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coolbeans

coolbeans

Joined
Jan 13, 2017
Messages
115
I am at my wits end. We are supposed to be prepping for scopes tomorrow & my child refuses to finish the second bottle of med. no amount of reasoning, cajoling or anything else is doing any good. I feel like a failure. Why can't she get that if she doesn't complete it tonight, we have to start all over and do it again at a later date? We did fairly well with the first bottle--it only took 45 mins but we have been on this one for almost two hours. Why does she have to be like this or is it me? Times like this I just want to disappear. Sorry for the rant. :sign0085:
 
Oh man, I can so empathize--from things you've said in the past, I think our girls are similar in many ways, although my daughter is a little older.

First of all, remind yourself that it will be a big pain, but not the end of the world, if she doesn't finish the drink. If you have to reschedule, then you reschedule.

I just asked my daughter for advice, and she says that you should leave your daughter alone for a bit. She says that sometimes when she's told she *has* to do something, it makes her really mad, and she can't stand the idea of doing anything we say. At those times, if she has time to calm down, she often can make good decisions after. (I know that it's really late in your time zone, though, so I don't know how much time you have before your daughter is going to just fall asleep.)

If she won't drink the rest tonight, would it be possible for you to get hold of her doctor, or maybe a nurse in their office, early tomorrow morning? Maybe they can convince her to drink it. I know that sometimes my daughter is more easily convinced of things by her doctors and teachers than by us.

Finally, there's also a chance that she'll be cleaned out enough with what she's already taken.

Hang in there. I know what you're going through.
 
I can relate! It’s so hard when they don’t understand, and honestly, it’s hard on us not knowing what they’re going through emotionally. My kids both get so worked up sometimes they make themselves sick and end up throwing up, so I have learned that I have to take it at their pace or it could all come back up. Good luck with everything. Just know that you’re not alone and there are more of us out there who can empathize. [emoji171]
 
I hope all turns out for you no matter what! Even though I'm almost 40, there was once when I was cleaned out enough with only one bottle of the prep. I'd check with the doctor's office too. Depending on her weight and her bowl movements at the time, it might be ok.

Please keep us updated. Sending you two lots of hugs and support! :hug:
 
Thanks for all your kind words. The procedure is in progress now. Thankfully we had eaten light the few days before so hopefully that was helpful. I am praying for good news-- we have been on Stelara six months and the last few labs have been normal. PTL!!!
 
So glad things look good visually. That is a major coupe!

Just wanted to add here in case anyone reads this. If prep doesn't go so well they will also sometimes do an enema at the hospital the day of the procedure or vacuum the stool out before they start the scope...YES! Vacuum! I know, not a pleasant thought but one of my daughters had to have that done. And her prep went beautifully. Was pooping clear. Went to sleep and woke up with brown again. Thanks to some inflammation their guess is she was really backed up and transit time was long. Anyway, she was asleep and had no idea so it was all good.
 
My kiddo has also had the same happen - we did the prep perfectly and she even had extra Miralax, but her GI said her prep was "poor" two years ago and "fair" this year. She has really poor motility though, so that's likely what causes the problem. Her GI said we would change the prep for next time but didn't say what we'd do.

I am curious though - you said she didn't finish the second bottle. Were you doing the Miralax + Gatorade prep or something else? Because kids usually find the Miralax + Gatorade prep easiest - much easier than something like Mag Citrate.

The only time my daughter had a hard time with the prep was her first prep. I called the on-call GI who said they could do an enema when she came in the morning, before the scope. Once I told my daughter that, she immediately started drinking ;).

I am THRILLED to hear Stelara seems to be working for your daughter - that's so exciting!!!! Fingers crossed biopsies look good too.

Also wanted to ask - how is her weight doing? Is the G tube on hold? Because that's another perk of the G tube - no need to drink anything you don't like :lol:.
 
We were supposed to do two bottles of mag citrate & two dulcolax suppositories. We only managed to do the one bottle that afternoon then three hours later when she balked, it was too late to do anything else. She wouldn't let me near her bottom for the suppositories. One of my coworkers father did the miralax clean out last week & had to go to the ER the day after b/c he almost passed out so I am kinda leery of that--she doesn't like Gatorade anyway. Never an easy moment here!! This was only our second outpatient scope--all the others have been inpatient so idk if that was a factor or not. Idk if an enema would've scared her or not. She just got it in her head that one bottle would do it & nothing was changing her mind.

She is still gaining but not a huge amount--we have hovered around 80 pounds for a while but she has grown several inches in height. We have put the tube on hold although it would've certainly come in handy last night. She has a friend w/CD who recently had scopes & sent her pics where she put the NG tube in for the prep only--such a smart girl but mine wouldn't even consider it. That one bad experience in the hospital has scarred her for life.
 
Hmmmm...all the big children's hospitals use Miralax and Gatorade (or Pedialyte). I haven't really heard of Mag Citrate being used recently. Though I suppose every hospital has a different practice.

We do Dulcolax pills and then Gatorade + Miralax. Never tried another prep.

If she has grown but not gained weight, that is a bit worrisome. What's her BMI? Is she underweight?

My daughter hated the NG tube the first it was put in. The second night, she placed it herself and said that was MUCH better. Within a week, she was putting it in every night within 10 seconds. We used an infant tube (though she was 17) and it was tiny and thin like spaghetti.

Most kids really prefer G tubes over NG tubes - my daughter certainly did!
 
Yeah that ^^^
8 years of scopes (7 scopes )
ducolax plus miralax /Gatorade
Never an issue always a pristine clean out

I used the same for my scope
Mag citrate is awful
Ds used it once for severe constipation
Our GI stated it’s very hard on the system

Some kids use sprite /Sierra mist
Pedialtye
Clear kool aid
Organic Gatorade for my kiddo won’t touch the other stuff
It’s clear and tastes different per Ds

Glad it’s done
Definitely try to find a good medical coping psychologist
especially if she is only 80 lbs
 
Hmmm...growth is usually harder to achieve than weight gain when there is inflammation present so it is a good sign that the inflammation has been dealt with. But with that much growth and still the same weight she is probably really falling on the BMI scale and definitely doesn't have a very large cushion. After biopsy results come in and GI is able to share their thoughts on weight, I hope you guys can come up with a good plan. :ghug:
 
How old is your daughter coolbeans? As tough as it is for you parents, I'm thankful that you all can get this taken care of for your children. I wish in some ways that my parents could have known about my IBD before I found out at 18. Sending you all my hugs and support!!! :ghug:
 
We have had the endocrinologist & GI tell us that she probably will be petite & not very much over 5' tall. Of course that is not a set in stone prediction but her father & I aren't very big people. I am short & he is what I think is normal height. She weighed 82 yesterday so we are inching up slowly. I don't know if her small frame could take a massive weight increase all at once. We are definitely keeping a close eye on it.

We have finally found a psychologist that she is comfortable with--she is about 1 1/2 to 2 hours from home but has been worth the drive. I am also hoping that Camp Oasis will be a help to her too. Just meeting other kids & seeing what they may have to go thru might change her tune a little.

cross stitch gal--she is 14 & knows it all--typical teenager. she thinks I am so dumb it is a wonder I can put clothes on & drive to work--haha!! but didn't we all at that age?

oh and I have a cute story from the other night when we were prepping--my husband went & got some food for us--we ate in the truck in the driveway so she wouldn't have to see. How romantic!! it was really comical & I figure the neighbors wonder about us. :)
 
coolbeans, we have done the same. We don't eat in front of my daughter when she is prepping. We grab a quick bite while she is in the bathroom but don't put food on the dinner table.

I'm concerned about your GI saying she's just small. I would definitely ask for a referral to endocrinology. Crohn's kids do NOT have to be small. With formula supplementation and the right medication, many kids can get back on their normal growth curve.

If her scope does not show inflammation, then it's likely she just needs formula to help her gain weight and grow.

Has she seen pictures of a G tube? They're teeny tiny and don't show through clothes (unless she wears something REALLY tight). A tube was MUCH easier than drinking formula for my daughter and my "very small" daughter became a normal weight.

She is only 5'2 but I'm only 5'3 and her sister (who does not have IBD) is also 5'3.

But she was able to go from a very unhealthy 82 lbs (which was her lowest weight and she had a BMI of 15) to a healthy weight. It would NEVER have been possible without formula supplementation.

And she did not gain it all at once, she gained steadily over months and then settled at her "normal" weight. At that point, we stopped using the formula for weight gain and started using it for maintenance (you give fewer calories for maintenance). So for maintenance, she would get maybe 30-40% of her calories from formula and the rest she'd eat.

There is also evidence that shows that supplemental EN may help her stay in remission.

Your daughter still has time to grow but it's a small window.

What does your second opinion doctor at Cincinnati Children's say about her growth/weight gain?
 
Tagging crohnsinct since one of her kids or both were told they were done growing or would be small

Second the formula
Ds used it to steadily gain weight to grow similar to his peers
Other Crohns kiddo we know was told the same “small kid “ line
He looks about age 8 when he was 15
He refused formula no one pushed it

Ds has been drinking formula since dx - so 8 years
He looks like any other kiddo in his grade. Height /weight wise
 
I'm not sure if it helps you at all.

But, I turn 40 next month. I'm about 5ft tall and hover just below 90 lbs even now. Neither of my folks are terribly big either, so I may not have gotten too much bigger. But, I believe it might be possible that I could have gained a little more before now if I hadn't have been so sick for so many years. :ybatty:

I'm so small that sometimes teenagers think that I'm their age instead of old enough to be their moms. I kind of wonder if that's what helps my being able to help some of these younger ones...
 
Ha! Yeah both girls. I am 5'6" and and my husband is 6 foot. When o was dx'd at 12 she was 5'2". She was told maybe she would squeak out 5'5". She is almost 5'8".

T had precoscious puberty and was freakishly tall in 4 and 5th grade. Got her period at 9. Was dx'd at 11 and told since she had Already gone through puberty maybe she would squeak out another inch or two and make it to 5 foot. She is 5'5".

Both girls were underweight for years and told they were just going to be skinny girls and being skinny isn't a disease. They are both solidly normal BMI now.

Now all of this did not happen overnight. It happened over years. It actually took O over a year to gain 4 pounds when first diagnosed and she did 8 weeks of EEN with a very slow food reintro. Same with T but she did EEN twice.

Did she get an MRE also? A good scope is great but there is a lot of small bowel that isn't visualized with scopes and since nutrients are absorbed in small bowel, I would want to be assured that was clean also.
 
Just jumping in re supplementing with EN. I believe it made a huge difference for my son as well. Prior to dx, my son lost 20-25 lbs, 145 down to 120ish lbs. (he was 5'10" at the time). Through the 6 weeks of EEN, he gained 10 lbs. His dose was 3000 cal/night (he used NG tube). After the six weeks, he was allowed to add back a regular diet but his ongoing treatment was EN at approx. half dose (1500 cal/night, 5 nights/week). His GI/nutritionist did not specify a food/EN percentage, just maintain the 1500 cal from formula and he could eat as much as he wanted during the day. I found he still ended up with three full meals - would skip breakfast as he was 'full' when waking, had lunch and dinner but then added a meal sized 'snack' later at night (ie pizza, chicken/rice, he even cooked steaks a couple of times!).

Over the next three months, he gained another 20-30 lbs. And this was healthy, muscular, developmental weight. By the time he left for university, so just over two years after dx, he was at 180 lbs! As he was already 5'10" at dx, he only gained approx. 1.5 inches in height.

I'm sorry that the NG tube will be a tough sell for you. :( I think using the tube was definitely what allowed his continuation of the formula. He absolutely would not have taken in 1500 cal each day, for such a long time, if he'd had to drink the formula. As well, by having it overnight, it didn't interfere with meals (ie his lunch/dinner wasn't 'smaller' because he wasn't hungry after drinking formula). As well, having those two nights 'off' each week allowed him to sleep at friends' places or go away on weekends without the burden of drinking/ingesting the formula.

Once he left for university, he did not want to use the NG tube, etc plus his GI had added remicade so it was a tough sell for me. I'd wanted him to continue as much as possible for a couple of reasons - one was that he was a picky eater so, without me around, I had strong doubts he'd eat very nutritiously and, second, was that I'd read a study that showed partial EN in combination with remicade had shown significantly improved success/endurance rates with remicade.

Our compromise was that he would drink two Boost shakes each day (not as much formula as in the study but I knew I wouldn't 'win' at trying to get him to drink more). He continued that throughout university. The shakes actually became a convenience for him rather than a medical issue. Instead of making or buying breakfast, he'd have a shake, when running late to a class or hockey game, he'd grab a shake... His roommates actually started drinking shakes because of the convenience! :lol: (I'm not sure how much that cost me! :ywow:)

Ironically, since he's been back home and I can now manage things again, he drinks fewer shakes. He still uses them for the 'convenience' at times but it's not as consistent as when he used to just come home for weekends or the summer. I guess we've both become a bit complacent (never a good thing! :eek:)

But, I guess the point of this whole story is that I strongly believe the nutrition he gained from the formula and then shakes helped rebuild his health and then helped maintain it. I know you don't need convincing but if there's any way you can convince your daughter to use the NG or G tube, she would only benefit from it. If she happens to be a picky eater or isn't a big eater at meal times, then a 'bonus' for her (and you) is that there will be less pressure for her to eat 'healthy' (I know this was a relief for my son and me as what he ate and the amounts had been a battle his whole life!).

And, our experience was the same as Maya's - it didn't take long for him to learn to insert/remove tube... and we used infant sized tube (I think his was 6Fr).

:ghug:
 
I really appreciate the comments & I agree wholeheartedly with all you have said. The problem is that this child has a memory like an elephant & she will never get over the nurses trying to shove the tube unsuccessfully up her nose in the hospital. Also she listens when she wants to & she can manipulate any conversation she has heard to get only what she wants out of it--does that even make sense? And dear hubby is the same way & believes the doctors word is the gospel. So I not only battle her but him too. I wish to goodness that we had went ahead with the G tube procedure when we had the chance but that was the only time our 2nd opinion could see us so it had to be cancelled. Then they pushed the bag option & freaked her out totally--said it was the only way she would get better. Oh well hindsight is 20/20 & I cant change it now. She is never going to go for the tube but maybe after Camp Oasis & seeing other kids with G tubes we might be able to explore that again. I will try the Boost option but the nutritionist told her she wouldn't have to drink that anymore so she will argue to the death about it. I try to give her most of the power in the doctors visits b/c eventually I wont be there but it turns around & bites me in the a$% about every time. I realize she is still a minor but she is very strong willed. Lucky me!
 
Hugs
I have a boy so wanting to be “big and strong”
Really helps us push the formula
Girls unfortunately are given a different messsge by friends etc.,,

As far as your Dh can you pull papers on growth and Crohns to helphim understand vs you saying it
 
It's very difficult, if not impossible to try to convince a teen of something! :ymad: And, with my two, a boy and girl, the girl has always been the tougher sell. :ghug:

Is there any 'bribe' that would work?!? :lol: If all else fails... ;) Even if the bribe is only that she try the tube for a specific time period?? If she can get over the obstacle of 'learning' to insert, then it may be easier to have her carry on??

As for your husband, I've found it's sometimes better to not involve mine in everything. It's great to have the support and the second mind to bounce ideas/thoughts with but... sometimes it's better to just have the 'control' and make the decisions. :D I don't mean for that to sound 'mean' or that I'm excluding him from all decisions but, when one person does so much of the research, the other's opinion can sometimes confuse/complicate matters. As MLP suggested, can you give your husband info and ask to discuss the options after he's read the studies, etc.??


MLP - in past conversations I know I've mentioned that the 'bulking up' was a big help in keeping S on the formula. He always believed the formula helped him build muscle quicker than his friends. This was when he was still on the elemental formula. I don't know if it was the formula that made him bulk up quicker compared to friends or if it was simply different body builds??... but whatever worked was good with me! :D I don't know if you have the option with DS' shakes but, once S switched to Boost, I would sometimes buy the high protein Boost shakes. I didn't always (didn't know how much protein would be too much) but, by switching it up once in a while, it kept him motivated to stick with the shakes so he cud 'build muscle' side. ;)
 
My daughter became so thin that she could not fit into adult sized clothes and actually had to go back to wearing clothes for 10-12 year olds or 12-14 year olds. She was 18 at the time so she hated that.
I promised her a shopping trip if she agreed to the tube and my husband promised her a kitten :ybatty:.
The kitten was an excellent incentive to keep the NJ tube in!!

Girls are tougher definitely. Being skinny and size 0 is seen as a good thing, especially when they are teenagers.

My daughter recently gained a lot of weight because of cushing’s syndrome. She was absolutely distraught and worked hard to lose it. Now she has lost about half of what she gained and I’m emphasizing being healthy versus skinny. It’s only sort of working :lol:! Girls are really tough!!!

But anyway what did work was her sister emphasizing that curves are also attractive. My daughter went up two bra sizes ;). She was pretty pleased about that ;).

It is really hard. I don’t have a real answer except that maybe you could talk to her psychologist about emphasizing health and growth and the dangers of being underweight.

And have her point out a G tube is very different from an NG tube. No one will know about it. Once it heals she won’t even notice it. My daughter keeps forgetting she has one - when we went shopping recently, the saleswoman came into the changing room to help her and kept staring. We thought it was weird but couldn’t figure out why. Much later we realized she had seen M’s tubes! We are so used to them, we don’t even notice them :lol:!

I can’t remember if I have shown you a picture of my girl with her tubes (both NJ and GJ) but I can.
 

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