Sunday, August 31, 2008

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 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 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 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 the med bills are piling 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 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!


Marjorie said...

Dearest Jamee,

How hard on you and your family this all must be. My heart goes out to you all. I'm so glad that you're also trying alternative treatments which can be so helpful, especially with an unusual condition like that that the medical field may not know much about. Please don't concern yourself about keeping up with the blogs. If there's anything I can do to help, let me know. I'll pass on any info I can find that I think might be useful. All the best to you and your family. Keep us posted on how it's going when you can.

Christina said...

Hi Jamee,

Thanks for the update. I think it's great that you are trying alternative treatments. I've had acupuncture and it didn't hurt at all. I have a Champion juicer and I love it. It's what my mom had when we were growing up and it does a great job. I hope this diagnosis means your son will be feeling better soon.


P.S. My mom is a massage therapist, too!


Stefani said...

Thank you for the update - I've been thinking about you. It's obviously very overwhelming at the moment. I'm glad you're trying all those alternatives - something has to work. Hang in there, friend.

Muddy said...

Jamee... sure hope things get a lot better very soon. Just one question... have they ruled out gallbladder problems? I was nauseated so much of my life before I had my gallbladder removed. With your son, it may have nothing to do with it, but it would be good to be certain.

Hugs and lots of good wishes!

Zen Ventures said...

I almost sobbed when I saw your son's picture. He's such a lovely boy. It kinda remind me of my brother when he was 17 years old and suffering from an illness that he never got over. I pray that Cameron will overcome this and get back onto his life. Acupuncture and Reiki go hand in hand. You may want to explore that possibility too. I think feeding him mashed foods will also help. Like the 1st baby solid foods. I know juice can sometime be acidic to a tummy who doesn't function too well. I feel your pain Jamee. I will keep you in my prayers and hope this storm in your life passes by quickly too.

Mama C said...

Dear Jamee,
How difficult it must be to see your child suffer that way. I am glad, though, that you were able to get some answers on his condition. Thank you for sharing his story, and his picture. He is a beautiful boy/almost man! From one mom to another, he'll always be your "baby" no matter what the age!

Anyhow, been thinking about you guys all weekend. I'll be keeping your Cameron in my prayers.


Sarah said...

You and your son have been in my thoughts Jamee...hang in there! My mother in law has a really great juicer...I'll find out the name and pass it along. You will continue to be in my thoughts.

Beth said...

Prayers for a complete diagnosis & recovery for him. Take care of yourself too, mom!

Jonara Blu Maui said...

wow..thank you everyone for the comments! I'm just starting to attempt to get back into the swing of things. So I am excited to get back to each of your blogs and see whats new!