New here and Daughter in the hospital

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Dejathoris

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Mar 21, 2013
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I'm new to the forum and sitting in the hospital next to my 13 year old daughter as I write this. She seemed fine until she turned 10 and then she just stopped growing. For two years I went from doctor to doctor trying to get them to test her for something--anything--because this wasn't normal. Finally I lied and said that there was a family history of Celiac's and I thought she had that. We were sent to U of Iowa Children's Hospital where she went through a battery of tests and it was determined that she had Crohn's. This was a year ago.

Now she's having her first real flare-up, although she lives with symptoms every day. The flare-up seems to have been triggered by a cold that we all had. Does this seem to be common?? She has essentially stopped eating the last several weeks since that cold because it hurts when she eats, no matter what she eats. (I'm trying to come up with something akin to plumpy nut bars that the WHO gives out to famine victims so that she only has to eat once a day.) And her iron levels plummeted! She looked like a ghost and just wanted to sleep all day. She had an iron infusion on Monday but it didn't seem to do the trick. Then she started vomiting and we wound up here. I'm on the phone constantly to her school and to my work. She has missed so much school now that we're doing a 504 plan. After a day of being rehydrated and receiving IV steroids (along with the immune suppressants and omeprazole) she is still tachy with very low blood pressure and now running a fever of 102. Sigh.

Thanks for this site. It felt good just to write out her story. Sometimes I wonder if I'm imagining things; writing this and reading others' posts makes me trust myself a bit more.
 
Hugs - has she tried formula- peptamen or peptide.
They really help
This tends to help give ibd kids a cushion they all need for illness.
Illness can trigger a flare since the body has a hard time maintaining without added stress on the immune system.

What maintenance drugs is she on???
Hope fully they will bump her up to get her to remission.
 
Thanks for those ideas. She's on azathioprine (immune suppressant) and omeprazole and now steroids. The doctor just came in and said no food/drink tonight as they might have to do an endoscropy in the morning to see what's going on. She's thrown up 3 times today and pooped 3 times today--yet she's eaten nothing since yesterday at noon. I so wish I could just give her my GI tract.

Thanks again :)
 
Sorry she is having a rough time right now. My son is also 13. I second MLP on the pepatem or Peptide. Yes a cold can push them right over the edge especially if they have no reserves. We were having some issues at the beginning of the year, Jack got sick with some kind of virus and lost weight he didn't have to lose and started having crohn's symptoms We finally got my son drinking Peptide to put some weight on and get the calories/nutrition he has been lacking. Wish we would have done it years ago. He put on 23 lbs in 5 weeks. Went from 77lbs 5' to 100lbs 5'1" we are on our 6th week on supplemental drinks.

You have certainly come to the right place for support and answers. Hope the scopes go well if they have to do them in the morning and they find some answers and can get her feeling well again
 
Still waiting to get in for the scopes and a CAT scan. Things are moving slowly around here. Thanks for asking though!
 
Sorry she is in the hospital. It is tough seeing our kids so sick. The nutritional shakes really helped my daugther through some rough times. Glad you are looking into them. My DD as well had her first flare from a sickness she got fifths disease and it was an uphill battle from there on until we had to have major surgery. Granted she had UC not Crohns so she is cured of her UC. Not that the colon-less dont have their own share of issues and complications. I hope the steroids give her the bump she need to get well quickly it always only took a couple of days of IV steroids to get things somewhat manageable for my DD.

Glad you found us and rest assure you are not alone! Keep in touch! Stay positive! She will get through this she has a great mom!
 
Hi and welcome.
No real advice to add. Your doing a great job. Sometimes waiting is the hardest part.

HUGS
 
The formula is definitely the way to go. If she can't keep it down or won't drink enough, the docs can give her an NG tube to slowly infuse it into her tummy. If they want her NPO, then push for TPN until they will give you a set time for scopes. Sometimes they forget how little these kids get in nutritionally.
 
So sorry that your daughter isn't feeling well. It's tough to watch them go through this over and over again.

Yes, a cold/bug can set off a flare. We have had that happen before...also, stress, growth spurts and hormones...it bites!

The 504 plan is a great idea, as are the shakes suggested by others. They can add some much needed calories and vitamins!

Trust your instincts! 9.9 times out of 10 they are right on, especially when it comes to your child! HUGS!!!
 
You've already had some great advice.. Hope your daughter feels better soon. Good luck with tests.

Sending you both (((hugs))) :ghug: xx
 
Sorry to hear your daughter is poorly again. Definitely worth asking about EN. My son did 8 weeks of Modulen via an NG tube (he couldn't stand the taste) exclusively and then slowly reintroduced food. It might be enough to help her over this flare. Hope things improve soon.
 
Hi everyone,
Thanks for the support. The scans and scopes showed NO strictures or abscesses so no surgery needed!!! I've spoken with the doc about peptamen and the steroids via IV seem to be helping. What a ride--not interested in doing it again but know this is life now. Thanks so very much.
 
My 16 year old son just spent 6 days in the hospital. We were told that he should only have Peptamen for 2 or 3 months - no other food. At day 7, he was not doing well and couldn't be motivated to drink more than 3 Peptamen a day and at only 250 calories for the 1's that was not enough calories. When I called his doctor, he said that he could have up to 20% of his calories from real food. I appreciate that his doctor is compassionate, but I want to make sure my son isn't reducing his odds of going into remission, by eating real food, too. Anyone heard of the 80/20 thing?
 
80/20 is less likely to work it has been proven many times over- to get the full effect you need no foods.
can you bribe him-
day 7 is hard
we gave Ds -age 9 money for each week-
plus I sat next to him bugging him to drink.

if he won't drink it ask for an NG tube
he can wear it all day or just at night and still get calories
hugs
 
Is there something he can have that is less fluid but same calories? My daughter wasn't coping at all well with the volume of fluid and has been swapped to fortisip compact. It is only 125 mls so far less daunting but still 300 calories!!

Good luck :ghug:
 
Gut. 2006 March; 55(3): 356–361.
doi: 10.1136/gut.2004.062554
PMCID: PMC1856067
Treatment of active Crohn's disease in children using partial enteral nutrition with liquid formula: a randomised controlled trial

T Johnson, S Macdonald, S M Hill, A Thomas, and M S Murphy


Abstract
Background and aims
Total enteral nutrition (TEN) with a liquid formula can suppress gut inflammation and induce remission in active Crohn's disease. The mechanism is obscure. Studies have suggested that long term nutritional supplementation with a liquid formula (partial enteral nutrition (PEN)) may also suppress inflammation and prevent relapse. The aim of this study was to compare PEN with conventional TEN in active Crohn's disease.
Patients and methods
Fifty children with a paediatric Crohn's disease activity index (PCDAI) >20 were randomly assigned to receive 50% (PEN) or 100% (TEN) of their energy requirement as elemental formula for six weeks. The PEN group was encouraged to eat an unrestricted diet while those receiving TEN were not allowed to eat. The primary outcome was achievement of remission (PCDAI <10). Secondary analyses of changes in erythrocyte sedimentation rate (ESR), C reactive protein, albumin, and platelets were performed to look for evidence of anti‐inflammatory effects.
Results
remission rate with PEN was lower than with TEN (15% v 42%; p=0.035). Although PCDAI fell in both groups (p=0.001 for both), the reduction was greater with TEN (p=0.005). Moreover, the fall in PCDAI with PEN was due to symptomatic and nutritional benefits. With both treatments there were significant improvements in relation to abdominal pain, “sense of wellbeing”, and nutritional status. However, only TEN led to a reduction in diarrhoea (p=0.02), an increase in haemoglobin and albumin, and a fall in platelets and ESR.
Conclusions
TEN suppresses inflammation in active Crohn's disease but PEN does not. This suggests that long term nutritional supplementation, although beneficial to some patients, is unlikely to suppress inflammation and so prevent disease relapse.
Keywords: Crohn's disease, enteral nutrition, elemental diet, children
Click to expand...

From:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856067/
Click to expand...


see above AMY2
 
80/20 seems to be more for nutrition/calorie boost - weight gain. We do 80/20 but my son is currently in "remission" His only issue he was having was no weight gain/growth and all tests came back normal.

Although he didn't really eat anything else other then the shakes as he was too full. We had issues getting him to drink them as well. We first had gagging over the sink, then lying about drinking them in school when he wasn't. Once we got it all worked out and he was actually drinking them, he felt so much better, had energy and was gaining weight so he realized they were really helping him and it wasn't so much a fight anymore. We finished week 6 and yes we still have to remind him but he can finish one in about 5 minutes now and isn't bothered by the taste anymore.

We just kept telling him this wasn't optional and it was either drink them or NG tube and he would either have to learn to put it in and take it out every night or sports were going to be out of the question.
 
Just want to send hugs :ghug: to you both. It's tough to see our kids sick and then ask them to take on the challenges of the treatments!

Also recommending the shakes! And, the no food to bring remission. My son did six weeks of formula only, he was also 16 at the time. He did it through NG tube overnight (inserted the tube before bed and removed in the morning). Everyone's different but he truly didn't have a hard time learning to insert the tube and it literally takes him seconds (almost two years later, he's still doing it 5 nights per week as a supplement). He also gained tons of weight and controlled most of his symptoms. Definitely worth trying!

Niks - there are some formulas that provide 1.5 cal/ml of formula, others provide only 1 cal/ml. The 1.5 formulas are thicker though...
 
Also just stopping to lend support...when dd was vomiting/losing weight we did en via ng but she was allowed to eat, although she wasn't interested in much. It helped her symptoms immensely to be on th he formula, though...it's so tough to be inpt-hugs!!
 
Thanks so much for the advice. I love the studies, too; my doc seemed to be more interested in listening to me when I showed her the study this morning. It's not that she doesn't listen, I suppose--they're busy (especially as she's the only one on call over spring break apparently). so I have to attract and keep her attention. And now she's seen how very little my daughter is interested in eating. She hadn't eaten at all for 46 hours and she wanted a snack bag of goldfish and couldn't even get through that. Doc thought it was because she ws sick but daughter piped up and said this was how she normally eats. So now we'll start talking supplements.

Glad to know I'm not the only one who goes in for bribery :smile: I bought a SIMS 3 add on if she would drink the barium and cooperate with the enema, and promised the main SIMS 3 (which you need for the add on to work) if she would cooperate with the needles for the cultures. She would have done it without the bribes but she was so sick and had clearly had enough and the tears were just heartbreaking.

So impressed with all of you--you're inspiring!
 
Update: She's coming home from the hospital later tonight! Hooray! The IV steroids seemed to help but the biggest impact was from steroids via enema, which I now have to give every day for two weeks. Hmmmmm. The poor kid was sick of endless needless and pokings/proddings in her nether regions. She's glad to be coming home but is not happy at all about enemas for two weeks. This disease is not fun.
 
Hi, I'm really sorry that your daughter and your family have to go through this. I've had Crohn's since I was 9 and I'm 26 now, I've had no surgeries and I'm starting to think I'm growing out of the disease. That happens, so keep it in mind for her future! I think it's great that you discovered it before she had her first flare. Now, to just ride this one out. The steroids will probably be what does the trick for her. One thing I'd highly suggest is stopping all dairy products and sticking to white meat over red meat. Also if you can, once she's feeling better, log every food and how her body reacts to it to figure out a diet that will work well for her. Flares occur when your immune system is suppressed, so it does make sense that she would flare after a cold. Invest in some good multi-vitamins from GNC or some place like that. Get her into yoga and relaxation techniques. I had a hard time wanting to relax when I was younger, but I've maintained remission as an adult through doing the best I can to stay stress free. Don't feel alone in this, I know it's hard but this will pass and she will be out soon enough.
 
Thanks, Michelle. One of my good friends is a yoga instructor so I think I might talk to her about your idea. And thanks for the other tips too--we've started keeping a food diary (although she has such a limited diet that it seems almost funny given that we just list the same things over and over again). She does love cereal with milk so I'm going to try alternatives to that. Thrilled for you that you have had no surgeries and may be outgrowing it!!!
 
A DR once said to me she has seen this disease " burn out " when kids are diagnosed young.... I hope shes right.
 
michellenwalker said:
I'm starting to think I'm growing out of the disease. That happens, so keep it in mind for her future!
Click to expand...

@michellenwalker: It's not possible to "grow out of the disease." remission yes, go away/cured, no.

michellenwalker said:
Flares occur when your immune system is suppressed, so it does make sense that she would flare after a cold.
Click to expand...

Flares occur at anytime. Many medications are used to control flares by suppressing the immune system.
 
Aww, I really feel for you...sending hugs your way. My son and I have been in the hospital three times in the last three months. He actually missed almost all of the third quarter of school. He's a champ though. He was able to do the work at home and has an excellent report card to show for it. We are fortunate that his school and his teachers are so understanding and supportive.

Doctors need visuals. Any studies/pictures/videos etc... will help you make your point. I've tried explaining the level of my son's pain to his doctor many times. It wasn't until he saw Gus curled-up on his bed and rocking that he finally "got it." Then we used the "healthy portions" picture in his office to illustrate how little Gus actually eats. Again, then he finally understood.

I hope your daughter is feeling better. You have found a wonderful community for support.
 
Tesscorm said:
Niks - there are some formulas that provide 1.5 cal/ml of formula, others provide only 1 cal/ml. The 1.5 formulas are thicker though...
Click to expand...

Tesscorm - Jaime tryed both of those, but the one she has now is 2.4cal/ml and because the volume is so much less she finds them much easier to drink!

They are called Fortisip Compact.

Good luck Dejathoris, thinking of you both :ghug:
 
Glad you are home now. Hope the enema's go ok - not a pleasant thing to have to put up with!
 
Welcome Deja, sorry I missed her story till now! You say before this flare "she lives with symptoms everyday". What are her normal daily symptoms? My son lives a fairly normal life but he too has daily reminders like increased bm's and for this reason I don't believe he's ever really achieved remission. I do hope she gets this current flare under control. Good luck!
 
Hi Deja, I'm glad your daughter gets to come home. I hope she gets the healing she needs from those enemas. It is great that they are working so well already! Hang in there, I know it's hard on mamas too.
 
Dexky said:
Welcome Deja, sorry I missed her story till now! You say before this flare "she lives with symptoms everyday". What are her normal daily symptoms? My son lives a fairly normal life but he too has daily reminders like increased bm's and for this reason I don't believe he's ever really achieved remission. I do hope she gets this current flare under control. Good luck!
Click to expand...

She has 3-4 bms a day and acid reflux. She also has very low iron levels so looks like death warmed over. She gets iron infusions to help with this. She does live a normal life--horse riding, theater, babysitting--but I have noticed other kids using the bathroom quite so much ;). I can't imagine her having no symptoms.
 
Poor kid is NOT happy about the enemas. I've called the doc to see if we can come up with some other kind of med as the sobbing starts about an hour before it's time for the enema and I can't take much more of this. Sigh. (of course I will take much much more than this, but I so wish neither of us had to.)
 
I don't think I've ever read of steroids via enema. Is there any tapering off or does she have the same dose daily for 2 weeks and then nothing? If she can avoid oral pred, it might be worth the 2 weeks of drama. Still, I'd hate to have to do that, especially to a teen girl!
 
If she hasn't tried already is there any way she can place the enema herself. She may feel better would it if she has control.
 
thanks for the idea Catherine! I just suggested it and she looked at me like I had lost my mind, but then the wheels started turning. I think she might go for that, or at least try it. I'll let her mull it over today at school and bring it up again this afternoon. Thank you!
 
Dexky said:
I don't think I've ever read of steroids via enema. Is there any tapering off or does she have the same dose daily for 2 weeks and then nothing? If she can avoid oral pred, it might be worth the 2 weeks of drama. Still, I'd hate to have to do that, especially to a teen girl!
Click to expand...

It is weird, isn't it. Apparently the steroids via IV at the hospital were working OK but weren't reducing inflammation enough in her colon (or not as fast). They tried the steroids via enema and that seemed to work very well in that localized area (she was still on the IV steroids) and so they sent us home with a 14 day supply of them. No tapering off, although she will still be on the oral prednisone and I assume that will taper off.
 
Welcome to the community. I'm so sorry to hear about your daughter :(

It sounds like she had quite a flare. That the flare occurred while she's on azathioprine makes me wonder a couple things:

1. How long has she been on the azathioprine?
2. If she's been on it longer than 6 months, have they tested her thiopurine metabolite levels to make sure it's within the therapeutic range?

In addition to that, the tachycardia, lack of desire to eat, and nausea makes me suspect that she is deficient in magnesium (very common in Crohn's disease). I suggest you get her levels tested and get the actual number and share it here as, "normal" often is not which we can explain further at that time.

All my best to you and your family.
 
Thanks, David--this is great advice.

She has been on azathioprine for 15 months and was tested back in November to make sure it was in the therapeutic range. It was, but on the low end. I'll check with the doctor about that today.

I'm getting some magnesium. She has a follow-up appointment next week so I'll ask for these levels to be checked as well.

Everyone's ideas/advice is fabulous--there's only so much I can keep in my head and this all helps so much!
 
If it was low end of the range, I think it's worth revisiting that for sure.

Please supplement the magnesium under the care of your doctor. Done incorrectly, it can result in increased diarrhea. I'd suggest printing out this paper and highlighting the following for them:
Magnesium deficiency is common in Crohn's disease, especially in patients who have had an intestinal resection. The best treatment consists of oral supplements with magnesium heptogluconate (Magnesium-Rougier) or magnesium pyroglutamate (Mag 2). The other salts of magnesium will cause more diarrhea. The total dose of elemental magnesium required to ensure normal serum magnesium varies between 5 and 20 mmol/day. To avoid causing diarrhea with magnesium supplements, I recommend that the total dose be mixed in the ORS and sipped throughout the day, ice cold and flavoured with non–sugar-containing agents.
Click to expand...
Also make sure they read this paper so they're a little more up to date on magnesium.
 
Out of curiosity, where is her disease? Small intestine, large intestine, or both? If both, how much of her large intestine is affected?
 

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