Getting frustrated, looks like we're losing all ground we gained...

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CarolinAlaska

CarolinAlaska

Holding It Together
Joined
Jan 24, 2013
Messages
2,525
Jaedyn was being pretty stable until the end of July when she got strep throat followed by a sinus infection that put her on two antibiotics back to back. She's lost her appetite, feels nauseous all the time and pretty much won't drink her formulas either. She's lost at least 6 of her 20 lbs that she gained (haven't weighed for about 10 days). She says her stomach doesn't hurt and she doesn't have diarrhea... She's been adamantly against NG tube or MICkey. We see the GI in 2 weeks... Do you think this will just get better now that she's off antibiotics (since Tuesday night), or should I be doing something more?

I'm becoming the horrible naggy mother again and we both hate it.
 
It sounds like a bump in the road to me. My son lost and regained the same 7 lbs about 4 times...
 
I hope so. I know the molehills look like mountains right now, because I am also sick right now...
 
:ghug: It's hard to not become that WORRIED naggy mom. It probably is just a result of the antibiotics still... if you're worried about the weight though, can you add some higher calories in the meals she does eat? Or, I think it's Nestle, also sells nutrition puddings (along the same line as the nutrition shakes), or if you google Boost recipes, they have smoothies and one or two dessert recipes made with the Boost shakes (I'm sure you could use the Peptamin or Ensure in place of the Boost).
 
Thanks, but if she eats anything she gets nauseous. I think I'll try to get her some probiotics though.
 
That's a shame! Is there any way your GP could give her something for nausea for just now so that she can at least eat a bit more until the appointment? Does she like smoothies? Maybe you could put some high calorie foods in them and just let her sip a little at a time.
 
J had a chest infection last Easter and it took weeks for him to recover. He did but it just took extra time, I presume due to his immune system being weak.

Fingers crossed that she turns a corner soon.

Ands. Xxxx
 
I hope the nausea subsides and life begins to improve.

Ands - why has J got pred mouthwash? It rang a bell with me in case it would help my son
 
hugs
lots of smaller more frequent meals ( or drinks)
GI gave us zofran to use for DS.
now he only drinks after he has eaten since he still gets nausea.

Hope things pick up quickly for her.
 
Hey Carol, :ghug:

We have not experienced the nausea issue here but during the time I have been on the forum I have read numerous times that many members find relief from nausea by using ginger. Some use it singularly and others in combination with meds like Zofran.

Maybe worth a try??

Dusty. xxx
 
Pumpkin and I went to Anchorage today for her check up with her GI doc. It was perfect timing because she has been going downhill fast.

As I mentioned two weeks ago at the end of July Pumpkin contracted strep throat again. Just as she was finishing her amoxicillin for that she had a bad sinus infection so she took another 10 days of an antibiotic called Omnicef. By the time these 3 weeks were over, we were hoping that she'd bounce back, but she didn't. She did get over her throat and sinus infections, but she didn't get her appetite back which went away with the illness and antibiotics. She is tired a lot and if she eats anything or drinks her formulas, she has to lay down because it makes her feel sick. Over the course she lost 7.4 of her 20 lbs she had gained in the previous 6 months :(. She had been up to 90 lbs, but now is back to 82.6 :(.

This morning frightened me a little. We got her up early because it takes 3.5-4 hours to get to Anchorage from here and had to get a start by 6 am. As we were gathering our supplies for the road, Pumpkin tripped on her pillow and then had a seizure (not sure which happened first). This really got my attention, because she had not had a seizure for over a year. When her nutrition is good, she doesn't do this...

Anyway, her GI doc thinks the recent illnesses flared up her Crohn's and wants her back on either enteral nutrition or prednisone. Pumpkin doesn't do well with enteral nutrition - she won't go out of the house with an NG tube in. She is too self-conscious. She won't insert it herself and has to be put under. She also is not wanting the MICkey button, but this may have to be in the works if the prednisone doesn't turn things around.

We start tomorrow on the pred and call the GI doc next Thurs or Friday.
 
I'm so sorry to hear that she is having trouble. I hope the pred works quickly to get the inflammation down and she gets her appetite back! I'm glad that she is over the strep. Did the doc give her anything for the nausea?

Such a long trip when she is feeling so bad, I know it had to be rough. I'm glad you guys are back home and I'll be praying for her to feel better quickly!!
 
Oh my goodness Carol, what a day for you and your lass. :( :ghug:

I so hope you are both able to rest up some now and the Pred kicks in fast to bring the inflammation under control. Sending much love and well wishes that Jaedyn is soon feeling on top of things, bless her. :heart:

Dusty. xxx
 
Sorry to read you guys are going through this:(

Is this her first time on Pred? When was she last scoped?
 
Hi Carol

Just sending you all my very best wishes and I hope Jaedyn starts to feel a bit better soon.

Living in such a small country as the UK, we forget the distances that you guys have to travel sometimes. I'm glad you are all home now safely.

Take care and lots of hugs and kisses. 😘
 
Hugs
Sorry about the seizure
Hope the pred kicks in really soon.
DS did both pred and en at the same time at one point since en can only help.
 
So sorry to hear J is having such a bad time.

Hopefully she'll pick up her appetite soon. Hopefully the seizure was a one off, but I know how they can completely wipe them out. She mush have been zonked out on your trip to GI.

Good luck with Pred xxx :ghug:
 
Sorry you had such a hard day Carolin. Hopefully this is just one of those bumps in the road and the Pred will give her a little boost back into remission.

I understand about the EN. For some reason my son is so adamantly against it. He is a pretty reasonable person but that all goes out the window when it comes to EN.

(((((Hugs))))) Hope that weight comes back soon!
 
Sorry Carol hope the pred works quickly for J. Jack is doing Pred and EEN right now hoping to get his flare under control. The similarities between our 2 this summer. Jack was on antibiotics for cellulitis in July straight into antibiotics for C-diff and went steadily downhill from there. No appetite - lost 6 lbs went from 98 down to 92.
Sending hugs, support and prayers that things turn around quickly.
 
Jmrogers4 said:
Sorry Carol hope the pred works quickly for J. Jack is doing Pred and EEN right now hoping to get his flare under control. The similarities between our 2 this summer. Jack was on antibiotics for cellulitis in July straight into antibiotics for C-diff and went steadily downhill from there. No appetite - lost 6 lbs went from 98 down to 92.
Sending hugs, support and prayers that things turn around quickly.
Click to expand...

We may be doing EEN too if the pred alone isn't enough. Jaedyn can't drink the stuff right now and she she won't do the NG tube because it is too embarrassing. We'll do it if we have to though. Just hoping for a good response to the prednisone.
 
Sorry to hear she hasn't been able to bounce back! :( I hope the pred does the job for her so she doesn't have any further stresses from dealing with EEN again. :ghug: Hoping you see quick improvement.
 
Oh Carolin...so sorry to hear about poor J. I know antibiotics wreck me. There are a few members here who can tell you I could have sworn I was on death's door from them...I could only imagine a kid with IBD having to endure that!

Prednisone...the med we love to hate! But when it works it works! I am praying it works...AND FAST! Then she can worry about gaining those pounds back.

Poor kid...like it isn't hard enough being a teen she has to have the added stress of feeling bad and worrying about weight gain:ghug:
 
Had an appt with the pediatrician today - she put Jaedyn back on EEN. Will try to see if she will drink the stuff if that is all she gets. Continuing pred. Has appetite but can't eat because she feels sick and gets full too quickly (after a couple bites). Hasn't lost any more weight but at the same weight she was at 10 days ago even on pred. You should have seen Jae's face when we started discussing the NG tube again. In the same visit we were talking tonsillectomy - two big scary ugly plans - poor girl! She is giving her until Monday to see if we can find something that will go in orally, then will be looking at another trip to Anchorage to get the NG tube in and hopefully train her to do it on her own...

Jacqui, I'm wondering how Jack is and whether he is responding to the pred + EEN?
 
Sending (((HUGS))). I'm sorry she's having such a rough time and hope thing will be getting better for her soon.
 
He is doing well still doing a majority of EN at this point but have added some food back in and watching.
I don't know if it was the Pred, The EEN or a combo of the two but has definitely perked up and while he has never had a big appetite, he missed a shake yesterday afternoon because the nurse's office was locked up and said he was starving when he got home and had a shake and some applesauce and wanted dinner an hour later when he had some rice and chicken.

Jack has put back on 3 pounds. He still wasn't hungry while on the pred which is definitely not what I remembered from the last time so I think the EEN really made a difference there.

Hope Jae finds something she will drink. Jack will only drink the Strawberry Peptide now. Tried giving Boost and he said it didn't taste good. Which is quite the turn around from when we did this in February and you would have thought I was trying to give him swamp water the way he gagged and complained about the taste of the Peptide.
 
FWIW, I've given Stephen some of these shakes as well (link below) and he says they do taste different from Boost (not better or worse, just different). To be honest, I do wonder if the quality is as good as Boost/Ensure as I've never heard of this company before but, Stephen's more likely to drink it because it has extra protein in it. And it seems to compare decently as far as minerals/vitamins. So, we compromise, I send him some of these, some Boost and some Boost Fruit...

Found one review on these shakes, got an A for nutrition but, again, not sure of the reliability of the review???

http://www.premierprotein.com/category/shakes/

http://www.examiner.com/article/the-best-and-worst-ready-to-drink-protein-shakes

Oh, just a note... it is quite high in protein, I wouldn't use it exclusively... just something to add variety to the shakes..
 
Gosh Carol, I'm so sorry you are both going through this again. Its so tough when you think things are getting better, and then they're not. Hopefully she will feel a bit better this weekend so she can eat. Sending best wishes.
 
my son did 8 weeks of the shake exclusively 2 years ago when he was 12. 8 a day for 8 weeks and all the same flavour. He showed great strength and was motivated to avoid the NG tube. We paid him per shake so he had some gain out of it. He is now by his own choice doing 6 weeks exclusively again - it is very very hard but he feels better and is being paid again per lid off a shake. In support I have stopped wine and everything like choc crisps etc. She will be able to drink them especially if doesnt want the tube. Make them very very cold, shake a few times and drink with the straw at her pace. my son has them at school with no problem. Good luck
 
Fecal calprotectin came back at 17! I'm thrilled! This is the best it has ever been. The docs think that perhaps that a Crohn's flare isn't the reason she wasn't eating. She's on a full EEN right now with pred, so hopefully the docs will get her off pred ASAP and allow her to eat with her EN again. Maybe she was just getting sick of the EN that she was previously on and feeling side effects from the back to back antibiotics. Jae really wants to eat again :) Hopefully when she does, she won't feel full after a couple bites.
 
WoW 17. That's great.

Ya, I wonder that with Grace. Maybe after awhile they just want to take a break from EEN. So they stop drinking and we start worrying.

HUGS
 
So... the verdict is that we can do a fast taper of Jaedyn's prednisone (decrease by 10 mg/wk - really that is the fast taper?!), and slowly add food to her EEN to see how she does. I'm glad, but nervous too. She is gaining weight again and her energy and moods are good. She'll be really glad for the food!
 
Grace's tapper was 5 a week. So ya I guess that could be considered fast.

I'm glad she's improving.
 
Yep, we have been tapering at 5 mg/wk too. But then again she's been on it for what seems like forever....

Hoping your taper goes well!!
 
She ate two regular meals today without losing her appetite and drank 1500 cals of EN. I'm so relieved she is getting back on track!
 
So fab to hear all is going well Carol and long may it stay that way! :)

:mademyday:

Dusty. xxx
 

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