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Crohn's Disease Forum » Your Story » My son's story


10-16-2012, 11:36 AM   #1
naturalhealing
 
Join Date: Oct 2012
My son's story

Hello all, stopping by to give our story (my son and I)

My little boy was 6 going on 7 when he was diagnosed with Crohns. Never having diarrhea , more like constipation. The constipation eventually tore his anal area, to the point where he began dealing with inflammation in the rectal area. He had a fistula so big a grown man could stick his fist inside of it. (Can't explain how many tears I've cried, or how many nights I told God I was done talking to him.)

He then began to suffer from stomach pains and cramps. It got to the point where he couldn't walk, stand or sit. We started him on Remicade before finally deciding to give him an ostomy for a few years so his bottom could properly heal.

We can also include the eczema he has and the psoriasis he developed from the medicine he was taking, as well as the anemia he continues to battle. (oh how that all has gotten better!)

During the years I never knew my child could get so sick. I watched he become afraid of the toilet, walk around like a mummy because of the loss of blood. All of these things I had no clue about. During the beginning phase I was clueless to what was going on and why it was happening. So I went through a stage of confusion and overwhelmed nights.

After tons of doctors, surgeries, and medicines I decided to take it upon myself to be my son's first doctor. Long nights of research, evaluations, different natural medicines, western medicines is finally getting us moving in the right direction.

It's still a long road but we are traveling it together, healing together. My heart has become a lot more light hearted over the past months and that is why I am so much more involved in the Crohns community.

Time,patience and perseverance are the three important keys to putting Crohns in it's place. All things take time, time takes patience and patience takes a hell of a lot of perseverance.
10-16-2012, 08:31 PM   #2
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi naturalhealing and welcome to the community Thank you for joining and sharing your son's story. I can't imagine how hard this has been on you and your entire family

*hugs*

Is your son currently on any medications? How are you treating him and how is he doing?

All my best to you and your family
10-16-2012, 08:53 PM   #3
naturalhealing
 
Join Date: Oct 2012
Hi naturalhealing and welcome to the community Thank you for joining and sharing your son's story. I can't imagine how hard this has been on you and your entire family

*hugs*

Is your son currently on any medications? How are you treating him and how is he doing?

All my best to you and your family
Thank you for the warm welcome. *hugs*

He is currently on Remicade advised at a 4 week infusion timeline. But I have gotten him to a 12 week timeline now.

Treating him has been a long journey. Taking away foods completely out of his system and then re introducing particular foods one food at a time has been my theory. Through trial and error, we are now starting to make our way through the fog.

His last remicade infusion was last month on the 12th, and he is doing well. He did go through a small flare up at the beginning of the month but he also caught the stomach flu, so I had to nip that in the bud QUICKLY. It's horrible to have a child with Crohns who turns around and catches a stomach virus. (TALK ABOUT CONFUSION) But I figure that the weather is changing and this is stomach virus time. Plus his fellow school mates were out for the same thing

His energy is back up, he's active and he is eating. So far no complaints of stomach pain and his poops are thick and not in liquid form. He is gaining weight and his color is coming back from his low iron issue. So for now, I'm at peace and I'm happy. I guess it's all about taking one day at a time and being mindful of the decision that we make.

I think this whole entire situation has made our entire family much healthier

Thank you for asking
10-16-2012, 08:55 PM   #4
David
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I'm so pleased to hear he's doing well!

12 week interval? Interesting. Are they monitoring his trough level and for antibodies with that long interval?
10-16-2012, 09:14 PM   #5
naturalhealing
 
Join Date: Oct 2012
I'm so pleased to hear he's doing well!

12 week interval? Interesting. Are they monitoring his trough level and for antibodies with that long interval?
Of course, they have no other choice to do so because I'm there hand in hand with him to see how his levels are. I take him to see how well his inflammation is doing. His inflammation when we started was over 100, and it's now under 70. We have to include the fact that he has eczema, and that's an inflammation issue.

So far no antibodies, even though we should be going at 10 weeks, as the docs say because he can develop antibodies to Remicade. I'm the type of mother who pushes the envelope.That's what I would like to call "weening." The longer we can go without the medicine, the better we are doing.
10-16-2012, 09:20 PM   #6
David
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I can understand your desire to push the envelope. Here's a couple threads with some interesting data (in my completely biased opinion) in case you're interested:

http://www.crohnsforum.com/showthread.php?t=42119
http://www.crohnsforum.com/showthread.php?t=42140

What test is he now under 70 on? CRP?
10-16-2012, 09:54 PM   #7
naturalhealing
 
Join Date: Oct 2012
I can understand your desire to push the envelope. Here's a couple threads with some interesting data (in my completely biased opinion) in case you're interested:

http://www.crohnsforum.com/showthread.php?t=42119
http://www.crohnsforum.com/showthread.php?t=42140

What test is he now under 70 on? CRP?
Checked out the first link. (the 70 is on the " Said" rate,don't know if I'm spelling that correctly. )

The medical side. Oh boy, have I researched the medical side of Remicade, Humira etc. I think the medical side was what fueled my passion for getting my son off the medication. Because as statistics show, most people develop some sort of antibody to these medications after taking them for a certain amount of time.

And plus I'm not a fan of the side effects on my 9 year old. As a mother I feel like I'm putting him in harms way for the sake of short gratitude. Because when the medicine wears off, the problems start all over again. It's a vicious cycle.

And by God Don't let the Insurance feel as if $9000 every infusion is becoming costly. That's almost $100,000 a year.Can you guess what is going to happen next? And then where will we be?

So am I suppose to switch it up, put all my hope into the medication? nahh, that by far will not happen. I did at the beginning but the results weren't steady enough for me. But that is because I wasn't doing my part.

I think the thing that most people fail to realize is that you can't depend on the medicine to work on it's own. You have to help it.

The 12 mark period for my son was slowly introduced to him as he experienced less flare ups. Being observant, I paid attention to his every move. I can tell when my child may be declining,. And when he is right at the beginning. But I use those beginnings to try things that may help him in the same manner Remicade would and by GOD I think we have it. ( I think.)

Doctors have yet to get his dosage right, it's trial and error. I have yet to get my dosages right, it's trial error. I use Remicade as a crutch to get us through until we can carry ourselves.

I continue to read the medical side though and every other side that may exist. Because I truly need to evaluate every aspect of this disease that has captured thousands of people.

Something happened along the way. My son was never sick before this. NEVER caught a cold or anything. The most he ever got was an ear infection. So now I'm investigating the affects of antibiotics on the immune system. No one in my family or his fathers family has this disease. It just became a freaking mystery. So that's when I just sit back and re evaluate lifestyle.

Do you know that I have friends in Dubai and Romania who have never even heard of this disease? (Crazy right) but it says a lot.

I can honestly say that the answer lies right in front of our faces. But it's not whether people decide to open up and get that answer, it's about my son being given that answer, me sharing it and you do what ever you want to do with it. I can't change the world, but I can change my son for the better. If it was left up to the world, he would be doped up, still in pain.

I need these links in my reference, I want to dissect them and figure out some things, pertaining to his all around home treatment. So I thank you for those, they are much NEEDED.

Funny- My son told me a while back when I was putting him in the bed, that I should have become a doctor. That kind of made me feel good, made me feel like whatever I was doing, I was doing right. Not my thing though.

I hoped you meant to say you were "unbiased" and not "biased" because if so . Just kidding
10-16-2012, 10:05 PM   #8
David
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I can feel your passion Good for you taking control and educating yourself so you can advocate for your son.

I meant to say biased only because I reviewed the articles and picked and chose what I thought was pertinent. So by saying, "interesting information" I am biased I am unbiased when it comes to treatment options. All I care is that people get the best treatment for their specific situation. I don't care what that is whether traditional, alternative, combination, etc. I just want well informed, educated decisions being made.
10-16-2012, 10:17 PM   #9
naturalhealing
 
Join Date: Oct 2012
I can feel your passion Good for you taking control and educating yourself so you can advocate for your son.

I meant to say biased only because I reviewed the articles and picked and chose what I thought was pertinent. So by saying, "interesting information" I am biased I am unbiased when it comes to treatment options. All I care is that people get the best treatment for their specific situation. I don't care what that is whether traditional, alternative, combination, etc. I just want well informed, educated decisions being made.
AHH, then I can except "biased." if I don't advocate for him who will!?

Last edited by naturalhealing; 10-17-2012 at 12:21 PM.
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