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I have my little boy back.

8 days.  That is how long it took to resolve his pain. Cameron is doing well now. I would rather be cooking for a healthy child than going to the hospital, filling various prescriptions, and going to multiple medical appointments.

Cameron had been complaining of a tummy ache for almost a year.  We had already been to the doctor multiple times with no good answer for it.  Then, the summer he turned 7, Cameron became so crippled with arthritic pain that he could not walk across the room.  He started using a wheelchair.   He had gone from being a normal active little boy to a shell of himself, wanting to do nothing but sit on the couch.

After many medical appointments and many tests, he was admitted to the hospital and after a week was diagnosed with Crohn's disease.    We were told diet doesn’t matter and that he would go on a medication and be back to his old self in just a few weeks.  So we went home.   We followed doctor’s orders to give him anything he wants to eat –  calorie consumption was an issue.  He was below the 10th percentile and that was a concern.    Over the next few weeks, Cameron was able to regain some of his strength and do limited walking.  He was only eating 300 calories a day – and it took all my energy to get that much into him.

I was in denial.  I hated it.  It couldn’t really be happening.  Except it was.  My baby was really sick.  Not the kind of sickness that goes away, but really and truly sick.  He became a shell of himself, wanting to do nothing but watch television.

Our education process began.  We read books, attended conferences, looked into alternative treatments, looked for positive and reliable information on the internet.  We tried acupuncture, chiropractor, Epson salt baths.  Improvements were small and did not last.  Everything was a blur, and he was still not the same kiddo I knew.

Over the next 8 months, I heard about the SCD diet in the most random places.  One was on an internet search.  Once from a colleague whose nephew was on it, and there was a booth at the conference.  Each time I thought to myself – he doesn’t eat as it is.  If I take away his favorite foods how in the world will I get him to eat anything at all??????  As the medications continued to increase and optimal health continued to elude him – my worry intensified.  I finally bought the book and read it.   It made sense, but I was still left with the question of how to get him to eat this different kind of food.  Never the less, I brought the book to the doctor.  She said she would support it as long as I didn’t take him off the medications.

I had talked with Cameron about trying the diet (Mom confession – I used the part in the book about the body turning itself around.  It was the only way I could get him to agree and I knew he could sabotage this effort if he was not in agreement.   I am not above using manipulation when necessary!).  He finally agreed and we set out to discover new foods that he liked.  I got him a food journal and had him write down all the foods he liked and disliked.  He agreed to try new things with an open mind, but wanted to wait until he had a good number of foods he liked before starting.

Life continued – but he was missing out on friends birthday parties, skipping school parties, not participating in family activities, including his favorite annual beach trip, and not being able to get off Prednisone.  Two more hospitalizations.  I talked to everyone at the hospital who would listen about this diet.  I wanted their thoughts and opinions.  The responses were vastly different.  I was talked to about the safety of the diet, specifically about how he might lose weight on a limited diet.  I was told this diet could possibly work but wasn’t realistic.  I was told diet doesn’t matter, but to do the elimination diet (no fiber).  I was told the medications would get him back to normal.    I was told he would be on a liquid diet.  I was told he needed gut rest.  I was told…………….

Finally, I was told to go home and start the diet.

At this point, he had been diagnosed for 10 months, and in pain for two years.

8 days.  That is how long it took to resolve his pain.  He was completely and totally pain free in 8 days.  Within 12 weeks all of his blood and stool tests were completely normal and we started getting him off a few of his medications.   Starting the diet was hard, and resulted in a few tears, a lot of frustration.  Tali’s group of SCD Families, and the SCD Group (both on Facebook), were a lifesaver!  They provided a place to vent, share worries/failures/successes, bond with other parents feeling the same way, and, most of all, learn how to revamp your entire way of thinking about food.

Cameron has been on this diet for over a year and continues to be pain free, with just a few minor bumps in the road.  He is still on a few medications, but the combination is working well.   After learning the cause and effect of the diet, I have given Cameron the choice of being on the diet or not.  He, at the age of 9, has chosen to stay on it, saying he does not want to be in pain.

The end result?  I have my little boy back.  He is full of energy, back to a normal weight, plays outside all the time, participates fully in school and a few after school activities.  He loves to sled, go snowboarding, do gymnastics, and jump on the trampoline.

I cook a lot.  But I figure that I am going to manage this disease one way or another.  I would rather be at home cooking for a healthy child than going to the hospital, filling various prescriptions, and going to multiple medical appointments.  I work full time, so this is a lot to take on.   It is completely worth it to watch my little boy be a normal active little boy again.

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2 thoughts on “I have my little boy back.

  1. Deb

    I love your determination. I'm going to learn & cook for my 9 year old son & be where you are soon. Thanks for encouraging me with this story!

    Reply

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