Jacob & Lili

Jacob & Lili

Friday, May 13, 2011

It was that simple! And a day in the hollow.

Some progress has been made! After a very week of phone calls, voice mails and emails I found a way to get help for Jacob and his tummy pain. His GI doctor in Cincinnati called me yesterday morning. After telling him my frustrations of trying to get some kind of pain management for both kids and the medication to help Jacob, he suggested calling the pediatrician. Now there's a thought! I've gotten so used to hauling them from one specialist to another that I didn't even think that our regular pediatrician could possibly hold the key. The GI doctor suggested giving the pediatrician his email and number and he would gladly coordinate with her on how best to manage Jacob's illness. I immediately called Dr. K's office and set up an appointment for that afternoon.

The appointment was scheduled for 4:30. So after a long day at school, we drove up to Los Gatos and met with the pediatrician. She walked in with a huge file, Jacob's file. The first words out of her mouth were, "So looks like you all were busy in Cincinnati and now you need some medication for Jacob". I was stunned. The huge file was every report that Cincinnati generated for both Jacob and Lili and in it the recommendations for the pain medications. I went over my week of frustration with her after which she said she would gladly give us the scrip for Amitriptyline. Amitriptyline is an anti-depressant but it is also used for functional abdominal pain. She asked if we were working with a psychologist and asked if we had a psychiatrist for Jacob as well. For a while, Jacob was seeking a psychiatrist for his anxiety and was on a drug called Strattera. We hadn't been back to see him, however, since Jacob stopped taking the medication because of the pain it caused to his throat when he swallowed it. She said she would contact the psychiatrist to make sure the dosing and titrations are correct and would work with him to make sure Jacob received the full benefit of the medication. Meanwhile, Jacob was busy under a table showing the doctor his true colors complete with accusations of "you hate me" and "no one loves me". Dr. K looked at me and said, this may help with some of the other things as well. Oh, please I hope so. Finally, she suggested sending all the pain management reports to the psychiatrist as well. She said he may be able to help us faster and more effectively than Stanford. I tend to agree.

Lesson to be learned from this - Sometimes the help you need is in a quiet corner where there are no grand accolades or high praise and not in the big names with the big reputations.

Today was Jacob's field trip to Happy Hollow. I was a little worried about the food situation but managed to come up with some things he could eat that didn't require me cooking or heating up. He didn't eat much though.He played hard and at the end of the day it took a toll. He's exhausted and I have a feeling he'll be in my bed shortly with more than a few complaints. But for a few hours today he was a normal kid, doing normal things.

Wednesday, May 11, 2011

Learning to Navigate

Coming home from Cincinnati wasn't an easy adjustment for any of us. Back home with new diagnosis, new diets, new medications, and new help to seek out has been a little more than overwhelming. We almost immediately put Jacob on his 12 food elimination diet. We started out fairly strong. We bought him buffalo and lamb. I called Whole Foods and tried ordering a rice yogurt and a mac n'cheese that really isn't mac n'cheese that Jacob could eat. But as he began rejecting various foods and trying to order in special products for him at Whole Foods became almost worse than battling doctors, the new diet is taking it's toll. He's frustrated, tired, in pain and hates this diet. He's lashing out and our evenings have turned into epic battles. I've been trying to get him into the pain clinic at Stanford Children's calling doctor after doctor. Today, finally, a doctor in Cincinnati is going to put in the referral and once in it can take 2 months before he is seen. So for 2 more months, he is going to live with constant pain and flare ups. And we will live with a very grumpy Jacob.

On the plus side, the psychologists at Cincinnati sent a report to Jacob's psychologist here at home. Good timing too since we ended up having an emergency family session on Tuesday, we couldn't take it anymore. The report gave his psychologist suggestions and she was then able to help us out. Hopefully as the weeks go on we can all learn to manage his pain. This disease most definitely has a psychological impact on these kids.

Lili's diagnosis was verified by Cincinnati. Most simply put, the nerve in her stomach which signals her stomach to empty into her intestines is damaged. There is no repairing it. As a consequence she is nauseated and barely eats because her stomach always feels full. She's on erythropycin, which makes her stomach cramp and move the food along, which has helped some. They have prescribed zophran for her on days when the nausea is particularly bad, it's often used for chemo patients. There's not much more they can do. If she starts to loose weight or fails to gain weight then a feeding tube is the next step.

She too, like her brother, needs to go to the pain clinic at Stanford to learn how to manage her illness. But again, getting her in could take months. So in the meantime, we just deal.

I've found a yoga teacher who is going to come in and do yoga with both kids. The hope is they will learn to manage their pain through yoga. I should take them both in for acupuncture as well, but the cost is a factor. Especially when you want them to keep doing the things they love that cost extra.

Navigating chronic illness is a practice in diligence, patience and hope and a practice you can't give up on even on the bad days. Because if you do, the kids will to. And if they give up, what future will they have?

The Maupin's

The Maupin's