagnosis

If you've been following my blog at all, you know that we've been waiting to here back from Pumpkin's pediatric gastroenterologist regarding her diagnosis as to why she can't gain weight.  Well she called back and we have a diagnosis - Crohn's disease.  Her video endoscopy showed a lot of inflammation in her small bowel (especially in the terminal ileum) and also ulcers throughout her colon.  The GI doc isn't sure the ulcers weren't biopsy sites and she is waiting to see pics of the spots herself.

In some ways knowing the diagnosis is worse than the waiting.  Perhaps I just need to let it soak in.  Perhaps part of me is still in denial.  Perhaps I'm just scared of what this is going to mean.

Living in Alaska all of a sudden seems so remote.  It never bothered me before now.  Having a doctor call me and give me a bomb like that over the phone was her way of not making me travel 3 hours to do the same in her office, but now I feel like "What do we do now!!?"  I know better than to get onto some yahoo support group - that was disastrous when my first daughter had seizures - I was so freaked out by the stories!  We have been looking at Mayo Clinic and some Children's Hospitals websites online.  It seems other places have whole teams to helps patients newly diagnosed with Crohn's.  We get a phone call with the doctor essentially asking me what I want to do.  Yes, I may be a PA, but I'm not a gastroenterologist.  I'm a freaked out Mom like everyone else would be wondering what is the best choice for my daughter.

Right now the options seem to be 1) giving her a short (2 week course) of prednisone then putting her on an immunomodulator.  Uh, are you sure this is first line?  2)  Putting her on total enteral nutrition, which consists of having her drink nothing but a nutritional supplement like Ensure or Pediasure for 6 weeks - no food, only the supplements or water for at least 6 weeks.  3) Watch and wait and redo the tests in 3-6 months.  4)  Go naturopathic - whatever that would mean.  "The Maker's Diet"?  The Whole 9/Whole 30 diet?  See a naturopathic doctor?

On a good note, my 8 year old daughter, Bubbies, who had some serious scoliosis going on last summer was re-xrayed this week and it appears to be completely gone!  That makes one less trip to Anchorage.  Thank You, LORD!

Please keep us in your prayers as we face this beast with Pumpkin.  If He can make a crooked girl straight, He can heal another girl's inflammatory bowel disease.