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Marni Update

Hi friends, as I said in my post on "How are parents coping", I am starting this little thread just to update those of you who have been so kind to ask about how Marni is doing.

She has actually been sleeping for hours now. Last night she didn't get much sleep, from 3 to 6 am, so after the morning parade (you know the one....nurses with drugs, housekeeping, doctors, nurses aides taking vitals), she got her "morfeen" as she spelled it in a text to my mother the other night, and then fell asleep. I was on the bed next to her and was afraid to move for hours because I didn't want to wake her up.

Our hospital doesn't have beds for parents, but rather those chairs that slide out into horribly uncomfortable beds. There's also a bench on the side of the room where I've slept before when we've been here, but it's just as uncomfortable. So, at Marni's request, I've been sleeping with her. For those of you who have been there, you know the balancing act that takes to sleep comfortably in a single bed . Still it was better than the chair bed.

We arrived here Friday (Today is Monday) and started her on morphine right away. It helped SO much, and she was acting so "normal" that for a few moments I actually thought I might have made a mistake in admitting her. But of course, my decision was justified when the pain came back and so did the quick trips to the bathroom.

In speaking with our doctor, the plan as of Friday night was to put her to sleep and deploy a dummy camera pill, and while she was asleep, start an IV. She never used to be afraid of the IV, but lately, it's so hard to find good veins and it hurts her so much for them to stick her and then dig around until they get something, just to have it clot, or blow soon after. Now she's very afraid, and I hate putting her through that. So, I asked for it to be started under anesthesia when they deployed the dummy cam.

Well, in this world famous Texas Medical Center, our hospital's dummy cams had expired in december, and they wouldn't let them be used. The real ones are up to date, but our doc won't do the real one until the dummy proves that it's not going to get stuck. None of our previous tests have every shown strictures, but there is one line in the surgeon's report from almost three years ago when her coloncopy resulted in a perforation and emergency surgery to repair it, where the surgeon wrote that he saw strictures. So, despite all of the negative tests since then, they have to go on the possibility that there are some present.

So.....until they find a dummy cam, no pill cam. And, that meant having to start the IV without sedation/anesthesia because they won't do that in this hospital. So, our doc and I agreed that a picc line would be placed because that would be done with anesthesia....except that it was Saturday now, and this hospital doesn't have anyone here on weekends who can place piccs. Amazing, right? This is a huge hospital system in Houston and we are in the one in the medical center, which is also huge. And, of course, it's open 24/7 for every type of need. So, why they don't have anyone here who can place piccs on the weekend is beyond me, and it also ticked off our doc. So he called the head of the hospital and asked him to call in the "on call" team to do it. They did, but they were groucing about it. Why in the world are we here when all she needs is a peripheral IV? I tried to explain to them that that was easier said than done, but I loved the way they tried to explain back to me all the ways to make an IV more comfortable to start...as if we hadn't already tried all of those BEFORE we'd try such an invasive procedure as a picc.

She was receiving her steroid foam enemas, her pain meds, her antibiotics, etc and was really doing better faster than I expected. What a huge relief to see her perk up and be her old self, and she actually spent most of Sunday with no pain at all.

Then, last night at 1am, the nurse told me her stool labs were back and she had C Diff. I don't know why, but I was stunned. I'd like to hear from all of you if and how often your kids have had it because Marni has never gotten it. So, at first I was freaked out, but then, I started thinking that it was probably just a matter of time anyway. Then, as a couple of you know already, I started wondering (and driving myself a little crazy) whether all the treatment that was given to her over the past month for a flare was for nothing because it was C diff the whole time. I mean, wouldn't it have been so much easier to have checked her stool at the beginning and avoid all these delightful enemas?

But, when her doc came by this morning, I talked to him about it, and he said he felt that it was probably the treatment that tipped the scales and allowed the c diff to flourish and he still believed that it was Crohn's inflammation that started all the problems.

So, for now, we've stopped the steroids both IV and Rectal and are on Vanco for the C diff. In a couple of days, if and when her stool tests are negative, we'll start the steroids back up again.

And, until then, we live in the time vacuum known as the hospital. I had a business meeting this morning with a colleague. I knew she was going to be in the hospital, but I scheduled it anyway thinking my husband could stay here with her while I went. Then, of course, I totally forgot all about it until I got a phone message from him wondering where I was. I felt SO bad and was very embarrassed that I had just plain not shown up. I'm going to see patients in my own practice tomorrow and Wednesday, and then I'll be free again til next week which is spring break, but I sure hope she gets to go home by the weekend.

Please write/post and let me know what you've dealt with concerning C Diff and figuring out which came first the chicken or the egg!

Thanks for all your support.
Stacey
 
Stacey,
YIKES! Glad she is getting some rest and "morfeen" is helping. Thankfully we have not dealt with c-diff. I know there is another new mom on here that has recently been posting about it and just started a support thread.
I think FW's Grace had C-diff as well.
Hope Marni feels better and gets to go home soon and Vanco works quickly. Poor girl has already been through enough.
Thanks for posting an update.
 

my little penguin

Moderator
Staff member
Hugs
I know queen gothel daughter tested positive for c diff but didn't really have it.
She can explain more.

Hope the meds take effect quickly.
DS was tested for c diff in jan but luckily it was negative
 
Just wanted to send hugs, no experience with C-diff here either. Hope she clears it quickly and I'm glad the "morfeen" is helping!
 
So sorry about all this. C Diff is a nasty and I'm quite certain evil bacteria. :voodoo:Queen Gothel has posted some research papers about that. She'll be along when she can.:kiss:
My Grace did have it. I believe it was her "trigger" to get Colitis. After C Diff her health took another weird twist and hear we are today!:(
Please PM me anytime.

HUGS:hug:
 
Stacey,

what a time you have both had.
I hope her C.diff responds well to the antibiotics.
If not, the fecal transplant has almost 100 percent effective rating (that I read) and it is a one time treatment.

hugs to you both.:hug::hug:
 
Julie, yes, I've read some on fecal transplants. I can totally understand why they're not popular here in the US because of the "ick factor", but they sure seem to do the job. I have a friend who has a son with Down's who has had C diff many times, and she tried to get a fecal transplant done, but her doc said there isn't anyone in Texas doing it yet. She will have to take him out of state if she wants to have it done. On the other hand, I saw on the internet somehwere, that there's a how-to manual you can get to do it yourself. We are SO not there yet. It's really for patients with recurrent infections.

My husband took over hospital "duty" tonight, and I came home to rest so I could go to work tomorrow. It should be a pretty easy day for Marni because all she's getting right now are oral meds including the vancomycin, but no steroid enemas, until her stool comes back negative for c diff.

See the next post for a little on our interesting day today.
 
Our doctor, who, by the way, we love, keeps prescribing rectally administered meds. As some of you may have read on my other post, the first one was a steroid foam enema that I was to give her twice a day. This was after the MRI a couple of weeks ago showed inflammation in her descending colon and rectum, but before the hospitalization this time. I mentioned that I was very anxious about having to give it because I knew she wasn't going to accept it without a fight.
I had told him during the appointment that I didn't see it going well, but he told me that I was the parent and I'd have to take charge and "exert my parental authority" and just make her take it. Easy, right? Ha! She totally fought me, but I told her if she didn't let me give it to her while my husband held her, we'd get a friend of ours who is a nurse to come over and help us, but that it was going to happen either way. So, she chose me and her dad and cooperated as best she could, but it was still quite a challenge for me to pry those little cheeks apart to get it in.


Well, Friday night at the hospital he added another enema that was a liquid to be given once a day, and it had to stay in for eight hours. I raised my eyebrowns at that one, but even the nurse told him how crazy that was given that she can't stay off the toilet for more than a few minutes right now.

I knew, based on how the foam enemas had gone at home, that she wasn't going to accept it without a fight. So, I suggested they give her the first dose on Saturday after her picc line was placed while she was coming out of anesthesia to make it easier on everyone. While she managed to fight, yell, scream while it was given, even totally groggy from the general anesthesia, she didn't remember it afterwards. It stayed in about 20 minutes before she had to go to the bathroom. So much for eight hours.

So, last night, when the nurse came to give her the second dose (Marni already had two foam enemas already that day), she clenched up, and refused to cooperate. There was crying, begging to go home, thrashing, etc, and two nurses never were able administer it. They asked me what I wanted them to do, and I said I thought she'd had enough and to just forget it. And I'd talk to the doc in the morning.

When he came in this morning, I reminded him of the conversation we'd had last week in his office about how I just didn't see rectal meds going very well with marni, he repeated that I was the parent and I just needed to assert my authority and make her take it. I then, jokingly commented to him that I found it pretty ironic that doctors prescribe meds that they themselves don't have to administer and then they can delegate the dirty work of administering it to nurses and parents. And then admonish us when we weren't able to give them because the child didn't cooperate. I told him I could assert my parental authority all I wanted, but nothing would make her allow me access when she was clenching that tightly.

Then he told me that in light of the turn of events with the C diff infection, he was going to halt the steroid enemas for now and start her on Vancomycin and an antiinflammatory suppository. I told him that I would love for him to be the one to administer it in light of what I'd just told him, so he could see how "easy" it was, and I laughed. I guess he took that as a challenge and said he'd come back later today and give it to her.

So, he shows up later with two female residents to give the suppository. As most of you are familiar with, the negotiations began....Marni refused, they explained what it was, Marni refused, they showed her how little it was, Marni claimed otherwise, and refused it. Then they began to just try to position her so he could give it. She refused. The entire time, I exerted my "parental authority", ordering her to comply. Guess what....yep, she refused. Oh, and told me how much she hated me.

After some time with this routine, I got up on the bed and put my arms around her and held her in a bear hug. I told her I love her and I kissed her cheek and gave the nod for him to go for it. Oh, but wait....she refused. She kicked, fought, screamed, scratched, punched, and clenched the whole time. I'm describing the scene lightheartedly, but it wasn't. It was traumatic and stressful and ugly. She was flushed, and sweaty, and her heart was pounding. He stopped trying and said, "Okay, Marni, I'm going to leave and let these other doctors and nurses do this now." With Marni facing away from me not being able to see me, I flapped my "wings" like a chicken and "bawked" at him with a smile on my face. He got the message. Everyone, including him, cracked up. I held her again, and told him to try again. He couldn't do it, nor could the residents. He finally gave up and gave Marni a genuine apology for upsetting her, and when he and I walked out of the room together to talk, he said, "You were right. I just didn't beleive you. I never imagined that kind of struggle. She's not going to allow this. Obviously, I'm going to have to find an alternative."

The child life specialist stuck around for a little while and talked with her and distracted her until she was back to her cute little self. I wonder how long it's going to take for her doctor to recover. LOL

Fun with Crohn's!
 
I am so sorry for what your little one is going through right now. My 17 year old just completed treatment for c-diff 3 weeks ago. This was our first experience with c-diff and Liv was so sick, I was sure she was starting a really bad flare. Vanco turned her around quickly (she does not tolerate Flagyl) and she was feeling pretty good. However, 7-10 days after completing vanco, symptoms returned...nausea, cramps and watery stools. We sent off another stool specimen which was negative?? I hear false negatives are possible and MD's should be ordering 3 specimens over a couple of weeks...all should be negative to be considered clear of the infection. My DD's MD gave me a script for Dificid, this is a relatively new drug for c-diff but I don't believe it is used in the pediatric population. My DD is closer to 18, so MD felt comfortable ordering it. I have the Dificid on standby, Liv had a decent weekend, but still not making a full week of school, the fatigue is overwhelming for her. Today she woke up complaining of cramps but managed to make it to school. I'm told recovery from c-diff infections (even without recurrence) can take awhile. I hope your sweet little one is doing better and I'm praying for a speedy recovery for her! Take Care. Kim
 
(((((hugs)))))) I hope she's feeling better soon! Glad the morfeen is helping ;) I have never had to deal with C-Diff personally, but a friend had it about a year or so ago. I can't remember if it was last summer, or the summer before but she was SO sick for a long time.
 
OMG, poor little Marni and poor mama.
If there was another alternative, that works just as well, would have been nice if he would have used that!!!!! I'll bet he'll never forget Marni, and start listening to moms a bit more :)

I like how you got your point across with humor, good for you!! I wanted to laugh and cry for all of you while reading your post.

the best to all of you.. and pray for a quick recovery for Marni
Julie
 
Thanks for the laugh. It is amazing how strong such small kids can be when they don't want to do something, did they just get super human powers :)
 
He stopped trying and said, "Okay, Marni, I'm going to leave and let these other doctors and nurses do this now." With Marni facing away from me not being able to see me, I flapped my "wings" like a chicken and "bawked" at him with a smile on my face. He got the message. Everyone, including him, cracked up. LOL
:rof:I don't know if you heard but....
EVERY SINGLE PARENT ON THIS FORUM WAS CHEERING YOU ON!:dance:


I hope she starts to feel better soon. HUGS:hug:


I love it when the nurses remarks that they never know a 4 yr old was that strong.:)
 
((((hugs))))) I just read the post about the doctor. Devynn has told me she hates me quite a few times during medical stuff.
 
:) Thanks for all the cheers and "high fives"! Just thought I'd add that this morning, while my husband was here with Marni, the her doc came by to see her and apologized to her AGAIN and promised he wouldn't do that to her again. SUCCESS!

I must say, I'm a bit surprised by how few of you have had to deal with C Diff. Truthfully, even though it is our first time around on that ride, I kind of assumed that I'd be barraged with stories about everyone at war against Clostridium Difficile. I'm glad to find out it's not as rampant as I expected.

I will NEVER EVER complain again when I have to get a stool sample from her, and I believe that she will NEVER complain again when I ask her to go in the "hat" so I can get it.

She hates going in it because she's absolutely sure that the stuff that goes into it will touch her bottom while she's sitting there. It's always a fight to get her to use it. But this time, she's been using it without being made to. PROGRESS!

In fact, I may even show up to her every-two-week appointments with a little gift-in-a-jar for our doc every time...with a smile on my face! You know...just in case.
 

CarolinAlaska

Holding It Together
LOL! Cheering out loud! Had to read part of the story to my dh. We can totally relate. Some things just ain't gonna happen. Jae was so feisty at age 4 she smacked the nurse while she was trying to give her a TB test (I was caught off guard). Thanks for sharing that with us. I love the chicken part too. Good for you! Great for Marni too. I'm glad he apologized to her as well. Did you get an apology too?
 
Oh yes, I got an "You were right. I'm sorry I didn't believe you."

But don't get me wrong, we love Marni's doctor. I think he was a really good sport when it was all said and done.
 

CarolinAlaska

Holding It Together
Oh yes, I got an "You were right. I'm sorry I didn't believe you."

But don't get me wrong, we love Marni's doctor. I think he was a really good sport when it was all said and done.
Yes, I think so too. I'm glad you all have such a good relationship.
 
Well that did make me laugh. I do often wonder how differently docs would treat our kids if they came in to the room while they were treated. It's the poor nurses that get the "good stuff". Sorry to hear she had to go through it though - definitely not funny at the time.
Hope the treatment for C.Diff works soon and they get her feeling better. That's great she is using the "hat". My daughter never complained about it, but it's almost like she automatically clenched her butt cheeks!
 
Marni has been home since Thursday night (today is Monday). Before we left the hospital, all inflammatory markers were on their way downward. While it appeared that she wasn't any better off after six days in the hospital, still in pain, it seems now that she's starting to feel a little bit better. The myriad of drugs in our kitchen is overwhelming. It has always looked like a pharmacy in there, but now it looks like the warehouse! Some of the meds are just for a while, til the flare is under control.
On the first few mornings home, I was afraid that she might be able to go back to school after spring break is over, but today, I'm feeling more hopeful. Fingers crossed!
She's missed a whole month, which is longer than any time before this. We have a meeting scheduled to get the 504 process started on the 28th of this month. Even if she's back in school by then, I'm going ahead and getting it going. That way it's done just in case this happens again, which sadly, as we all know, is likely. :-(

I asked our doc about pain and remission the other day, too. I reminded him that he told me full remission meant not only inflammation free according to the lab tests, but also pain free. He told me that now, the GIs aren't really talking about "remission" vs flare. They are using the term "active disease" when someone is "flaring".

I guess I'll have to get used to the "new" terminology.

In the meantime, I'm going to be guardedly optimistic about the improvement I'm finally starting to see.
 
so glad to hear she is doing better :)

Dont stress about school (I did ,but maybe you are not worrying)

She will get caught up, and you have the summer to help too.
You can get a lot done at home, if needed in one hour a day, to help her get back on track.

I still stress about it some days, because I want to do it all done in one day. It is better to focus on a few goals and you can reach them fairly quickly.

sending my best your way, and hope all the meetings go well.
 
Glad things are improving slightly. I know what you mean about having a virtual pharmacy at home - my husband always laughed at me (before my son's diagnosis) when he saw all my meds - just in case :lol:. Now I have even more stuff to try and find a place for! My medicine bag got alot bigger when we go on holiday now :).
Hope things continue to get better. Good luck getting things sorted at school
 
Well done Marni's mom!!!!!! I loved your story, and was cheering you on.:cheers:

Bless little Marni, poor peach. I don't blame her one bit for being upset.

Your Dr. sounds like a keeper too, not only for apologizing but for giving administering the meds a try. I hope the Cdiff clears up quickly!
 
Well, it's been four days since Marni came home from the hospital, and I'm afraid to say it, but I think she might finally be getting better. Shhh, don't tell anyone, but she didn't ask for pain meds once today. And, we actually went out to the Galleria and stayed for three hours without an urgent run for the bathroom. And....drum roll please.....she ate....FOOD! And without any pain afterwards. I'm almost afraid to acknowledge this day. I know that you all know that feeling.....so happy our kids feel better, but also wondering how long it will last and worrying about the next time.

We also bought a transport chair today to keep in the car so that when we go out for long days that include a lot of walking, joint pain won't cut our day out short. And we used it at the Galleria.

The only downside to all of this is that we have to catch up on a month of homework this week, spring break, because if things keep going like this, Marni will be going to school next Monday! Okay, okay....I know....I was kidding. I'm thrilled, really. And I'm taking all of your advice about not worrying about school....and not worrying about it.
 
Yeah!!! No stressing on the homework! She'll learn what she needs to and just a little extra a day until she is caught up, that is what we have always done. Do what is due the next day and spend a little extra time - no more than an hour (but he is in 8th grade, so grade appropriate 15-30 minutes) on make up stuff. It takes a while but it is less stressful.
 
Well heck! First day back to school after spring break and she's not going. While we had a few really good days, last night was a bad one. I didn't give her pain meds because I was worried that I wouldn't be able to wake her up this morning, but she didn't sleep well all night so I couldn't anyway. So I just gave her some with her morning meds which means she will sleep half the day now since she didn't most of the night. I just can't believe this. I was so hopeful. I was naive to think life would return to our normal today. Sigh.
 

CarolinAlaska

Holding It Together
I'm sorry. Is there a way to start weaning back the pain meds to see if you can find a happy medium that will cover her pain but not make her so sleepy?
 
Carol, I gave her two and a half pain pills today. One at 7:30am, another at 1pm and half at 3pm. None of it touched her pain OR made her sleepy this time. Scary. I kept her in bed all day relaxing as best she can. I don't really know what else to do. She has a dr appt on Wed morning, so we'll discuss it then, but there's little left. She's on Humira and methotrexate because Remicade didn't work, 6mp stopped working, sulfasalazine stopped working. She's also taking 30 mg of Prednisone since the hospital which is why I thought she was feeling a bit better right after she got out of there. But now, things are pretty much back to the way they were before the hospital without the diarrhea. I'm soooo tired of this. I know she sure is, too. Our poor babies.
 
AZMOM, thanks. I noticed that Claire is on Neurontin. Is that for her myelitis or her Crohn's? I've discussed the possibility of trying this for Marni's pain since the docs have explained that there is pain from inflammation and pain from the nerves that are irritated from the whole chronic process. I asked if the neurontin would help those irritated nerves. He said that was something to consider and I was going to bring it up again on Wednesday at her biweekly appointment. Does it help with her Crohn's pain?
 
Poor thing! Definitely worth trying to get something to ease the irritated nerves while they try find a med that works.
Has she tried LDN? I know alot of the GI's are still reluctant to try it, but she seems to have failed most other drugs, it may be worth a try.
Good luck at the appointment.
 

AZMOM

Moderator
AZMOM, thanks. I noticed that Claire is on Neurontin. Is that for her myelitis or her Crohn's? I've discussed the possibility of trying this for Marni's pain since the docs have explained that there is pain from inflammation and pain from the nerves that are irritated from the whole chronic process. I asked if the neurontin would help those irritated nerves. He said that was something to consider and I was going to bring it up again on Wednesday at her biweekly appointment. Does it help with her Crohn's pain?
Hey Marni's Mom - she's had residual foot pain and tingling on one side ever since the TM episode. Thus the Neurontin. All that said, Might help your sweet girl. Have you ever tried it?

J.
 
No, we haven't reied it yet, but when the doc mentioned nerve oain I started wondering if neurontin could work. My mother was on it once when she had shingles. I will desinitely ask about it.

We haven't tried LDN either, and I will discuss it as well.

Thanks
 
Well, darn it. She went to school today, but at 11am, I got a call from the nurse saying she was in her office. She was in and out of there until 1pm when she couldn't take it anymore and the nurse called me to come get her. Well, we tried. Doctor appt. tomorrow morning. We'll see what's next.
 
How did the doctor appt go?

And I'm curious if your doc has come up with an alternative to enemas. I was telling my son about Marni and he's very interested in learning how he can avoid them in the future. The one he had in the hospital left him pretty traumatized (and me with bruises!).

I hope Marni is feeling better today...
 
Praying for strength for you, wisdom from Marni's Dr., and a solid treatment plan.

Hope your little peach is feeling better soon. (((((Hugs))))) and hang in there mom.
 
((HUGS)) Sorry to hear she is back in the hospital. Hope it all gets sorted out soon. Thinking of and praying for you guys.
 
When you are able, let us know how your sweet little girl is doing.
I am so sorry this is happening. I hope they can figure out quickly what is going on!!!
thinking of you at this hard time.
julie
 

DustyKat

Super Moderator
Sending loads of love, luck and healing thoughts your way Marni's mom...:ghug:

In my thoughts, :heart:

Dusty. xxx
 
Hi Everyone. I'm sorry I've been away for so long, but as you all can understand, I've been exhausted. Too tired, even to log on and check in. I'm working today (Saturday) for about six hours, and then I'm going to head back to the hospital. I haven't seen Marni since Thursday night when my husband got back to Houston and took over "Marni Duty" at the hospital so I could work Friday and today. Here's the latest:

On Wednesday, I took her to the GI for her now-weekly follow-up visit and reported to him that althought we'd seen a few good days over Spring Break, it appeared that she was backsliding again. She didn't go to school on Monday, the first day back, and on Tuesday, she only made it for three hours before the nurse called to have her picked up.

Tuesday night she didn't get to sleep until 3am, and that was after two and a half hydrocodone tablets! It didn't touch her pain. She just fell asleep from pure exhaustion. Then, we were up at 7am. Needless to say by the time we made it to the appt, which was at 9, we were both frazzled. I burst into tears when the doctor came in to talk to us from raw emotion and fatigue. I think he was a little scared. LOL.

After he heard what was going on, he said we were going to have to put her back in the hospital and go ahead with the pill cam, dummy cam first, that day. So, I ran to the office to see the one patient we couldn't reschedule and then came home to pack and take her in. She was not happy about it.

For those of you who have been keeping up with this thread, you'll have heard about the supository/enema debacle. There was a huge battle, and Marni won.....

Well, magnify that little incident by ten times, and you'll get a mental picture of what trying to get her into the car to take her to the hospital was like. Poor little thing. She has NEVER behaved that way before, but she was at her limit on hospital stuff. She locked herself in the bathroom and wouldn't come out. I unlocked it, to her suprise (she still doesn't know about the little hole on the knob thank goodness) and once inside, she kicked, bit, scratched, punched all she could to keep from being taken to the car and then to the hospital. It took about an hour and half, but she finally relented, from exhaustion, and got in the car.

I only tell you this part of the story so you won't feel so alone if your child behaves this way. I mean, c'mon, they deal with chronic pain and symptoms and have no control over what happens to them, so it's perfectly normal for them to try to control the situation in any way the can find.

Once on our way, she settled down and her mood improved. Now, for the plan:

If you have read up to now, you'll see that we weren't able to do the pill cam two weeks ago and were going to have to return to do that if she didn't get better. So, Thursday, they took her down to the GI lab, put her to sleep (also another fight) and deployed the dummy cam and did a colonscopy.

The colonoscopy showed there was disease and scar tissue in her rectum and sigmoid colon. In a way, it was good to hear, and for the Dr. good to see, because it allowed us to point to SOMETHING that could be the cause of all her pain. However, her pain is higher up in her abdomen and not in her bottom, nor does she complain when she goes to the bathroom about pain. We consulted with the pedi surgeon on this matter. He was called in to see the scope and to give his opinion which was to NOT do surgery if it can be avoided at any cost until all other possibilities have been exhausted. This surgery would have required her to have an ostomy while it healed....which means a huge hole in her abodomen and, as we call it, Poop-in-a-bag.

After the dummy cam was deployed, of course, we had to wait for it to pass, which the dr said would be the next day in the morning at the latest. Well, Friday morning, nothing. Friday afternoon, nothing. Friday night, nothing. X-rays during the day showed no movement of the pill all the way up to now, which is noon on Saturday. So, now she's in radiology again, this time using contrast, so they can see in better detail what it looks like around where it's stuck. Then, the surgeons will consult again and she may end up in surgery on Monday to have the obstruction/stricture resected. We won't know until later today. By then, technically, the dummy pill cam should have disolved, but they said that takes 30-something hours to happen.

In the meantime, Marni went between being in a pretty good mood to being in quite a nasty mood mainly because she was either NPO or clear liquids only. She said she was starving and claimed that she didn't need surgery or x-rays because she wasn't going to be waking up in the morning anyway....because she was going to starve to death. Drama much? LOL.

I reminded her that when she does eat, she only takes two or three bites before she's done, and that I felt it was totally possible for her to not have those three bites for a day or two. But of course, she's smarter than I am, and reminded me that she usually has her feeding pump going, which now, she does not. Take THAT, Mommy!

I am trying to stay positive and upbeat, and look at this possible surgery as a means to find what's been causing her pain and getting rid of it instead of the graphic mental images that slip into my mind of her on a table, opened up, etc. Ick...stop me now, please.

It's now 1pm. I have three more hours in this office and then I will head over to the hospital. I will do my best to post again tonight if we find anything out.

In the meantime, again, from the bottom of my heart, thank you for your kind words and well wishes. When I read them, it brings tears to my eyes that people who don't know me could be so comforting and thoughtful and that we are all in this together.

xoxxoxoxoxoxoo
 
I'm so sorry to hear of all you all are going through! I hope they are able to find a resolution to her problems and all goes well with quick healing times!! I'm sending prayers and hugs your way.

By the way, not much easier at 16 with the resistance to do something...the physical fits turn into long, drawn out, draining, philosophical(in the loosest of terms) discussions that are full of teenage rationalized theories of why the hospital, tests, etc are unneeded and maybe even harmful! HA
 
I love her spirit, she is one tough cookie!

I can imagine you are just plain worn out mom. But you are doing a fabulous job. It's hard to make your little one be subjected to so much, even when you know it's necessary. The last week you all had is no way to live.

This too shall pass....

(((((Hugs))))) mom, praying and thinking about you and Marni.
 
((((((((((hugs)))))))))) I'm so sorry you are all going through this. I hope you get some answers today.
It is good to read about how hard our kids can fight. I'll never forget taking Devynn to the hosp and them trying to get blood work just before her diagnosis. She was 8 years old (a tiny 8 year old) and OMG.. the strength this child had.. It took about 6 nurses to hold her down, with her fighting every step of the way. The very big male nurse holding her feet was trying to calm her down, I told him to be careful and he just smiled. She ended up kicking him right in the face. I was near her head trying to calm her (they had her lying on a bed) and she was biting, spitting, screaming, swearing.. she got her arms loose at one point and literally ripped my ear ring out and my shirt off. We had taken the subway, and I had to go back home on the subway with the front of my shirt ripped wide open, scratches on my face, neck... and my eyes were so red and swoolen from crying. At the time, I was so upset, exhausted and fed up with what I thought were tantrums that I wondered what was wrong with her. I thought she MUST be bi-polar or something. Just mentioning the doctor would have her turn into the tasmanian devil. Then she went for her first scope... I got her to drink some of the drink at home, and then she had to drink more at the hosp. She was screaming at me, the nurses, she threw a cup of ice cubes at me. Finally I left the room (my older daughter was with her) and cried my eyes out. A nurse went in and told her it was time to drink her drink or they would have to put a tube in her tummy to get the drink into her. She drank it! But in the hours leading up to that moment.. I was a basket case. She had the strength of 10 men.
((((((hugs)))))) I hope Marni is feeling better real soon, and you get some good solid answers and a treatment plan.
 
Oh my goodness!!! Poor Marni and poor you!! I really hope that they find out what is causing all her pain and distress.

It is so mentally exhausting and draining :frown:

Thinking of you all and sending massive (((HUGS)))

xx

:ghug:
 
Okay, I'm sorry, but that brought a smile to my face. Why is it funny when you hear about other kids doing all of that, but no so much when it's our own? LOL. Don't they remind you of the movie, The Exorcist? Or, better, The Incredible Hulk! The sounds that come out of their mouths when they are in survival mode like that are spooky. At one point, while Marni had fled to the hall bathroom and had barricaded herself in, I was in my bedroom next door and heard my olderdaughter say, "Marni, who are you right now? Your face doesn't even look like you right now!" It scared her enough to make her cry. Well, that, and the scratches Marni inflicted on her arms while she was trying to get her out of that bathroom.
 
I'm glad it brought a smile to your face :) Its so hard when its your own child, but to see or hear that you are not alone, gives you a bit of a *phew* feeling. Yes, the exorcist.. my older kids used to ask if she could possibly be possessed. Not in front of her, but it was so unreal to them. I can only imagine, because I know how hard as an adult it was to watch. My kids have also gotten scared watching Devynn at times.
(((((((hugs))))))
 
Wow! You have been through the ringer and back! Rowan had her fits as well. Once when the doctor was trying to cath her stoma and flush it she decided to get free and needless to say he sprayed bile and poop all over everyone whom was trying to hold her down for the procedure. It was the one moment I was ducking reaching for more absorbent pads and it missed me. I had been so wound up and freaked out that I lost my mind and just laughed at everyone covered in poo. I probably sounded like a crazy person laughing, but I couldn't help it, it was like I had Tourettes. That doctor still looks at me as if I am off!

Sorry back on subject, I really hope they find the obstruction and it all happens with ease for her. She is such a fighter and ever since I watched all of those videos I can't seem to get her out of my head. Prayers sent you way!
 

DustyKat

Super Moderator
Whoa, what a ride you are both having! :ghug: I hope you can get off and soon!

:hang: Mum, you are doing great. :) For my daughter surgery was indeed the answer to everything and it gave her her life back. I can only hope and pray with all my might that it is also the answer for Marni, bless her. :heart:

Good luck!

Dusty. xxx
 
Location
Canada
Sending you all lots of strength and courage. All the chronic pain really takes it's toll on them, and us, emotionally. We saw a psychologist, who specialized in kids with chronic illnesses, for a while. While it didn't really solve anything it did help give my son some coping mechanisms that were useful at times and I also think that it helped to have him talk to someone about everything that was going on.

:hang:
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Wow, she really can be quite a fighter, can't she!

Have they discovered where/why the pill-cam is stuck? I hope you all can get some rest and she is on the mend soon!
 

CarolinAlaska

Holding It Together
I'm so sorry you and Marni have had such a rough week. We've had bad days with Jae, but thankfully I don't have any lasting scars some of you still carry. Let us know how today went.
 
Sorry you guys are having such a rough time. My daughter is supposed to do the dummy cam and pill cam in the next two weeks. Her doctor originally was just going to do the real one and I told her no way without doing the dummy first. ( I have taken lessons from you all on here, lol). Anyway it really is rough when they give you a hard time. We had many times with caitlyn refusing to come,it of the bathroom to go to the hospital. Thank goodness like you said for that little hole to pop the lock. These poor kids they go through so much and are so strong! You really have to admire their spirit and know that will certainly get them far in life!
 
I'm so glad you're getting some answers. I hope Marni will use that spunk and determination to kick some Crohns butt!
 
1:30am Monday morning (Sunday night). Marni's sound asleep.....obviously, I'm not. Turned out that the pill cam got stuck because, as the doctor in service told me this afternoon, "sometimes they just get stuck". It wasn't due to a stricture or strictures as we thought. Marni had another upper GI with small bowel follow through with the contrast medium on Friday after it was clear the dummy cam wasn't going to move. They felt it would give a more detailed image than an x-ray. It, as it always has, showed no strictures. So, now, they are going to do an endoscopy that uses the long skinny camera with a balloon so they can expand the small intestine as they move along and try to get as far down as they can. Obviously, this isn't as good as a pill camera that can take pictures all the way through, but that's no longer a choice since the dummy got stuck.

She's been eating like a small horse which I suppose the two weeks of steroids she's been on have kicked in to high gear. She says she's feeling constantly hungry. I'm so used to her eating two bites of food and being done, that this is a treat for me! The ladies in the hospital gift shop have come to know us well because that's where the good snacks are. LOL.

The balloon endoscopy will be done on Tuesday. Marni hit her hospital limit tonight. She was very quiet and sad, and when i asked her what was up, she started crying and said she just wanted to go home. It wasn't the mean, nasty survival attitude she had the other day, it was just a broken down, sad little girl who was tired of living in the hospital and being poked, proded, woken up for meds all night and not seeing any progress from any of it.

Surgery is off the table for now since the upper GI didn't show any strictures. I am not expecting the endoscopy on Tuesday to give us much information which will be very frustrating because we will be no better off than we were six weeks ago on what's causing her pain. The colonoscopy from Thursday morning confirmed what was seen in the MRI Feb 16th....that there is severe inflammation in her sigmoid colon and rectum. However, when she shows us where the pain is, it's in the upper part of her abdomen, not in her bottom.

She had a consult with a psychiatrist, and I talked to her about the long painful nights without sleep, so she Rxed something to help with sleeping, which has helped immensely. We'll also be taking her to a psychologist who counsels kids with chronic illnesses and pain on how to deal with that when we get out of here.

I really will hate to leave here after all of this hospitalization and testing without any real, concrete answers, but I fear that's what's going to happen.

I'll keep you all posted. Thanks again for checking up on us.
 
Bless her.. It is just so frustrating when nothing shows but you know there's something going on :(

It's good she's eating. Hope the tests show something on Tuesday.

Sending youboth hugs xxx

:ghug:
 
I really will hate to leave here after all of this hospitalization and testing without any real, concrete answers, but I fear that's what's going to happen.

HUGS

Don't think of it like that.:eek:
Think of her stay in the hospital as.........
ruling OUT possible causes.
You know the possibilities (blockage/rupture/ abscess) you would obsess on IF you weren't in the hospital.:yfaint:

Have the pain meds helped?
 
Sorry I seem to have missed a whole bunch of stuff! Your poor girl - don't blame her for having had enough and it's horrible for you to watch as well. I really hope they find something in the endoscopy - I know what it's like to come out of another hospital stay without any particular answers. I hope they manage to come up with a plan that helps her soon!!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Stacey, what meds is she currently on or has been on? There's so many on here it's hard for me to remember if you've mentioned them.

If there's nothing obvious from the tests that can answer for her pain, maybe your GI should try adjusting meds to see if it helps.
 
The adult GI doc came in this afternoon to talk to us about the balloon endoscopy tomorrow. Contrary to what I thought, he says they CAN see the entire length of her intestinal tract with this method. I was surprised. It might take two sessions, though, because it will take a couple of hours and they don't want to keep her asleep for longer than that. They will go as far as they can via esophagus, make a mark in the intestine and then go back via rectum the next day to the mark.

I guess making a mark is better than dropping bread crumbs along the way. :)

If they find any strictures, they will use a balloon to kind of stretch it open. Kind of cool and waaaaay better than surgery. But if you ask me, I'd say there won't be any strictures. Just a "gut" feeling.
 
Location
Canada
So sorry to hear that things are still rough for Marni. It is so hard when a cause for the pain can't be found. Your post in another thread about trigger smells made me think about abdominal migraines, as I had a friend who had migraine headaches that were triggered by certain smells. Abdominal migraines were one of the theories that the docs had for my son's unexplained (other than having Crohn's!!!) abdominal pain. I'm not sure I buy the theory, but one of the treatments recommended to us was high doses of vitamin B2 (riboflavin) as it has been shown to act as a propholactic for migraine headaches. My son takes 200 mg in the am and 200 mg in the pm and it has had a dramatic effect on his pain. From what I understand taking large doses of vitamin B2 is quite benign so it might be something worth looking into.

Hope you guys get out of the hospital soon.
 
I'm going to see if I can answer questions and make comments based on all of your responses without going back and re-reading who wrote what because I'm so tired I'm seeing double.

I think it's Devyn with pill cam coming up...is this her first time? If so, has she started practicing swallowing things that are gradually bigger in size? I wish I had done that because Marni tried to swallow it her first time and kept gagging on it. They ended up having to take her down to anesthesia just to deploy it, and did again this time. It really makes the process so much more complicated when all that has to happen...not to mention more expensive for you or your insurance company.

As far as who asked me about increasing her med dosages....yes, we've done all of that. When she changed to Humira, it wasn't long before he increased her dose and she's now on just above the maximum dose of 40mg. He increased her Methotrexate from 100 to 125 mg. For pain, she's taking hydrocodone every four hours, which has been working and keeping her comfortable here in the hospital, but I've told the docs I'm not comfortable with those doses at home because I don't want to end up with a ten year old junkie on my hands! He said she'd have to be on it like that for four months or so to be at risk for dependency, but still..... So, we're tapering her down starting with every six hours instead of every four and we're starting neurontin at my request to see if that might help. They keep talking about how if there isn't any inflammation in her intestines, the pain could be peripheral nerve pain that resulted from chronic inflammation. Well, I was thinking that neurontin might be a good thing to try if that's the case, and he looked into it, talked to some other docs and then agreed it was worth a try. It can't hurt, but it can help if it works.

The thing that perplexes the doctors, he told me today, is that even though all her blood tests can come back normal and her "scopies" are all visibly normal, the biopsies always come back positive for inflammation. So, it's on a histological level, essentially.

Finally, about trigger smells.....I've never heard of abdominal migraines, but I sure am going to read up on that. Interesting. When I was a kid, I suffered from abdominal pain, usually in the morning, which required a run to the bathroom. My parents took me for tests and for whatever weird reason they did brain wave tests. It was in 1970. They never found anything....although looking back, what in the world would they have found in my brain waves? LOL Now, with hindsight, it's obvious to me that I had IBS, but I guess that just wasn't a diagnosis back then. And as an adult, I go into stores...Michael's, Hobby Lobby, and JoAnn's are three, but there are others....sometimes Walgreens....and whatever is in the air, the smell or whatever, makes my stomach hurt. I thought I was the only one in the world who had that happen, but my girls both get that too. We call them "trigger stores" and while I and my older daughter get over it after a trip to the bathroom....it's really the last thing Marni needs on top of her Crohn's. I've always hesitated to ask anyone about it because it sounds so crazy, but I figured since this forum is all about abdominal issues, I thought I'd ask....and good thing, too, because I now have something to search for....abdominal migraines.

I'll post on what is found out after the ballon endoscope tomorrow night.

You guys rock! Thank you.
 
Just popping on about abdominal migraines. My son was "diagnosed" with abdominal migraines for about a year before we found out it was Crohn's. The medicine they gave us was called Pizotofen and is supposed to prevent it from happening. It's a really tiny pill so easily swallowed. Maybe something to ask the docs to try if the neurotin doesn't work.
The other thing to google :smile: is Mesenteric Adenitis (another one of our incorrect diagnoses for my daughter). Not quite sure if that's the same thing as abdo migraines, but it is inflammation in the lymph nodes in the stomach and can cause bad pain and in bad cases a fever.
 
No, Devynn is not having the pill cam. She had to learn to swallow pills a year ago when her dr started her on Mezevant. It was the first time she had ever taken pills and they are HUGE! From what I've heard, they are close to the size of the pill cam.
About the abd migraines, I did a bit of reading on them and think I may have had them when I was a kid. I had stomach pains for years and the dr told my mom I just didn't want to go to school! He told her to ignore me! She didn't, but she also didn't push for answers. I too will get a stomach ache, or sick to my stomach from certain smells.
(((((hugs))) and good luck today!!
 
Sascot, Devynn was incorrectly diagnosed with Mesenteric Adenitis as well. It was actually that diagnosis, that sent her to a GI who ended up running all the tests, scopes etc that eventually helped with her diagnosis.
 
Oops, sorry. It wasn't Devyn, it was Caitlyn who is getting the pill cam.

They're here to pick Marni up to take her down to endoscopy. Jose is here to drive her bed down.

See you soon
 
Hope everything goes well, sounds like a really thorough procedure!

Fingers crossed they can see what is causing her all this pain :confused2:

(((HUGS))) xx
 
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