4 years old and on Remicade

[QueenGothel]

My daughter is awaiting a TB test and will be receiving her first infusion of Remicade as a last resort effort to avoid surgery. She has been in the hospital since Jan 20th. I need to hear a success story of a child that takes this drug. I know there are horrible side effects, at this point she has had two blood transfusions and is severely malnourished. I just want her to live. I am praying nightly and am a total wreck. I honestly cannot read through all of these posts and not go insane. Please direct me to something positive where a child is happy and loving life. I cannot read anymore negative things. I am very worried.:frown:

 

[mickey]

My prayers are with you and your family. Perhaps the hospital can give you information on a local support group or direct you to speak to other families as well? Stay strong!

 

[Kat]

I believe my daughter is a success story.....although she was 14 years old when diagnosed with Crohn's. It has been just over a year since her initial diagnosis and her first remicade infusion. She is doing wonderful and is back to a normal happy teenager (or as happy and normal as a teenager can be!) She feels excellent and looks even better. Her infusions are every 6 weeks (instead of the normal 8 weeks), as she started showing some symptoms at 6 weeks. It is a miracle drug to us. Good luck to you! Good thoughts and prayers are sent your way too!

 

[QueenGothel]

So how was her experience. Was she in good health at the time of her first infusion. My daughter is in terrible health now. Was your daughter on steroids too? They told me she would have the immune system like someone with AIDS when she gets home. Does she get sick a lot? Do you feel you can let her out of the bubble? We live in Michigan so winters are a very sickly time.

 

[chrisnsteph1022]

Good grief, are they TRYING to scare you? Her immune system will be slightly compromised, but she'll be able to leave the house. I can't attest to the Remicade in a child, but I was severely ill when I started it 3 weeks ago and I'm in remission now. It's an amazing drug. I know you must be scared to death about your baby. Hang in there.

 

[chrisnsteph1022]

Oh, and I was on Cimzia, another anti-TNF like Remicade, for over a year and was only sick once. I got bronchitis that lasted a couple weeks. Otherwise, no problems. I haven't gotten sick at all in the 3 weeks I've been on Remicade. I'm also on another immune suppressant with it (azathioprine).

 

[imwood]

That's a terrible thing to tell you!!! My younger brother felt and acted like Superman when on Remicade. It was the only time in his life he was able to work a full-time job. The only time he was able to bend down & tie his shoes without thinking about it. He never got sick at all. Cold or otherwise. And he was in terrible health when he started. Physically and mentally. He could not walk up a flight of stairs without complete exhaustion. He did not get out of bed for days at a time & only ate miso soup.

 

[Kat]

My daughter was in pretty good health. She was on prednisone, 40 mg. I think the prednisone was much worse. Her immune system is a little compromised, but we don't hold her back for anything. She lives a very active life, running with her friends, playing soccer on a travel team and just does what every teenager does. The first infusion was a little stressful, but the hospital staff took great care of her. She feels tremendous after the infusions. She looks incredible and feels incredible. After the first 6months, many family and friends would come up to me and tell me how wonderful she looked. What we thought was a normal healthy daughter was really a daughter living with undiagnosed crohn's. I think remicade made a great difference for her. She does not get sick a lot. This was the first year she got a flu shot and so far no colds or flu for her. I know how you feel, we had the same feelings. I had many sleepless nights and cried many times a day. I know this is something that can be lived with there are many success stories. Hang in there, the day Ashley was diagnosed we felt our world had fallen apart, but I can honestly say it will get better. Remicade has been amazing for us, trust your doctor. Good thoughts and prayers! Hang in there!

Ps.... We also live in Michigan! Go RED WINGS!

 

[moogie]

I do not know why people say such things.

Yes remicade has some risks. Aspirin as risk too and we give that to everybody.

YOu daughter is very ill remicade will not make her worst. I am sure she will be checked by doctors and nurses that are very exprienced at this. As for the immunities, I have three young kids 9 11 and 13 and they get colds all the time. Since I've been on remi I've not caught one of their colds at all. So yes we are weaker but we are not without any protections.

Where I go my nurase has been working there for over 10m years and she's never seen a case that was so dangerous. The wrost she seen was an allergic reactions and those can be fix quite easily. I would not worry so much.

Good luck.

 

[QueenGothel]

She had her first dose today and no reaction. Praying it helps her go into remission, and a long remission. Thank you everyone. She has been moved to U of M Motts children's hospital in Ann arbor MI and they were Wayyyyy better at easing my fears. Praying it is her miracle, doc did want to get my hopes up bc she has uc and he doesn't see a sign of crohns per MRE yesterday. I will keep ya updated.

 

[Johnnysmom]

Mary,
I know Johnny doesn't take remicade but I had all the same fears about the immune system effects with 6mp. Johnny was actually more prone to catching things before he was diagnosed because he was so malnourished. He has been on 6mp 4 months and has only had one cold. And we all had it and I would say he faired the best out of all of us. I give him antibacterial wipes for school. (The hand sanitizer only kills bacteria not viruses so the wipes are better for viruses) and I am just extra careful about hand washing as soon as we get in the house. If one of us is sick I spray everything with lysol and wash all hand towels in the house and change tooth brushes. I know I am kind of crazy but it makes me feel better. Anyways, my point was it was much less scary than I thought and it is strange but they are so much more healthy with the disease less active than with their immune system compromised. I think you will be relieved once her treatments take effect.

Let us know how it goes.
((((Hugs)))))
Tiff

 

[QueenGothel]

Rowan is very malnourished but is eating again. My poor baby's bones are showing. I must say I really wish I would have had my iPad you guys really eased my mind too. Wish I would have asked this question at the other hospital. One thing I have learn this hindsight 20/20 business really stinks. It is everywhere. Part of being a parent I guess. I love this kid so much, it hurts me to see her in pain. I pray god takes her pain away with this medication. I pray for a miracle nightly. God is going to keep her safe. It is in his hands.

I really trust her doctor too and he told me he was praying too. He has a calming effect as he talked, we listened to him teach his students. Totally drilling the student to find the right answer. Kinda like Dr. House but nice. It was pretty amazing about how he went through her nutrition, it seemed like the dmc (first hospital) wasn't that into nutrition. She can eat whatever of course here too but getting the right doses of each thing was interesting to hear.

Thanks again! So much... More than words can express.

 

[QueenGothel]

Rowan responded well to the remicade. She received her second dose on Saturday afternoon. She has almost stopped bleeding completely. She is doing great. We are working on getting her to walk again. She has lost so much muscle mass. She cannot do stairs or get on the bed or toilet herself. Pt thinks she will turn around quickly. I hope so. GI plans to start her on Imuran also as a maintenance medication. Scary yes but the whole thing is scary. The bleeding, transfusions, malnutrition, and depression is all a lot to take in. They have taken her off the TPN and are planning for a Wednesday release. Cannot wait to get her home and sleeping in her own bed. It will be nice to have my whole family together again. I really miss my house and when I am there I just miss Rowan so it will wonderful to have it all back. The next bridge is a scary one but I hope I do not see it for a long time. Thanks for all the support, I really wouldn't have been doing so well if it weren't for all of you. Thanks so much.

 

[mickey]

Glad to hear things have turned around. Congrats!

 

[Steve S]

God bless that baby. I hope things continue to go well for her. We talked to Nate's doctor today because he had a sore spot on his bottom and we couldn't see anything that was causing it (were fearful it was maybe a fistula or abscess forming). We've got an appointment for his first dose of Remicade on March 1, but we can back out anytime prior if we'd like...we just set it up if that's the course we decide to take. Who knows...we only flip-flop about twice an hour now as opposed to every ten minutes on whether we're going to do Remi or not.

Keep on getting better, Rowan!

 

[SarahAnne]

Glad to hear that the Remicade is working. I hope Rowan is running and jumping around very soon!

 

[QueenGothel]

She is doing great. She convinced me to get her a kitty. I adopted one from the local shelter, she is 8 months old and such a lover. Waiting for the spaying to be done and we bring her home on Saturday. I hope it really distracts her and keeps her smiling.

 

[QueenGothel]

Got the kitty today... Something good happened. All night last night.. Rowan was having a lot of belly pain before and during BMs. Low grade fever that comes and goes on it's own. I am completely worried again. Trying not to show it.

This morning she seemed like she needed to poo but couldn't. Called GI and they said she could be constipating to give her some miralax. I did now she is pooing all yellow and very watery... Like looks like urine almost but thicker. Sorry tmi.

Is this normal if remi works does it usually keep working while waiting for next dose. I am so scared of seeing blood. She got two infusions 4 days apart. Has anyone had a flare right away? She got her last one on Feb 18th. it has been one week.

Feed her spinach pizza last night. Pizza seems to be the one thing she can eat... But I screwed it all up and gave her light Alfredo sauce and spinach on it. Which she loves. Should have just stuck with the normal pizza. There was spinach in the toilet. Good rule of thumb if you can see it in the toilet and know what it is don't eat it... Right.

Basically I need to know if I am freaking out when I shouldn't be.

She has severe ulcerative colitis.

 

[Bruces mom]

Hi I'm new...my 10 year old son has JA and UC. UC onset Feb 2011, with constipation. JA onset 3 years ago. He's on remicade too but his is more for JA...the yellowy egg drop soupy looking stuff is the mucus, becoming more thicker instead of snotty(sorry). It's will change to a whitish color. This is a good thing but her bowel movements will rely on how much miralax you give her. You will have to see how she does and adjust the dosage. Don't stop the
miralax...make sure she takes it. So she's not irritating what's trying to heal. It was the same thing I saw...Bruce went from blood clots, blood, coffee grounds to snotty mucus to thicker poohs to yellow mucus that looks stringy to white mucus to nothing. He just started a flare last week since onset last Feb that put him in hospital for a week. He's on remicade every 3 weeks but that's for his JA...and it helps his UC too. He takes canasa and asacol for UC. As far as remicade goes he does well not to get sick. But we homeschool, so he limited. Just get her eyes checked if she stays on prednisone for any length of
time. Pressure can build in the eyes.
The nurses atour infusion center say that some of the kids feel the difference after there infusion...they are able to tell the difference. The kids say about a week b4 there next infusion they can tell a difference. Bruce too. Hope this helps

 

[QueenGothel]

She can't take 5-Asa they caused her caused rectal bleeding and she went from mild to severe UC bc of them. Waiting for the tests to come back from California for her to start Imuran.

Thank you for the info it looks like she is having the same issue you were dealing with.

 

[SarahAnne]

Good luck guys. Sending positive thoughts your way.

:hug:

 

[Bruces mom]

Hoping your daughter gets better quick:heart:

 

[QueenGothel]

Now I am seeing coffee ground looking stool, she seems better beyond the BMs. Still giving the miralax. Do you think I should take her in? Could it be old poo breaking apart? What is the coffee ground look coming from?

 

[littlemissh]

Coffee ground is blood that has been 'altered' by spending longer in the gut (so altered by intestinal organisms) and also tends to be smaller amounts as not clotting. If she is having less bm's then this means the blood is staying there longer than fresh red blood.

When did the fresh blood stop?

 

[QueenGothel]

She was just released from hospital with blood last wednesday. They think she is constipated... Coffee grounds yes but there is chunks of really dark poop too looks like bark almost. U don't think it could be old stool? Giving her miralax and she seems to be feeling better but this poo has me confused from applesauce during the day to coffee grounds at night.

 

[littlemissh]

Hi,
I suffer from upper gi/small bowel (and just found out today possibly colonic crohns) - so this information may not help you.
I have recurrent melaena which is also altered blood and had large numbers of transfusions just like your little one-though much easier for me being an adult.
How it looks for me depends on the amount of blood but also the amount of D. If less d then I see less coffee grounds and more very thick /black and offensive smelling stools. I see coffee ground type when very watery diarrhoea which I think just dilutes it to smaller bits and so it looks like coffee grounds. Sometimes when my stool is just dark I really can't tell if its just a small amount of blood in there.
I know when it is more because it is obvious.
Is Rowan taking ferrous sulphate? I don't take it now because I can't tell when its blood and when its iron - so I don't know when to go for a blood test to check my hb.
If it continues it may well be worth at least getting her Hb checked to make sure she isn't getting anaemic again.

 

[QueenGothel]

Yes she is taking ferrous sulfate. I am switching to Gluconate twice daily as soon as can get to the store to pick them up. Supposed to be easier on the gut GI said. Doctor said not to worry bc she is active today... So he think if she is not acting sick today it won't be bothering her as much as it was two days ago. 2 days ago her belly was distended and she wonuldnt get off the couch today she actually rode her bike for the first time in 4 months.

I see small amounts of blood with the applesauce appearance once a day. There probably is some in with the coffee looking stuff, she is not pooping a ton either now. Yes it is like 4x a day but not a lot in the hat. Trying to avoid going to doc bc she has been so tramatized and I think it would make her much worse. It is a 45 minute drive and she will have anxiety the whole way too.

She is still anemic bc she was when we left the hospital. She is a bleeder but is not bleeding enough for me to think her hemo is dropping much if at all.