Pain, pain go away...

So he cried all through supper...we watched some Adam Sandler movies and he got stiff and when he went to the washroom he hurt so bad that he started crying...hard to deal with...I know his pain is real and frustrating and his inability to even go to the washroom alone because he is in too much pain to walk and he can't even lower himself or raise himself--very hard. BUT I gave him an advil and when he heard Marilyn and Richard were outside, we all went out. He went in his wheelchair and looked for spiders with us and we found the wild blackberry patch in our yard and had a feast!! Then we found our plum tree and ate some more! Yum! So nice to see him outside enjoying himself. I try and stay in the moment and NOT think about how well he was doing before Shawnda arrived and he played ball and hurt himself--he was going to the washroom alone and walking alone--he was doing SO well!! Need to go there again!

Just wanted to highlight the funny comedys we watched to lighten us all up and the time we spent outside with friends--all in all a good day even with the 2 hr supper episode--and part of that is because I want him to eat halibut and he doesn't like it.

Frustrations!!

I sigh alot...you see, I ALWAYS feel so guilty when he has a setback as I ALLOWED whatever it was to occur. The most recent being a ballgame with the cosmic catch ball that Tristan and Brenna brought with them. Cory had been doing SO WELL for 10 days on his Maker's Diet and was so happy and then he played this and he has now been in BRUTAL pain for 2 wks plus 2 days and can no longer walk, hurts to roll over, hurts to move, hurts for me to pick him up...HOW can he be in SO MUCH PAIN!!! This is JUST so unfair!! He cries almost every night, wakes up a few times each night... his crying and suffering, albeit hard for him, is EQUALLY hard for me as I want so much to bear it all for him. I PRAY for wisdom and peace and for healing for Cory. I have Marilyn and Richard here to help us get ready for our journey and I don't plan on stopping till I have cured Cory!!

Recently Diagnosed

We were recently diagnosed with IBD and Sacroiliitis for my son Cory who is 10.5. To add some history to this, my son Cory is 40lbs and HAS been 40lbs for the last 4 years! It took many doctors appts. to get to this diagnosis. It is just SO DARN HARD to battle through the health care system trying to help your child!!

Basically 4 yrs ago Fathers Day, he caught a cold and started limping horrifically, many tests were done as he had MUCH pain. Nothing found for a whole year when there was a 'slight' abnormality with a neurological exam. But was told to come back in 8 mos. if it got worse. During this time, he would have 'flare ups' where he would take naproxen for pain and then he could walk. I always observed that he got worse when he ate dairy/wheat or sugar but no one believed that or said it could affect him.

So after that 8 mos., his flare ups that were 2-3 mos. apart, were now 2-3 wks apart and sometimes he couldn't walk at all, and he would scream all night in pain. At that time, my brother got married so we ended up at the Stollery in Edm. and they diagnosed him with a progresssive myopathy of unknown nature--like a muscular dystrophy. They wanted to do a biopsy but we declined. He always got worse pain in the wet winters here and could barely walk all winter. But in summers would do better. We have been told nothing is wrong with him, he is just a baby, we have been chased out of specialist offices and told if we didnt comply with their outrageous assessments, we would be ignored (they would always hurt him at all the assessments by moving his legs around and although we didn't know why, we knew he was always worse)

Last Jan. we noticed he was not gaining weight. His pediatrician at the time was horrible and she wanted to turn me into child protection services because of his weight instead of book a gastrointestinal specialist that I begged for. I also wanted an MRI but she wouldnt' book that either. By fluke, I took him to one of only 3 ostepaths in BC and she injured him and she felt so bad that she got me an MRI in a week!! Problem was, no one looked at it until THIS APRIL!!

Fast forward to this Jan., he got a massage and then couldn't walk for 2 mos. and then developed diarrhea 20x/day after they increased his iron--he has been anemic for 2 yrs. I immediately stopped the iron but to no avail. No I had a child who was weak, could barely walk, and hadn't gained a pound in 4 yrs. and all bloodwork was horrible, had a fever constantly, cried almost every night in pain and throughout the day couldn't move, his ESR was getting higher and higher showing massive inflammation in his body and his WBC was high showing infection somewhere.

This Jan. I was blessed to get a new pediatrician--I fired the last AND the GP who sided with her and I got a new neurologist as we were traveling to Edm. all the time until that ped. told Cory it was all in his head and he was a big baby.

In April, the new neurologist agreed to admit him for testing for 1-2wks after we had a horrible appt. with the rhematologist who we basically told off as Cory lay there crying during the awful assessment. (he can never walk after these and we always want them to be gentle as they move his legs and hips etc but the are NOT!!)

So we split up and I ferry over to Vancouver leaving my 3 yr old and 8 yr old and hubby behind. 2 days after I was gone, Kev. ended up in the hospital but that is a different story! Needless to say I was crying feeling helpless for my 2 back home with a stranger and my son in the hospital who had contracted yet a new infection.

So we had to be released in May. Finally June 30th we got the colonoscopy that our neurologist fought to get and voila--he has a completely ulcerated large colon (mild they say though) and accompanying rhematoid arthritis of his sacral joints causing sacroliiitis which is an extremely painful condition so he cannot sit. So Inflammatory Bowel Disease or IBD is what he has with the hip pain being a manifestation of it. So FINALLY--it was this neuro. who looked at the MRI I begged her to look at and had a spec. look at it and saw the fluid in the hips that was missed at first last year. She tied it all together. So after 4 yrs we JUST found out all this and now I am working feverishly to heal him sans drugs! As they gave us 2 that he would need for a lifetime.

My first try was with David Klein out of CA. and he was getting worse on that and ended up with a very painful blockage. Luckily my new ped. is wonderful and was there to guide me as to what to do (he is tres easy on the eyes too!!:) We went for xrays and had a blockage and we were sent home with exlax with him still crying in pain. The story gets more pathetic but I called the GI clinic and they said DO NOT give exlax to an IBD child!! Give him flaxseed oil. So I did that and he had a movement ( he usually has 10/day--and had had none!) They did not even examine him at the hospital!! Now I am reading Jordan Rubin's amazing story and am following his program from the Maker's Diet (eating God's way) and Cory had not cried at night for 5 nights and has gained back his lost weight (was 35 lbs--my 3 yr old is 30lbs), and had not been this happy in a LONG TIME! He is actually walking again--was bedridden and i would carry him to the washroom the 20x/day. The first program did decrease it to 10x/day, but his pain got real bad. UNFORTUNATELY, we had company from Red Deer AB, and Cory played this nerf cosmic catch game and now can't walk at all and cries all night in pain and is back on advil after being off for 2 months--but JUST rarely. We are back at Children's in 3 days...and then off to Georgia to try and heal him naturally through Dr. Goldberg there.

I pulled him off of the advil the doctors sent me home with 1.5 yrs ago which probably caused the ulcers as he has only been able to walk with the advil (took 4 adult advil a day every day) for the last couple of years-except when I took dairy or wheat or sugar out of his diet--he did better...but doctors repeatedly told me 'diet has nothing to do with it'--WRONG!! So although it will take a year to get the small intestine MRI to see if he has Crohns, I believe he does as his malnutrition goes with Crohns symptoms. I believe I can cure him with God's help.

First Post

I feel moved to share the heartache and pain and journey of our last 4 years. Trials and tribulations of dealing with an illness and not even knowing you are dealing with an illness OR what you are truly dealing with OR why you are dealing with it. I hope to share my ups and downs in dealing with this illness and believe in Jesus Christ to bring me the truths I need to help heal my son of his challenges. I will stop at nothing to cure him!