Bloated, crampy, lethargic...what to do?

[kernelmom3]

S is very bloated, crampy and lethargic. She's still not eating anything because of the continuous 24 hour NG feeding. When she does have a bowel movement it's a very small amount and not formed. I know from the MRI she had two weeks ago that her intestines are pretty dilated (they called it a partial obstruction). I called the GI on call and he said as long as she's not vomiting or spiking a fever and she is going to the bathroom, she's ok. She's taking Colace and Miralax twice a day.

I don't know if I should let her sleep or try to keep her up! I've never seen her this sleepy. We're 6+ weeks into this and it just seems like it's never going to end!!! It feels like so long ago that she felt good.

 

[Maya142]

Miralax can cause bloating. Did you ask if she can try a more broken down formula? Semi-elemental like Peptamen Jr or Pediasure Peptide?

Have you considered a second opinion? The top three Children's hospitals for IBD are Boston Children's, CHOP and Children's hospital of Pittsburgh. Cincinnati Children's is also up there.

Remind me, what meds is she on?

Sending hugs - hang in there. It gets easier, as you know with your son. It just takes a while and it feels like forever while you are waiting :ghug:.

 

[kernelmom3]

Thanks for that. I do remember wondering when things would get better for my son...such deja vu!

Right now she's had two loading doses of Remicade (last loading dose will be January 5th then every 8 weeks). She's been taking Intuniv for a chronic motor tic disorder (anxiety/OCD) since July. She's been on Ertapenam for almost 2 weeks (last dose in 3 days) and Diflucan. Both antibiotics are for the two abscesses. I'm definitely looking into second opinions. We live in IL very close to the WI border so I'm going to call WI Children's Hospital on Monday. I've been trying to figure out how to get a second opinion for about 3 weeks now but I know it will take a few weeks (maybe months!) to get her in anywhere and I don't want to wait too long during this active flare.

I know Crohn's can cause fatigue but I wonder why she's so tired all of a sudden. The last time she was this sleepy she was in a lot of pain!

 

[CarolinAlaska]

Sometimes our children's symptoms are so scary, aren't they? Lethargy can be a symptom of being very sick - perhaps sepsis or her chemistry is off. If your mama instinct says she just isn't right, take her to the hospital ER and have her checked out. Did she just get out of the hospital?

 

[Maya142]

I agree, I would also take her to ER if you think something seems really off. Even if she isn't vomiting or doesn't have fever - she's been in the hospital so recently, better to be safe.

Hang in there - some people respond immediately to Remicade but others take longer. My daughter took 4 infusions and we had to increase the dose and frequency before it worked.

Definitely call as soon as possible for a second opinion. It can take months!

Keep us updated, we are thinking of you!

 

[ronroush7]

Agree

 

[kernelmom3]

S threw up a few hours ago so GI said to go to hospital and they admitted her directly to peds floor. They took an X-ray and her whole bowel is dilated. There may be free air whic would mean perf so they have to do more X-rays. Then we'll go from there. Please please pray for her!!!

 

[ronroush7]

Just said a prayer.

 

[Maya142]

Sending hugs and thinking of you!! Your poor girl :ghug:.

 

[my little penguin]

Sending lots of hugs and prays your way

 

[kernelmom3]

No perforation!!!! THANK GOD! Thanks for all your prayers and well wishes!! She's still very bloated and slightly crampy and they are calling it a bowel obstruction. They're going to do an MRI today to see how dilated her bowel is and to see if the abscesses are gone. Depending on those results, they may do another tube down her nose to decompress her belly or they may just do surgery. Please keep those prayers coming!!! Thanks for all the support (as usual)....I'm not happy that ANY child or parent has to go through this, but I'm happy to have you all here!

 

[Maya142]

Oh gosh, your poor girl! I hope they figure something out to get her feeling WELL. Sending big hugs and prayers. We will keep you in our thoughts and hope that she begins to feel better quickly :ghug:.

 

[pdx]

I really hope that everything goes well and that your daughter is on the road to good health soon. :ghug:

 

[CarolinAlaska]

No perforation!!!! THANK GOD! Thanks for all your prayers and well wishes!! She's still very bloated and slightly crampy and they are calling it a bowel obstruction. They're going to do an MRI today to see how dilated her bowel is and to see if the abscesses are gone. Depending on those results, they may do another tube down her nose to decompress her belly or they may just do surgery. Please keep those prayers coming!!! Thanks for all the support (as usual)....I'm not happy that ANY child or parent has to go through this, but I'm happy to have you all here!

How's she doing? Is she improving? I'm glad she's being taken seriously now. I pray her health turns for the better soon.

 

[kimmidwife]

Hope she is doin g better!

 

[Pilgrim]

Oh terrible and scary! Prayers for your daughter and for you!