• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Weight percentile, being a teenager, and family stress

SupportiveMom

SupportiveMom

D is now down in weight even further. Her GI said she was at the bottom acceptable percentile for her weight but calculated she was barely there. I looked it up to find out she is at the 8th percentile. Probably with the weight loss of the last week she is probably down to 5%. I know I'm doing all I can, & starting EEN is the best thing right now but I can't help but be worried. I finally got D to start using the myIBD app to better track her bathroom trips and it is worse than I calculated. We to
D the doc 12x, she is actually going 17x a day. I suspected she was minimizing the reality because reality stinks, but I didn't realize it was that bad. It is hard to get any food in her cause it just goes right through her or up. Tuesday check in at the hospital can't come fast enough.

I'm either not sleeping or I can't seem to stay awake. I'm either up super early and can't find a nap or sleep or every time I sit down for 15 idle I fall asleep. D asked me to cuddle her and watch Netflix and within 5 minutes I fell asleep. I didn't think the stress of all this was showing and I was managing it well but this must be my body saying it is overloaded.

I thought my 14 year old was managing her sister's latest development but looking at her latest actions she is either getting out of the house away from it all or slipping in school and showing up late. This is an honor roll kid who applied to a prestigious high school program as she is an over achiever. Completely out of character. Every year we go out for my husbands birthday and we normally talk about where we are going to go. His birthday is Monday, none of us have talked about it, and this morning he said he didn't want to go out or even make a big dinner in. None of us are handling the stress well.

I can't seem to fight the feeling of failure. Tuesday will be our 4th hospital trip in just over a year and a half. I have had this feeling we are successfully managing the Crohn's if we are out of the hospital. Even knowing we are only going in for a few days I can't help the feeling of failure even though we are doing everything right.
 
Jane and Nick

Jane and Nick

Stress effects us all, not just the parents but the siblings and the patient. My husband has serious health problems but maintains it is easier for him because he is the one going through it he knows how he feels and can manage himself. We on the other hand cross all the bridges before we come to them, we second guess every action or reaction then we try and compensate for the siblings. There is no shame in visiting your GP and discussing the stress you are under, may be they can suggest a mild anxiety med that will help you during this horrible, shitty (no pun intended) time. You are SO important and you need to be well to hold the family together. Remember this too will pass and you will find a way through. Please think about putting yourself first.
Wishing you and yours lots of positive energy and a break from all of this anxiety.
Jane
Oh and never ever think of your self or where you are as a failure ! Look at the wonderful advocate you have been and are being for you lovely girl. This is a bump in the long and bumpy road and you are doing a fantastic job ! Really, you are an inspiration. Keep on keeping on.
 
my little penguin

my little penguin

Moderator
Staff member
One thing to remember is you are in survival mode right now period.
As long as basic needs are met ( food water clothing..) you may have a hard time dealing with everything else. Talking to someone either a therapist as a family is a good idea .
That way any issues can be brought to light since the non sick kids don't want to burden the parents more even if they need to.
You are not a failure. Ibd is a horrid disease period.
You are following your doctors advice and research here as much as possible.
When things are going bad I make a list of all the things I can control that I am currently doing to make things better even if they are not working that is your achievement.
As far as weight ... Your are fixing things .. EEN is the best thing .
But don't be surprised if she doesn't gain weight while on EENwithout food.
DS didn't gain. Anything on just EEN. Tess's son also didn't gain during the EEN period.
This is the healing time.
Once you keep the formula going and add food to her diet as well in eight weeks the weight typically starts to increase slowly unless pred is involved as well.
You will get there it just may not be the way you want.

For the non sick kiddo make a date night night once a week for you and her to go out and do something she wants even just walking at a park this will let her talk to you and feel part of the family again -make sure DH does this as well.

Also even if things are bad plan the birthday dinner - normal things help us all-
Even if its forced -maybe include both kids on planning something fun.
Since food may not be the highlight of things due to your oldest try to focus on doing something you all enjoy as a family not food centered - pulling photos from greats past and making a slide show even if its 4-5 photos
Ask the girls for funny memories from years past about DH to share.
It may feel forced but survival mode requires forced "normal" stuff.

Not sleeping is tough -second th gp talk.
Remember if you do not see a light at the end of the tunnel then march right down to the end and turn on your flashlight.
You are in charge of you period you can't control hardly anything in this @@@@ disease but you sometimes have to have a little hope that things will get better even if its not the path you would like to get there.
 
SupportiveMom

SupportiveMom

I hate survival mode. It strips so much out of you. We have spoken with a family therapist and went a few times. There is a lot of worth to it. Our therapist works in the hospital as well as his own practice so I will be talking with him again.

It is disappointing to hear EEN won't help her gain weight. I hope it will at least give her some energy. I was trying to push her to go to school tomorrow since she only made it 1 day last week and after tomorrow will be out the rest of the week.

I am normally very positive and am the one cheering others up. I am at a loss to find it. I will revisit the homeopathic solutions I dis as a teen myself as I really am not one to take meds of any sort. I'm going to try to get the girls to make a photo collage on photoshop. It will be something that they can do together and don't require any physical energy on D's part. Maybe doing something for someone else will get their mind off things.

Thanks for the positive words to remind me there is a lot I'm doing. Sometimes it is hard to see the forest through the trees.
 
Jane and Nick

Jane and Nick

The photo shop collage sounds great. When Colin was in the middle of chemo and radiotherapy and Nick was just diagnosed there was a special dads and sons soccer evening at school, really bad timing, we couldn't take part for obvious reasons and it knocked me for six, I was devastated and focused on what we couldn't do. Then a very wise friend said are the boys as upsett as you ? They were not, but it was my straw that broke the camels back. We had a Xbox FIFA night instead ( I still cried, in private, but they had fun).
I too am the cheer leader for the family, but I have days when I have to lay low lick my wounds and then get on with things. You too need to allow yourself time to readjust and be strong.
X
 
greypup

greypup

Location
St. Louis, MO
Sending LOADS of support.

My husband and DD were both critically ill last year and both had several trips to the ER or admissions, often at the same time. We got thru a year like that and did it one step at a time by simplifying everything we could.

My friends and extended family would help get our sons to their activities so their life was as normal as possible. I hated to ask and rely on others but it was for everyone's best. I also counted on our boys a ton at home and talked honestly with them, always reassuring them that both their sister and dad were going to be okay. I had to believe that to make them believe it.

I talked to more than one therapist :ybatty: several times a week sometimes.

While our DD was very ill, we made a plan to leave town. We took a lot of time planning and revising our trip. I'm grateful that we took our trip. It was beautiful.

Finally, because my husband has an incredible sense of humor which he fortunately has gifted our three kids with, I learned the therapeutic benefit of laughing. I cried plenty and had several break downs wherever I could find privacy, but when we were able to laugh it helped us keep hold of the normalcy we craved to have more of.
 
Tesscorm

Tesscorm

Moderator
Staff member
Totally agree with all of the above!! Especially taking some time to take care of yourself, whether it be seeing your GP or therapist! You are headed in the right direction but somethimes, it's only baby steps at the beginning... once the momentum catches, you'll see more improvements! And this applies to D plus to your own well being! :ghug:

As MLP said, S only gained a bit while on EEN. I did speak to the nutritionist and she wasn't worried as long as he wasn't losing, though. But, even if D isn't gaining pounds, she is gaining nutrition as the nutrition will be much more easily absorbed than from regular foods (even if she could keep it down!). So, don't lose faith in EEN - it will only do her good, even if the 'good' can't immediately be seen!

Lots of hugs... sometimes it's tough to stay positive but never doubt your strength! From all you've said, you've been a great advocate for D and are doing a great job! (But, do try to do something to help yourself as well!). :ghug: :ghug:
 
SupportiveMom

SupportiveMom

I am trying to find some joy in the sunshine today after the long winter. D's friends are amazing. They all came over to whisk her out of the house and to the park. Even if she can only manage 30 minutes out there with her friends it has to do something positive for her mental health ( and get her some much needed vitamin D). She had a bit of white rice she was able to keep in a little bit longer today thanks to 4 immodium and actually says she is so done with food lately not agreeing with their the EEN will get her back to a good relationship again with food. :)

I really want to make it until Tuesday morning to go to the hospital. Unless all of a sudden she has lots of blood I will stay out. There just isn't a lot they can do until they coordinate the care between her GI, the nutritionist and the surgeon to start EEN. Really hoping we can skip the need for the surgeon cause I don't want her to have to get a g tube if she can avoid it. EEN can only in the end mean positivity even if the next few days are bumpy.

I'm cleaning the house in prep before Tuesday. It keeps my body & mind busy.
 
Jmrogers4

Jmrogers4

Sending loads of hugs and support. Same here - no weight gain on EEN but he didn't really lose anymore either. The only time in the past prior to now that Jack gained weight was when he was drinking 6-8 peptide a day and eating whatever else he wanted/would eat. He was in the 1st percentile at the time so I totally get how worried that can make you.
Take care of yourself as best you can and hope the sun keeps shining.
 
imaboveitall

imaboveitall

I am surprised that many say they did not gain on enteral feeds.
See Clash's thread, her fella has gained 18lb in FOUR WEEKS!

Violet's stats:
before dx (age 10) 78lb 55in
at dx 59lb 55in (lost 19lb in seven weeks)
After four mos on formula feeds 99lb 57.5in
Six years later 158lb 64.5in

She got PEPTIDE BASED formula, 3000cals/24hr for months.
That meant 24hr on the pump at first, then 16hr, and on down as food was added back in (she was told she could eat anything she felt she wanted from the beginning, but she couldn't at first, motility too delayed). For the past few years it's been 1000-1500cals at 250cc/hr.

Her doc said many won't agree/comply to the 24hr/3000cals deal. She was too sick to argue and with bones showing and flesh hanging I wasn't about to either.
 
my little penguin

my little penguin

Moderator
Staff member
Imaboveitall --Ds gained but not until he was allowed food plus formula.
He was and is on peptamen jr.
If I remember correctly violet was always allowed to eat even in the beginning if twenty four hour feeds but that she didn't really eat food the first month but did after that.
I think that is the difference .
DS wasn't allowed any food at all but water and a few sugar cubes a week.
Once he added food in addition to formula he gained over thirty pounds .
 
Clash

Clash

C did gain but he isn't full EEN, he is only EN. He is taking 2700 calories by formula. He also eats, usually only a meal and his eyes can be bigger than his stomach at times. His EN was about weight gain though and not necessarily a flare, although he was flaring when we started.

Just wanted to send my hugs and prayers. I do hope the EEN helps D and she is able to gain some weight.
 
Last edited:
kimmidwife

kimmidwife

Just wanted to send some more hugs! It is so tough. I know those days when you just want to stay in bed and pull the blanket back over your head. I unfortunatly have to many of those as well! Hopefully the EEN really helps and they get her back on track. Thinking of you guys!
 
Sascot

Sascot

Good luck for Tuesday. Hope they can get the EN started soon. NG tube isn't too bad. After the first 2 days my son hardly noticed it.
 
SupportiveMom

SupportiveMom

I am grateful for the warm weather here yesterday and the persistence of her two guy friends to get her out of the house and over to the park to hang out with everyone for a few hours. She came back happy, but exhausted. As always her friends look out for her and being in the sunshine and with friends put her in a better mood. She was so tired from being out she napped for a bit but I'm glad she did it.

When D was first diagnosed she was on TPN for 3 weeks. Her lowest was 68 lbs at 12. Her highest has been 96, but that was on prednisone. Since she is at 83 so I know EEN will at least make her stay steady. I won't get discouraged if she doesn't actually gain 8 weeks from now when she gets EN & food. I wonder if they can up the calories to get her closer to the 50 percentile. Heck right now I would be happy with 25%.
 
Last edited:
Tesscorm

Tesscorm

Moderator
Staff member
Glad she had a chance to get out a bit with friends! S's experience with EEN and then EN was similar to MLP's boy. S had lost almost 25lbs before diagnosis, once on EEN, he gained 6 lbs right away (first week or two??) and then only another 4 lbs until the end of the 6 week EEN period. After the first week or two, he quickly went back to his high activity level (he was not as 'strong' muscle- or endurance-wise, but his 'energy output' was high - on average, 2+ hours vigorous exercise per day) so I did speak to the nutritionist about the very low weight gain and if we could add additional calories (he was on 3000 cal/day - no food, formula only). She said they only 'prescribed' 3000 cal per day and while she was not worried if he didn't gain weight, if he began to lose, the recommendation would be to reduce his activity, not add calories. But, once he added back regular food and continued on supplemental EN (1500 ca/d, 5 days/wk), he quickly gained lots more!

His approx weights have been:

Pre dx - 145 lbs
At dx - 123
6 weeks exclusive EN -133
First six weeks supplemental EN plus reg. diet - 153
After another two to three months of supplemental EN - approx. 160-165
After two years on same 1500 cal supplementation - remained steady at 168-175 lbs

S had been worried that, once he added back a regular diet but continued with an additional 1500 cal/day, he'd gain unwanted weight. Although I didn't tell him at the time, I had thought he had a valid concern but it never happened. Not sure why, but I imagine he instinctively adjusted his intake of calories to meet his needs??? If not hungry, S was never someone who was tempted by food simply because of flavour (ie seconds or treats), so while he did continue to eat three meals while on supplemental EN, his total calorie intake was probably appropriate for his activity level.

Good luck tomorrow!
 
imaboveitall

imaboveitall

The first 30-90 days she ate very little solid food, but I recall what she did eat was carbs. I remember her refusing meat and dairy for maybe...two months?

Per her doc, in his experience EEN vs EN makes no difference, but the sheer AMOUNT (he said 3000 OR MORE ) of cals per day of ABSORBABLE (this means broken down, peptide based at least or elemental) calories was the key. He told us he expected her to need a g-tube (due to his experience with usual noncompliance with NG tubes long term) and feeds for YEARS if we wanted her nutritional status maintained. Most, he said, balk at that. They'd rather have pills than formula feeds, he said, several nurses affirmed this too, to me. So it seems to me that noncompliance plays a role, amount of formula and type play roles.

I think V's success was due to amount (12 bottles per 24hr, not six or eight as I've heard of), type of formula, and length of time on feeds.
 
DustyKat

DustyKat

Super Moderator
{HUGS} to you mum. :heart:

When you are in the midst of things, as you are now, it is incredibly hard not to feel the way you do. The feelings of guilt and the wishing to take your child’s place can be overwhelming and all consuming. It can also be disheartening when you move away from places like this forum and back into the real world because a loneliness often exists, a feeling that no one really understands the feelings you are experiencing.

It is true that as the parent that often deals with the majority of our children’s issues we feel things much more acutely and a sadness descends upon us. As has been said, often our child and/or other family members see and feel things differently and with our plate already full it is but another thing we need to take into consideration and there are ways we can tackle that, as others have mentioned.

For myself, when I reflect back on things I think what drove my feelings the most was the heartbreak of my child suffering with this disease, the utter feeling of helplessness that I was unable to take it away from them and make it my own and the overwhelming feeling of grief that my child would not have a ‘normal’ life again.

What you are feeling is normal, natural and just, mum and it is those very feelings that drive us to be the best darned advocates we can possibly be for our child. :) I know it is hard to see now but things will turn around and get better hun and your lass will get back on top of things again, bless her. :heart:

Sending you MEGA loads of luck for today! I hope the NG tube stabilises things and you can then build from there. :goodluck:

Dusty. xxx
 
SupportiveMom

SupportiveMom

Thanks Dusty. You said it perfectly. :)

We are now checked in and I'm doing my best to hold back the tears today. We are right back in the room we started in with this Crohns journey and our month stay at the hospital. D is in positive spirits for now. The battle will be to keep her head there. I'll keep you posted as our journey continues here.
 
SupportiveMom

SupportiveMom

Well for the last 6 hours the attending doctor has tried to convince us to do EN orally. Finally D had to tell him it isn't going to work so just do the NG tube already! I'm not sure what the attending doctor thought he could accomplish that her GI couldn't but he gets an A for trying and an A+ for wasting our time!
 
DustyKat

DustyKat

Super Moderator
Oh no mum! Your poor lass and you! :ghug:

I hope all is finally going well now? Good luck!

Dusty. xxx
 
Clash

Clash

I hope they get the ball rolling now. It great that D advocated for herself like that. It is always good when the child is willing to speak up with the parent! How long is the admission? I hope all goes smoothly!
 
SupportiveMom

SupportiveMom

It is in! Took a little bit of wiggling, a lot of swallowing, but it is in. We went to X-ray to confirm the position. It was sitting a bit long, so they adjusted it from 54 cm to 52 cm. So proud of her!

The tube can stay in for 28 days before needing to come out & be changed. I have to come back to the hospital to get it removed/put in. I was asking about the tubes with our favorite nurse (we got her for the evening shift!!) and she said there are a couple of types of tubes, one that nurses put in, a little more thicker, but softer that you could take in & out if desired. It is normally used for long term use (like 6+ months). The other common one is what the doctors put in - it is a little more rigid, but thinner.

We are starting 'food' in the next hour or so, just waiting for it to come upstairs to paediatrics. It will be done by pump, and evidentially completely covered by OHIP, not even going to have to use insurance. (so they say for now) She says it is a bit scratchy and she doesn't want to talk much, but otherwise she is good. I am so proud of her! If things go well we could be discharged as early as Thursday. Crossing my fingers!!
 
Jmrogers4

Jmrogers4

Crossing my fingers she gets to go home Thursday and I imagine it is an odd feeling until you get used to it. Glad things seem to be going well.
 
G

Gmama

Location
Pennsylvania
You should be so proud of her! Hoping for a smooth transition to this new situation. It will be so great for you to see her overall health improving. Big hugs your way:ghug:
 
DustyKat

DustyKat

Super Moderator
So fab to hear that the NG tube is in and that your lass did so brilliantly! Well done!

Good luck for a speedy discharge! :heart:

Dusty. xxx
 
SupportiveMom

SupportiveMom

We tried 1 bag of feeding. Took an hr. She felt a little nauseated but was ok. Today we do the 8 bags and figure out how long it will take. The goal is to get a bag done in 30 mins. It may take a while to work up to that speed.

She had less bms last night but one I felt so bad she actually had an accident in her pants. She was way embarrassed. I think she is just so exhausted she couldn't wake up in time.
 
Tesscorm

Tesscorm

Moderator
Staff member
Glad it's in and I hope the nausea settles! And really hope this helps her feel better! :ghug: :ghug:
 
Mehita

Mehita

Those unexpected BM's are tough on kids this age. So embarrassing for them. I always reminded DS that it's just the disease, it's just the disease and going is better than not going. Then we'd clean up until the next one.

I hope this all calms down soon for you guys. Kudos to her for taking on the NG tube!
 
SupportiveMom

SupportiveMom

Just an update... she has had now 4 cans of 'food' through the tube. She is managing it at 45 minutes. Today we will see of she can do 1.5 cans at 1 hr. It will reduce the times needing to be hooked up. I am waiting for home care personnel to come by to explain it all along with the nutritionist who is back in today. We were hopeful today we might go home, but that is a definite no as they scheduled an ultrasound & more blood work. Since tomorrow is a holiday I am guessing I won't to take her home until Saturday to coordinate home care stay... she is getting massive headaches but I doubt that has much to do with with the IBD.

Doc is looking for anything else she may have with the crohns. Its a needle in a haystack type of thing but something else must be going on and we just can't figure it out. I think its just a guessing game.....
 
SupportiveMom

SupportiveMom

Sometimes I think they are shooting in the dark and hope they hit something. I am tired of hearing "this doesn't make sense her symptoms are like this but her crohns is healing".. Duh I know that already. If it made sense what would I be in the hospital for?
 
my little penguin

my little penguin

Moderator
Staff member
:lol:
We had one doc basically calls it "DS's disease."-less headaches that way.
We treat for crohn's and any extra stuff he has going on at the moment until a better fit presents itself.
He has seen way to many specialists .
 
Maya142

Maya142

Moderator
Staff member
Would something like Elavil (amitriptyline) to help with the diarrhea and the pain? It's used for IBS and my daughter was going to start it last year when she was having a lot of diarrhea and crampy belly pain but her fecal cal was relatively low (she was on Remicade at the time), so they said the pain and diarrhea was "functional". She ended up getting better and not needing it but it seemed like a good option.
My older daughter has taken it for pain and sleep and it helped quite a bit.
 
SupportiveMom

SupportiveMom

Elavil? I'll have to ask. Is it like questran? I know that didn't help her either, but part of it was the non compliance on her part after about a week.
 
Maya142

Maya142

Moderator
Staff member
No, it's a tricyclic anti-depressant which in small doses is used for IBS and a number of other things, including sleep and pain.
I'm going to tag DanceMom, I think it has helped her daughter.
 
D

DanceMom

Yes, my daughter has been on Elavil for a little over a month. It requires an EKG before starting the medication. I was skeptical because she'd tried Levsin, Neurontin, and Bentyl with no benefits.

Elavil has helped some so I want her to continue it for now. Prior to starting she was having diarrhea 2-4 times a day and stomach aches nearly every morning. The diarrhea stopped almost immediately but the stomach aches took several weeks to clear. Now the diarrhea has started back up again (7-9 times daily) but she isn't having the stomach aches. If a little blue pill taken once daily can help with her stomach pain I'm all for it!
 
SupportiveMom

SupportiveMom

Ok someone please calm me down stat. I was in the ultrasound with D and the technition called in the radiologist and said they were taking more pictures of the nodes in her colon. I have no idea what that means. I googled it and all that comes up is colon cancer. Please someone tell me this is not right! I'm going to be freaking until I speak to the doctor when she comes in!
 
Clash

Clash

I know at times if there is inflammation in the colon the nodes around the area will also be swollen. I'm going to tag Dusty as she I think has explained this on another thread or posted some info about it. It also seems some other kids on this forum have had swollen nodes around bowel area due to inflammation.
 
DustyKat

DustyKat

Super Moderator
Thanks Clash.

I’m sure all will be fine with the lymph nodes SupportiveMom. :ghug:

There are lymph nodes located in many areas of the body and the abdomen has more than its fair share!

It is very common when you have Crohn’s, and are flaring, to have swollen lymph nodes in the area of bowel adjacent to the inflammation.

Lymph nodes are a part of the lymphatic system which plays an important part in the immune system. The nodes trap bacteria, viruses and foreign objects and then the white cells (lymphocytes) gather there and go on the attack. So as you can imagine an inflamed bowel will send the lymph nodes into overdrive. Both of my kids had swollen lymph nodes around the terminal ileum (where their disease is located) and I think you will find loads of others here have had the same pathology. :ghug:

Remember, the GI tract is not sterile so once the bowel wall is breached by inflammation and ulceration it is an open portal to infection into a sterile environment.

Dusty. :heart:
 
kimmidwife

kimmidwife

Sorry that you had that scare SM! Also I am surprised they did an ultrasound and not an MRE. Ultrasound really does not give the best picture of the bowel. An MRE is an MRI where you drink a special liquid contrast that helps with the visualization on the MRI. Has she ever had one?
 
Twiggy930

Twiggy930

Location
Canada
SupportiveMom said:
I am tired of hearing "this doesn't make sense her symptoms are like this but her crohns is healing"..
Click to expand...
Been there! Super frustrating, actually more like devastating. My son had months and months of symptoms (mostly debilitating abdominal pain) but labs (CRP, ESR and fecal calprotectin) all came back normal. We almost tried Elavil (amitriptyline). Ended up trying a probiotic and FODMAP diet. We have had good success with both. Not sure if any of this is applicable to your daughter but thought I'd throw it out there.
 
SupportiveMom

SupportiveMom

We had an MRE a month ago. The ultrasound was done only because we were here and wanted to see if there were some changes or more active areas since the month.

Looks like she caught c diff in the hospital now. We just turned in a c diff test Wednesday (last week) and results came back negative. No blood in stool until yesterday and they did a c diff test yesterday. Her stool smell changed last night I knew this was going to come. Came back positive.. stuck in quarenteen, earliest go home because of the holiday weekend and coordination of home care is now probably Tuesday! Crap...
 
SupportiveMom

SupportiveMom

She is handling 45 minutes pretty well (1 bottle). Tomorrow I am going to get them to try the speed at 30 minutes. We are getting a night pass to go home tomorrow so I'm working out a schedule now in hopes we can spend as much time at home as possible!
 
Tesscorm

Tesscorm

Moderator
Staff member
I'm so, so sorry she/you also have to deal with c.diff. :( Glad you can go home tomorrow but, just sorry you have one more issue!

Is it possible the tests just didn't show the c.diff. last week and this has been contributing to her symptoms?
 
SupportiveMom

SupportiveMom

No I don't think so. The smell & blood are new. If she had the smell I would have thought c diff first. The attending doc says someone immune compromised can show positive results 24 hrs after being exposed. He even said it is possible she could have caught it here.
 
SupportiveMom

SupportiveMom

Today has been a learning lesson. We were excited to get an overnight pass home for tonight. We tried to adjust times to increase the most amount of time home and I think we might have rushed things because she vomited at the last feeding. We are taking this feed slower but really hope to learn her balance quickly. When her energy level returns I want her to be able to go to school and be with friends as much as possible. 6 weeks of this schedule with the quantity of feeds is a lot of time.

The only sour note of the day came from the kitchen. Not once, but twice they sent her food! It was a cruel joke to send a kid on clear fluids only pasta or cheerios. I was a nasty mamma bear on that! Our gi was NOT pleased!
 
SupportiveMom

SupportiveMom

It was so wonderful to be home on a night pass. Started the feed at 8 and because she vomited at her second to last feed yesterday we are doing 2.5 hrs between each feed to play it safe. We are going home again tonight but the rest staying in until home care is situated. Going back and forth is tiring too. Can't wait for home care to get situated!
 
SupportiveMom

SupportiveMom

Bathroom trips aren't decreasing, just the volume is decreasing. She gained back her weight she lost since being admitted + 1 lb! so very tired... I can't wait for home care to get organized. Bad timing on a long weekend. Tuesday can't come fast enough!
 
P

positivemum

Hope things are improving. when my son do EN (orally) he got headaches - he felt like as he was drinking his shakes hw didn't need water so we had to up that as the shakes were 'food' not fluids
 
SupportiveMom

SupportiveMom

New issue today... d vomited and up came her NG tube. The one day I went to work & I wasn't there! I felt so bad. She handled it well the nurses said, but she was really scared. I didn't even know it was possible. The had to pull it back into her mouth and out her nose.

The reinserted a new tube and she is a bit sore but ok. Glad if it had to happen it happened in the hospital.
 
Clash

Clash

C had the same thing happen when he had an ng tube inserted to take in the barium stuff for an MRE. It was just the two of us in a exam room outside of the MRE room and the end came out of his mouth. It really scared him and I couldn't find a tech or nurse. I thought he would never do another one after that. A year later we started the EN with the ng tube and suprisingly he never mentioned the ng tube for barium incident.

I'm so sorry it scared her and I hope the soreness eases! These kids are such troopers!
 
DustyKat

DustyKat

Super Moderator
They surely are SupportiveMom. :ghug:

It also makes me realise how much more difficult it is for most of the parents here than it is for me when having to deal with the medical side of things. Kudos to you all for your tenacity, level headedness and ability to overcome the challenges that at times seem never ending.

Dusty. :heart:
 
SupportiveMom

SupportiveMom

Crap!!!! We went hone tuesday and now we are back at the hospital... poor girl vomited up her NG tube. 2nd time this happened since it was put in a week ago tuesday... ugh
 
SupportiveMom

SupportiveMom

Not yet... we are still in emergency. D fell asleep on the stretcher. Me I'm a sitting zombie. Hope we can just get this thing in and go home!
 
SupportiveMom

SupportiveMom

We got to go home! After insertion, xray and consult we got home at 3:30. What a long night! We were in emergency quickly (40 mins we were in a room) but then we sat in the room for hours ( and slept a little) until at about midnight they put back in the tube and then it was waiting for consult, and x ray...

She only has 4 boxes yesterday and vomited after the 4 (about 2 hrs after the feed) so I know she is shy of calories from yesterday I just don't know what to make up if anything. Maybe I will just let her get back to the 5 and not worry for today.
 
Tesscorm

Tesscorm

Moderator
Staff member
Poor girl. Is she afraid to learn how to insert the tube herself? I remember reading that this could happen and warning S to pull out the tube quickly if he ever felt he was going to be sick. But, I can certainly understand how it would be scary for a young girl to face inserting the tube herself. :( Hope it doesn't happen again. :ghug:
 
SupportiveMom

SupportiveMom

She can't insert this type of tube by herself nor can I or a nurse. Only a doctor can insert it. That is ehy we have to go back to the hospital for insertion and x ray to confirm placement. I'm not sure why all this is needed. My SIL (who is a registered nurse practitioner and worked & studied in Canada but now works in Florida says even she can't do it with that type of tube.

I think the one you insert yourself is thicker tubing too but I could be wrong.
 
Tesscorm

Tesscorm

Moderator
Staff member
I wonder why she needs this specialty tube?? Can she, at least, pull it out quickly if she feels she's going to be sick? I can imagine it is quite traumatic to have vomited the tube. :( (Although, I guess, you wouldn't want her to be pulling it out as soon as she feels she 'might' be sick. :()
 
SupportiveMom

SupportiveMom

I think we might be heading in that direction farmwife. I wish she was tolerating it better. I assume the doc will tell me if we should do a g tube or j tube?
 
Farmwife

Farmwife

I don't regret Grace having one. I wish she didn't need it but it works.
Grace had a lot of stomach involvement but tolerates her g-tube. One doc said if she keeps having issues they might add j-tube also.

Grace took about one month to heal up. Now you wouldn't even notice it's there under her shirt. We went on vacation to a water park resort and no one could tell.
The only issue for us is sand. If she plays in sand I tape a gauze over the tube to keep the sand out.
 
Clash

Clash

So sorry to hear she vomited again. I know that must just add stress to the situation.

Since a doc has to place her tube and xray is used to check placement I wonder if she is not getting an NJ(naso jejunal) tube or ND(naso duodenal)tube, the NJ runs all the way into the intestines and the second while not as common runs to the start of the intestines. Both are good implementations before deciding if a more permanent tube like a Gtube or Jtube are needed.
 
greypup

greypup

Location
St. Louis, MO
M had to have NG tubes a few times. Every time the staff tried to give her the age appropriate size, she didn't tolerate it at all. She was nauseated and had significant discomfort. An otherwise very strong kid, would become completely worn down because it's supposed to be easy, right? When we finally pushed to have the smallest one put in and it made all the difference.
 
Clash

Clash

Greypup, C was the same way. The hospital used 6FR but the dme sent 8FR and he would struggle with that size. He said it made is throat uncomfortable and he had to back down on the rate because he would get nauseated. When we got the dme to switch to 6FR it made all the difference!
 
SupportiveMom

SupportiveMom

Clash, looking at the xray last night at 2 in the morning it was hard to tell. I couldn't tell if it was in her stomach or through her stomach into her intestines. It disnt just dangle in her stomach but went all the way across the stomach. I do know the emerg doctor said I was calling it the wrong thing (ng tube) but her discharge papers call it an ng tube so I'm sticking by that. I'm going to have to call her GI because I don't know if I'm confused, or its lack of sleep or what.
 
Clash

Clash

Just reading this site

http://www.feedingtubeawareness.org/different-types-of-feeding-tubes.html

I would say you are dealing with more than an ng tube. NG tubes can be placed by nurses and/or patients/parents but NJ or ND would require docs, radiology or specialized nurses.

Is her inflammation located in her stomach or does she have any other stomach issue gastritis, severe GERD etc? Those are usually the reasons that the NJ or ND tube would be opted for.

You may want to take a browse through the link I posted it has alotbof great info about the different types of tubes pros and cons. Take note that NJ tubes and ND tubes are the third ones discussed, after the NG and G tube(which of course is inserted through small surgery to tummy). Also at the bottom there are links to more in depth info and I believe they have some info on the issue of nausea.

I hope the tube stays in and she doesn't have any more vomiting.
 
SupportiveMom

SupportiveMom

No inflammation in stomach but worst part of the crohns in her esophagus is where it connects to the top of the stomach. Her small intestine has healed and shows no more signs of crohns. Her worst parts now are a part of her colon in the middle and her termial illium (and still her esophagus). I'm going to read the link. I appreciate you sending it over!
 
SupportiveMom

SupportiveMom

So a quick update... went to the GI today. D gained 10 lbs since she checked into the hospital April 15th! She gained 1/2 of an inch! Now the 10 lbs are probably completely due to prednisone but a 1/2 inch!!! She hasn't grown in 2 years! This is incredible!!!

Now here is the strange part. Looks like we will probably be stopping Humira. We are waiting for the antibody level & drug level blood tests to come back to be sure but the doc thinks there are no antibody issues with Humira, she just thinks D isn't responding to it. If the levels are low we will double up (1 needle a week), but she is doubtful.

So D isn't in remission (not even close still 12x a day), but we drop a drug? I was confused with this, but there are no other biologics approved for kids in Ontario except for trials. The plan is to stay on prednisone (booo!), add Imuran & keep Methotrexate for a few months so Imuran has some time to start working, then drop Methotrexate, or reduce it to a small amount. Still going to continue with the enemas.

Now just crossing my fingers & waiting on our appointment in August at SickKids to continue with our second opinion. I am starting to wonder if the plan is for D to try every IBD medicine. Oh... and no LDN- I tried, not approved...
 
Maya142

Maya142

Moderator
Staff member
So great to hear that she grew! Doesn't that mean that Humira/Methotrexate are doing something, just not enough? I'd be hesitant to drop something that's even working a little bit since there are so few options for kids.

My daughter stopped Humira about two years ago when she had completely stopped responding to it and then tried it again this January. She did respond to it the second time (but not as well as the first time) so perhaps if your daughter gets worse, you could try it again?

Sending hugs, I hope things turn around soon:ghug:
 
SupportiveMom

SupportiveMom

I am hesitant to drop something too but the GI thinks the results she is getting isn't from the Humira, or if it is Humira, it is so minimal it isn't worth taking. I don't think D has ever had anything work for her except prednisone, and even that is minimal.

There is another test we will probably take in a few months (I want to have a couple of negative c diff tests first) on her inflammation in her stool. Since I have to pay for it out of pocket I don't want a chance something else could skew the results. I was told if she gets c diff back in the next 6 months we are probably then a candidate for fecal transplant. I think I'd rather hope for no c diff. C diff is almost as bad as crohn's!
 
Maya142

Maya142

Moderator
Staff member
Could you wait until your second opinion to drop it?
I think there are studies in the research section that show the the combination of
Remicade + Imuran was better at inducing remission than just Remicade and just Imuran. I wonder if there are similar studies for Humira?
 
greypup

greypup

Location
St. Louis, MO
IF you have to go to a fecal transplant, and I truly hope you don't have recurring c diff., make sure you read the thread that WildBill maintains in research. There are impressive remission stories that crohn's patients are receiving w/the fecal transplants.
 
SupportiveMom

SupportiveMom

I thought about waiting the second opinion, but since that isn't until August now, I'm not sure I want her taking Humira if it shows it is in the blood stream at the right amount but showing no effects of working. I don't understand enough about the medicine adhering to the cell changing the cellular component to understand why I would want to keep/drop something. I am just going by what I can see symptom-wise.

I swear the only time we get c diff is after visiting a hospital. Otherwise it clears up when she gets it. So if we can stay away from the hospital we can stay away from c diff! I am kinda warped in my thinking of kind of wanting c diff just so she could get a fecal transplant in hopes it helps the crohn's...
 
You must log in or register to reply here.
Top