New to Forum, newly diagnosed 13 year old - J's story

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CarolinAlaska said:
Muppet, even if EEN doesn't work in UC, supplemental EN could be very valuable for helping her get the nutrition she needs, help with growth and regaining her weight... It may not be a stand alone solution for her, but still could be very beneficial. Don't throw the baby out with the bath...
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In Sarah's case there's no failure to thrive. She's around 5' 6", maybe 5' 7" and if anything, she's very slightly overweight. Definitely not a stick.
 
CarolinAlaska said:
She admitted that "most" of her patients go right to prednisone when diagnosed. That may be because they present differently? Or it may be because she doesn't offer any alternatives. She didn't offer anything else to me until I read up on it myself and asked.
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I think you nailed it Carol! It was certainly never mentioned to us as an alternative to pred!
 
it was never mentioned to us either. If it wasnt for this forum we never would have heard of it. When I asked the doctor why it was not mentioned or offered he said exactly what you did most Americans have no interest in it they only want to go straight to drugs. I think this is an unfair presumption on the part of physicians and it should be offered to parents and let them make the choice. Problem is like MLP said prednisone is cheap and easy to use. EN is more expensive and requires more effort on the part of the physician as well as the parents.
 
Muppet, glad to hear it. I made an assumption, but glad to hear I was wrong. For us the weight issue is the biggest problem.
 
I sure hope my GI and ped come up with a plan tomorrow. I've waited two days for the GI to call the Ped with a plan so we can start the EEN. Crohn's is definitely a waiting disease...

I've also had a few wonderings. Does anyone know if recurrent lymph node swelling in the neck/recurrent sore throats has anything to do with J's Crohn's?
 
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Have they tested for strep? What does your ped say about the sore throats and lymph nodes?
 
Yes, off and on we've checked for strep. I guess I'm just looking for correlations now that I have a diagnosis. She isn't having fevers or much problem with it now, but had recurrent problems this year... leads to antibiotics about 3 times a year.
 
My son had lymph node(neck) swelling pre-dx, I think that is part of the reason the GP kept saying infection, viral blah blah blah. Then shortly after starting remicade he had it again which flipped me out a bit. I've gotten it checked each time and never seems to be any rhyme or reason to it. Although, C has told me he always knows when his allergies are going to flare because his lymph nodes swell.
 
No idea on the lymph nodes, sorry. Just wanted to wish you luck with the EN! My son managed the 8 weeks fine via the NG tube, he actually coped alot better than I thought!
 
Well, we have a date now. Next Tuesday they are going to start J on her EEN. It will start as inpatient so we will have support in the start, get through questions of "is this right", make sure we can do it on our own, start 1/2 dose and advance slowly, etc
 
I'm happy to hear it is all in the makings..
Hopefully this will get her feeling well and gaining some weight :)
 
I'm going to update on Jae. Many of you saw on another post that Jae was in the hospital on Tuesday and this morning to get her NG tube placed and EEN started. It was a disaster from the start. We ended up coming home before noon today with no NG tube. Couldn't get it started, Jaedyn was traumatized by the first efforts, tried two other times then decided it wasn't for her. She has changed her mind that she can drink all the Ensure, and kept a really good attitude today. She only had 5 to finish today, but it is the most she has ever drank in one day. Tomorrow she will have 6, then from Friday on for 8 weeks she'll have 7 a day. The pediatrician is watching her for refeeding syndrome since she doesn't typically get that much nutrition. Tomorrow they will draw blood and check some electrolytes.

I'm wondering what is helping my daughter so much in what we've been doing since her diagnosis... she hasn't had joint pain since last November or December come to think of it. I'm wondering if it is the Vitamin D3... hmm! Or perhaps bringing her home to homeschool (decreased stress) Or is it completely getting her off the gluten since she got her Crohn's diagnosis - that is definitely a trigger of her GI sxs... She still cycles and has bad days of abdominal pain without rhyme or reason, but she seems to be having more good days than bad. For example, many of you saw that Jae was able to eat a steak dinner on Monday night with corn and beets for her "last supper" (before starting EEN). She tolerated it well, but did have a little pain on Tuesday at hospital (may also have been the stress of the day). At any rate, today I am much more hopeful that tomorrow brings more healing, weight gain and a healthy girl in remission with this EEN too.

Now, I'll go to bed since it's 10 oclock and I'm pooped from the past two days at the hospital, working this afternoon, and coming home to my 3 kids I hadn't got to see much of while in hospital with Jae... Lovely bed!
 
That's a shame she struggled with the tube. I hope she continues to manage to drink it herself. Love my own bed too!
 
Glad she is doing so well.
Had to google refeeding syndrome I had never heard of it.
Hope you had a good rest and let me be the first to say Good Morning!
 
Carol, I am so sorry to hear that your daughter had such a rough couple of days. At least you know that is not the route that is best for her and she is willing to try the drinks at home. I wish her the very best.
I noticed you asked about swollen glands. Does she still have them: b's neck felt sore to her for a day or too also. Not sure why? flu season, so I didnt worry.

Prednisone treatment: When our daughter was first treated, we did not know about other treatments available. After treatment started, I saw that our GI followed the standard procedure in the U.S. at the Mayo clinic, and another major clinic in Israel. I am not sure if it is outdated to use Prednisone first, but when you are in a severe flare, Prednisone acts quickly. I still have no regrets. It was short term and because of the fast acting Prednisone, there has not been any major damage done to B's colon, thankfully.

Joint pain: that is so great she is not experiencing joint pain now.
I attribute a lot of B's pain to growing at this age, and usually it is. Not always true when you have Crohns though. As moms we cant help but worry :)

Let us know how she is doing ...
 
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Hugs
Glad she is drinking
After she has been on feeds for a few weeks ask about upping her calories.
DS was on 7-8 shakes last year when he was EEN only.
He weighed about 50lbs at the time .
Now weighs 70lbs .
 
Jaedyn has drank a new personal best - 6 cans in one day!

MLP - She says she is not hungry during the day. She'll be doing weekly weight checks with the pediatrician, and will discuss increasing her Ensure if she needs to.

Julie - she doesn't have swollen glands really now, but she did in the fall when she was having a lot more problems. I was just trying to connect the dots.
 
Well, she's made it through 2 days of the full dose of 7 Ensures. She has to drink one can every 2 hours, which she only does if reminded. She's done it though. Yesterday she felt sick to her stomach, but not as much today. Both yesterday and today she had diarrhea - yesterday's was painful. I'm sorry about this as she hasn't had to deal with diarrhea since her cleanouts for scopes in December. I hope she doesn't have 8 weeks of it now. She is also having a lot of gurgling since starting the Ensure. Is this normal? Tonight she is having joint pain in her knees. I hope it is just from sitting wrong or from helping with the snow shoveling yesterday... sigh.
 
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She is doing so well drinking all those cans. I remember Andrew feeling a little sick on and off if he felt he had taken too much Modulen. His tummy gurgled too. As for the diarrhea, I don't think he had that problem. I know his stool was softer than usual (and maybe a different colour) but he still only went twice a day as usual. Hope her knees settle down, I'm sure it's just from the shovelling - thinking positive for you ;).
 
These kids are so strong! It can't be easy having 6 or 7 shakes in a day! :ghug:

Stephen did have diarrhea throughout his six weeks of EEN (dietitien said it sometimes happens) but he had no pain or urgency associated with it. I hope it settles for her, as well as the knee pain! :ghug:
 
Yeah that
DS was all liquid or very loose but only once a day .
Glad she is drinking

Drinking too fast or too much at once made it swishy.
 
Yep, Jack complained about stomach pain about 2nd day of 7 bottles (we still haven't made it to 8 per Rx) said it wasn't bad just uncomfortable after my 1000 questions he said he just thought it might be because his stomach was so full. I don't know if he has felt that in years. He stayed the night at a friends for a birthday party and brough all his drinks with him.
Hope the joint pain is from shoveling snow as well and it goes away quickly
 
Well Jaedyn is not adjusting well to the 7 cans a day. She is still getting them in, but she feels sick whenever she drinks the stuff and spends a lot of time laying around waiting for her stomach to feel better. Poor girl. She thinks now if she drinks water when she is drinking the Ensure that it settles her tummy better, but I am not so sure that is isn't making her feel fuller. I have asked the nutritionist to get us some samples of other formulas that might be easier for her to digest. I hope we get them soon.

Today she gave a stool sample for DH to take in for the fecal calprotectin test. That was a hoot. It was so slimy and runny he had to use a spoon to scoop it into the container. He asked Jaedyn if she would just catch it in the container, and she said because she doesn't know if it is going to come out calmly and obediantly or all in a rush getting all over. Apparently this one was all in a rush... Ew! Good thing we had the "hat" to put in the stool to catch it!
 
She has made it to her 2 weeks (on EEN with Ensure) point today. She is up 2.5 lbs from the start and 1 lb from last week. She no longer feels sick when she drinks and usually her stools are partially formed (described as shaped like little worms) although yesterday and today she had diarrhea. No abdominal pain for almost a week (except when examined). Fecal calprotectin from last week still pending. She has had some stinky gas the entire time on Ensure. Right now Jaedyn and her dad are meeting with the nutritionist to discuss whether she is getting enough, giving a trial of Peptamen Jr, and water intake.
 
Yay! for weight gain. Wish I had answers for you on stinky gas. Jack's has always been extremely stinky but then so has his brothers and of course they like to try and out stink each other. (The joys of boys). Let us know how the nutritionist visit went.
 
No changes with the nutritionist. We got two cases of Peptamen Junior, but Jae says it tastes like vomited hot chocolate (makes sense since it is predigested, right?!) and so far it is a no-go. Will stay on same number of Ensure for now. Everyone seems pleased with the pound a week progress...

Jaedyn admits the stinky gas is not new but has been consistent throughout the time of EEN. I guess that is somewhat reassuring.
 
Jack didn't like the Peptamen Jr. either he didn't try the chocolate as he doesn't like regular chocolate so that would have worked. He doesn't mind the Peptide, doesn't really like the ensure, his favorite if you could call it that would be Boost. Glad she is okay with ensure. I figure if you can find one they will drink then we are one step ahead.
 
Jmrogers4 said:
Jack didn't like the Peptamen Jr. either he didn't try the chocolate as he doesn't like regular chocolate so that would have worked. He doesn't mind the Peptide, doesn't really like the ensure, his favorite if you could call it that would be Boost. Glad she is okay with ensure. I figure if you can find one they will drink then we are one step ahead.
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Especially since Jack and Jaedyn are drinking the stuff instead of putting it down a tube. We are very limited on what they can tolerate to drink... I wish we had other ones to try, but since we're rural we don't get a lot of reps here encouraging with samples...
 
Glad she is still drinking it.
That was all our Gi wanted as well just one he would drink .
He couldn't stand peptide , never tried ensure ( due to soy protein)
Loved boost but Gi wanted at least semielemental for EEN .
So peptamen it was.

One pound a week is a good start.
 
Ditto one pound a week is a good start. As the EEN heals inflammation she will absorb more and more. GO JAE!
 
So here we are, 2 1/2 weeks into the 8 weeks of EEN, and Jaedyn is having too much abdominal pain to finish 7 cans a day. So far today she has only drank about 2 cans. She said she is willing to let us put her under to get the tube down her, but I am wondering if that is going to work now. Why is she not getting better? Is a different formula going to make the difference, or should we go to prednisone now and let it back off the inflammation so the EN will help? I feel we haven't made any progress and I'm very frustrated. My little bit of hope is sopped down by all these what ifs again... :( Add to this the fact that our GI doc just went on vacation until 3-9-2013. :(
 
OH! Big hugs Carol. I certainly wouldn't rule out a formula change. Jack complained of random stomach pain with the Boost but hasn't at all with the Peptide. We tried to get him to drink an Ensure or two a couple years ago and he couldn't do it, said they made his tummy hurt and I didn't push as it was more of a you could try this if you are worried from his doctor, as opposed to now when it is a you need to do this or else kind of thing.
That being said I don't know if I would have changed the initial dose of pred we did when Jack was first diagnosed it certainly got things under control quickly and after he had been sick so long it was so nice to see him with some energy and hungry. You could do both as well, pred to get inflammation under control and EN to get the weight up. Just an idea.
It is so hard when you know it will help them and they need the nutrition but if it is causing pain when they have already dealt with some much pain you don't want to push it.
 
I know how your feeling, FIRST HAND.

My suggestions
1- New formula like Slash that Grace gets
2-Is she on Zantac or a PPI. I've heard the formulas can cause a lot of acid or something to that effect. We had to put Grace on these.
3-Can they sedate or give Valium to help calm her during the NG tube placements???


We HAD to add the pred but.........we are still doing EN. Maybe she could have a low dose for a short amount of time to get things settled down.
 
Hugs...
Have you tried the peptamen ?
Fwiw for DS
He was on supplemental kids boost from march 2011 to oct 2011.
It really didn't help and he kept getting worse.
He did EEN on peptamen jr + 6-mp from nov 2011-feb 2012.
He got a little better. Sed rate /crp went down but he didn't feel good at all.
Even two weeks of high dose pred then taper in feb - didn't take it all away.

Unfortunately - she didn't get this way over night and it takes alot of time to undo the damage.

Personally ( again not a doc just a mom)-
I would start whatever maintenance med your going to do ASAP.
I would also start peptamen since its easier on the gut with pred to just get her better .
 
Just wanted to send hugs and support. We really have no experience with EN. C was trying to supplement with Ensure for weight gain and like Jack he complained of the occasional tummy aches or cramps. Trying pepten Jr might help. Hugs!
 
Jaedyn says Peptamen Jr tastes like vomit. She won't drink it. Does Peptamen taste better? We tried some Digestzen (essential oil) on her tummy and that helped. I think she is on her can #6 now of Ensure. We see the GI on March 13 and I'm pretty sure they are going to start her on 6-MP at that time. I just don't know if we are going to make it on what we are currently doing that long, or whether we will have to put her under to intubate her so we can use peptamen junior, or if we can find another formula she will be able to drink and tolerate... sigh. I just want her to start feeling better and be one of those ones who responds quickly to this untoxic way to do things and to gain weight and grow... :( Is that too much for a mom to ask?

Thanks everyone for your support... I knew I could count on you! :heart:
 
Peptamen junior is for those under 13 for complete nutrition.
Peptamen is for over 13 so ..... She is in between . As far as taste
Both are horrid but I am not trying to sound mean but...
This is her health not a choice of whether she wants to eat her vegetables at dinner or not.
Doctor ordered meds including peptamen are taken period.
Ask jmrogers
I sat for three days - all day with a screaming crying kid who threatened to vomit
Plugging his nose to get him to take a sip of peptamen jr.
Every few minutes "drink" -day one resulted in one shake down
Over many many hours .
Now he can chug one if needed in five minutes. He still prefers straws to by pass the taste buds.
To put it bluntly increased weight increases her chances with this disease .
From what you stated she is severely underweight.
Things in life are not fair and having to drink foul formula is one of them but it just is.
Either it goes in by mouth or tube period.
I don't understand how she was allowed to leave without the tube.
When your nutrition is so compromised the body starts to protect itself by stalling things like weight gain/growth.
Next comes organs including the brain.... So very important to get fixed .
Jmrogers can give you tips as well since her son was older and would not drink boost ensure etc...
But when push came to shove and it was a plan per the Gi then he had to drink it.

I know its hard but TPN is harder and not I place I ever want to have to go with DS..
So foul tasting peptamen is that insurance to keep him healthy growing developing and give us a cushion in the next flare .
 
Pepatem and Pepatem Jr. are yucky. We use Pediasure Peptide. Jack's GI gave us samples of all 3 and none of them were good but the Peptide was by far the least offensive and so we went with that. I can tell you that from my perspective as well because I tried them all as well.

I gave him the samples and said this is not optional so you have to find one of these you can stand to drink. He still stood over the sink taking a sip and then rinsing his mouth with water and both of us crying the first day or so. I went out and bought him a Thermos just like this and it kept it cold and he was able to sip from it. It still took him an hour to drink one but after a couple of days he got used to the taste and can now drink one in about 5 minutes. We would also hand them to him to drink when he was preoccupied with something else. We wouldn't say anything, just hand him one and he would drink it.

It is all worth it when I look at him and see cheeks instead of guant hollows where they should be and some color in them and some sparkle back in his eyes instead of dark circles beneath. We are seeing a decrease in the fatigue, he is not waking up just as tired as when he went to bed.

Yes we did have the issue about drinking them at school earlier this week and I asked him for a solution as he had to drink them no matter what we just needed to figure out how to make it work. He came up with the solution and it has been working. I think it was a teenage thing and he was feeling like too many things were happening that were out of his control.
I told him he needed to find a way to make it work and we would back him whatever that may be but this was just like his medicine it is non-negotiable. He could come home with purple hair and we would negotiate if he would get to keep that as a teenager but when it came to his health and safety those would non-negotiable items.

Sorry this is so long. I hope you find a solution that works for her. We didn't go the EEN route from the start we did prednisone. We are not trying to get him in to remission but the GI and his Ped are exceedingly worried about his weight and are concerned it may start effecting his organs and are under the firm belief as I am that we will not see any signs of puberty unless and until we get some nutrition in him and some weight on him.
 

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Heading to the hospital tomorrow morning to get the NG tube under anesthesia. Jae isn't getting more than 5 cans of Ensure down a day right now and having a lot of belly aches, diarrhea, nausea, etc. Hopefully with the tube, she'll be able to get more nutrition, and better formula into her. Pray all goes well!
 
Good luck! Sorry to hear she hasn't been managing to feel better on that formula. Don't know if you have it there but I was told that Modulen has anti-inflammatory properties as well.
 
Good luck today. Definitly ask about trying other formulas that are less harsh on the stomach especially as she won't have to taste it now. If you end up needing steroids ask about budesonide also called entocort. It has a lot less side effects then prednisone and seems to work very well for a lot of kids. It is mainly absorbed by the gut which is why it gives less side effects.
 
Tube is in. It went well. She says it feels a little scratchy. The nurse and anesthesiologist said they understood why they couldn't get it in the first go round because they found they had to work it with a lot of twisting and turning to get it down. Thankfully her nose doesn't hurt now like it did last time after trying.

We're getting samples of different formulas to try. Will start with peptamen junior as that is what we have on hand.
 
Oh I'm glad it went well and tube is in. Hope this makes all the difference for her and she can start feeling better and gaining weight.
Keep us updated please.
 
Wow what a time you have had, both of you. My son is 14, very small, in height and weight, sombody thought he was 10 last week!! He was diagnosed 18 months ago, put on modulen, was supposed to drink 8 a day, only managed 5 a day, lasted a week, refused to drink them, ended up in A&E!! Put straight on steroids, developed moon face, and gained weight, tapered down over 12 weeks, however ended up with strictuplasty surgery last may, everything seemed ok, however its all gone wrong again, just had scopes and mri, find out treatment plan on thursday, think it will be surgery, resection, we have read and read so much, and it is a very frustrating time, a steep learning curve for all, and the worse bit is alot of people dont understand the first thing about crohns!!

NJ tube wasnt suggested to us at all in the UK, it doesnt seem to be used very much at all for teenagers.

As said in previous post by somebody, all children react differently to different treatment plans, so it does take a while to find something to suit your child.

I really wish you both well and that you find a formula that suits.

Good luck and look forward to hearing progress report x
 
Hugs glad the tube is in.
Really hope it works for her.
As far as pred vs Entocort .
Entocort only works on the lower Gi tract . If she has any inflammation higher up - then the doc will probably go with regular pred.
 
Carole, I'm so sorry I've missed so much here!! :( Poor Jae, so sorry she's had to go through so much!

I am glad the tube is in! Hopefully, this will help! And, if necessary, makes it so much easier to change up formulas as taste will no longer be an issue.

Lots of luck! :heart:
 
I've missed alot, so sorry she continued to have trouble but so glad she was able to get the tube down.

If this becomes the treatment for C we may have a bit of trouble since he vomited with the first one in and it came out his mouth. I've tried to tell him it isn't the medical emergency he felt it was but I think it was just tramatizing with everything else that was going on that week. But I'll cross that bridge when we get there if it is necessary then he'll just have to adjust.

I hope the EN goes well and she is healing quickly now! Hugs and Support!!
 
She is feeling pretty sore in the nose and throat right now. They say it takes about 3 days to get used to it before you don't notice it any longer.

She is sleeping in the recliner tonight so that she can keep her body at a 30 degree incline, per a site we read on the internet... I hope she has a good night. Tomorrow we can get her a wedge pillow. Is this something other GIs are having their EN patients do who get 24 hour or night feedings?

She has not had any tummy aches on the new formula (Peptamen Junior right now) and had one soft but formed stool. Yes!

This was a pretty hard day on her 15 year old sister, who worried about her all day. She ended up crying in choir because the stress of it all was too much. She pulled out her journal that she hasn't written in for a year to help get things off her chest before bed tonight.

No one at the hospital knew who was supposed to be showing DH how to do the feedings once the tube was in. I was at work, but having never done this sort of thing, wouldn't have been much help. The people at the medical equipment store gave him a DVD about the pump, which he said was helpful, but left a lot of unanswered questions. Our nutritionist was sick at home, but called me this morning and told me there was a nurse at the hospital who would show her how to do it - no one at the hospital knew who it was or could figure it out. This is life in rural Alaska with chronic health issues, I suppose.

Thank God for the internet! DH, once he found out, found some good sites that walked him through the procedure of how to hook up the tube to the pump and so forth. Jae was pretty hungry by the time the food started to flow around 1:30 pm! :ysmile:
 
Glad you were able to figure out the pump!! :eek:

Be prepared for 'flow errors'! Murphy's Law applied, of course, seemed to happen to us tons of times at the beginning when we didn't know what to do, hasn't happened in ages now! :lol:

I am assuming your pump/set-up is similar to ours...

Causes - tube is kinked (simply unkink) or 'squeezed' - (excuse the completely 'unmedical' terms that follow! :lol:) If you leave the wheel in the closed position for a long while (the little wheel that moves up and down and is used to open/close the tube), can sometimes leave the tube 'squeezed' even when you open the wheel. Slide the wheel mechanism up or down the tube and simply unsqueeze the tube with your fingers. (You'll know what I mean when/if it happens...)

Particles on the 'eye' of the pump - where the chamber sits (chamber is where the formula drips), there are one or two sensors that 'see' the drip and beep (flow error) if the drips stop, make sure the 'eye' is clean - dust particles, etc. can cause the pump to indicate a problem.

Make sure to open the wheel when you want to start the flow - when you fill the bag/bottle with the formula, the wheel is in a closed position, don't forget to open it.

Pillows, elevated sleep - Stephen's never done this and it hasn't been a problem, however, it does make sense that the elevation would help. There is a flap (again, medical terminology here! :lol:) between your stomach and esophagus that blocks acid from escaping into your esophagus, when the tube is in place, it forces that flap to remain a bit open. Being elevated probably helps minimize the acid from moving up. Also, Stephen takes a nexium each night before the feeding - has had heartburn on the nights he's forgotten to take the nexium (we were told this is why he was prescribed nexium).

The sensation of the tube - yes, Stephen said it bothered him the first couple of days and then became accustomed to it.

To help keep the tube in place at night, I would loosely clip the tube to his t-shirt with a small hairclip. Again, something that helped at the beginning but the tube doesn't bother him now...

Noise of pump - this really bothered Stephen at the beginning... you can try to muffle the sound with towels wrapped around the pump (but don't kink tube). I actually removed the pump from the stand, positioned it in his night table drawer and covered it with the towel (leaving space for the tubes) - this seemed to muffle it enough.

As she's not ingesting the formula through the tube, you can try to give it to her at room temperature (taste isn't an issue), I think it's easier on the stomach rather than cold from the fridge.

Hope some of this helps! :)
 
If the sound of the pump is an issue, one of the best ways to deal with annoying/irritating sound is to blend them with relaxing comforting sounds. A soothing CD played on repeat can be good for this. Merging sounds you like with irritating ones if the main approach to treating tinitus (where ear generates sounds that aren't there) & hyperacusis (extreme sound sensitivity) and there is really strong research to support it as a way to address stressful noise. I have a recording of storm in a forest which I always play for a few days when I'm in a new environment with noises that irritate me (buzzy airconditioning etc), blending the sound really speeds up the process of getting comfortable with the annoying ones.
 
sending hugs to your daughter. :heart: what a trooper she is!!
I hope this gives her all the nutrients she needs
 
Carol,
Just wanted to say love the new avatar and picture of Jaedyn. She looks super cute with the NG tube. As my son would say she is rockin' it. :)
 
I was really proud of Jaedyn yesterday. She went with me to the hair salon. On the way she was hiding in her coat and hood so no one would see her tube. As the time went on, she came out of her shell. We both got short haircuts and when she walked out, she listened to my encouragement to not be ashamed of her tube and to not cover up her supercute haircut. She even let me take her pic! I wish you could see the tape - she has painted little characters from her favorite Wii game (Legend of Zelda) onto the Hyfix tape to attach it to her face. She is very creative that way. I think she could make a business of it!
 
by the way, she got her first fecal calprotectin test back - it was 639. It was done the first week of her EEN. Since her other inflammatory markers have been normal, I think this test will be helpful to monitor how effective her treatment will be.
 
Carol,

tell Jayden she is an inspiration to all of us!! Post her new haircut if she is okay with that... hugs to you both.
 
Love to hear that Jaedyn is getting more comfortable being out and about with the tube. These kids are so strong! LOVE the haircut.

I hope the new formula is making her feel better.
 
Jaedyn had a formed, hard stool today. I don't even think she had one in February and I don't know when she had the last one before today. Unfortunately, it was on the hard side, then she had diarrhea a few times. An awful thing that happened today is that we got her throat culture back from Wednesday. She has group A strep after all. She had to go back in and get a big shot of bicillin. They broke it up and gave it in two shots into her legs. Is this going to mess up her EEN?
 
Sounds like she is doing so well! Cute picture. That's a shame about the strep. I don't think it would mess up the EN - it might be off for a couple days but since she will be continuing the EN it should go back to full effectiveness.
 
Jaedyn had a weigh-in today. She is up 12 oz (about a kilo). She sometimes has formed stools now and only having 1-2 stools a day. She still has abdominal pain, but it doesn't seem too bad. Her throat is much better and she seems happier most of the time. You should see her cute pics she makes on her tape for her NG tube on her face. Next week we see the GI for the first time since diagnosis and starting EEN. I think we're doing to discuss meds for maintenance, but not sure what she is going to say about Jae not being in remission yet on EEN. Perhaps she'll suggest pred again (she hasn't had any yet).
 
Carol,
I'm so glad she is feeling a little better, It's been a month on EEN now right? Are they going to do any labs to see if things are improving?
 
DS did not get to remission on EEN.
He was on 6-mp concurrently and did not get into remission so after 9 weeks EEN was stopped and pred /asacol/ 6-mp/allopurinol was started.
Weaned from pred
More tweaks to 6-mp
Still no remission
So go did another scope and then changed pred + Mtx/asacol
Things got worse so
Changed again to
Pred + remicade/asacol
remission
After 6 weeks of remicade .

Time frame from nov 2011 to oct 2012
 
Yes, 4 weeks today, but she failed the Ensure just 1 week ago. She's only been on the new formula 1 week
 
That is what I was thinking so it is almost like you have just started a week ago. Most of the improvement has been in the last week, correct? So maybe she will improve even more this next week before appt with the formula change.
 
Wow so many great responses! Just wanted to add that my son is 12 and we did one round of prednisone and it really helped bring down inflammation and he gained weight. I would choose that route again.
 
She has gained about a lb a week except for the 3 week where she lost a half lb. We are up 3 lbs in 4 weeks. (She has gone from the 0.25% to the 0.75% in weight LOL). That is the only solid improvement we've had. Stools still go from diarrhea to hard to normal from day to day. Still experiencing abdominal pain. The weight gain and the having formed stools are my most encouragement, but not sure it's enough :(. I think we'll do labs on the weekend and hold off the fecal calprotectin until we go to Anchorage since it took 16 days to get it back last time.
 
Here's another update. We've finished 5 weeks of EEN. The first 3 weeks were with Ensure by exclusively drinking it. She gained 2 lbs during that time, but then started having a lot of GI upset, diarrhea, anorexia, etc and couldn't keep up with it. She got an NG tube 2 weeks ago and had gained 1 more lb.

Today we went and had our first followup with Dr Wilson who is her peds GI. She was pleased with how well Jae is doing and she is starting Jae with 6MP (for maintenance) as soon as Jae gets over this nasty cold that she has right now. She also increased the flow rate and amt of Peptamen Jr that Jae is getting so hopefully she'll gain a little more consistently.

In 3 weeks Jae will start reintroducing foods, but will need to stay on the supplementation for nutritional reasons. We talked about NG tube replacement vs mickey or minnie buttons in 3 weeks when it is time for Jae to replace the tube she currently has. We also talked about getting a Fecal Calprotectin level in 2-3 weeks to see how much she has improved on EEN.

Jae's bloodwork remains pretty normal. CBC, CMP, ESR and CRP all normal, except her % neutrophils were high, which suprised me given that Jae has a bad cold (I'd expect her lymphocytes to be high, but perhaps they were suppressed so the %neutrophils was high)...

We were in the doctor's office for a little over 2 hours... I suppose when you drive 3 hours every 3-4 months, you gotta cover a lot while you can. It was a very thorough visit.
 
Sounds like a very productive apptmt! :thumright: I think it's always a relief when you know you have a plan going forward!

Really glad it seems Jae is doing well with the 'normal' bloodwork and gaining a little weight.

EEN eliminated quite a bit of Stephen's inflammation but, unfortunately, the supplemental EN was not enough to eliminate ALL inflammation, however, I do believe it played a part in controlling what inflammation there was. While taking no meds, Stephen's inflammation did not increase in almost two years, unimportant now why meds weren't added, but my point is that if you can keep Jae on supplemental EN for as long as possible, I think it can only help - not only for nutrition but also as a aid to control inflammation!

When you're ready to reintroduce foods, let me know if you have any questions. Stephen's ped hospital were very experienced with EN - I can pass along the reintro diet we were given (I've posted it a number of times so you may have seen it already).

Hope all continues to improve for Jae!! :D
 
Sounds like it was a very productive visit! 2 hours, wow that is awesome for face time with the Doc we usually average around 45 minutes maybe an hour. The main problem is the doc always side tracks me!! I have my little list of questions and one of them invariably sends him off on a tangent that I have a hard time bringing him back from, out come the charts, graphs, studies when I was looking for a yes or no answer!! HA at least he's thorough.

I hope the improvement continues and that Jae's levels have come down when you do the FC test. I think it is great you are doing supplemental EN, so many have had great benefit from it nutritionally and growth wise!
 
Clash said:
we usually average around 45 minutes maybe an hour. The main problem is the doc always side tracks me!! I have my little list of questions and one of them invariably sends him off on a tangent that I have a hard time bringing him back from, out come the charts, graphs, studies when I was looking for a yes or no answer!! HA at least he's thorough.
Click to expand...

That is Jack's doc as well, then he starts talking in medical language and we have to go Whoa! we need you to dumb down what you just said. I think he believes we know more than we do only because I've read or heard about something (usually on here :) )

Carol - I'm so glad Jae's visit went well and you got to spend lots of time with the doc. I have obviously become a firm believer in EN, Jack has never felt so well since we started.
 
Tesscorm said:
When you're ready to reintroduce foods, let me know if you have any questions. Stephen's ped hospital were very experienced with EN - I can pass along the reintro diet we were given (I've posted it a number of times so you may have seen it already).
Click to expand...

Tess, thank you. I have seen it, but can't remember where. I would love to see it again. We'll be doing the reintro diet in 2.5 weeks.
 
Woohoo on the weight gain! :banana:

Before I forget, the reintro diet we were given was:

Food is introduced in stages, each stage was to last 3-5 days (I stuck to the five days).

Stage 1 - 'white' foods - rice, pasta, bread (any type), potatos, plain muffins, rice krispies (no milk). A little bit of toppings are allowed (low fat cream cheese, butter, strained tomato sauce, etc. - but just a bit!)

2 - proteins - any type - I stuck with fish, chicken and eggs but we were told pork, beef, lamb, etc. would be fine.

3 - veggies/fruits - soft veggies/fruits, no skin, no seeds (includes poppy, sesame, tomato, seeds in/on berries, etc.), no membranes (ie 'skin' around orange segments).

4 - dairy - low fat dairy, any type

All else as tolerated. Permanent restrictions are:

- Seeds - Stephen is careful when ordering out to ask if bread comes with seeds, etc., we're careful at home straining tomato sauce/salsa but when ordering pizza, we haven't worried overly about seeds in their tomato sauces and it's been fine
- Popcorn - 'may' also have been corn in general but foods made with corn have been fine and Stephen doesn't like 'real' corn anyway, so we haven't tried corn kernals
- Fruit/veggie skins - GI says we can try skins but, 'pickiness' again comes into play, he doesn't eat many fruits/veggies so hasn't been an issue - we peel apples and he primarily sticks with melons, oranges, etc.

I believe we were told to extend or back up a stage if we encountered any problems - he didn't have any issues, so don't remember exactly what their instructions were regarding issues.

I did go slow with foods that I thought might be a problem, giving him just one questionable food at a time and just a little to begin with, ie steak, beans, granola bars, etc.

Good luck with the reintro!!! Jae will be soooo happy! EVERYTHING will taste great at the beginning! :)
 
Woo Hoo on the weight gain!! That is amazing :lol2:

What formula is she on? Jaime now on Fortisip Compact which is only 125mls but still 300 calories, she is coping much better with this!

Good luck with re-introducing food.

:ghug:
 
Dexky said:
Has she started the 6mp Carol?

Glad to hear she's gaining:)
Click to expand...

Not yet, Mark. She had a bad cold. The doc wanted her to get over it first, then today got the stomach flu. I hope soon we can get her healthy enough to start it without wondering what is what!
 
Today Jaedyn had a weigh-in and she gained 3 lbs in 1 week (total gain so far has been 9 lbs in 2.5 months) and has grown .75 inches in past week. This is the most gain ever. She is on real food plus 8 cans supplement/day. She is also on 6MP.
 

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