I feel like i made a mistake for my son and i just want to cry :(

[griffin123]

I feel like i made a mistake for my son and i just want to cry I posted an update!

My son had his GI app last Wednesday and we decided to start remicade. My son was on 6MP for about 3 months and he was taking the pentasa with it too but his labs did not look good last week so that's why we decided to go with the remicade. The GI gave me the choice to have my son keep taking the 6MP or start the MTX while he is taking remicade. After a lot of research I decided to start the MTX with the remicade and stop the 6MP and pentasa.

We a did the switch Monday night and started the MTX and my son has just went downhill from there. He was fine Monday night but Tuesday he had the stomach ache and didn't feel good, he was fine yesterday but last night he woke up 3 times to go poop and it was really runny and this morning his stomach is hurting and he has blood in his poop. I believe all this is because I stopped his meds he has been taking and started some new meds for him. If I just stayed with the 6MP then he would be fine right now and not in the bathroom all the time.
He has his first remicade infusion tomorrow morning so i'm hoping he will be fine tomorrow after his infusion but in the mean time I feel like it's my fault that he is in pain and the bathroom all the time right now. I feel horrible and have been crying, I made the decision to change meds and I am making my son be in pain right now
I wish I could go back and not switch his meds and just keep him on the 6MP and pentasa. He would be in school right now not in the bathroom. Thanks for letting me vent on here, I have no one around me I can talk to about this they don't understand what i'm going through.

 

[Sascot]

So sorry you are going through this. The medication decisions are one of the hardest of all. I really hope that this doesn't last long and the 2 new meds make him so much better it will all be worth it. Good luck for the Remicade!

 

[poppets mum]

Don't blame yourself for trying to do the right thing for your son. It sounds like you didn't go into the new meds change lightly, and these decisions are tough, and not something most parents can relate to. The parenting manuals don't do much to prepare you for this kind of thing. you sound like an amazing,involved, caring loving mother. Which is what your son needs more than anything. Look at all the things you have done right and keep reminding yourself of those, while you go through this bumpy patch waiting for things to improve.

 

[Tesscorm]

There are no mistakes and no wrong decisions!!! You made the best decision, the right decision based on the options and information you were given. None of us have a crystall ball, including our GIs! You are doing a great job in a very difficult situation. :ghug:

I hope his symptoms are very short lived and the remicade will have him feeling much better soon!!!

 

[Mehita]

It sounds like even with the 6MP he was about to enter a flare anyway if his labs weren't looking good. I think you're actually being proactive. You did your research and made the best decision you could given the situation. Don't beat yourself up about this... it's just a blip between meds.

I will say that Remicade has been the best thing ever for my son. He's only had the three loading doses so far, but he responded after the first and he's been happy, healthy and growing ridiculously in the last 11 weeks. I regret wasting 6 months on Azathioprine (6MP) which didn't do anything for him... but we had to give it a try at least.

Mtx can cause nausea in some people. We have no experience with it here, but maybe that's the reason he's not feeling great right now?

I hope the infusion goes well! Keep us posted...

 

[Jmrogers4]

Sorry he is feeling so poorly, but as others have said you made the best decision given the information at hand and we can't see into the future.
We are here now getting second infusion. The last 2 weeks have been a complete turn around for us. Jack is eating and has more energy. Urgency with BM's is gone. We really struggled with making this decision but glad we did. They are great here. Love the early morning infusions if you can schedule them. The GI comes in and spends a bunch of time with us since they don't really open until 9:00. Nurses are great, we usually have Stacy but she is off today so we have Julie and she has been in every 15 minutes to check on us. I hope he has quick results and all goes well tomorrow. I'm filling the room with positive thoughts for you

 

[my little penguin]

Hugs
The half life of 6-mp is much longer ( meaning he would still have some in his system even though he hasn't taken it in a little bit.
So as others have said you were probably heading into a flare anyway.
Remicade was a miracle for my little one.
Hope the infusion turns things around.

 

[CrohnsKidMom]

I am sorry you are having to go through this! There are always a ton of "what ifs" that go through your head, but you've made the best decision based on the info you have and the research you've done. Like the others have said, obviously something had to be done anyway, since his labs were not looking good. So hang in there, maybe this just a little bump in the road and the new meds will turn out to be just what he needs. I think it would be worth a little discussion with your GI though.

 

[griffin123]

Sorry he is feeling so poorly, but as others have said you made the best decision given the information at hand and we can't see into the future.
We are here now getting second infusion. The last 2 weeks have been a complete turn around for us. Jack is eating and has more energy. Urgency with BM's is gone. We really struggled with making this decision but glad we did. They are great here. Love the early morning infusions if you can schedule them. The GI comes in and spends a bunch of time with us since they don't really open until 9:00. Nurses are great, we usually have Stacy but she is off today so we have Julie and she has been in every 15 minutes to check on us. I hope he has quick results and all goes well tomorrow. I'm filling the room with positive thoughts for you

Thanks, we will be there at 8:30 tomorrow morning and then at 9:00 in 2 weeks. I'm anxious, nervous and excited for tomorrow I'm just a ball of emotions right now lol. I hope and pray that the remicade works well for my son like it has for yours.

 

[griffin123]

Thanks everyone for the encouraging words. This all is still kind of new to me since my son was only diagnosed a year ago this month and it just feels like we are in the same place we were last year at this time. I'm glad I found this group to help me along the way, I have read and received a lot of good info on here. I really wish there was a support group I could go to, I can talk to my friends and they say i'm sorry and all that stuff but they don't fully understand what we are going through since they have not been through it themselves.
Thank you everyone again for the kind encouraging words it does mean a lot to me and helps me reassure myself I am making the best decision I can for the situation we are in.

 

[crohnsinct]

Just echoing the committee here! You are doing a fabulous job and no one knows better than us the amount of research and questioning you have done. I am also sending out prayers that Remicade does its thing for your guy! Keep us posted!

 

[DustyKat]

{MEGA HUGS} to you griffin. :ghug:

I can only agree and add to the wonderful advice you been given by saying that there are never wrong decisions here, just different ones, and you have no choice but to make decisions based on what is in front at that point in time. You didn’t decide to fix something that wasn’t broken, your lads labs were showing that the medication wasn’t doing its job. It was only going to be a matter of time before there was no decision to make and it is very likely he would have been in a far worse position than he is now, bless him.

I’m not saying that stopping the meds may not have have had some influence but deep in my heart I truly cannot see that there is more to this than just stopping his 6MP and Pentasa and that much of this is a cruel coincidence. I know well enough that everyone’s Crohn’s journey is different but just let me say this, my son is on Imuran (6MP’s parent drug) and Pentasa and although it gives me no joy to say it :lol: he has had missed doses on more than one occasion and on the rare occasion it has run into two days but it has had no adverse effect on the course of his disease.

I don’t think I would be wrong in saying that all of us here, given your situation, would feel exactly as you do. I know I would be the first in line to draw the same conclusions as you have. So please just know that you are not alone in how this has affected you :heart: but also know that being removed from it, so to speak, we maybe see things in a different light and that light may give a truer reflection of what is going on. I am not saying that to imply that it isn’t what it is but I have been where you are, as we all have, and when you are in that hole it is damned hard not feel the guilt of heartbreak and what ifs because it stems from an overwhelming love of your child and a never ending desire to take away their pain and suffering and make it your own.

Be kind to yourself mum, there is no harder decision in this world than having to make a decision like this on behalf of your child but since that decision is borne out of love it can never be wrong.

I hope with all my heart that Remicade is your son’s miracle drug and not only will he soon be on top of things again but firmly in the remission that 6MP could not give him. Good luck!

:hang: Mum, you are doing fab!

Dusty. xxx

 

[Brian'sMom]

My son had climbing numbers over the summer with no pain symptoms. Well, the pain soon caught up with the numbers. So I think your son was going to flare... the timing may have made it seem like it was your med change... but i'll bet it wasn't. There are so many doing great on Remicade. Don't be so hard on yourself. I second the comments that you are doing what you felt was best with the info your GI gave you. After the Remicade infusion you may be singing dixie!!

 

[griffin123]

A little update here
My son N went for his first remicade infusion yesterday and everything went very well. I talked to his GI about him having blood in his poop the day before and he looked at my son's butt and that skin tag (i'm not sure the other word for it) they can get was way bigger than last time so he thinks that's where the blood came from and he said it's good we are starting remicade because that will help make the skin tag get smaller. We go back in 2 weeks for another infusion and he will check the skin tag again and see how it looks.

Now I'm just hoping my son starts eating more and starts gaining some more weight. At his app yesterday he weighed 76 lbs. He just turned 14 last week so he is very tiny for his age.

 

[my little penguin]

Is he on any supplements ( peptamen jr , peptide , ensure or boost)?
This in addition to remicade really helped my son grow and gain.
He is now 30 lbs heavier and 7 to 8 inches taller.
He only drinks 3 peptamen jr a day .
Hope remicade does its magic

 

[Jmrogers4]

^^^ Same, Jack was stuck at 77lbs until we added Peptide a year ago. Remicade has made a big difference in appetite. Hope it is the same with you

 

[griffin123]

Is he on any supplements ( peptamen jr , peptide , ensure or boost)?
This in addition to remicade really helped my son grow and gain.
He is now 30 lbs heavier and 7 to 8 inches taller.
He only drinks 3 peptamen jr a day .
Hope remicade does its magic

Yes, he drinks the boost plus once, sometimes twice a day. It has helped him gain some weight but I told him now he has to me more focused on drinking them while he's on the remicade so he can start growing more.