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13 year old son has crohns and will have a blood transfusion this Wed

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Crohn's Disease
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Posted 12/5/2011 11:24 PM (GMT 0)
Could somebody give me some advise as two what the reaction will be to the BT.

My son has been on a strong steroid for the past two weeks. He has a low blood count of 7.6 hence the transfusion.

Its very confusing at the moment as you feel helpless as a perant.

I have read some of the post's and it has been very useful.

Loads of replies would be greatfully recieved.

Kind Regards  CHUBBYCHEEKS.

Posted 12/5/2011 11:37 PM (GMT 0)
Hi CC,

My daughter was diagnosed at 13, so I know exactly what you're going through and feeling. Esp. the helpless part.

I can't really comment on the blood transfusion, as no experience there. Has he been passing blood for some time? Sometime when inflammatiion is present for a long time, the tissues weep blood, and over time levels start to drop. 

He will likely continue on the steroid, (Prednisone), for 8-10 weeks, but he should be starting to feel better very soon.

I'm sure you'll get alot of advise here, keep posting your questions, there is a wealth of knowledge and experience on this forum. 

Posted 12/5/2011 11:58 PM (GMT 0)
Thanks for your reply, my husband sent the first message being on night shift and the great dad he is, i am sending a quick reply before I fall into the land of nod and hijacking his post - apologies! Our son was diagnosed with oral chrons OFG when he was seven, but this is his first real blood loss flare up which started in august 2011. He has been on oral pred since october, was admitted two weeks ago for IV steroids and started 6mp two weeks ago also. He had endoscope and colonoscopy last week and they found his colon to be very diseased, they couldn't go as far with colonoscopy as they wanted as they feared perforation. His haemoglobin levels are 7.7 at the moment hence IV infusion and we wondered how long it would take after the infusion until his energy levels would return to normal, he is very eager to return to school and most importantly sport!

Thanks for your help.
Posted 12/6/2011 12:02 AM (GMT 0)
Yes he has been passing blood but in the last few months it had gotten abit heavy, yet he still played all sports and didnt moan or complain.
I will keep you posted about the BT.
Its my intention to introduce my son to this website as from what i have read in a few mins has been invaluable.

Thanks for your reply  CC

Posted 12/6/2011 12:19 AM (GMT 0)
It's always so sad to hear about children. I wish I could help more with the transfusion stuff, but
thankfully I've never had to have one. But I wish him so much luck for Wednesday!!
Posted 12/6/2011 12:33 AM (GMT 0)
Thanks Vicky
Posted 12/6/2011 1:35 AM (GMT 0)
When I was hospitalized in August with Sepsis they gave me two units as a precaution, I'm not sure what my true Hemo count was at the time, but in the months prior I was hovering around 10 and I was always feeling weak. Never had visible blood in my stools though. I didn't have any reaction to the transfusion and they watched me closely to make sure, but since I was already very ill at the time I didn't exactly bounce back from it either. In other cases I've heard about where anemia was the only issue people do feel quite a bit better following a transfusion.
Posted 12/6/2011 1:38 AM (GMT 0)
Just wanted to say welcome to HW.
Also, so sorry you and your son have to deal with all this.
Posted 12/6/2011 1:46 AM (GMT 0)
When I was first hospitalized back in dec 2008 my levels dropped to about a 3 so I recieve two units of blood and I felt an instant difference in my energy levels and over all well being. Best of luck to your son and your family!
Posted 12/6/2011 4:57 AM (GMT 0)
Over the summer my hemo dropped to 4.7. I received 4 units of blood and felt a huge difference. Even after just 2 before they decided I needed 2 more I felt so much better, a lot less weak and tired.

After that they also gave me a couple iron infusions to help boost up the blood I got, those really helped too!

My first 2 were done very quickly because I was so low and the ER doctors were a little freaked out. I didn't have any reactions or negative effects even with receiving each unit in about an hour.
Posted 12/6/2011 8:38 PM (GMT 0)
I've never had a BT, but wanted to wish you luck and welcome!
Posted 12/6/2011 9:35 PM (GMT 0)
I had a BT in 2001. My hemoglobin was 7. I didn't have any negative reaction to the transfusion. It helped my levels come up to about a 9? I'm so sorry your son is going through this. I have children and know how hard it is when they struggle. I hope his transfusion goes well and that he feels better soon. Hang in there mom!
Posted 12/8/2011 7:42 PM (GMT 0)
We got to the hospital at 9.00am and for some reason did not match his blood type until 5.00pm so his transfusion wasn't finished until after 10.00pm, we left the hospital to travel home (1.5 hours) and my son felt very unwell with chest pains, weakness and a cold sweat so we called to our local A+E Department and they carried out an ECG and chest xray, all which thankfully were clear. He also had a similar episode of chest pain, weakness and cold sweats last weekend again at night time where he had to lie on the floor until he felt ok again and he says he gets frequent smaller chest pains.

I can only put this down to the 6MP (which he takes at 8pm) he started a little over 2 weeks ago, as these symptoms only started when he doubled his dose after one week. Has anyone else experienced these side effects with 6MP? If anything he has had less energy and more of a feeling of being unwell since he started the 6MP - will this pass and if so how long will this take. We haven't noticed any improvement in his energy levels since the blood transfusion but I am wondering is this the 6MP side effects also?

Or are the chest pains part of his Crohn's??

I really appreciate all your support
x
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