Possible direction for son's illness...finally

So my son's endoscope and sigmoidoscopy tests ended up showing that his stomache and his colon are not contracting like they are supposed to. Normally they contract about 3 times a minute. I'm not sure how much his is contracting, but the doctor said they just kind of lay there like a bag. I will be able to talk to him more on Tuesday when the biopsy results are ready. They went ahead and took biopsys..but as far as how his stomach and colon looked..it all appeared okay so no sign of cancer or tumors or inflamatory diseases like chrones.

On Sept 26th he has an appointment to get a stomache emptying test. I guess this will verify what the doc thinks it is and that is 'gastroparesis' Evidentally it's not a commonly known condition and it needs a lot more funding to study it. Many people go undiagnosed for years and suffer immensly from it. It happens mostly to people who have diabetes. I'm not sure if it's the disease or the drugs they are on that causes it..but it ruins the vagus nerve. That's a nerve in the neck that goes down to the stomach and tells the stomach to contract. People with anorexia get it too or the nerve can get damaged from a surgery. It can also come from having a bad virus. Some just get it and they dont' know why.

I am thinking my son got it from 1st a stomach virus he caught in April. Then about a week after that I cooked a crockpot full of raw pinto beans. I slow soaked them over night, then slow cooked them. I was not aware that all raw beans have a toxin called Phytohaemagglutinin and you MUST boil them for at least 10 min at some point. If you don't you get very sick. It lasts only about 12 hours..nausea and diarreah. my husband and I did not get the nausea but my kid who always gets everything 10 fold..got both so bad. He just never got better after that. His poor tummy got a big whammo twice in a row. I'm hoping that is the reason he has this gastroparesis, because people who get it from a virus usually get over it in a couple of months. It's been about 5 though for my son. When I look at his 17 years of life though, he's always had tummy trouble. Projectile vomiting as a baby and every single time he was sick, no matter if just a cold..he ended up throwing up. Every morning growing up...if he didn't eat in time, he would say "mommy I have morning sickness!" and I would have to rush and grab him some cereal or even a cookie..whatever so he would not end up over the toilet gagging. He only threw up once from it..but came close a number of times. I'm wondering if there was a start to this all way back then.

But at least we have a direction to go in now and at least I can rule out stomach cancer. I'm not very happy with the diet he has to eat though. It goes against everything I've ever learned about eating healthy..losts of fruits and vegies and fiber. He's to have no fiber at all, they want him to have white bread and saltine crackers. Everythign needs to be blended, meats blended (yuck!) any vegies or fuits blended or juiced. No salads :( Hopefully he can get to a maintanence part of the diet where he can eat a little more...like 2 oz of baked chicken or fish..but some people can never get to that stage. He has to eat small amounts just more times a day (6 to 8). It's super hard to get him to eat that many times with the nausea. The anti nausea drug is helping now..but I don't want him to stay on that forever. Drugs always have side effects :\ He's probably lost 15 to 20 pounds..and was very skinny already. For sure he's lost 10 in the last 2 months. He's starting to look malnurished..ribs showing in back..spine sticking out far when he leans over..small arms. It doesn't take much imagination to picture him as an anorexic.

So I'm busy learning all I can about this and trying to learn recipes. If anyone knows about this condition, has any recipe ideas..esp ones that are more natural..please let me know. On Tues I've got him going to a somatic excersize instructor that is here from India teaching a class of instructors (my mom, a massage therapist, is attending) this teaches you to wake up muscles that your body has forgotten about and turned off. 100 bucks for an hour..but I've got to take advantage of him being here. Then on Wednesday I'm taking him to an acupuncturist (Kaiser covers most of it..yay!) because I read that acupuncture has had success with helping to get more enzymes down into the tummy to help digest for people with this condition. Cameron is not very happy about this one as he hates needles. I told him acupuncture does not hurt..but he does not care. He's been going to a Nutri Energetics practitioner and is on Kangen water.

I'm just so upset that he was just starting to get on with his life. He was going to take his test for his diploma (we homeschooled and did Hawaii's required 40 hours of tutoring so that his GED test completion would give him not the reg GED but a diploma certificate) and he was getting ready to get his permit. We just got him a car too...someone we knew just wanted to get rid of one that needed somethign simple to fix so his dad fixed it up for him. Some of his friends just graduated and he'd been spending time going places with them and enjoying a little more freedom and time away from having to do schooling. So he was pretty excited about his life moving along and then whammo. Now he has not much quality of life. Everyday is just about fighting to get food down him and hoping he will gain some weight.

Heres my guy a little healthier in 2006



and here is at 15 months when we first moved to Maui..



If this is what he is going to have to live with I'm definitely going to need a juicer! Anyone has any suggestions for a good one let me know. My credit card is soon to start getting a work out..Our insurance only pays 1/2 of all these tests..so the med bills are piling up..plus special foods and other alternative health care visits I've done. But I think a good juicer is what we need...somethign that will allow more nutrients in and let him have raw foods again.

So now I've got to get my creative side back and make more jewelry. Thanks to all my wonderful customers, I've been able to pay for a most of Cameron's care as hubby's work has been slow because of the economy. But no one can buy my jewelry if I'm not making it! I actually got a necklace photographed this evening that I made a couple of weeks ago. Hopefully I will get that priced and up soon.

sorry for the long post..but many of you asked for an update and I don't get much time at the computer lately..so I gave you a huge update. Thank you for all your notes and emails and well wishes..I REALLY appreciate it! I'm sorry if I have not been able to visit your blogs much lately. I hope to get this diet situation under control so I am not spending so much time in the kitchen experimenting. I'm hoping we can get him on a routine that works for both of us.

Thanks again for all your kindness!