1 year into this journey

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CarolinAlaska

CarolinAlaska

Holding It Together
Joined
Jan 24, 2013
Messages
2,574
Here we are a little over a year from our diagnosis - so glad to no longer be where we were a year ago - freaked out and at the beginning of our journey into the unknown...it was all so scary then, and I'm so glad to have found this group to help carry me through!

Jaedyn is 22 lbs heavier now (1/3 of her weight at the time we started!), she has no abdominal pains, she likes to eat (in her own unique way), she seems content and ornery as ever (maybe even moreso), and is coming into her own personality. I would like to see her gain another 30 lbs, but I'm glad to be doing better than ever since she was a tiny kid! She hasn't had seizures except when given meds that lower her seizure threshhold.

She is seeing a counselor now, which is going well, for her anxiety about food and Crohn's related stuff. She is also working on social anxiety regarding peer relationships. Hopefully they can find a way to help her sleep like a normal person soon too. She has a terrible time getting to sleep.

Next month we see the peds GI again. I'm a little apprehensive, as she has been pushing for Jae to get a G-tube. The thought of this freaks Jae out, and is her #1 fear, according to the psychologist. The psychologist even went as far as to say as pushing Jae to get the G-tube would be traumatic to her and probably life-altering in a very bad way. The last time I spoke with the GI, she pretty much said that any weight loss was too much at this point and unacceptable, at that point she weighed 95 lbs, but since then she had a tonsillectomy, lost 8 lbs and has gained 2 back in the past month. We've tried two different appetite enhancers which both set off her neuro system negatively after once dose (seizure and pre-seizure symptoms). She has given up on Ensure and Peptamen Junior - so sick of them! NG tube was a traumatic experience too. Right now she is eating food and drinking Carnation Instant Breakfast for supplementation. She has started a swimming program and doing other PE activities about 4 hours a week. I'm thrilled to see her building her exercise tolerance to be able to do this, but it isn't helping her gain.

I'm too the point of pretty much telling the GI that an G-tube is off the table, and if she wants to help Jaedyn, she'll have to find another way. I know her heart is right, but I can't use fear as a motivator for Jae - she doesn't work that way - and unless Jae takes a terrible turn for the worst and we don't have any other options, we're not even going to talk about it any longer.

Has anyone else faced this issue with their GI and told them that a G-tube wasn't an option when they were feeling pressured to go that direction? If so, how did it go?

Lastly, I'm thinking strongly about enrolling Jae in a charter school program we have in our public school system where she will be working with other kids, but working at her own pace on the things she needs to meet school standards. I think it will be a good situation for her - I just hope the anxiety of doing something different won't set her too far back health-wise...

I guess that is my update. Thanks for reading, if you made it this far!
 
Hugs
It depends on her health and nutrition status.
I would ask the Gi if the g tube was simple due to a number on the scale or a true nutrition /brain development concern.
Remember that a child's body is a growing and gaining machine .
If the body is not getting enough nutrients then its stops gaining and growth.
Next it affects brain development
Lastly organ damage .

Not saying she is on that path but as you said she is still losing.
DS had a tonsilectomy and adenoidectomy .
We were able to keep his weight stable at 80 lbs .
At 4 '8".
So you need to ask what the risks vs benefits are:

Is there any evidence of malnutrition in her blood work?
Can you add more calories to her diet avacados , butter etc...

Is it a matter of not gaining but consuming enough calories or is she just not willing to eat enough ?

Just things to think about and discuss with your gi .
 
Anxiety is such a terrible thing to live with at any age. I assume anti-anxiety meds are off the table due to the seizure issue.

Have you considered biofeedback training? I found this VERY helpful in managing both anxiety and learning what it felt like to be physically relaxed - something I discovered I had never learned to be. As for sleep I assume you have tried all the usual remedies - guided meditation, benadryl if safe for her, melatonin (although this is controversial for CDers), bedtime routine, chamomile or other relaxing tea, back or face rubs.

My kids loved having me gently massage their face and head before bed using MLD. I also did something called the Peace massage which they found very relaxing. It's kind of complicated to explain but it basically involved using a tennis ball rolling over the arms and hands then down the back to the legs and feet then up and down the spine. I'll see if I can find the instructions. If so I'd be happy to scan them and e-mail them to you. Also ending massages with a half circle gesture with your hands like two big C's back to back over the area massaged repeated 3 times always feels like an important point of completion to me. Don't know why it just does.

I don't have any answers about the weight issue except that I understand the GI's concerns and also the problems on Jae's end of things. Does she know anyone with a Gtube that she could see it and talk to them? Don't know if that would hurt or help but I have known a couple kids with G tubes and they have had no problems with it since it is basically invisible except when being accessed.

My thoughts are with you.
 
MLP, I don't think she has any signs of malnutrition at this time except being underweight. Her bloodwork has been good. Like I said, she is doing better than ever before with eating and GI symptoms, so I think she will start gaining here soon. Out of the last 3 weeks she gained 3 lbs and lost 1, but she became much more active the two weeks prior to the loss.

Badger, we haven't really concentrated on the sleep issue before now, but the counselor is working with my oldest dd (not the Crohnie) on sleep issues and so it has brought Jae's problem to the forefront in my mind too. We have tried essential oils with a little improvement. I don't know if I am ready to commit to giving a nightly massage... :)
 
Okay. I just know that my kids can be demanding, and if I start that routine, I might regret it later.
 
{Hugs} to you Carol. :ghug:

We haven’t been in your situation re: G tubes. I understand the fine line you are walking though and the need to keep the lines of communication open. If her weight is not adversely affecting her at this point in time, both physically and psychologically, then based on what you have said I think I too would likely put the G tube aside from now.

I would hope that the GI will work with you Carol so that you can negotiate and set realistic goals. Do you think she will do that?

It is good to hear though that Jae is in a much better place than she was a year ago! I s hope the journey into positive territory continues. :)

Good luck to you both!

Dusty. xxx
 
Dusty, I sometimes wonder how much I influenced the place we are at now. When Jaedyn was first diagnosed, the GI wanted to put her right on pred and move to 6MP. I was afraid of the pred and wanted to try EEN. She didn't even bring it up. Jaedyn did well for awhile with the EEN, but the NG tube didn't work out and after a while she got to where she couldn't drink the stuff any longer. The stress of us pushing her to do it and the threat of the G-tube didn't help matters. It seems now the GI seems to be stuck on EN as being the only answer to Jaedyn's problem, but we have only tried the 6mp, and she feels that has resolved the Crohn's issue, but even though Jae is doing so well, she still struggles with appetite - especially when stressed or sick - and gaining weight. I'm hoping now that she is eating better and her stress level is improved, that the weight will follow. If not, I think we need to figure out why. I don't think a hole in her stomach is going to cure her, and according to the psychologist, it may even harm her emotionally at this point. I'm hoping that the GI will hear this and not throw up her hands in frustration with us. We've got another month for her to gain weight and continue to move forward before that appt, so I hope she does, and that the GI is willing to leave her as she is.
 
I understand where you are coming from Carol. :ghug: And hindsight is horror. :(

But to fair to you, EEN does have the same success rate as Pred and although I know what you saying about the difficulty Jae had with it, it must have been successful if when moving to 6mp as she has continued to improve. Now that I have said that do mean that doing EEN straight up is what has caused the psychological barrier now? If so then again, hindsight is a horror. :ghug:

So many with Crohn’s have a troubled relationship with food and little wonder that they do. :( I hope the psychologist is able help with those issues Carol and Jae is able to gain weight. I agree that a failure to gain weight needs to be investigated regardless of the treatment.

Where are you at with B12, Vit D, Magnesium and Zinc levels?
Sorry, but can you please refresh my memory about where Jae’s Crohn’s was located?

I know for a fact that Sarah suffers with loss of appetite and weight loss when she is stressed and/or anxious. Also any illness results in a more than normal loss of weight overall simply because she has none to spare to start with. Both of my kids have had resections and they both have issues with gaining weight, I have reached a point where I am just happy for them to maintain. (((sigh)))

Dusty. xxx
 
How tall is J? What age? What weight?

What about the rest of the family, are they on the slim side?

My healthy youngest almost 15 year old is the about the same weight.
 
Like I have said before, it sounds like physically O and S are mirror images of each other. I think her gain has been fabulous and the set back certainly could be attributed to the tonsillectomy. Even when O was in the low 90's our doc was not threatening a g-tube or NG tube or even asking for supplemental shakes. Don't get me wrong, he watches the weight but he also understands that some kids are just thin and it just happy that things keep moving. She goes every three months and the last appointment there was only a half a pound gain. He was fine with that. I would think that if she is relatively symptom free and there are no signs of malnutrition then she should be praised for doing such a great job and encouraged and the g-tube should be taken off the table for a bit. Gosh, all the fear over the tube is probably contributing to her anxiety.

Like MLP suggested, some of our tricks are: guacamole spread on sandwiches (a full 100 calories), chocolate milk (we use almond) with a tablespoon of peanut butter, chocolate protein powder and a banana zipped up as a shake, lots of olive oil, butter, nut butter on everything and anything, ice cream (yeah I know not vegan but it gets fat in to her and calcium).

I don't know how hard she is working out but it is a catch 22...building muscle yay muscle weighs more than fat yay, exercise makes you hungry yay BUT muscle burns more calories and the exercise alone burns calories...so up the calories. Also, make sure she has a post recovery workout snack to aid the muscle repair after a workout. This could be as simple as a glass of chocolate milk but should be within the first 20 minutes of exercise.

Were you small as a teen? I got so sick of everyone's remarks at how thin O is that I pulled out my high school dance uniform that I wore at 18 and had her try it on. She couldn't zip it up! And I was 2 inches taller than her....And I didn't have CD! So guess what I am trying to say is some kids are just really thin.

Maybe see a nutritionist as well who can give you some ideas.
 
I'm with everybody else on sneaking in the calories. As you know we have struggled with this for years! Jack I believe was always going to be on the thin size. His brother w/o CD is 5'2" and 104 pounds so Jack currently at 5'2" and 97 pounds I'm thrilled with. He has just started working out as he was afraid that if he worked out he would lose weight. (That whole psychological issue) The appetite has only increased after the workout (given it's only been 2 days) but I still do the peanut butter tricks (He won't eat guacamole). He gets peanut butter on crackers as a snack and loves it. So hopefully with the g-tube discussion off the table she just needs more time to gain.
 
DustyKat said:
I understand where you are coming from Carol. :ghug: And hindsight is horror. :(

Where are you at with B12, Vit D, Magnesium and Zinc levels?
Sorry, but can you please refresh my memory about where Jae’s Crohn’s was located?

I know for a fact that Sarah suffers with loss of appetite and weight loss when she is stressed and/or anxious. Also any illness results in a more than normal loss of weight overall simply because she has none to spare to start with. Both of my kids have had resections and they both have issues with gaining weight, I have reached a point where I am just happy for them to maintain. (((sigh)))

Dusty. xxx
Click to expand...

Her last vitamin and mineral levels were normal or high.
Her Crohn's is small bowel - throughout. Her GI says it isn't Crohn's any longer that is causing her problem because her last FCAL level was normal - she thinks it is IBS, but I think it is anxiety.
 
Catherine said:
How tall is J? What age? What weight?

What about the rest of the family, are they on the slim side?

My healthy youngest almost 15 year old is the about the same weight.
Click to expand...

She is about 5'4"-5'5", will be 15 years in May and weighs 90.4 lbs.
Tim and I were very thin at that age, our youngest (boy age 7) is very thin, 16 yo sister is average weight and getting pudgy; 9 yo sister is overweight (weighs more than Jae!)
 
crohnsinct said:
Like I have said before, it sounds like physically O and S are mirror images of each other. I think her gain has been fabulous and the set back certainly could be attributed to the tonsillectomy. Even when O was in the low 90's our doc was not threatening a g-tube or NG tube or even asking for supplemental shakes. Don't get me wrong, he watches the weight but he also understands that some kids are just thin and it just happy that things keep moving. She goes every three months and the last appointment there was only a half a pound gain. He was fine with that. I would think that if she is relatively symptom free and there are no signs of malnutrition then she should be praised for doing such a great job and encouraged and the g-tube should be taken off the table for a bit. Gosh, all the fear over the tube is probably contributing to her anxiety.

Like MLP suggested, some of our tricks are: guacamole spread on sandwiches (a full 100 calories), chocolate milk (we use almond) with a tablespoon of peanut butter, chocolate protein powder and a banana zipped up as a shake, lots of olive oil, butter, nut butter on everything and anything, ice cream (yeah I know not vegan but it gets fat in to her and calcium).

I don't know how hard she is working out but it is a catch 22...building muscle yay muscle weighs more than fat yay, exercise makes you hungry yay BUT muscle burns more calories and the exercise alone burns calories...so up the calories. Also, make sure she has a post recovery workout snack to aid the muscle repair after a workout. This could be as simple as a glass of chocolate milk but should be within the first 20 minutes of exercise.

Were you small as a teen? I got so sick of everyone's remarks at how thin O is that I pulled out my high school dance uniform that I wore at 18 and had her try it on. She couldn't zip it up! And I was 2 inches taller than her....And I didn't have CD! So guess what I am trying to say is some kids are just really thin.

Maybe see a nutritionist as well who can give you some ideas.
Click to expand...

Thanks for the encouragement. We've been trying to fatten her up since she was a baby, and she is sick of all those foods. She won't eat bananas or avocados or peanut butter. She likes meat and noodles and mandarin orange slices, cuties, apples (skinless), and homemade spelt bread. Fortunately she has decided to like Carnation Instant Breakfast and will drink a couple of those a day. I'm trying not to push - as she just wants to be left alone.

I was 6 feet tall and very thin at her age, but probably weighed in the 120s. When I graduated high school I was 6'2 and 148 lbs. We did see the nutritionist last year - same ideas about making food have more calories...
 
Gosh our families are so similar! My oldest is overweight and my youngest spot on average. Her dad is now overweight but very good weight as a teen and I was pathetically thin. I remember my mom trying to fatten me up. The more she tried the more I got sick of all the foods she was pushing. I did LOVE CIB though and to this day am a sucker for it. Also chocolate malts. My mom used to put a heaping spoonful of malt in with my CIB...double yummy goodness. Of course after my metabolism changed at 40 that treat isn't working for me so well:p

I think you have a handle on what is going on. Trust your instincts...you know your girl. Work on the anxiety and expose her to new and different foods and something will stick. O's new treat is pistachio nuts....that is if S can have nuts. Oh yeah and one day I was out of healthy, natural snacks and had some meal replacement bars (South Beach maybe) for my food ministry. I threw one of those at her and she liked it. So she finished the box. Those bars are only for loosing weight if you use them to replace a meal.
 
Hey all. Here's another update. She is up to 92 pounds. She has made a very successful transition back to public school (charter school). I have started doing nightly back rubs with essential oils, which really makes a difference with her getting to sleep (thanks, Patricia). She had a little wrinkle in the road after spring break when there were a lot of changes in her school, and the anxiety related to that flared up her abdominal symptoms and diarrhea, but that seems to have resolved. She did see the gastroenterologist about a month ago, and she is feeling like Jaedyn is in a good place, and she wasn't pushing for the G-tube or changes in meds. Jaedyn's appetite is much more normal now, she continues to drink Carnation twice a day in addition to her 3 meals and some snacks. Her energy level seems good too. Blood work as usual, was normal with a slightly low hemoglobin at 13 point something. She continues to grow taller and develop secondary female traits...
 
IMG_0009.jpg
 
Oh I love that picture she looks so happy and so do you mom! Glad things are going well and I hope it continues.
 
What a brilliant update and pic Carol! :):):)

I so hope the good times stick around for a very, very long time. :ghug:

:mademyday:

Dusty. xxx
 

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