Mother of 9 year old diagnosed with CD

[Hward]

Disclaimer..... My English is bad!


Let me start by saying that I give thanks to God that it's just Crohn's disease and it's nothing else! Before my son was diagnosed I was sick with worry because of the possibility of something worst.

All started back in April when my son started having diarrhea... I thought, ok... It got to be a bug..... It Went away on the second day. A week after, bang, diarrhea... it lasted for one day... So I think it got to be something he ate.... A week after, bang, diarrhea .... I gave him some Imodium and it stopped for 3 to 4 days and it started again... So I take him to a family doctor that was close to were I live because I live far from civilization..... That doctor referred me to a Pediatric GI, but there is only one within 60 miles and he did not had any openings until August . Anyway, we went to a regular GI for a month.... He sent me to do him all kinds of studies, x-rays, blood works, ect.... Everything was negative.... All this was taking place while my son was still on diarrhea... One day while visiting his dad, my son got really sick with vomiting and I decided I had enough and took him to ER.... And make them admit him in the hospital... He arrived at the hospital with 43 pounds and after 2 days of being there he weighted 37 lbs.
That was very tuff! I had to wait for the pediatric GI to come back from vacation. When the doctor arrived he proceed to do a endoscopy and colonoscopy and immediately he told me was Crohn's disease.
He put him on a treatment and noting to eat for 5 days just by vein.... And he recovered..... He was out of the hospital 10 days later with 43 lbs.

Today he's 46 lbs, on Pentasa, Entocort, 6mp, fish oil, minerals, special vitamins, MAP (amino acids).... I would say that he's on remission but the doctor wants me to put him in one of those dangerous drugs so he can grow....
I don't want to do that.....
I am very happy I found this forum... It's being a ordeal that I won't wish not even my worst enemy....

 

[Catherine]

Welcome to the forum.

Please check out the parents forum where you find lots of other parents. Some just beginning their journey with Crohn's and other further along.

You not alone in worrying about the use of these medications.

I see your son to nine year old. How tall is he? Is he growing?

 

[Hward]

Hi! Thank you for your reply....

My son is 48" tall and he turned 9 on November 1st. He's in 3rd grade and the smallest of his class.

 

[Jmrogers4]

Welcome Hward,
My son is 14 diagnosed when he was 10. Growth can be a major indicator of the disease not being under control and ongoing inflammation happening.
This has been a huge issue for my son as we have had hardly any growth since diagnosis about 3 inches and no sign of puberty. He will be seeing an endocrinologist at the end of the month who will do a bone scan of his wrist to check his bone age and see how far delayed he is and if we can do anything about it.
He will also be starting remicade soon (as soon as we get insurance approval) as he has been found to have inflammation in his small intestine from a recent MRI. It seems that Imuran (sister drug to 6MP) and LDN have not been enough to keep the disease under control.
Yes I'm worried about the Remicade but after 4 years of waiting for growth and myself and the doctor kept saying it will happen any day now, we are running out of time and it also is hard for him when all his friends have grown a bunch and going through puberty.
Best of luck, you have come to a fantastic place.
One other thing that really helped us was Supplemental EN (entrenal nutrition) like Pediasure.

 

[Hward]

Hi Jacqui,

I have another son, he's 11 years old and since last May he's been taking growth hormone. Since then he has grow 3 inches he was already out of the growth percentile... The insurance denied the prescription and every pen cost $2k (if you were to pay cash) that doesn't discourage me because the mega pharmaceuticals has tons of money and they also have programs for people that can't afford to pay for them and that the insurance has denied coverage... So, since May I have been receiving his prescription and have not paid anything. Another thing, my 9 year old has an appointment with the endocrinologist next month. I need to move fast because you know how hard for boys is to be short.

I heard, (that since growth if part of the issues on patients with CD) that insurances would have a hard time denieing prescription to help them grow. Now, I have to tell you what my sons doctor said about growing spans. (Sorry, my English is not great) she said that the kid needs to start this treatment during puberty, that if I waited too long I would missed a small window for success.... I really hope he has a chance and that he can start the treatment right away...! Hope you share the good news of him growing in the future..) thank you again for sharing with me!

Heidi

 

[Johnnysmom]

Welcome!!

My son was diagnosed at 11 years old. He was losing weight and stopped growing. Now that he is on 6mp he has grown 8 inches in the last 2 years and gained 50 lbs. He is much healthier now that he is on medication. I know these drugs are hard to accept, we didn't want our son to take them at first either, but now we are just so grateful they exist.

I am sure you will find your way. There are never any easy decisions. It took about a year for growth and weight gain to take off.

(((((Hugs))))))