G'son is now in ICU after 1st Humira injections

How scary...I hope he'll be feeling much better very quickly.

Nana, I will keep your grandson in my prayers!

(((Hugs))). I am so sorry that your grandson is not getting better yet. I hope he'll be on the road to recovery soon. I've heard of allergic reactions to Humira that can put a person in anaphylactic shock, but I've not heard of any of the anti-tnf agents causing heart issues. My husband was very sick last year with crohn's and a c-diff infection, and one of his symptoms, was tachycardia (fast heart rate), and feeling very very weak (fatigue, he didn't faint, but was close a few times, chills, clammy, sweaty, feverish). He only got better after being given lots of IV fluids, and they put him on IV nutrition as well.

They did an EKG for my husband's heart to rule out heart conditions - they did notice that his heart rate was very elevated (like 140-150 beats per minute) while resting, peaking at around 170 when he moved around. He couldn't fall asleep because his heart was pounding so hard. For him, they said that this was because he was dehydrated, and very malnourished, and had so much inflammation, and was losing a lot of blood because of the crohn's. They also gave him IV pottasium. Please make sure your grandson is being well hydrated, and is getting at least 2000-2500 calories daily through IV nutrition. Also, check his hemoglobin levels, perhaps he now needs a transfusion - low hemoglobin levels can cause extreme fatigue and I know my husband was very very tired, and I needed to go stand in the bathroom with him, because he was afraid he'd faint. Also, another thing they mentioned is that laying down in bed all the time can also result in elevated heart rate anytime the person does move, because your heart gets used to your body not doing anything. They recommended he move around as much as possible, but as weak as he was, it was very hard. But once the remicade started working, he started slowly moving around, and as the inflammation in his guts reduced, so did his heart rate.

It was a scary time for us, and I'm sure it's a very scary and difficult time for you. Hang in there, it usually does get better, once they find the right meds for him. For my husband, they said that as long as his heart rate didn't frequently go above 150, he's going to be ok, and it's not going to hurt his heart. And keeping him hydrated, giving him some nutrition, the remicade working, and getting him to slowly move around were the keys to getting his heart rate down. For my husband, it took about 6 months after he was released from the hospital for his resting heart rate to come down to the low 70s where it used to be before he got sick.

Based on my experience, it's probably the crohn's with the inflammation, low iron, dehydration, low pottasium and malnutrition, and general stress on the body that is causing your grandson's heart issues. I think that once the crohn's symptoms come under control, his heart stuff will also go away - at least that's how it was with my husband. It took about 1 week from when my husband got his first remicade infusion to when he got some relief, and from there, he was on the road to recovery, albeit with a few bumps along the way. I hope the Humira that he got yesterday will heal his insides, and put him on the road to recovery as well.

My thoughts are with you and your grandson. Hang in there, with any luck at all, he'll get better soon.

(((Hugs)))
PV

Thankyou so much for all the hugs & prayers - orngie, PSI.Delhi, EMom, Crohnielass!

Onthecan Jenn, I'll find out later today exactly what that tube to his heart is doing. I feel badly that you have so much on your plate right now - yet there you are, consoling a worrywart like me! I hope today is a better day for you, dear! Hugs!

PV, the info you gave me is fabulous! Thank you from the bottom of my heart. Finally, I am armed with some questions to ask the doctor.... I've been so upset I couldn't think what I might ask that would shed light on what is happening. You are a dear. Your husband's 45 day hospital stay sounds very similar to what is going on with my grandson. I'm so glad you husband is in remission. That helps me realize that despite the present dilema, my g'son CAN and WILL get better.

There are so many of you on this forum who's CD is much worse than my grandson's. Hugs & prayers to all of you.

Hi I am hoping things will improve soon and be thinking of you both.lol gail

Nana, I'm glad our experience can be of some help to you. It was a terrible time for us, as I am sure it is for you. Just hang in there, and take each day at a time. It can and usually does get better. My husband is now living a very normal life - eats a normal diet (just stays away from sugars), has lots of energy, is working full time, has put back all the weight he lost, and is exercising to put on the muscle mass he lost when he was sick. It's almost like the nightmare of last year didn't happen - so life does get to normal, and manageable once you find a drug combination that works. I hope that now we know what he has, the next time he has a flare up, we can control it better - but that's a worry for when it happens. I've learned to really embrace carpe diem, and make the best decisions you can for the future, but not to dwell on all the things that can go wrong in the future.

Nana, is your grandson on IV solumedrol? Your sig says he's on 50mgs of hydrocortisone. Once my husband's GI realized after a colonoscopy how bad the inflammation in my husband's colon was, he put my husband on 120mgs of IV solumedrol, and they slowly tapered him off of it after the remicade started working. They only put my husband back on oral steroids once he showed some improvement in his stool. Is there a reason why they are not trying something like that? One of the reasons they put my husband on IV solumedrol is becasue they suspected that he wasn't even absorbing the oral steroids.

For my husband, even those high doses of steroids, couldn't stop the crohn's flare, and his GI said starting at the transverse colon my husband's colon was like hamburger meat and he couldn't finish the colonoscopy for fear of perforation. So, he recommended we try remicade as a last ditch effort before surgery to remove the affected part of the colon, and referred a colo-rectal surgeon to monitor our case, and answer our questions. If you haven't already, it may be prudent to find out if your grandson can be helped by surgery, especially if the loading doses of humira don't make him better.

My husband's GI took the time to talk to us about a plan of action for my husband after the colonoscopy showed how severe his inflammation (due to Crohn's, and not c-diff) was:
1.) Increase to high doses of IV Solumedrol
2.) Give it one week - if that doesn't do the trick, go to remicade, and get a surgical consult
3.) If after the loading doses of remicade are done, no or very little improvement is seen, proceed with surgery

He didn't recommend waiting to try adding methotrexate, or 6-mp etc to the mix, because those meds typically took about 3 months to work, and he didn't feel that my husband would survive 3 months in the condition he was in. So, he skipped those meds altogether and went directly to remicade. Also, he put my husband on IV nutrition to give his bowels a rest - for about a 2 week period, all he ate was chicken broth. Once he started feeling a little better, he started with ensure, and then soft foods, etc.

If the remicade got my husband well enough to leave home, but if he had trouble getting off the steroids, or getting into complete remission, then, he said he would consider adding another med like 6-mp or imuran into the mix. He didn't want to do it right away, because taking both remicade and 6-mp/imuran/methotrexate increases the chances of some lymphomas.

I thought we got good advice from his GI. Perhaps having a plan of action, and preparing for what maybe the next step (like surgery) will help in the treatment of your grandson. Please keep let us posted on how he's doing. I have a fair idea of the agony and despair you're feeling, and my thoughts are with you.

(((Hugs)))
PV

Hi Nana, I hope you let us know the answers to all the questions you were going to ask the doctors. That terrifies me, as I think I may have to be on Humira after I finish with Entocort (or a similar drug.. I had a bad reaction to Pentasa so I'm sure that they will have to put me on something stronger). It's awful some of the reactions people seem to have to these medications, and I really hope they can find something that improves his condition, rather than landing him in the ICU. I will keep my fingers crossed for you and your grandson - I can't even imagine what you two must be going through right now!

Hi Nana i wish you lived down the road from me so i could at least sit with you and talk and comfort you in your time of need,i just read your list of questions and there great and the part about did he consult any other doctors to be brought in for your grandsons care if not recommend that you would like a second opinion it wouldn't hurt his feelings and besides this is your grandson and you are his eyes and ears now so do what ever you can for this little boy,by the way how is grandson#2 doing he must be terrified with his brother in ICU tell him I'm thinking about him and if he is on facebook tell him to look me up or send me an E-Mail my address is listed.The angels are watching over your grandson nana when your not there so don't you go and run yourself down cause than you won't be any good fro you or the children take it easy nana get some rest take a walk what ever you have to do so you don't worry so much and i bet your not eat ting go home make up a nice beef stew or a casserole for you and grandson#2 and have a nice dessert and maybe stay home a bite watch a funny movie with #2 feel better Nana your still in my prayers the both of you. Nana i go to the hospital on Friday to get my new picc put in but i will be talking to you after that but tomorrow i have to get a cat-scan and pick up my stuff for my scope and there is a huge sale 50% of at a local furniture store i really don't need any thing but my niece gets all the old stuff from here i furnished her whole place so I'm gonna go and take a look around anyway depending on how i feel that is. God Bless You Nana And Your Boy Lots Of Love Jenn

I've been following your stiuation with interest. At 24, I spent 5 days in ICU then 21 days in hospital. My situation was/is different from your grandson...but it has been hitting home. His toughness will help pull him through. As others have said make sure you take care of yourself. As onthecan said I wish I could give you a hug and sit with you awhile. You, your grandson, and those around you are in my thoughts and prayers.

Hi Sounds like there are some positive things there and will be thinking of you both ..lol gail

Nana,
The most important thing is to know that someone loves and cares about you. And you definately do that for him!

I am touched by the tremendous support this forum offers! You are all such beautiful people.... To say thank you, hardly seem enough.... you bring tears to my eyes. I can't think of a better place to learn more about what my g'son is going through than by talking with others in the same boat who have years of experience in all the things that are happening to him.

My g'son is still having a rough go of it. His hemoglobin has dropped farther.... now at 85. I don't understand why his GI doc has not given him a blood transfusion, although this morning she did tell him if his blood count went any lower she would consider one tomorrow.... It's just that tomorrow seems a long way off right now.

He is a little emotional tonight, shaky and weepy - very unusual for him. I remember how I felt several times when I needed blood transfusions & I could always tell when my hemoglobin was low - I too, became weepy.

Humira is going to take a long time (right now, to me, 1 - 3 months is a LONG time) before it starts to help him. I worry if permanent damage is happening to his colon because the inflammation & bleeding are still raging in his body. He has flu like symptoms. Not sure if that is the result of switching from 100mg Hydrocortisone down to 50mg, perhaps that was too big a drop? Or it could be the side effect of the Humira. He was so "drugged" when I left him tonight.... but still in pain; I know, it doesn't make sense. The antibiotics are making him feel, as he says "yukie & nauseated". Tomorrow is another day, a brand new day.....

Anyone know why the doc hasn't blood transfused him yet?