Newbie [ish ]

Hi, I joined the site in January, and lost my details, which is why I haven't written anything until now:biggrin:

I don't have crohns, but my son does. He is now 12, and was diagnosed in 2009 after many visits to the GP, who dismissed the symptoms for around a year.

My son was started on steriods [ prednisoline ] and Pentasa. then azathioprine.

The azathioprine was stopped after a year as my son refused blood tests, so for the past two years he has just been on Pentasa.

All was going okay until November 2012, when he started a flare up, resulting in a 6 week Modulen diet, which he finished 3 weeks ago. Since then the symptoms have flared up again and he is losing a lot of weight.
He is now due to have another endoscopy, colonoscopy and MRI next week to try to find out what is causing this.

It is good to know there is somewhere to chat to others who have an understanding of this disease. It would also be good to chat to single parents, especially if they are dealing with this on their own, as I am.

Hi CDJ

I'm sorry to hear that your sons not doing too well at the moment....:hug:

Feel free to join us in the parents of IBD forum. There are a few single mums there.

CDJ,

Welcome to the Forum. I have a 14 year old daughter who was diagnosed last year and this forum has been such a blessing. I have found lots of information and such caring support.

I know how frustrating it can be and if you have any questions let me know.

Hi CDJ! Re-Welcome to the forum! I'm so sorry that your son has Crohn's. I have Crohn's and always worry that my kids will one day have to deal with this monster.

I was curious why did your son refuse to have his blood drawn? Did the azathioprine work for him? My son has a needle phobia, but it would be better to give into the blood tests than have to have surgery.

I'm keeping my fingers crossed that he feels better soon!

Thank you for your replies.

Sybil, I think initially my son refused to give blood as he had a heavy handed doctor who really hurt him. Since then no one has managed to get near enough to get blood from him.
We have seen counsellers and physcotherapists and hypnotherapists, all to no avail. The problem seems that they will only go so far with him, but when he doesn't "conform" to their standard phobia tests, they have all given up. I am then left to try to find help elsewhere.

I feel now that most is down to control with him. He has no control over the disease, but he can say no to giving blood. Not that I think he is aware of what he is doing. Because of this flare up, he will almost certainly end up on different meds which will require blood tests, so I am keeping my fingers crossed that we can finally get somewhere.

When he goes for his endoscopies next week they are going to take blood while he is under, so at least that is one thing out of the way, for now.

Meant to say as well that azathioprine did work for him , it did take around 4 months to really start, but it worked well. It was only because he would give blood they had to take him off it.

That's really tough. I can see why the doctor couldn't keep prescribing it, though, because it can cause liver problems which can lead to death. There are so many reasons why he has to be able to have regular blood draws. Doctors need to keep an eye on tons of different things that can only be measured by blood like vitamin D deficiency, B12 deficiency, inflammatory markers, infection markers, liver function, etc. Most (if not all) of these drugs can affect the liver. I know this is hard, but I wonder if you couldn't go to a psychiatrist and get a prescription for valium to take just on blood draw days so he doesn't lose bowel so early in the game. I would hate to see him (and you because it's much harder for the parents!) facing a small bowel resection on an emergency basis. Or, better yet, give him something each time he has a blood draw that is a huge reward. For example, if he plays XBox, you could say, "Every month you have your blood drawn I will buy you a month's worth of Xbox Live gold membership." Something to entice him and turn it back into something he can control.

I'm sorry you're having to go through this. I'm sending you both big hugs!!

I'd try to get back on azathioprine. It's a good drug and doesn't take awhile to kick in, but when it does, it's worth it.

believe me I have bribed him with everything, he has cost me a fortune We can talk about it at home, and he goes along to the hospital with no problem, it is when they call him in to take blood that he freezes and won't go through with it.

I am very aware of all the problems of him not having his blood work done, as is he. He is a very mature, intelligent child, but this holds nothing when he is scared of going through with it.
I wish I had the answers as to how to get through this, it doesn't matter how much I explain to him what could happen, he won't go through with it. They have talked about giving him a sedative to take blood, but so far they have held off as they don't want to have to do that everytime.

I sure feel for you on the phobia. I use to be the person drawing the blood (Phlebotomist). Maybe if he could read about it (the actual blood draw) from a medical stand point. Knowledge seems to help with fear. He could visualize the needle going into his vein, understand even about what size needles, what tubes are used for each test. I dont know, just an idea. I think the reward idea sounds good too.

It is very important, as you know, to be able to monitor his vital organs. He can also learn about his liver, his kidney's, his digestive system. That might help too.

Where is his Crohns located? does he have growth issues? Does he have a lot of pain with his Crohns?

wishing you both the best.

Wow, you really are in a tough spot. I'm sorry you're going through this. I'm sorry my suggestions weren't more helpful! I will keep my fingers crossed that something changes on the blood draw front soon!! Big hugs!!

CDJ said:

believe me I have bribed him with everything, he has cost me a fortune We can talk about it at home, and he goes along to the hospital with no problem, it is when they call him in to take blood that he freezes and won't go through with it.

I am very aware of all the problems of him not having his blood work done, as is he. He is a very mature, intelligent child, but this holds nothing when he is scared of going through with it.
I wish I had the answers as to how to get through this, it doesn't matter how much I explain to him what could happen, he won't go through with it. They have talked about giving him a sedative to take blood, but so far they have held off as they don't want to have to do that everytime.

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