My daughters story

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Hi everyone
Just an update Lucy had her NG tube
Fitted yesterday, which was quite
Traumatic for her as it took 4 of us to hold her
Down, she had majour issue with new people
And new routines ect.
Anyway we did 2 feeds over night by hand
100ml each feed,
Hopefully the pump will arrive today.
 
Thanks for the update.
Sorry to hear she had a hard time.
It took 3 to hold Grace down but that's because we didn't have 4.

How's your friend's child?
 
Lucy is having a hard time today
Her joint pains have been hurting
A lot and tummy pain.
I forgot to ask
How long does EN take to work before u
Notice a difference in symptom?
 
I just wanted to send some support your way. I hate IBd or anything else for that matter that affects what should be such a happy and carefree childhood. My son was 12 at Dx and that was so hard. I can't imagine what you, Farmwife and everyone else is going through with babies diagnosed so young. I wish I had a crystal ball so I could find out what is causing this increase in how many kids it is affecting. There has got to be an answer.

Prayers to you and your little ones!
 
MLS-We noticed a difference in our son Clark after a week. everyday he has gotten better. Improved energy, weight gain and alot less pain. He still has occasional tummy and joint pains but it has improved quite a bit. I do hope your little one starts eeling better soon.:ysmile:
 
I know it took a little bit until Izzi was feeling better with the ng...she took a bit to adjust (c/o a sore throat for a week and took a few days to get the feeding schedule dowN). HUGS for you...and thinking of your friend...how heartbreaking!!
 
:dance: I've just had a phone call from
My friend her daughter is off the
Breathing a machine :dance:
Feel like crying in relief x x
Wanted to share the good news x
 
It will take a little while to see any changes with EN. :hug: Also give her and her stomach a little time to get use to the feeds. I do hope that things start to settle for her soon, bless her. :heart:

Wonderful to hear that your friends daughter is is staring to get on the better end of things! :):):)

Dusty. xxx
 
Can anyone tell me when there kids are
Flaring how do u know its a flare and not
Infection ect meaning not a flare .
Just Lucy started having really bad tummy
And joint pain and now she has really red cheeks
I hoping she isn't starting fever
Cos in worried they will cancel scopes on
Thursday x any advise please
 
For us - DS had to get to remission first before we could tell what was. Flare kwim
Stomach pain joint pain means she is still flaring
En takes a while to work
If the feed rate is too high then she will get a stomach ache 100 ml/hr is very fast
Did they tell you to start out very slowly like 10-20 ml/ hr
For a while then work your way up .....
Hugs
 
Mlp they told me to start her at 100 ml
As she has been on this milk of 2 years
And she has been mainly only taking milk
Than eating for good 6 weeks before bit only
Taking around 300ml over 24 hour
 
drinking it orally versus tube are too completely different things.
YOu can "chug" 8 to 20 oz by mouth in a matter os seconds no issues- try that with a tube and vomiting will commence.

IF she has been drinking it WHY did they tube her???
That makes no sense - my son drank all of his orally while on EEn- you only need a tube if the child WILL NOT drink it.

I would ask the ibd nurse/gi
if you can give her the amount to drink during the day and whatever is left over tube in at night.
this would be easier on her stomach.
Just my non medical mommy opinion. ;)
 
Hope she feels better soon. I suppose it depends how bad the symptoms are before you start the EN as to how long. My son was quite mild so it didn't take long, but I would imagine if your daughter has had lots of symptoms for quite a while it would take longer to heal. Hope things go ok.
 
ok just saw your last post as to why the tube- I would still have her drink as much as possible of it.
easier ont he system
DID they tell you to use a gram scale ( found in kitchen section)- kiddos with sensitive tummies can get more upset using the packed scoop method.
Gram scale is more accurate and could stop some of her stomach pain.

Good luck
 
no advice just sending lots of hugs and support - I hope they can find out what is wrong on Thursday so she can get some help xxxx
 
Advice needed please
Lucy woke at 7 Mathis morning after a bad
Night, she was crying she had filled her nappie,
Anyway I took her down to change
I notice she didn't want to lie on her back
To put her bottom downx
I managed to change her with her screaming
After I had wiped her clean her front was burnt
Red then I turned her round and got
Huge shock her butt cheeks where burnt upto
Bottom of her back and she had huge
Water blistersat least 7 between her bum cheeks
The size of ur middle finger nail and 2 on her
Cheeks. I took her to walk I centre they gave
Another cream but the poor thing can't sit
Down and is crying a lot.
Has anyone else's children's poo burn there
Child like ACID. Does any of ur kids get blisters
Does anyone else know anything I could
Use to sooth the pain.
I really can't wait till Wednesday when they
Admit her she is really suffering and can't
Stand to see her in pain like this.
 
I feel like this isn't the same situation, but my son used to have an acid rash like that as a baby/toddler. His was milk protein intolerance and the rash was an allergic reaction. We of course changed the diet. But RESINOL was the only thing that would soothe it. I know you said she had been drinking this formula for a while. If an antihistamine like benadryl made it better, that would indicate an allergy. Otherwise it could be IBD related.

Poor girl! Hugs to both of you.
 
I tried antihistamine already , I think cos
Her diarrhea is so bad and in big amounts
This is what caused it but she has
Never had blisters before.
 
Try some Resinol anyway if you can find it. Usually have to ask the pharmacist for it. It's very soothing! I know you want another cream LOL
 
Thanks JMC will go ur in morning all
Pharmacy a are closed now its 9pm x
Do u think it could be IBD related?
I just don't want the blisters and bumto get
Infected before scopes on Thursday
Or they will cancel it again x x x
 
QueenGothel said:
My dd doesn't have a colon and she just turned 5 have you tried food modification to slow her stools down. Peanut butter on white bread, mashed potatoes, applesauce, bananas, rice, mashmallows of any kind and in anything. Rice Krispies treats are awesome. We avoid greasey foods, whole grains and raw fruits and veggies tend to make things move rather quickly. Iron supplements can also help slow her down, ask her doctor if she needs it. We use all proteins but add the slower downers with it so thing are a bit more controlled. We use psyillium powder to slow her down but this is something to discuss with the doctor bc it can stop her up too if not done right. When used as slower downer we use very little like 1/4 tsp in 1 oz of water during meals. Ignoring the directions to drink lots of water. We also avoid fluids when eating to slow things. But as I said my child's anatomy is completely different than most.

Best of luck to you both. Hang in there.
Click to expand...

My Son Loves
1/4 cup of dry curd cheese
4 to 5 rip bananna
1 tbsp of peanut butter
3 second squirt of honey
cup of ice
mix in blender
 
my little penguin said:
Hugs
^^^yeah that -- no real pain meds.
Hope they get her cleaned out and find answers soon

I know where we go they use miralax prep even on very little kids
Click to expand...

Yes, my son never had to take anything prior. He took the miralax like every hour. Jello (no red or blue), juice (clear) frozen pops made out of the juice.
He was very hungry, but did well.
 
Why is anything never simple ?
Took Lucy to doctor for her painfully
Blistered bum
He told me its starting to get infected..
.... Not what I wanted to hear .
So he gave some steroid creAm to clear
Her bum and said she needed antibiotic
She also has low grade temp.
All I can think of right now is PLEASE.
DON'T LET THESE SCOPES GET CANCELLED !
I actually cried when told me it was getting
Infected was so embarrassed.
Please keep your fingers crossed it clears
Up quick
 
Wow I'm away for awhile and look what happens.

Sorry to here all this.:(
Grace got sick before scopes I was terrified they would be canceled.:voodoo:

Hugs to you both.:hug:
 
Thanks everyone for your good wishes x
I'm so scared Lucy has to have her first dose
Of bowel prep at lower dose but I'm terrified
As of reaction that happen last time,
Then tomorrow we will be waiting for a
Call from bed manager to tell us
What time an what ward to go to.
I can't tell you how scared I am x
Is this normal?
 
Hugs to you. Yes, it is normal...nervous is my new normal! It does get easier. Just remember this is one step closer to getting things straightened out.

And don't be embarrassed about the rash getting infected. Some of these things happen so fast, you can't help that. My son's rash would be perfectly normal, then bleeding and cracked the next time I changed him!

I do think the rash could be IBD related. I read somewhere that skin cells are not so different than intestinal wall cells. When my son's Crohn's is flaring, his skin is always thinner, pale, dry, and cracked. I see that before the stomach problems.

I hope that the prep goes well and the test goes forward. You will feel so much better once you have a dx and put a plan in action!
 
I think I would stick to regular calpol, and whatever cream they give her - I can't think that anything over the counter would be any better. - Good luck tomorrow and thursday - thinking of you both xxxx
 
sorry I didn't pick up on the more recent replys so mine sounds strange!! - good luck for the next few days xx
 
Hugs to you and you kid. It is tough but soon will be over.
Update when you can. I'll be thinking of you both.
 
Thanks everyone it means a lot the messages
The plan is to wait for bed manager
To call then make our way to hospital.
So im waiting here on my nerves.
Argh I feel sick with worry
Will keep u posted x
 
Where in the hospital
Lucy just had her next lot of bowel
Prep, she is very tired and upset
She has been on clear fluids
Only today NO MIlK
I'm so worried what the effects
That are coming .
I don't know how you all do it x x
 
Thinking about you! TV or games or anything she can do to take her mind off the prep will help.

I remember last June when Ryan had the prep at the hospital. He was so tired and up almost all night. My heart goes out to you. I am sure your prep will go much better than ours. Ryan had already built up an aversion to drinking the stuff because he knew what it was going to taste like. He was stubborn and wouldn't drink! Thank goodness for the PS3 cart they brought in!

I hope everything goes well. Remember this gets you a step closer to getting a plan in place to get her better. You're almost there! And tell Lucy that too!
 
Thank you JMC
I really need those words of comfort
It's hard when my husband has to work
And can't get time off due to short staffing
They want to give Lucy two enemas
One tonight and one in morning.
Is this normal procedure?
The most I'm dreading is her going to theatre
It's really comforting to know
There are people out there for us x x
 
Just wanted to wish you lots of luck for the scopes. Andrew never had an enema, so no help there, sorry. He was so miserable before the scope, by the time he went to theatre I was just so glad that when he came out he could eat and drink again and not have to take that awful prep.
It is hard to let them go into the theatre, but the staff are always really good. I remember when Amy was going off to sleep the anaesthetist was telling her a story about walking on the beach and building sandcastles. Thought it was really sweet. At least you're nearly there, then it's done and you can get some answers.
 
Thanks sascot, I really hope we do get
Answers . I'm worried we won't get answers
An I put Lucy though this for no answers
Does that make sense?
How long does it take for scopes? I asked
The doctor an she would give me answer
Only it will take as long as it takes?
Everyone different .
Sascot ur in UK did you get pictures of
The scopes? And copy of report when
Biopsys come back .
I'm so stressing don't think gona sleep .
 
Well Grace's scope took about 35 minutes.
But our GI didn't think he find anything. :voodoo:
We were told about an hour for the procedure.
We got the pics right away. Make sure you ask for biopsy results.
That will take a week or two to get back.
We got Grace results the next day. Boy was the GI shocked!:ywow:
Even if the results are clear that doesn't matter at all.
She still has problems that you have to figure out.
Don't worry, your worry hasn't ended.:D
 
In the uk it can take a bit longer to get the biopsy results . I have a friend took 4 weeks.
Prep is hard lots of tv .
Our scope for DS took over an hour both times .
We got photos then and report later.
Good luck
 
Ok 2.20am nearly 9 hours after prep med
An nothing? Considering last time
She was in bad way.
I've mentioned to the nurses this ain't
Normal for her . They told me to
Wait till 6am then they will check her again.
Any thoughts is this ok?
What could cause this ?
 
They had Grace do some "extra doses" of a stool softener to get things moving the morning of. Remember, when she does go it will be a lot. Cover what ever she's sleeping on. We had a few hour drive the the hospital and we even cover the car seat. How is she feeling?
 
With my son's preps it took several hours both times to get things moving.

I hope things get moving soon for her and she's good and clear for the scopes. :hug:
 
She fine asleep
That what's making my worry
As no cramps or pain
No poop
I'm just wondering whats
Going on x she gone
From bad reaction last time
To nothing this time x
 
Lucy is nil by mouth now
She's had codeine for as it
Has been bad x
Still waiting to see GI doc todo
Consent and anaesthetist .
I'm very scared of her having anaesthetic .
 
Ok I don't know where to start.
Lucy had a upper scope and colonoscopy.
The GI doc came to see us after theatre list.
He said that no inflammation found or
Ulcercers. He then on to say visually
He didn't see anything abnormal.
Other than the picture he showed
He said he saw big lymph nodes in
The small bowel, colon and colon wall,
He said that you find them in bowel but he
Sounded like they shouldn't be there in the
Colon. He said it can be normal to have lymph
Nodes, but then said also may be the biopsys
Will show different.
He also said it could be caused by allergy.
I asked if it isn't from allergy then what could
It be causing it? He didn't give answer only
The biopsys will show what the naked eye
Can't see.
Anyone have information on lymth nodes?
Has any of your kids scopes showed lymth nodes
And have IBD . Really need information
I'm worried x
 
Glad the scopes are over with! No experience with lymph nodes showing, sorry. Hope you get the biopsy results soon!
 
Just a quick update
Lucy is doing better,
Still waiting on results of scopes
Two nights ago her belly was do distended
But by the morning had gone down.
Sorry I've not posted as much
On here things are getting a bit much
And I'm a bit over whelmed.
Hope your kiddos are doing good
Will catch up soon x x x
 
Has this child had a test for c. difficile at any point?

Anytime since the most recent severe bout started?

If not then that may be the explanation for the severe symptoms, particularly when you say she has belly distention.

You should take her to the emergency medical care today and tell them you are concerned she might have c. diff and that she has had 10+ bouts of diarrhea a day, belly distention and is now running a fever of 38.5.

Do not minimize her symptoms or tell them she seems better. She is not better - she is now running a fever.

C. diff can kill even healthy adults if it is the most dangerous form of it. I don't know if she's got it but it needs to be ruled out immediately. As of 2010 there is a very accurate rapid c. diff test available that provides results in less than 3 hours once it is received and processed by the lab. But many labs only run the test once a day, delaying results. If they do not have rapid results available I would want them to keep her in the hospital on the assumption she's got c. diff until they get the results back. If they do that, she should be placed in isolation as c. diff is HIGHLY contagious in a hospital setting.

If they do not immediately place her on IV fluids and run a c. diff test then somebody there should be sued.
 
Thanks dexy for link
Last night Lucy's fever spiked to 39.3
And now she complaining of tummy hurts
She won't take her feeds either x
Will see what today brings
Don't know if its a bug of her GI symptoms
But she is very pale x
 
Just abit worried Lucy's usual symptoms
Are lots of diarrhea and belly pain
Well today she vomited and hasn't
Pooped in 2 days and her belly Is
Starting to get big again x
Any thoughts
 
Are you saying these are normal symptoms for her? Normal on a daily basis including the fever, big belly, vomiting?

If not, the I really think you should take her to the emergency center at your hospital or whatever your version of that is. Today. Do not wait any longer.

Please.

These are NOT normal symptoms for a "bug".

Is she still peeing? What color is her pee? IF it is very dark she is very dehydrated and may need IV fluids.

Is she passing anything - gas?

I'm really worried for her, I hope you are able to get help for her today.
 
Sorry to hear she hasn't been feeling well. So hard to tell if something is a normal bug or usual problems flaring. :frown: Hope she starts feeling better. The only experience we have with constipation is my daughter, the doctors gave her lactulose or Movicol to help get her going.
 
Thanks guys x been a horrible few days and
Things are still not great
Been to a&e twice as her symptoms have
Got worse each day x
At the moment theses are symptoms
Fatigue
Temp
No poop( which she usually goe 4 plus times a day)
Ocassional vomitting
Tummy pain
And now pins and needles feeling in feet
Biopsys are still not back and it feels
Like a horrible dream I want to wake
From .
 
So sorry to hear.

Is she on meds now? What do they say when you take her in? Does the GI know all this?

Your poor baby. HUGS!
 
Took her in they said she wasn't
Dehydrated don't know how
Though, and they gave her pain med for
Temp, they said they couldn't do much
Till biopsy come back x
Called GI secretary she said she will let
GI doc know x
 
I hope she gets the right attention soon so this can get fixed. Poor baby and poor mama! Praying for some answers and healing!:heart::heart:
 
Ok I've been on a mission
Today as I'm sick of waiting
For these biopsys .
I called the GI secretary yet again
And I think she is sick of hearing
My voice lol
I told her that I still haven't heard anything
And was promised that we would have results
Within a week where are they?
She sounded shocked I hadn't had a call
As her reply was he hasn't called you yet?
So in my mind he had these back last week
When I called . Just feel like screaming .
I've told her if I don't get a call back ASAP
Then I will keep calling till I get answer
Like Lucy deserves instead of waiting and
Her suffering x
Sorry for going on just feel so frustrated
And feel like I'm gona expload like volcano .:frown:
 
HUGS

My Grace before EN slept for 16 hours on average. She would put herself to bed.
She still sleeps more than normal but she's at least running around when she's up now.

Keep calling!
 
Thanks farmwife
It makes u worry when they sleep so much
Lucy slept 7am till 8am when I had to
Wake her to take kids to school.
10ish came and slept again til 12.20pm
And now she wants to go bed again.
Don't u worry I'm gona keep calling till
They get sick of me x
 
Maybe she can borrow your rolling pin farmwife or Mary's vice grips. Hope you hear back today, thinking of you and Lucy
 
Sorry the shipping cost is to steep to be payed on a rolling pin.
As much as I like my simple rolling pin I have to say the french rolling pin would be the better weapon.
The tapered ends are easier to hold when your whacking someone.:ack: I heard. I don't know this for a fact! Have to go hide the shovel...I use it for.........gardening.
 
Farmwife said:
As much as I like my simple rolling pin I have to say the french rolling pin would be the better weapon.
The tapered ends are easier to hold when your whacking someone.
Click to expand...

Oh I have one of those maybe I better find it and bring it along with me to appt. tomorrow.

Mylittlesunshine -Have you heard anything yet?
 
You guessed it...... NO bloody call back
Now I'm a women on the edge x
I'm really to my limits of keeping
My cool. Hmmmm think
I might have to dig my rolling pin
Out thanks for idea farmwife
 
Mylittlesunshine said:
You guessed it...... NO bloody call back
Now I'm a women on the edge x
I'm really to my limits of keeping
My cool. Hmmmm think
I might have to dig my rolling pin
Out thanks for idea farmwife
Click to expand...



In a court of law I hold no accountabilities and or friendships!:biggrin:
 
Great.
She's not napping, which means I'm not napping.:frown:
Hubby is home for awhile, so I shall sneak away while he eats.;)

What time is it there? Here it is 1:18 pm
Have you called again?:ybiggrin:
 
ARGGGGGGGGGGG!
I can't believe they let the little ones (or anyone) suffer like this it is SO frustrating.
MLS - I am a vet and if I treated a dog how so many of our children get treated I think I would get struck off.
I hope you hear tomorrow - its not right she should be sleeping so much and combined with her other symptoms well I just hope they get a move on and sort things out.
hugs xxxx
 
MLS, I'm so sorry to hear you're being put off so much. Our ped GI calls me in the evenings because she knows I'll be home. She usually calls within 48 hours. I hope you get your answers soon, and not just more questions!
 
I just hope they get the biopsy results soon - at least then you can get some treatment for her, and try to understand what is causing all the pain/ lethargy etc.
Freddy is fairly rubbish luckely paracetamol seems to improve the pain\ clingyness\ agression fairly well but does seem to make him act like he's on speed then he crashes out for a few hours and then the whole thing starts again! Ive lost count of how many nappies ive had to change today :( just not sure if it's related to restarting dairy or just part of his normal 'cycle'.
 
Suzysu I know what it's like about the whole
Nappie counting.
Lucy was so bad in December at one point
Was going 10 plus times a day .
Do u keep a diary of nappies and stools ?
 
I used to, but I find it hard to have the time with the other kids and also the Dr(s) just think I am a looney and I think they would just assume I am some kind of obsessive compulsive mother!!
I would love to find a Dr that you could 'work with' - like you were both working together to help your child but instead it seems like you are always having to 'put your case forward' almost like you are working against them - they want you to go away and you want them to help you. I don't think it should have to be like that.
Hope you get the results tomorrow - or at least a call with some kind of action plan.
Have a good and peaceful night (fingers crossed) xxxx
 

Similar threads

C
Can't turn around a flare - advice
Replies
15
Views
3K
crohnsinct
C
T
Concerned Mom, looking for advice
Replies
3
Views
1K
Maya142
Maya142
R
(My Story) Looking for answers!
Replies
20
Views
3K
Aituk7
A
W
Bowel disease and inflammatory arthritis
Replies
2
Views
2K
whaleroad
W
V
My Novel, Pain in My 🍑
Replies
1
Views
4K
valleysangel92
valleysangel92

Latest posts

Back
Top