# My daughters story



## Mylittlesunshine

Hi my daughter is nearly 4 years old and has been 
Having serve diarrhea for a few years now with tummy pain
Knee pain and when she is really bad blood loss,
She was suppose to have a colonoscopy done 
On 13 dec but had to be canceled as she had
Bad reaction to the bowel prep (sodium picosulphate elixar).
We now have another date mid jan and I'm worried 
She will have another bad reaction.
At the moment her symptoms are really bad
She is having 10 plus diarrhea nappies a day 
With lots of mucus, she won't eat, tummy pain, her 
Belly is so distended and loss of weight with no emery. 
I don't know if this sounds like ulcerative colitis 
Like her GI doctor thinks it is, all I know is 
I wish it was me having this as my little sunshine needs
A break.


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## Devynnsmom

I'm sorry she is feeling so bad  
Is the colonoscopy being done at the same place as the first one? If so they will try something else for prep. Is she on any meds right now? What are you using for pain? Our GI told us to use Tylenol, but to stay away from Ibuprophen. 
I hope you get some answers soon. I'm sure you will get a lot of advice here. Good luck!


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## Sascot

Sorry to hear about your little girl.  Sounds like she is not doing so great.  Could they not just admit her to the hospital and get all the tests done asap?
Mid January seems a long time away.


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## Mylittlesunshine

Devynnsmom said:


> I'm sorry she is feeling so bad
> Is the colonoscopy being done at the same place as the first one? If so they will try something else for prep. Is she on any meds right now? What are you using for pain? Our GI told us to use Tylenol, but to stay away from Ibuprophen.
> I hope you get some answers soon. I'm sure you will get a lot of advice here. Good luck!


Hi devynnmom
Yes the scopes are being done at same hospital,
As for meds she's on 
Folic acid
Iron
Multi vit 
Calcium
Neocate
Ventolin
Clinal modulate
Renitadine
Dicylovine
The only pain relief is paracetamol


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## Suzysu

Hi, I'm so sorry you are going through this - I know how awful it is to care for a little one who is going through so much - Is there a cancellation list for the scopes? can you call the GI team every few days to ask if they can fit her in sooner? Can you check with them that they will use a different prep for her?
I hope you get soe answers and some help for you little girl soon xxxx


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## Mylittlesunshine

Thanks everyone
We where in a&e on New Year's Day she was 
Having too much pain and diarrhea, but they sent 
Her home with paracetamol and told to push fluids
And keep her on liquid, 
I called the GI today and nothing new didn't get 
A call back like promised.


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## Jmrogers4

Hope you get answers soon, it is so hard to watch them in pain and not have any answers.  Hope you can get it to get scopes done sooner.  I agree with trying to get in on a cancelled scopes.


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## Crohn's Mom

Hi MLE, and welcome 

I'm so sorry you've found a need to search us out, but we're happy to have you! :hug:

Re the bad reaction to the prep; has your GI discussed using Mirilax as a prep instead? It seems to be much easier on the little ones.

I sure hope the next prep goes easier on her, and you get some much needed answers for your baby.
Hang in there mom, and lean on us for support , and please don't hesitate to ask all the questions you need.  Nothing is too small, or big, and we will do what we can to ease your fears, or point you in the right direction.
:ghug::ghug:


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## Farmwife

So sorry to hear another one so young.
Hugs to you both.


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## my little penguin

Just wanted to send more hugs thinking of your little one


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## Devynnsmom

Ok, the paracetamol is acetaminophen. I had to google it. I would keep calling and ask to be put on the cancellation list. They can give you the prep and you would really only need a days notice. Its disgusting that they would send her home again on pain meds. I really hope you get a call back and they can get her in ASAP.


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## upsetmom

I'm sorry to hear about your little girl...:hug:
I can't believe they sent her home.
Keep ringing and hopefully they get her in sooner.


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## Sascot

I second the phoning again and again.  The only way I ever got anything done quicker was to phone repeatedly (that and a few tears :wink
If you can try the consultant/surgeon's secretary and play on her sympathies, it can go a long way to getting things done quicker.


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## Mylittlesunshine

Thank you everyone for your replys
It's been a very long night awake with
Her up crying with belly pain and 4 change
Of nappies. 
I called the secretary for her GI doctor this morning
Like I did yesterday, I was told that his secretary was 
Off and she would take the message and see what she 
Could do.... Then I called the Gp really frustrated thinking
That maybe I could get appointment or phone 
Consultation no such luck. 
At this moment I feel like crying, screaming I'm so frustrated. 
Sorry for going on font know what to do


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## upsetmom

If i were you i would take her back to the hospital...no child should have to suffer like that.....i don't know what they were thinking when they sent her home...:ghug:


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## Mylittlesunshine

I was just wondering, if your child suffers 
Diarrhea what meds do u give them to slow
Things down, my daughter can't take Imodium
It makes her vommit serverly.


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## Dexky

I'm very sorry your baby is going through all this!  I think the best advice you'll find here is from these incredibly determined mothers who have also had to fight like banshees for their children's well-being.  Good luck!  Don't take no, or silence, for an answer!


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## upsetmom

I usually give my daughter Lomotil....but i'm not quite sure if you can give it to small children.
You can only get it with a prescription.


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## Mylittlesunshine

Still no word from GI doc, but GP called he spoke
My GI secretary and she said her consultant is off
So she was gong to find the reg and either
Get her to call me or will fax prescription for
Some meds..... So it's a sit and wait again
She said it would be today but I ain't holding my breath.


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## Devynnsmom

Aww if she is in that much pain and still having diarrheah I would take her back in to emerg. Eventually they will do something. I would take her in and tell them you are not going anywhere until they reassess her. ((((hugs)))) poor sweety.


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## kimmidwife

Hi and welcome! Sorry you had to find us. I have to say I second Devynsmom. If your daughter continues on that sick she needs to be looked at. Especially one that little is at risk for dehydration. Is she urinating ok? You may want to keep an input output chart. You can google them and find one. Here is a link to one I found
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1515456/
You write down everything that comes out of her and everything she takes in. Then take it with you to the doctor or hospital so you can show them what is going on exactly.


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## Mylittlesunshine

Thanks devnnysmom,


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## Mylittlesunshine

Kimmidwife all I have had for past days is diarrhea
I've not had one nappie with just wee, so 
I can't really tell if she is passing urine or not. 
Thanks for the link I'm going to look at it now
And will print it . 
I'm so greatfull for everyone's help and advise.


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## kimmidwife

There is a little trick to see if she is passing urine. You know those mini maxi pads they have? In the USA they are called panty liners. Stick it to the lower front of her nappie and hopefully it will only pick up the urine.


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## Clash

Just wanted to send hugs and support! I agree with the other members be a squeaky wheel until you get relief and answers for your little one.


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## QueenGothel

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.


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## Mylittlesunshine

Myreinhard 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.


Hi myrrh hand
My dd isn't eating really at mo, it's has been 
A struggle to eat at all, also she is on a strict diet 
As it is, she is allergic to milk, nuts and soya
As for milk she is on a neocate instead of milk. 
How is row an doing?


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## QueenGothel

Aw poor kiddo.  Being so restricted really stinks! Rowan is dealing with a possible bowel obstruction or adhesion scarring issue stopping food passage so she is on only liquids and very soft food now.  Hoping things resolve soon we are schedule for contrast enema study tomorrow morning.  Hope we get some good information.


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## Suzysu

I'm with everyone else - take her to A&E (is there an A&E at the same hosp as your GI?) - say your not leaving till they at least sort her pain out - you shouldn't have to ask on a forum what meds she needs to slow her down that is for her so called Drs to sort out! Grrrrrrrr - makes me so cross that they can just leave one so young without the meds they need. - Hope she is better tonight xx


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## Mylittlesunshine

Thanks myreinhard
Sorry for the spelling before lol, at the moment
All she wants to have is liquid and ice lolly
An jelly when in the mood.


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## Mylittlesunshine

Suzysu she's asleep at moment but how long not sure
Will see what the night brings and take from there,
If no better tomorrow will at hospital tomorrow x x


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## Sascot

I totally sympathise, have been there and done that waiting around desperate for the phone to ring, for anyone to help!  A couple of weeks before Christmas I spent a Monday phoning round and no one was much help, so Tuesday we went to the kids hospital A&E and I refused to leave till they did something.  3 days later my daughter had her appendix out and a good look everywhere with the camera.  Sometimes it's worth showing how desperate you are. 
Good luck if you go to the hospital tomorrow.


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## Mylittlesunshine

@ sascot thank you, it is really hard to see your
Little one suffer and no one willing to do anything.


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## Mylittlesunshine

UPDATE
Last night we where up a few hours again
With same tummy pain and nappie changes.
Got a call from GI this morning and he said 
He wasn't prepared to give meds until stool  
Sample came back....arragh
Just feel like hitting my head against brick wall.
As for bowel prep for colonoscopy they want 
To admit her the day before as they only use
The med that was given the first time and they 
Want her in a controlled environment.
I'm going to see what today will bring. 
I just want to say I am so greatfull for all
Your help and support u have given me.


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## Dexky

What were the symptoms of her reaction to the prep??


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## Mylittlesunshine

Dexy serve vomitting, bleeding, couldn't walk
Dehydrated serve pains , fainted
So they want to admit her day before


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## Suzysu

ummmmmmm I am no medical expert - but that reaction to the bowel prep does not sound good - I hope it was a one off and things go better this tie round - at least if she is in the hosp they can give her fluids etc but can you ask them if it is possible for her to have something different? it sounds like there are lots of different preps availiable? xx


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## Mylittlesunshine

Suzysu I already asked yesterday if it was possible
For a different prep, they told me this prep
Is the one they use for young children as 
It is the most simple prep over 2days and the 
Child only take 5ml of sodium picosulphate each 
Time as a medicine and it has no taste so u can hide 
In juice . I am worried though x


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## Clash

I'm sorry she had a reaction the first time around, I hope it was a one off and being in the controlled enviroment will make it easier. But, just in case this time around you may want to browse through this thread and see the other preps that have been used with kids and take note of them. If the need arises you could suggest the hosp look into getting one of them for her. I hope all goes well!!!


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## Mylittlesunshine

UPDATE
A very long night at A&E with her vommitting
A lot of pain and 5 full nappies. 
Eventully after me going on they gave her 
Some codeine with seemed to help
But you guessed it they sent her home.
I'm so frustrated no one seems to care my
Daughter is suffering , she has just woke 
Up and first thing she says is mummy my tummy
Please make it go away,
We have appointment at hospital on Monday
I want to ask is there any tests, or anything I 
Should ask them to text for?
What questions do u think I should ask .
Is there any pain med that ur kids have tried 
That is good. Sorry for all questions just want to sort
Her out and sound like unknown what I'm talking
About. Any advise would be great .


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## izzi'smom

MLS our GI generally doesn't give pain meds, as a rule. Tylenol is about all. THe reasoning is that if you use pain meds for chronic pain the pain eventually becomes worse. Izz was prescribed periactin to reduce motility-it is thought that the pain is related to motility and that this will help. 
Hoping the prep goes better this time...they may be able to give her something for nausea. 
I may have missed it...when is her scope? Is your appointment to discuss the results?
Wishing you lads of luck!


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## my little penguin

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


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## Lewiss mum

hi Aw hunny i feel what ur goinf through my boy started with probs when he wae 2 he has dx at age 5 hes only just turned 6 now . lewis was given codiene for us to us at home when hes so bad i think ive gotta take him to the hospital . the weekend before xmas we rushed him to. a n e cause it didnt work hey had to give him dia. morphine he was that bad . lewis started with diarriah and we couldnt. get him outa nappies till he was 4 he suffers with constipation now thats why we use codiene so sparingly the only other thing codiene will do is firm up here pos but use it sparingly if u use it for 3 or more days they can become dependant one dose usually works for lew . its so hard seeing them in pain . ive cried . shouted at the docs one week i took him every nite and said this is how he is every niht u hqvebto do something we eventually got a scope he was dx with fistuling crohns he suffers with peri anal abscess to . just keep going back to a n e . ask for the gastro on call to come alot of the time the docs in a n e are training and they speak to the register on call u need the gastro i refuse to se anyone else now . keep pushing u will get answers .ni wish i could give more advice . r u in endland or america .xx


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## QueenGothel

MLS, so sorry he is in such pain. Unfortunately it is a symptom that cannot be cured without remission. I hope they figure it out quickly for him.  We also have a love hate with pain meds. Some meds can cause an ileus which will just give them more pain, trapped wind. It really is a horrible reality for you and your little one.  It is a tough pill to swallow that there isn't just a pill at all. :heart:

My kiddo has been through the ringer in the last year and the pain she was in by far was harder to watch than anything else.


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## Mylittlesunshine

Izzies mum thanks for ur reply, my daughters
Scopes are for the 17 th of jan but they 
Will admit her the day before.


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## Mylittlesunshine

Thanks mop, just really hard seeing ya little 
One in pain and can't do anything.


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## Mylittlesunshine

Lewis's mum I'm in the uk, 
How is ur little man ? X x


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## Mylittlesunshine

Queen gothel.... Love the name
Thanks for the advice Hun really am greatful
How is Rowans, I've been reading her story
I'm so sorry for everything she has gone though.
Your a great mum x x


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## QueenGothel

She seems fine.  Playing, starving, constantly looking for something to feed her with this new diet we started today with a drop of a hat luckily I have a stocked food cabinet.  But it is also very flawed and confusing to keep all the diets in my head separate knowing what each diet does and trying to process it all is a mind bender.  I have faith sometimes it is all I have.


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## Mylittlesunshine

I bet , I thought its hard trying feed my little one 
With diary free nut free and soya free. It's amazing how
Creative u get with food when u need to x 
Hope the new diet goes well x


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## izzi'smom

Dairy free itself was a nightmare for us, and gluten free...don't get me started! Wishing you luck on the 17th AND monday...
My 2 year old was sick with a GI bug and was screaming "make it stop, mom".  It's not something dd has ever said and it broke my heart.


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## Mylittlesunshine

Question
Does anyone have any information on distention
My littleone woke this morning so big 
She had it before it not as big as this. 
Thanks x x


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## Farmwife

I'll call in DustyKat and QueenGothel (Mary).

Mary is having this with Rowan lately. Her situation is different but maybe she'll be of help.
Hugs from Grace and I!:hug:


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## Sascot

Sorry to hear they sent you home from hospital again.  Have to say I have yet to find a pain med that really works when they are bad.  Hot water bottle seemed to have as much effect.
Did they call the on-call GI when you went to the hospital?  Might be worth phoning the GI's secretary and telling her that you ended up in hospital again. Keep on phoning!  Maybe they could get a cancellation.
No experience with distention - sorry!


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## my little penguin

Also call the on call Gi about the distention . ASAP
Given her situation it can be a big issue.


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## izzi'smom

No advice, but sending healing thoughts your way :heart:


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## QueenGothel

Really depends on the cause of the distention. Constipation, poor pelvic floor function, and gas. I unfortunately have experience all three at different times.  Toxic mega colon (TMC)is a rare thing but my DD has been tested for it a few times. There are more reasons for distention that are out of my experience. So I won't comment on those. More causes are like lactose intolerance, bowel obstruction, over eating the list goes on.

If it is trouble passing gas my which is my current issue...I think. Things can start to layer. Gas. Stool, Gas. The diet modification is low fiber, low carb, low fat, no milk. This has helped in just one day of implementation following an enema for releif. 

They treat (TMC) with antibiotic therapy usually using PO Flagyl.

Constipation is the obvious Miralax correction. Which helped we would give it all day long and keep her stools like applesauce. 

Not much you can do with pelvic floor function, the only thing I found helpful was pelvic thrust exercises. It is hard to teach a kid to do a kegel.

:ghug: sorry this is happening for it can be so scary.  The importance of bowels sounds and a soft belly are a good thing.  Don't know if you have a stethoscope to ease you mind.

Above all keep her doctors informed of any changes you see.


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## Mylittlesunshine

Hi queen gothel
Thankyo soo much for the information and
Advice I'm greatfull, it's so hard when you 
Don't know what's going on inside our
Kids body's.
Well it's been a long day here and will update
You all when we have been to the GI appointment 
Tomorrow. Hugs to all night x x


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## DustyKat

My goodness, you and your little one are certainly being put through the wringer.  

Having your daughter in hospital and under controlled conditions for the prep next time is certainly a better scenario. 

As Mary has said, distention can have many causes and none of them are a normal state. Do you track her symptoms? If not please have a look at the suggestions we have in the wiki: 

http://www.crohnsforum.com/wiki/Diary-Inclusions

It is so difficult when you have to present to the ER or even an arranged appointment and then have to try and remember all the details, and when you have a child with a history of chronic illness some of the details start to become normal to you and so you tend not to bring them up. I also found that health professionals found symptoms harder to refute or dismiss when you had it all down in black and white not to mention the truer time line it gives. 

Maybe pop in on the UK local support group. There may be others in your area to give more specific advice about hospitals and GI's. 

Good luck with the consult today, I hope more than anything you get some action and relief for your little girl, bless her. :heart: 

Dusty. xxx


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## polly13

Hi My little sunshine - so sorry your lo is having such troubles.  I dont have any experience of the symptoms she is having so I cant add anything to the advice you have been given already but just wanted to welcome you and wish you luck.  Hope you get sorted out soon


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## Mylittlesunshine

@dusty thank you for all the information 
I will try and make time tonight to look at the link


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## Mylittlesunshine

Polly13 thsnkyou for the welcome its lovely
To meet you. How is ur little polly x


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## Mylittlesunshine

Ok Update from GI appointment today
First sent for bloods
Before returning to clinic
Two hours later and we get to see GI 
He explained that he wanted to wait for 
Bloods. 
Anyway he said that stool samples came back
Negative for infection but the one that checks 
For blood came back positive
I asked where he thought the blood was coming 
From he said he wanted to wait for
Scopes. 
The bloods some of them came back he said
Inflammation markers where showing 22
I think he called it CR something can't remember.
Ok now I want to ask advise.
He gave me two option cos he she has scopes
Next week he don't want to start her on
Meds , so he asked if I would be willing to do   
EN to give her bowel rest and more fluids than she is 
Taking as she isn't eating will help with her weight, she lost 2 kg
In just over week. What do you think ? He said we 
Could do the weight and see approach untill 
Scopes. GI will call tomorrow for decision x x 
Please any help and advice sorry to keep a
Asking not sure what to do x x thanks


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## Mylittlesunshine

I forgot to ask can anyone explain the 
Benefits of EN, and has anyone had 
Reactions or unwanted symptoms. 
Thanks


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## Clash

My son hasn't utilized EN, I just wanted to send some hugs and support your way. The lab result he was referring to was probably CRP? It picks up any type of inflammation in the body. If you click on the highlighted word in my post it will give you more detailed information about it.


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## Farmwife

Hugs

I just started a thread on Toddlers and EN.
Some good info given so far.

Just to let know my Grace had normal CPR.
 So normal doesn't mean no problems.


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## Mylittlesunshine

Farmwife
How is grace coping with EN? Has she had any 
Side affects or problems. 
I still haven't come to a decision on what is best x 
Hugs to u an grace x x


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## Farmwife

Hugs:rosette2:

Here's some links

EN forum on this site 
http://www.crohnsforum.com/forumdisplay.php?f=161

DustyKat overview of EN-Read it!
http://www.crohnsforum.com/showthread.php?t=23607

My new thread on EN for toddlers
http://www.crohnsforum.com/showthread.php?t=45435

I don't know if you've read these yet? EN has NO side effects. It has the same success rate a pred to reduce inflammation for the first use. It supplies ALL nutritional needs! It worth it even if it doesn't bring her into full remission.

However, I'll have to ask....DustyKat, MLP or anyone
I don't know if starting EN BEFORE scopes would mask what they find?:shifty-t:


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## Mylittlesunshine

Thanks farmwife x how is grace doing on EN
X


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## EthanClark

MLS-
My 3 year old son started EEN at the end of December. His story is on FW's new EN for toddlers thread. He is doing great on it and has felt so much better. He does have quite a bit of distention still that I need to look into but otherwise he is great. The distention has been a symptom of his for months prior to EEN so it is not a side effect of that. I do wonder like FW if starting it before the scopes is a good idea or not. After them I would say YES do it. :thumleft:


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## upsetmom

Farmwife said:


> I don't know if starting EN BEFORE scopes would mask what they find?:shifty-t:


I was thinking the same.


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## Farmwife

Good. Thanks for asking!


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## Farmwife

upsetmom said:


> I was thinking the same.


Thanks. I'm do for a good idea! I try to have once a month!:ylol:


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## DustyKat

The scopes are next week? If so I think it would be okay to start EN now. 

Dusty. xxx


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## Mylittlesunshine

Thanks everyone for help and advice x 

@dusty that's what I was worried about
That if EN was started would it affect 
Scope results x 
Think I'm going to double check when 
GI calls if it isn't going to affect then 
I'm going a head with EN I hope give 
Some relief as my daughter is loosing 
Weight by the day and toooo many 
Nappies . X


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## Sascot

Not sure whether EN would affect the scopes, but my son did EN for 8 weeks exclusively via the NG tube.  It certainly worked for him and allowed him a good few months without any symptoms at all (he has a mild case).  I agree it's worth doing if no affect on the scopes!  Nice to know they are getting all the nutrition they need


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## Catherine

We did 3 serves of ensure with normal meals leading up to scopes.  The gi told us straight after scopes that he was sure it was Crohn's but no meds given until after MRI a week later as GI did not what healing in occur before MRI.


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## Mylittlesunshine

I've just had call fro GI, I asked about the EN 
Affecting the results if scopes, he said in his 
Opinion he thinks it won't effect the scopes.
So we are going ahead with EN, 
Got to wait to hear from dietian as my DD 
Is on neacate LCP formula not sure if they are going 
To stick with this or add another formula or change
Completely, also got to wait to hear from GI 
Nurse to see when we go in as day case to 
Have tube fitted and be tought what to do, 
As my DD had tube only when ever she was 
Admitted to hospital. 
I JUst want to say a big thank you to everyone
For the kindness u gave shown me x x


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## Mylittlesunshine

Just a quick update for bed
We go for appointment to see dietian tomorrow
To discuss what formula and plan x
Then I was told that Thursday or Friday 
We will return for tube fitted.
Lets hope we get sleep tonight x


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## Farmwife

I hope all goes well tomorrow!:hug:


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## Crohn's Mom

Good luck with the EN, I hope it brings some relief ! :hug:


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## Mylittlesunshine

Thanks everyone, I really am nervious 
About the tube being fitted.


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## Sascot

Good luck getting the tube inserted.  I hope it goes smoothly and the EN starts helping with her symptoms soon!


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## upsetmom

Good luck i hope everything goes well...:hug:


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## DustyKat

Good luck hun...:hug:...I hope all goes wonderfully well. :goodluck: 

Dusty. xxx


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## Mylittlesunshine

Thanks dusty and everyone x 
Back from the dietian appointment
My daughter got weighed again and she 
Has lost another half kilo 
She is now 11.2 kg. 
we go tomorrow morning for tube fitting
Just hope this helps. 
My daughter is not feeling so good today
She is complaining her knees hurt with tummy
Pains and D nappies.
We will be keeping her on neocate for now 
Untill she get used to the feeds.


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## Mylittlesunshine

So nervious about tomorrow and wondering
What will future bring for my daughter.


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## upsetmom

:ghug:..its only natural to be nervous. 
I use to worry a lot...now i just take things day by day


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## Farmwife

Her future will hold what you teach her my new forum friend.
If you teach her she is a chronically ill child, she'll learn to be so.
If you teach her the sky's the limit even if she has limits, 
you'll see her fly higher in her life than you ever dreamed she could.

These kids are amazing and leave a sense of awe with every accomplishments

You little one will be no different.


Hugs


----------



## Mylittlesunshine

Thanks upsetmom


----------



## Mylittlesunshine

Farmwife just to read your words and 
The tears started flooding
Thank you my new friend x 
How is grace? X  
Tell her my daughter loves princess to x


----------



## Jmrogers4

well said farmwife.  Good luck with the tube


----------



## my little penguin

Is she already drinking neocate orally?
If that is the case - neocate is an elemental formula and she wouldn't need a tube just increase the amount she drinks .


----------



## Mylittlesunshine

Mpl the problem is the volume she takes x 
She won't drink more than 300 m&s of it in 
24hr x


----------



## Mylittlesunshine

Also the want to double the concentration
Of it usually she has 1 scoop to 30ml
Now it will be 2 scoops to 30ml 
And I'm sure she won't take it orally x 
The other problem is she can't take calorie
Supplements cos of milk allergy to get 
Extra calories as she lost a lot of weight 
For her she weighs now 11.2 kg and is 3 year
8month x


----------



## izzi'smom

Oh.hon. I understand your fear but believe me , your little one will adjust. I was in your shoes not long ago...just wanted to share that it stopped izzi s weight loss and improved her symptoms v dramatically. :heart: I know it's hard mama...hang in there!


----------



## Mylittlesunshine

Thanks izzis mom it means a lot x 
I really hope it works
We have been up most of night with my 
Daughter and tummy pain, plus I couldn't 
Sleep with worry x
How's ur little man ?


----------



## Mylittlesunshine

Hi everyone
NG tube is fitted.
It's been a very hard today. 
My good friends 5 year old stopped breathing 
Today and is in ICU
It made me how precious are children
Are and never take anything for granted.
I know I've not been joined here long but 
Please her daughter and family in your prayers.
Will update on my daughter when
I'm in a better mind. 
Thanks everyone ur all the best and love u x


----------



## upsetmom

I'm glad everything went well with the tube.

I'm so sorry to hear about your friends daughter...:ghug:


----------



## Farmwife

Yes it's news like that makes me want to hug Grace a little tighter!
Your poor friend.
 :heart:They'll be in my prayers for sure.:heart:
 Sadly with everyone on here lately my list is getting longer.

I'm glad the tube went well.


----------



## Mylittlesunshine

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.


----------



## Farmwife

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?


----------



## Mylittlesunshine

Thanks farmwife
My friends daughter is still in ICU
On life support . 
No change really x


----------



## Mylittlesunshine

How's grace doing Hun x


----------



## Mylittlesunshine

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?


----------



## jmckinley

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!


----------



## EthanClark

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:


----------



## izzi'smom

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!!


----------



## Mylittlesunshine

Been up all night with Lucy crying 
With tummy pain
She couldn't even tolerate feeds over night
Hoping for a better day today x x


----------



## Mylittlesunshine

: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


----------



## DustyKat

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


----------



## Mylittlesunshine

Thanks dusty, x x


----------



## Mylittlesunshine

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


----------



## my little penguin

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


----------



## Mylittlesunshine

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


----------



## my little penguin

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.


----------



## Sascot

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.


----------



## my little penguin

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


----------



## Suzysu

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


----------



## Mylittlesunshine

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.


----------



## jmckinley

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.


----------



## Mylittlesunshine

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.


----------



## jmckinley

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


----------



## Mylittlesunshine

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


----------



## mvond5

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.


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


----------



## mvond5

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


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.


----------



## Mylittlesunshine

Thanks x Lucy woke this morning with her bum even worse
So red and burnt with more blisters
Taking her to gp later x


----------



## Suzysu

:ghug::ghug::ghug::ghug:


----------



## Mylittlesunshine

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


----------



## Tink572

Poor Lucy.  Hope it clears up quickly. :ghug:


----------



## upsetmom

I hope it clears up and good luck with the scopes....will be thinking of yous..:hug:


----------



## Farmwife

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:


----------



## Mylittlesunshine

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?


----------



## jmckinley

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!


----------



## upsetmom

Try not to worry .....:hug:


----------



## Suzysu

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


----------



## Suzysu

sorry I didn't pick up on the more recent replys so mine sounds strange!! - good luck for the next few days xx


----------



## Farmwife

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.


----------



## Mylittlesunshine

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


----------



## Mylittlesunshine

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


----------



## jmckinley

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!


----------



## Mylittlesunshine

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


----------



## Sascot

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.


----------



## Mylittlesunshine

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 .


----------



## Farmwife

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.


----------



## my little penguin

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


----------



## Mylittlesunshine

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 ?


----------



## Mylittlesunshine

Forgot to mentions that that she has had
3 lots of prep med 
I'm hoping she will be clear for the scopes
Nothing is never easy x


----------



## Farmwife

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?


----------



## Tink572

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:


----------



## Mylittlesunshine

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


----------



## Mylittlesunshine

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 .


----------



## upsetmom

Everything will be ok...:hug:


----------



## Farmwife

Thinking of you guys!


----------



## Mylittlesunshine

Where home from hospital( for now) 
Will date soon x 
Thanks to everyone


----------



## Mylittlesunshine

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


----------



## Farmwife

Just wondering how it's going?

Hugs to you both.


----------



## Suzysu

Freddy's scopes all looked normal too - any news yet? how's she doing? xx


----------



## Sascot

Glad the scopes are over with!  No experience with lymph nodes showing, sorry.  Hope you get the biopsy results soon!


----------



## my little penguin

Normal visual scope here as well - no lymph nodes info though
Hugs


----------



## Mylittlesunshine

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


----------



## Mylittlesunshine

Ok thought things where going good 
Lucy is running temp of 38.5 
How will I tell if its symptoms or 
A bug x


----------



## Patricia56

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.


----------



## mvond5

What is c diff


----------



## Dexky

http://www.crohnsforum.com/wiki/Clostridium-difficile

We've been fortunate that it's never reared its ugly head with my son but if you read very many threads on here, you'll see it mentioned often.


----------



## Mylittlesunshine

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


----------



## Jmrogers4

Hope Lucy feels better soon


----------



## Mylittlesunshine

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


----------



## Patricia56

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.


----------



## Sascot

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.


----------



## Jmrogers4

How's Lucy?  Just checking in and thinking about you


----------



## Mylittlesunshine

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 .


----------



## Farmwife

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!


----------



## Mylittlesunshine

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


----------



## Jmrogers4

Thinking of you and hope things get straightened out with Lucy poor little girl


----------



## CarolinAlaska

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:


----------



## Suzysu

Hope they get a move on and get her sorted soon - sending big hugs xxxx


----------



## Mylittlesunshine

Thanks Suzuki I hope so too 
How's freddy doing x


----------



## Mylittlesunshine

Lucy slept from 1.30pm till 4pm today
She doesn't usually nap 
And now at 7 pm back to bed .


----------



## Mylittlesunshine

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:


----------



## Farmwife

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!


----------



## Mylittlesunshine

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


----------



## Jmrogers4

Maybe she can borrow your rolling pin farmwife or Mary's vice grips.  Hope you hear back today, thinking of you and Lucy


----------



## Farmwife

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.


----------



## Jmrogers4

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.


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?


----------



## Mylittlesunshine

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

You know if it was a dog the vet wouldn't treat
It like this and keep you waiting
I'm sick of being messed around.


----------



## Mylittlesunshine

Jm... Hope your appointment goes well tomorrow x


----------



## 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




In a court of law I hold no accountabilities and or friendships!:biggrin:


----------



## Mylittlesunshine

Lol farmwife . How grace x


----------



## Farmwife

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:


----------



## Mylittlesunshine

Farmwife it's 18.35pm here x


----------



## Suzysu

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


----------



## Mylittlesunshine

Yeah join the club of frustration lol
How's freddy doing x


----------



## CarolinAlaska

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!


----------



## Suzysu

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'.


----------



## Mylittlesunshine

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 ?


----------



## Suzysu

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


----------



## kimmidwife

MLS,
I am hoping you finally heard from them how is she doing?


----------



## Suzysu

Any news? maybe 10.30 is too early for them to possibly phone you xx


----------



## Mylittlesunshine

Hi Suzysu lol too early I called them at 8.30am 
This morning still no response
I'm so sick of this wAiting game.
I'm seriously thinking of trying to find
Out how you go about getting second opinion 
At another hospital. Feel like they ain't bothered.


----------



## Mylittlesunshine

Lucy was up in the night with her hands and
Feet so cold like ice
Complaining of pins and needles again .


----------



## Mylittlesunshine

Kimmidwife didn't hear from them 
Called again at 8.30 this morning still
No response:frown:


----------



## Farmwife

Hear anything??????:biggrin:


----------



## Mylittlesunshine

Nope nothing farmwife, I'm pacing the floors
Will give till 2pm UK time then another call.


----------



## Suzysu

call them! thev'e kept you waiting long enough xx


----------



## Farmwife

I'm with Suzysu!:thumright: 

I vote for.....CALL!

But keep in mind I'm inpatient!:ytongue:


----------



## Niks

I seriously understand your frustration!!  Calling and waiting..

Has she been tested for coeliacs and had her B12 levels tested??  My daughter has had pins and needles and also more the constipation side rather than D.

After lots of harassing her IBD nurse we got her B12 levels checked and they were really low!  This can cause pins and needles.

Good luck!  really hope you hear back soon

:hug:  :goodluck:


----------



## Farmwife

OK I'm off to Grace's appointment. When I get back I hope to see the update.
 Don't GI's know that your forum friends need answers????


----------



## Mylittlesunshine

I'm very dishearted right now x I called back 
And the response I got was 
He is very busy . 
Just feel like giving up . 
Sorry


----------



## Niks

Thinking of you and your little one..  Really hope get some answers soon

:heart: :ghug:


----------



## Jmrogers4

No giving up Suzysu, keep calling and start working on getting that 2nd opinion. You need answers now.  Thinking of you.


----------



## Suzysu

Phone up your patient liason person (you should be able to find the number on your hospital website under 'complaints proceedures') Tell them your story and say that you are seriously thinking of making an official complaint about your daughters treatment - that might just get you a phone call - if it doesn't them make an official complaint - good luck xxxx


----------



## Mylittlesunshine

Ok today has been a real downer
No call again from this idiot GI.
Lucy has been complaining a lot
With her hands and feet have pins 
And needles and her feet and hands are
Stone cold, then this afternoon she sat poking
At her left cheek I asked her what was wrong
She reply its asleep I think she ment 
She had pins and needle feeling in her cheek 
Too. Just wondering what this could be . 
Plus side she has managed to tolerate 2 feeds 
Spaced out in smaller volume of 50 ml
Over for feeds .


----------



## Niks

My daughter has been exactly the same!! Has she had her B12 levels tested?

J sometimes has a numb tongue too and can bearly talk, but started in her hands and feet. Then arms and legs, even up her back. Often her face too!

We only found out about this because someone on here suggested it may be b1e and I wouldn't shut up until they checked her levels!!

Poor little thing .  Hope she feels better soon x


----------



## CarolinAlaska

Mylittlesunshine said:


> Ok today has been a real downer
> No call again from this idiot GI.
> Lucy has been complaining a lot
> With her hands and feet have pins
> And needles and her feet and hands are
> Stone cold, then this afternoon she sat poking
> At her left cheek I asked her what was wrong
> She reply its asleep I think she ment
> She had pins and needle feeling in her cheek
> Too. Just wondering what this could be .
> Plus side she has managed to tolerate 2 feeds
> Spaced out in smaller volume of 50 ml
> Over for feeds .


So, how long have you been waiting now??  How many phone calls?  Can your pediatrician try to get some answers?  Sometimes they'll come out of a room to talk to a doc.  Your ped can order the tests for B12, etc...  May be time to give your ped a visit and let him/her know what is going on, all your daughter's new sxs and try to get some answers for you...


----------



## Patricia56

It is time for action in person.

Pack up your dear child and all the things needed for her care for the day.

Take yourself down to the GI's office and sit in the waiting room until they see you.

Do not take no for an answer.

Do not leave when they tell you to go.

You sit there and clearly inform them that you have a sick child, you have been waiting X days for the results of blood tests that should have taken no more than 2 days to get and your child is getting sicker.

You are not moving until you see the doctor.

And then you settle in for the day.

I have personally never had to do this but I know two different mothers who did.

They were seen before the end of the day - actually much, much sooner in the case of the woman who's child who had regular diarrhea in his diapers and was occassionaly barfing at the same time.

If she's young enough to wear diapers/nappies, you should be prepared to find a way to change them right there in the waiting room while still being modest. If possible.

If they say your doctor isn't there today then you say that's fine you are perfectly willing to see whoever is available. 

The alternative to this is to go to the office of the chief medical officer or who ever is in charge and sit in that person's office all day. That might be your best bet - I don't know enough about how the system there works to say for sure.

All the best.


----------



## Patricia56

If you have any acquaintances or friends or friends of friends who are lawyers I would think about taking one of them with me too. They don't have to stay the day, they can just inform the staff that they are your attorney and it would be very unfortunate if legal action had to be taken to resolve the situation.


----------



## Lewiss mum

i would agree if you go to ur gp or ead they can ring and find some answers for u . do u get any letters that gets sent to your gp . we were lucky enouvh to be under a ped consultant s well as our gp she was the most fantastic docter i have ever come across. she works at our local a n e department at he weekends and we have seen her whn lew has been very poorly . u just need to find the right doc to back u .i hope u find one its hard enough looking aftr a child with crohns let alone messing about with an incompetant doc .xxx


----------



## Lewiss mum

do they not have ibd nurses there if i ws u i would go to a n e and say ur concerned about her sleepng etc . u havnt recieved any info  and worried her symptons are getting worse when i ever ring and say this to my gastro secrectary or the nurses they the doc rings i think its sothat other docters dont think hes incompetant my hubby rsng the complaints department and kicked of a week later we got a colonosopy. tell the secretary u want refering to another doc .ur well wih in ur rights to ask for a second opinion at any time hn . hate i when u have to kicknof so much to get answers ive shouted and cried at the docters when i thought  they wernt doing enough for lewis they must think im a neaurotic over protective mum lol and theyd be dead right lol i am hes my son and have crohns forever.  hope u get some anwers today hun. i.ll keep a look out today for any news.xx


----------



## Suzysu

12.30pm - I seriously hope they have phoned you xxxx


----------



## Farmwife

I hope all is well.


----------



## polly13

Mls am only catching up on Lucy's story today - I am lost for words that your GI hasn't called you back - can you go to another hospital.  My Lucy's presentation was very different to your Lucy's so I don't have any advice for you there.  I'm sure you have moved on from the bum blisters at this stage but if not my local chemist does a fantastic cream which I use on Lucy all the time ( poor little thing has had a sore bum since she was born) - she also has had a couple of episodes like you describe and in conjunction with the steroid a d antibiotic I found it great. MYbe there is a chemist near you thT does something similar.  Please push for scope results, when I was having issues with Lucy's referral to GI I rang on the hour every hour and then started popping in- they got so sick of me the did it while I waited.
I understand how you feel as I hAve been through the diagnostic process and eventhough it is 18 months since Lucy was diagnosed I still cry when I talk about the months leading up to it.  These are the hardest weeks when you don't know what is wrong with your baby - I am thinking of you and pray you will get some answers soon.  I really wish I could do something to help.  Hugs to you and Lucy


----------



## Niks

How are you and Lucy doing??


----------



## Jmrogers4

Just checking in like everyone else and hope the only reason you haven't posted is because you are in that doctors office getting answers.
Thinking about you and Lucy.


----------



## Sascot

Hope you managed to get someone to call back so they can try to help!


----------



## Mylittlesunshine

Sorry everyone I've not posted
Since last night I've been suffering 
From very high blood pressure 
Due to stress, and have had to rest. 
Lucy's pead secertry called today
Out of blue, so I explained everything 
And she says she will try and get me 
Some answers ASAP. This secertry is so 
Nice, anyway u guessed never got call from 
GI. Fingers crossed pead secertry keeps her word.


----------



## Niks

Let's hope ASAP is before the weekend!  :mad2:

Try and look after yourself too :hang:

:ghug:


----------



## CarolinAlaska

Aw, I'm so sorry this is affecting you so much.  I can totally relate and I don't have nearly the stress you do!  I hope you can find a place of peace in this storm.  I'm praying for you and your little one both!  I'm not sleeping well, and I've noticed my hair is falling out when I comb or wash it!  Stress!


----------



## Farmwife

Take care of yourself! I'm so sorry you all have to go though this.

HUGS


----------



## Mylittlesunshine

UPDATE
Got a call back from pead secetry last night
She said that GI is off till Monday
But has booked Lucy in fora MR something
Scan on Tuesday then clinic in afternoon. 
I'm just wondering what this scan is ?
She will call back later with more information .


----------



## Farmwife

Was it an MRI or an MRE?

Did she give any clues to what he's looking for?

Have you thought about a second opinion yet?

How are you both doing?

Is this enough questions yet?


----------



## Mylittlesunshine

I think she said MRE will double check later.
She told me biopsys are back 
But GI is the one who will be able to
Give results.
What is a MRE? 
What do the use this for usually? 
Now I'm wondering what came back on biopsys.


----------



## Mylittlesunshine

Took Lucy to gp this morning as she still
Complaining of pins and needles and her hands 
And feet are still stone cold. 
Gp doing blood test to check her vit levels
And a bunch of other things x


----------



## Catherine

Sarah had a mri done 5 days after the colonscopy.  It is done to check the small bowel.


----------



## Farmwife

MRE is a MRI with contrast. It can check the small bowel for abnormalities like scarring and such. I want Grace to have an MRE but her GI is saying not yet. 
The blood test is a good idea. Do you know what her sed rate has been in the past?


----------



## Mylittlesunshine

Thanks Catherine , what happends in the scan ? 
How long does it take ? 
What is contrast ?


----------



## Mylittlesunshine

Farmwife I don't know her sed rate she hasn't
Had bloods done in a long time .


----------



## polly13

It's probably an MRI or mre - Lucy has had an mre GI felt he would get better imaging from that.  They put Lucy out for hers and we had to spend a couple of hours in recovery afterwards but it was no big deal for her at all, her daddy went in with her to be with her during the anaesthetic, the sent us for coffee and she was back right As rain in about an hour.  Thinking about you- mind yourself I know how stressfull it is - I used to find ( and still do) a good cry helped ease the tension a bit.


----------



## Catherine

Sarah MRI with contrast was done as an adult patient, so i think her experience would be totally different to your little one.


----------



## Niks

Finally you have something!!!  We are waiting too today to hear if they have agreed and MRE for my daughter.  Fingers crossed it will be next week too.

Hope you get some answers with her bloods too.

:ghug:


----------



## Mylittlesunshine

Thanks niks. How is your daughter doing x 
She has been though a lot I hope u get answers x


----------



## Niks

She's not even keeping plain rice down!!!  So trying Ensure.  Went to GP this morning and picking it up this afternoon.  

IBD nurse calling this afternoon about their decision about next test (hopefully MRE) this afternoon.  Apparently they have a panel meeting this morning!  Fingers crossed!!


----------



## CarolinAlaska

J had an MRE in December.  She had to take a laxative prior then go NPO (nothing by mouth that day).  Once there she had to drink 2 containers of contrast, but she could only do one.  When they took her back they put an IV in her, which was the most traumatic part of the day.  I can't remember how long the test took, maybe an hour at most.  It seemed like forever.  This was what happened for a 13 year old.  I assume they would put the contrast in a little one by NG tube?  Sedation for the study?  The MRE was J's first test with the upper and lower endoscopies happening the next day.  Our GI ordered them together since we came to Anchorage for 3 days to have it all happen at once.  On Monday we saw the GI, Tuesday the MRE and later prep, Wednesday the scopes and home again.  The following Friday she had the video endoscopy... Oops, sorry TMI...


----------



## izzi'smom

Izz was 4 for her MRE. She was NPO the morning of...we planning on putting the contrast through her indwelling ng tube, but it came out while they were advancing it, and she promised to drink the contrast. 2 cups (maybe 16 oz each (?)), which made her rush to the bathroom. They put an IV in, injected glucagon (to slow peristalsis) scanned her, injected her with contrast, and rescanned her. 

The MRI machine is loud and this scan requires long breath holds; I would suggest practicing (I went in with her and was able to hold my breath if I timed it right.)
It is also not a huge opening...Izz was on her belly with her head facing out of the machine...some little ones may have a hard time. 
How old is she? I was told generally speaking kids dd's age "need" sedation; I was fairly confident she could handle it and there was minimal motion on her exam considering the long duration of the breath holds (there would have been breathing motion even with sedation), so I declined sedation.
An MRE examines the small bowel in detail without the radiation exposure from CT/radiographic barium studies. The small bowel isn't visualized completely during scopes; it can only be visualized during capsule endoscopies, CT, MRI/E or small bowel x ray. 
Best of luck XX


----------



## Mylittlesunshine

Update everything for Lucy's scan will have 
To be cancelled 
As I'm in hospital my husband came home
Friday to find me collapsed in the kitchen
My blood pressure is very high and 
My heart isn't beating properly(fast )
I'm awaiting heart scan . 
Thank you so much for being such lovely friends


----------



## upsetmom

OMG i'm so sorry ....:hug::hug::hug:

I hope everything's ok and you start feeling better soon.


----------



## Sascot

Very sorry to hear that.  Hope you feel better soon!


----------



## CarolinAlaska

That is terrible.  I hope you get the care you need.  It just goes to show us parents that we have to take care of us, so we can take care of our dear children.


----------



## Mylittlesunshine

Thankyou I really hate being apart from my 
Kids especially Lucy as my husband 
Isn't used to doing her feeds ect


----------



## Farmwife

Get rest!:heart:
:heart:How long will you be in there?
Let the hubby worry about your girl.:heart:


----------



## kimmidwife

Sending you healing thoughts! I know it is hard but you need to take care of yourself! I am sure your husband will do fine. They are always surprising us with how much they really know and can do without our help!


----------



## Mylittlesunshine

I don't know how long in going to be in
I have to go for a heart scan tomorrow
And I'm still on a heart monitor to keep
Close monitor on my heart rhythm 
My blood pressure still high. 
Hope will know more tomorrow.


----------



## Jmrogers4

Please take care MLS, your hubby will be fine. Thinking and praying for you.


----------



## polly13

Hope you are doing better my little sunshine


----------



## Mylittlesunshine

Thanks everyone
I had my heart scan results back
I have a heart condition called
Cardiomyopathy which is my 
Heart is enlarged and isn't working properly.
I've got wait to see heart speaicalist they 
Referred me as urgent. 
Thanks everyone for asking we are still
In shock x


----------



## CarolinAlaska

Thanks for the update, MLS.  I'm sorry that it seems to be something serious, but glad that they caught it now before something worse happened.  I am praying that you find the right fix for you so you can get back to your family soon!


----------



## kimmidwife

Mls,
I am glad you have an answer as carolin said I am sorry it seems something serious but hopefully now they can treat it and you will improve. I will be thinking of you and keeping you in my prayers.


----------



## Sascot

Sorry to hear about that.  Hopefully they will see you soon and work out some treatment to get you feeling better.


----------



## Jmrogers4

Hope they get you taken care of and feeling better soon, sorry you are having to go through this.


----------



## Suzysu

OMG - Ive been away for a few days so only just checking in now - sending you get well soon wishes - as if you haven't enough to be worried about - I hope they get you sorted and home asap xxxx


----------



## Farmwife

I'm so sorry you have to deal with all this.
Take care of yourself!

HUGS


----------



## Lewiss mum

aw hunny u really have been through the mill havnt u . take time for u and make sure u rest . i was poorly last year nothibg like what ur going throuh i dislocated my knee and had my appendix out my hubby had to take over lewis care he did a fantastic job amd he said he actually felt like he was helping more as i tended to do everythibg cause thats what us mums do lol. ur hubby wil cope he.ll probably realy suprise u steven even has tips for me he.ll say go amd get me 8ml of paracetamol and a buscopan emma we.ll try that first . try not to worry about your daughter everything will work out fine . sending big hugs to u .xxx


----------



## Mylittlesunshine

Thanks everyone
I've been moved to a heart ward now
Still having test done to see what 
Type of cardiomyopathy I have
Which will tell them what caused it. 
Lucy is doing ok still waiting on biopsys
And she is missing me badly. 
I'm do depressed at the moment and 
Feeling really low and scared that it 
Could happen again. 
I'm just so glad my husband had took 
Lucy out with him when I collapsed
Because I was out for about an hour.


----------



## Jmrogers4

I really hope you get answers for yourself and for Lucy soon.  I've been thinking about you both


----------



## upsetmom

Thinking of you....:hug::hug::hug:


----------



## Twosons

I'm so very sorry for what you are going through. :hug:


----------



## CarolinAlaska

I'm glad they found the problem quickly and also glad that you didn't die when you collapsed...  How scary for your dear husband.  I'm glad you are in good hands.  Get the rest you need and try to find 10 good things to be thankful for each morning when you wake up to help ward off that sneaky depression that is trying to take root... :hug: :kiss:


----------



## Mylittlesunshine

Hi everyone
Just another update 
10 days today and still on the 
Heart ward,
Now I'm having test for checking
My kidneys as the heart condition 
That have my have been caused
By a kidney condition. 
I'm getting very fed up now
My blood pressure is still very high
And feel I'm not much further
Than I came in 10 days ago. 
Sorry for the moan x 
How are you all x


----------



## Jmrogers4

Thanks for giving us an update we have all been thinking and praying for you.


----------



## Mylittlesunshine

Thank you it means a lot to have 
Good friends like u all. 
I hope ur kids are doing well x


----------



## CarolinAlaska

MLS, I'm so sorry you aren't making progress.  Are you seeing a cardiologist or just an internist?


----------



## Mylittlesunshine

Carolin I'm seeing a cardiologist


----------



## CarolinAlaska

Good.  Sometimes it isn't straightforward and just takes time.  I hope that you get good answers soon.


----------



## upsetmom

How are you feeling MLS .....and how's your little girl.


----------



## Sascot

Sorry to hear you are still in the hospital.  Hope they get some answers soon so you can get home. :getwell:


----------



## Suzysu

I hope they get you on some meds and out of there asap - I really feel for you and am keeping my fingers crossed that you will be on the road to recovery soon xxxx


----------



## Mylittlesunshine

Hi everyone 
Thank you so much for the lovely messages
I'm still in hospital after two long weeks.
One of the symptoms I had was a enlarged 
Right eye and after some tests I've lost 
A quarter of my vision in it. 
There not sure if its tempory or not.


----------



## Farmwife

Thanks for the update.
Did you ever find out the biopsy result for your kid?
I hope they were clear. You have enough to deal with.
Keep us posted.


----------



## Mylittlesunshine

Update on Lucy
Lucy is doing well she is having
Approx 4 feeds a day at the moment
It's enough. 
I've got a telephone appointment booked
For Monday morning to discuss bioposys results.
So will let you all know.


----------



## Farmwife

That's great.
I'm so happy to hear good news.
Has your hubby been able to bring the kid(s) to see you?


----------



## Mylittlesunshine

Yeah farm wife hubby tries to bring them 
In for an hour or so each day
It's not them same though. 
How's grace doing ?


----------



## Kimberly27

Dear Mylittlesunshine,

I know you have longer relationships with the people who have been posting on your thread, but I'm sure I speak for a lot of us (newbies and others) who have been following your story as well as your daughter's.  We are all routing for both of you- good thoughts, prayers, positive energy, etc.  I just wanted to point out that you are in many people's thoughts and prayers, including mine.  I lit two candle: one for you, and one for your "sunshine".

Hugs.

Kimberly


----------



## xmdmom

I've been following your story and am sending healing thoughts to you and your daughter.

MylittleSunshine, do they doctors understand what caused your cardiomyopathy? (If not, did they rule out hyperthyroidism? It can cause cardiomyopathy, elevated bp, fast heart rate and eye or eyes that appear enlarged, and sometimes vision loss.)


----------



## Mylittlesunshine

Xmdmom I haven't heard them mention it
Will look into that thank you for mentioning 
It will let you know x


----------



## CarolinAlaska

MLS, I am sorry you are still in hospital.  The eye thing sounds terrible and scary.  You're in my thoughts and prayers.


----------



## Jmrogers4

Thinking and praying for you still.  You and Lucy could sure use some good news.


----------



## Mylittlesunshine

Another update 
I've seen the eye speaicalist yesterday 
And have been told ive lost a quarter
Of my vision in the right . 
I'm waiting for him to let me know 
What the outcome will be . 
I've had today a MRI brain scan which 
I needed sedation for depending if 
This shows anthing will depend if I 
Get to go home by weekend. 
It's been along 3weeks .


----------



## upsetmom

Thanks for the update.


----------



## Kimberly27

Sending good thoughts your way.  

How's Lucy?  Did you finally get some answers?

Kimberly


----------



## Jmrogers4

Thank you for the update.  Sending positive and healing thoughts and prayers your way.


----------



## Mylittlesunshine

Hi everyone 
Yes biopsy results are here finally
Diagnoised as crohns officially
Was told she had inflammation 
In theTI, rectum, colon and stomach
Also she has lymphnode hyperplasia 
At the moment GI is happy to 
Leave her with EN treatment until 
I'm out of hospital, I still have many 
Questions and and want more details
As the conversation was short. 
Will try and start a new thread soon for
Lucy. 
At the moment she is doing ok the EN
Seems to be controlling symptoms
But she still hasn't put weight I think. 
I'm still trying to take this all in feels 
Abit much to handle at the moment
And I'm scared for what the future holds 
For her x


----------



## Sascot

Sorry to hear about the Crohn's diagnosis, but at least they now know what is happening and can start giving the right treatment.  My son did very well on only EN for a while, so at least you can think through all your questions before deciding on a maintenance med.  I hope you will be able to leave the hospital soon - how are you feeling?


----------



## Mylittlesunshine

Sascot I'm not feeling to bad some days 
Are better than others I just take each day
As it comes , I'm just finding it hard to
Sink in that I've got a serious heart condition 
That is going to affect the rest of my life.


----------



## upsetmom

I'm sorry about your daughter 
Take care of yourself and try not to stress...:hug:


----------



## Jmrogers4

Sorry about the dx's but at least you have an answer and can move forward making a plan.  Take care of yourself.


----------



## CarolinAlaska

MLS, sorry for so much bad news at once.  If you are anything like me, though, at least some diagnosis is better than the worries about what it could be.  Now you can face it for what it is.  I pray you both find healing.


----------



## Mylittlesunshine

Today I saw the eye speaicalist 
And have been diagnoised with 
Keracotonus disease of the right 
Eye, this can not be cured the 
Only is they can prolong it from progressing
It's where the cornier goes goes a cone she
And thiner as it progresses which scares me
As I could loose my sight in that eye or
Have to have a cornier transplant . 
It feels like I'm a walking time bomb 
Ready to go off, I can't help wondering 
What other illness my body has been hiding 
Because in 3 weeks a I found I have 2 
Diseases which has majour effects. 
Everything feels like its breaking apart
And I just feel like crying


----------



## Clash

MLS, I'm so sorry that you are having to deal with so much right now. I want to send my support and hugs as well as prayers your way. We are all here for you whenever you need support. If you feel like crying then I say let it out. And we are always here.


----------



## Farmwife

Hugs, hugs, hugs, hugs, hugs!!!!!!!!!!!!!!!!!!!!!!!!!!


----------



## my little penguin

Hugs a lot to take in.
Just breathe and realize sometimes things are just bad.
But we are here and things will go on .
Today get a trashy novel and have a good cry with the cabana boy serving you drinks.
Tomorrow you can put back on your big girl pants .


----------



## Kimberly27

Even more hugs!

Kimberly


----------



## CarolinAlaska

I know it must be a shock.  I'm sending my love and care too.


----------



## kimmidwife

Sending more hugs and more hugs! We are all here thinking and praying for both you and Lucy. Just take it day by day right now. It is hard when so much comes at you at once but at least you have answers to start to look for solutions. Keeping you in my thoughts and prayers!


----------



## Jmrogers4

Adding my ((Hugs)).  It is a lot to take in but taking it day by day or even hour by hour if need be, come on here and visit for a laugh, a cry, a vent, whatever you need we'll be here virtually holding your hand.  Take care


----------



## Sascot

Sorry to hear about that!  Sending lots of hugs too!


----------



## Suzysu

:ghug::ghug::ghug::ghug:
So sorry that you and your family are going through so much xxxx


----------



## CarolinAlaska

Mylittlesunshine said:


> Today I saw the eye speaicalist
> And have been diagnoised with
> Keracotonus disease of the right
> Eye, this can not be cured the
> Only is they can prolong it from progressing
> It's where the cornier goes goes a cone she
> And thiner as it progresses which scares me
> As I could loose my sight in that eye or
> Have to have a cornier transplant .
> It feels like I'm a walking time bomb
> Ready to go off, I can't help wondering
> What other illness my body has been hiding
> Because in 3 weeks a I found I have 2
> Diseases which has majour effects.
> Everything feels like its breaking apart
> And I just feel like crying &#55357;&#56877;


I was just reading an article yesteday that was about how people can get cardiomyopathy caused by stress.  I thought of you.  I hope you can find a therapy that helps you deal with the stress so you can be healthy to help your daughter and so you can get better.  I know how it is when you are in the thick of it - it plays a big toll on us all!


----------



## Mylittlesunshine

Thanks everyone for your lovely thoughts
And wishes. 
I'm hoping to come home at end of this 4 th 
Week. 
I'm so scared and worried that it will happen
Again. Been feeling really low and can't stop
Crying . 
Sorry


----------



## Kimberly27

Giant hug.

Kimberly


----------



## CarolinAlaska

Mylittlesunshine said:


> Thanks everyone for your lovely thoughts
> And wishes.
> I'm hoping to come home at end of this 4 th
> Week.
> I'm so scared and worried that it will happen
> Again. Been feeling really low and can't stop
> Crying .
> Sorry


Sweetheart, are you taking anything for anxiety and depression?  You may consider asking your doctor about it if you can't come to a place of peace in your heart while you are under all this stress. :heart::heart::heart: <<<HUG>>>


----------



## Mylittlesunshine

I've been told its normal to be upset and scared ect
And they won't give me anything 
As all the long list of medication 
That I'm on is not good with depression tablets
Also my blood pressure is far to high
198/145 average . 
The thing that scares me is not knowing 
If I will collapse again and if the kids are 
Left alone with me if it happens. 
I guess it's going to take sometime to get 
Use to it


----------



## Kimberly27

Since you can't take anxiety or depression medications, what about non-medication options like mediation or hypnosis CD's, counseling, or massage?  Is there a support group at the hospital for people with similar conditions?  Perhaps there is one on-line?

How's Lucy?  

Hugs.

Kimberly


----------



## CarolinAlaska

Seriously, they are going to send you home with a diastolic BP of 145?  Have they checked you for pheochromocytoma?


----------



## Mylittlesunshine

Hi carolin yes I asked about that and 
Was told that the two 24 he urine 
Collection test where to test for that
But take few weeks to come back 
As it is a speaicalise test. 
Thanks for mentioning it x


----------



## CarolinAlaska

How're you doing?  Is your diastolic BP still so high?  Are you home now?


----------



## Mylittlesunshine

Hi everyone
I just want to say a huge thank you 
To all my dear friends for there support
And we'll wishes, if I didn't have you guys
I don't think I would of made it though
This last month. 
Anyway I finally got home and have to 
Take a long list of meds and have regular
Check up with gp and hospitals 
Heart failure clinic . 
Not all my test have come back but I
Do know for sure I have dilated cardiomyopathy
Which made me collapse that day ad my heart
Skipped beats. 
Will keep u all updated x x.


----------



## xmdmom

I hope you are feeling a little better and will continue to improve.  Some causes of dilated cardiomyopathy are reversible.  Hoping that's the case for you.


----------



## Jmrogers4

Welcome home! Glad you are back home


----------



## CarolinAlaska

I am glad you are home.  I hope it is a good thing and you have lots of support around you and your family, and I hope you are completely healthy soon!


----------



## Sascot

Glad you made it home.  Hope the meds keep it under control. Just wondering - when my mom was being released from hospital quite ill, they recommended her getting a medic alarm button installed.  Basically you have an emergency buzzer that you can wear round your neck and one for the house which you can press if you collapse and a trained first aider will be there asap and they can get in touch with an ambulance if needed.  Don't know if you have that where you live, but might be worth looking into.  Then both you and the kids have something to press if needed.


----------



## Mylittlesunshine

Sascot thanks for that information
Where would I find details of that? 
Is there any certain company's that 
Do it? Any idea of the price?
Any info would be great


----------



## Sascot

Not really sure as I think it varies between areas.  Our emergency response is called MECS.  My mom was quoted £3 a week, but she is a pensioner, so it would probably be more than that.  Maybe if you asked your local hospital and/or local council?  At the hospital I think it was the occupational therapist who arranged for it.


----------



## Mylittlesunshine

Hi everyone 
Thought I'd update you all on Lucy
Her EN is going ok she hasn't lost 
Any weight but hasn't gained either.
She has appointment next week 
For bloods and talk about meds I think
He wants to start her on pred? 
Any experience and advise would be great.
If I decide not to go ahead with pred
What other maintenance meds are usually 
Used?


----------



## Mylittlesunshine

Ok my update 
This hasn't been a good two weeks ended up 
Back hospital twice. 
Last weekend was the worst I collapsed
Again with my heart very fast beating
Pain in chest was rushed to hospital resus
It's really scary wish everything will 
Go back to normal x x


----------



## Clash

Most of the maintenance meds take some time before they are effective, that is why EN or Pred is used to induce remission, the maintenance meds are started while still on EN or tapering pred so when you end EN or taper off the pred the maintenance med has had time to reach full efficacy.

So sorry to hear you are still having trouble. I hope they are able to get things under control for you and your daughter quickly!! HUGS!!


----------



## Farmwife

Oh, so sorry to hear that. Do you have help at home?
Hugs to you both.


----------



## Sascot

Sorry to hear you aren't feeling well still.  Not sure about maintenance meds, seems to vary.  Our GI starts with Aza, then 6mp, then Methotrexate, depending how the kids respond.  Hope they manage to get you onto a med that makes you feel better!


----------



## kimmidwife

Sending hugs. I hope you are feeling better and the medication is starting to work.


----------



## CarolinAlaska

Mylittlesunshine said:


> Hi everyone
> Thought I'd update you all on Lucy
> Her EN is going ok she hasn't lost
> Any weight but hasn't gained either.
> She has appointment next week
> For bloods and talk about meds I think
> He wants to start her on pred?
> Any experience and advise would be great.
> If I decide not to go ahead with pred
> What other maintenance meds are usually
> Used?


How much does Lucy weigh and how much EN do they give her every day?  Is the able to eat with it?  Is she still having symptoms other than not gaining weight?

Like Lucy, I think Jae may end up on pred next week since she is still having some belly aches and hasn't achieved remission by now (week 5).  I think we'll be discussing starting 6MP as well for remission.


----------



## CarolinAlaska

Mylittlesunshine said:


> Ok my update
> This hasn't been a good two weeks ended up
> Back hospital twice.
> Last weekend was the worst I collapsed
> Again with my heart very fast beating
> Pain in chest was rushed to hospital resus
> It's really scary wish everything will
> Go back to normal x x


I'm sorry to hear that you are still suffering with your own health.  Are you back home now?  I will pray that they can find a way to stabilize you better.


----------



## Mylittlesunshine

Hi everyone 
just a bit of news i wanted to share with you all
Lucy went for poop on potty for the first time:dance::dance::dance:
i was so proud of her, as you all know she is still in nappies,
hope it carrys on


----------



## Kimberly27

Yeah!!  Whoo-hoo!

Kimberly


----------



## CarolinAlaska

Congratulations to both of you!  I hope it becomes a habit soon!


----------



## Mylittlesunshine

Hope so to carolin.
I'm a bit nervious as I've got my 
First heart failure clinic tomorrow 
And not sure what to expect.


----------



## CarolinAlaska

I'll say a prayer right now that it will go well and provide a good solution to your cardiac needs and bring you peace and health.


----------



## Mylittlesunshine

Thanks carolin it's been really hard to 
Get used to and not being able to 
Do things you are used to doing . 
The worst is being tired all the time and 
Out of breath. 
It made me cry today when the kids gave
Me Mother's Day card found it really emotional.
All prayers welcome Hun thank you


----------



## Sascot

Hope the clinic goes well.  That was great she managed to go on the potty - what a star!


----------



## Farmwife

Hugs
Let us know how all goes.


----------



## upsetmom

Hi MLS
How are you feeling? Did you go to the clinic?


----------



## polly13

Well done Lucy - good for you. Hope your clinic appointment went well mls


----------



## Mylittlesunshine

Hi everyone
I went the heart failure clinc
Things didn't go as well. 
I've had to have heart monitor fitted for
24 he then got to take that back to have 
A blood pressure monitor fitted for 24hr
The heart failure nurse fiited me in for emergency 
Appointment to see heart doctor Friday
As she thinks I might have anarythmia which 
Is making my heart beat fast, I'm still shocked 
As this is with the cardiomyopathy aswell. 
Sorry for not updating earlier x


----------



## Mylittlesunshine

Sascot thanks for the information on 
The alarm I found a local company
Who don't charge for the alarm all
You pay is £2.99 per week for the service.
I'm hoping to have the alarm fitted next 
Monday .


----------



## Sascot

Glad you managed to find an alarm company.  Helps with a bit of peace of mind. Sorry your appointment didn't go well.  Hopefully the heart specialist will be able to come up with a good treatment plan!


----------



## kimmidwife

Glad you found that alarm company! Hopefully they figure out things fast and get you onto a good treatment plan. I am sending prayers your way!


----------



## Mylittlesunshine

Thanks everyone don't know what I 
Would if done without you guys x 
Lucy goes to see the GI on Thursday 
To discuss treatment plans and meds and 
Results x


----------



## Mylittlesunshine

A quick question Lucy went poop today
And in the poop was yellow/orange/ pinky red
Mucous. Has anyone else's kid had this? 
Is this normal. She's had mucous before but not
This colour. Any ideas or advice greatful x


----------



## Farmwife

Mucus can mean inflammation in the track. Grace has it also. Call the GI. Now you know what she has they will be able to answer right away. Let us know how it goes.


----------



## Mylittlesunshine

That's what I thought fw, we have appointment
With GI tomorrow. Will see what he says


----------



## Farmwife

If you think of it, take a pic.

You should ask if they want samples if things like that happen out of the ordinary or would a picture do?


----------



## Mylittlesunshine

I've already took pic on my iPhone
Always do when I need to show doc something.
Find it best way x 
Thanks FW how's grace doing ?


----------



## Sascot

Wouldn't people be shocked if they ever got hold of your phone and saw the pictures!


----------



## Jmrogers4

They might think we are some kind of weird perverts


----------



## Mylittlesunshine

Lol you guys make me laugh, 
Good job I keep the in a locked file lol


----------



## CarolinAlaska

How did your GI appt for Lucy go, MLS?  What did he/she say about the poop?


----------



## Jmrogers4

^^^ Second that.


----------



## Mylittlesunshine

Hi everyone 
Sorry for not updating sooner 
Ok will start with Lucy. 
Went to GI appointment on Thursday
Showed him pic of mucus and he said 
It's most likely inflammation so he took
Bloods. He want to keep her on EN
And start he on pred which I'm a bit 
Concerned about and the dose seems abit high
For a 3 year old or maybe just me. 
He also mentioned instead of using NG
Tube she would be better with a mickey 
Button, has anyone else's kid got a peg? Or 
Mickey button? Would like to know more
Info snd experiences.
So all in all things are happening.


----------



## Mylittlesunshine

Ok my update
After having 24hr heart monitor on
I went to heart clinic today
And it showed my heart going fast even when
Sleeping, so he sent me for a ECG of heart
Which showed my heart racing at 130
and LVH abnormality and tachycardia 
. So the have started me on more new meds
And in 2to 3 weeks time I've got to have 
A heart monitor implant put into my chest 
Which I'm really scared about as I will be 
Awake x so the story continues
Wish I could fast forward 2013x


----------



## Jmrogers4

I believe vtfamily has a peg, there is someone else but darned if I can remember.  If I do I'll come back and page them.


----------



## Mylittlesunshine

Thanks jacqui that would be great


----------



## Farmwife

EthanClark and Farmwife (me)

Both kids might have mickey buttons in the future. Grace is because of her Eos Disease.
EthanClark is because their hoping to keeping him on supplemental EEN to keep him in remission.


----------



## Farmwife

How much pred is she on?


----------



## Sascot

Well at least they are trying to get Lucy sorted!  No experience with Pred, so no advice there, sorry.  Andrew only had to deal with the NG tube, so that's the only thing I can help with.
Sorry to hear you are going to have to have the heart surgery awake although they can do amazing things these days while people are awake and it's much safer than having to go under a general anaesthetic. I hope the new meds start working soon for you!


----------



## Mylittlesunshine

Farmwife they want to do Lucy's mickey button in next 
Within next 4 weeks . 
They started Lucy on 30mg of pred a day 
And will get telephone appointment for 
Next Thursday see how she gets on will
Start first dose tomorrow x 
Fingers crossed x


----------



## Farmwife

Grace is on 20. So 30 is high BUT she is also very ill.
I was thinking of a support group for g-tubes.
What do you think?


----------



## Catherine

Someone made one for ng.


----------



## Farmwife

That's good to know about ng. Thanks Catherine.


----------



## kimmidwife

MLs,
I just wanted to send you both a hug! 30 mg of prednisone does seem a little high but are they weaning her down or keeping on her on that dose? Maybe they want to give her a big initial dose to calm things down.


----------



## Mylittlesunshine

Kim from what he said they will keep her at 30mg
For two weeks depending how she copes 
Then he said he will make decision to weN or not. 
How does pred usually work with dosage and
Length of time being on it. 
How long after starting pred do they start to wean?


----------



## Mylittlesunshine

Farmwife I think support group for g- tubes would 
Be great idea count me in x


----------



## Farmwife

Grace is two weeks but her dose wasn't high enough so the GI upped her 20mg for another two weeks. Her tapper is 5mg less every week.
So two weeks seem to be normal.


----------



## Farmwife

About the G-Tube
Thanks, now we just need to find someone that knows what in the :ybatty:sam hill it's all about.:lol2:


----------



## Mylittlesunshine

Farmwife thanks Hun for info
Might have to do some research I think x


----------



## CarolinAlaska

When I was at GI on Wednesday, our doc showed us a Mickey button.  It is very small and has an inflatable part that holds it in the stomach.  I'm starting to think it is a great idea.  I think if it was me, I'd rather have a Mickey button than having a tube in my nose all the time.  Google Mickey button, I bet you'll find pics.  A g-tube comes from the top and goes through the inside to the outside.  I think the Mickey goes from the outside in, but requires two small holes for the cameras to see what is happening from the inside.  Yikes!


----------



## my little penguin

http://community.kidswithfoodallergies.org/displayForum/forum/elemental_diet


Look under 
Tubey pics 
Tubey 101
Tubey 102
Lots kids living fully with 
All different types of tubes
Talk of balloons
Buttons
Etc


----------



## Mylittlesunshine

MLP thank you got the link 
Will go have a look at it. 
Me and hubby think its the best
Option at least when she starts school
In September no one will know its there
Instead of worrying about NG coming out x


----------



## kimmidwife

MLS,
What FW said about dosing and weaning is pretty much what our doctor does, though some docs will do a steroid burst meaning a higher dose for several days then a slightly lower dose for two week and then start the wean. I have to agree with the others that a Mickey button sounds a lot easier then the NG tube.


----------



## CarolinAlaska

MLP, link didn't work for me...


----------



## my little penguin

link requires a registered membership- free but still a membership.
the link is to parents of kids with food allergies
www.kidswithfoodallergies.org

lots of little kids cant have food on there due to 
food allergies
GI issues (motility, EGIDS )
so
lots of tubey info 
including permanent tubes
.


----------



## Mylittlesunshine

Thanks MLP
Going to take time to look though it
.


----------



## Mylittlesunshine

Urghh Lucy woke up again this morning
Screaming, when she was changed
Yet again her whole bum was burnt
And about 8 blisters
I've called gp waiting for him to call 
Back, I'm sure she's going to need 
A stronger cream.


----------



## Sascot

Poor girl!  Has the GP called back?


----------



## Mylittlesunshine

Yeah the gp did call back 
We took her to see him this morning
He's given her a steroid cream
And some antibiotic as it looks like
It's starting to get infected.
My poor sweet heart won't sit down 
And when she goes for number 1 or 2 
She screams. It took ages last time 
To clear just hope it clears quick this time x


----------



## Kimberly27

Your poor baby...   My heart bleeds for her.

Did he give her some pain medication?

I remember using a blister powder when mountain climbing once.  It dried out the blister quickly.  However, I think it was mostly advertised for friction relief.  Is that an option?

Kimberly


----------



## upsetmom

:ghug:..Poor thing i hope it clears up soon.


----------



## Niks

Bless her!  Sounds horrible, I really hope it clears up very soon

:ghug:


----------



## CarolinAlaska

I know it sounds terrible, but going potty into a warm bath or even a warm sitz bath might help it not hurt so much... ?


----------



## Mylittlesunshine

Morning everyone
Been up all night her bottom has got 
Worse more blisters, bleeding, and puss
She also got high temp 39 plus x
Taking her back to gp this afternoon x


----------



## Niks

Poor little thing!  

Hope she gets something to help this afternoon.  Good luck  xx

:ghug:


----------



## Mylittlesunshine

Ok went to gp, he thinks she's 
Going to need Iv antibiotics to clear it 
Quick, he wanted to do snobs but 
With Lucy screaming and punching 
And kicking to take the nappy off 
He decided against it. 
He called the GI office and left message 
If not called back by tomorrow morning 
He advised us to go A&E x


----------



## Kimberly27

Is there a numbing cream prescription, extra strength?

Kimberly


----------



## Mylittlesunshine

I'm not sure Kimberly 
Will have to check in the morning x


----------



## Farmwife

So sorry to hear all this.
Have you tried the warm water idea. Let her do 1 and 2 in that?
I never thought of that for Grace. If she has problems again I might do that.


----------



## Sascot

So sorry to hear she is suffering so much.  Have to say sometimes it takes a trip to A&E to get things sorted.  I remember when Andrew was having issues and his bottom was soo red/sore, the GI nurse prescribed a special barrier cream.  I will try to see if I can find out what it was.


----------



## polly13

Lucy was seen recently by a wound specialist for the sores on her bum her advice was to use orabase it's an OTC cream and provides a good barrier - it seems to be working ok.  Any chance your Lucy could be seen by a wound specialist they may just have a slightly different perspective to the GI- in our case the GI had said to bathe the area in the bath but the wound specialist advice was to avoid the bath and to keep the area as dry as possible.  Poor Lucy hope she is doing better today


----------



## Suzysu

how is she today? xx


----------



## Mylittlesunshine

Hi everyone
Been up all night with Lucy 
With a fever of 39.5 plus
And she was seeing creepy crawlys
On herself due to such high fever.
Given GI till lunch time if not 
Heading to A&E.
Polly your right my friend who is a nurse
Said don't bath it as you need too keep 
It dry to let it dry out.i loose count of how 
Many clears and pastes we have tried,
But this is the worst it been x


----------



## Jmrogers4

Hope the GI has called or you are at A&E getting things taken care of.  Poor Lucy!  Update when you can.  Thinking of you both.


----------



## Mylittlesunshine

Just a quick update
We went to a&e and there keeping Lucy 
In, they have put her on IV antibiotic
Pain relief though IV and fluids
They did bloods and it she was starting 
To get dehydrated and she had infection
The number they mentioned was 67 for the
Blood test that showed infection, can't remember 
Name. Anyway I've come home for a few things 
And then staying the night at hospital with Lucy, 
Not sure if I'm going to cope but have to be there.
Will try to keep you guys updated.
Thanks everyone


----------



## upsetmom

I'm glad they kept her there. 
I hope she gets better soon..:hug:


----------



## Jmrogers4

Take a deep breath and they will take good care of her and get the infection under control.  Will be praying for you.


----------



## Niks

Hopefully she will start to feel better very soon now she is getting the treatment she needs..  Big (((HUGS))) to you both xx

:ghug:


----------



## Farmwife

I'm sorry she got so bad but happy she's where she needs to be.

HUGS


----------



## CarolinAlaska

MLS, try not to internalize it.  Trust the docs and nurses to take care of your sweet girl.  Consider yourself on a mini-vacation while they take care of her.  Get yourself as much rest as you can and DON'T STRESS.  Praying for you both!


----------



## my little penguin

hugs
buy some cheezy magazines and trashy novels to read while she sleeps to help with the stress.

She has many docs watching her now -you rest


----------



## Clash

I hope she starts to feel better quickly. The others are right, make sure you take care of yourself as well. Sorry she had to be admitted but I do hope they can sort things out. ((HUGS))


----------



## Mylittlesunshine

Hi 
Sorry I've not been on to update but as u probably 
Know whats it's like when u have a child in hospital.
Anyway Lucy still in hospital and is still on IV 
Antibiotic , her temp is down to 38as of today 
Which is lower than it had been, her crp was done 
And is now 52 which is lower but not low enough. 
Me I'm very tired and I'm the only one 
Lucy will let stay with her, so hubby is coming to 
Give me sometime to sleep in day ect, 
Like now I've come home for a few hours before 
It's bedtime when Lucy starts asking for me x 
I just want to say thank you so much for asking about
Us it means so much x x x x


----------



## Suzysu

you will get through this - sending you big hugs and get well wishes for Lucy xxxx


----------



## kimmidwife

I am so sorry I missed that Lucy was in the hospital! Sending her hugs! and get well wishes. Take care of yourself too!. How are you doing besides being tired? Are you able to get any sleep in the hospital?


----------



## CarolinAlaska

Hugs to both you and little Lucy.  That CRP is off the charts!  Wow.  I'm sorry she is sick and needing to be inpatient, but glad she is where both of you can get help.  I pray that you won't get sicker with all the stress.


----------



## Kimberly27

Hugs!

Was 52 the CPR or SED rate?

Good luck!

Kimberly


----------



## Sascot

Thinking of you, hope you don't have to stay in for too much longer.  Hope things keep improving. Are they giving her anything other than the IV antibiotic?


----------



## polly13

Thinking of you MLS hope lucy is feeling better soon - hope you are trying to look after yourself aswell. xxxx Polly


----------



## Niks

How is Lucy? Hope she's feeling better. (((hugs))) :ghug:


----------



## CarolinAlaska

Thinking of you and Lucy.  Everything going okay?


----------



## Jmrogers4

Haven't been around for a couple of days, checking in to see how you and Lucy are doing.


----------



## Clash

I hope Lucy is doing better and that you have been able to get some rest! Sending hugs and support your way!!


----------



## Mylittlesunshine

Hi my dear forum friends
I really don't know where to start, I guess you 
Will understand why I've not been around for about 
A week or so. When you read update.
Well Lucy is doing much better and is now
On last day of oral antibiotics, the GI wants her to 
Stay on 30mg of pred for another two weeks,
Before thinking of tapering, also there has been
Discussion to keep Lucy on EN so on the 15 th
April she will come in hospital for few days to 
Have her Micky button put in.
As for me I haven't been too good I caught an infection 
Which affected my heart while I was staying 
With Lucy and collapsed, and all I can say is
I THANK GOD I am here and it happend in 
The right place. 
All this makes me thankful every morning
When i wake up
And get to see my beautiful children smile. 
And I get to spend my time with my dear
Children
I don't know what life installed for me and 
My family but I am determind to make the 
Most of our situation . 
My dear forum friends thank you so much 
For your love, support and friendship towards 
Me and my family. 
I pray you are all doing well and your kiddos 
Are doing good to. 
Xxxx


----------



## Niks

Sending you (((hugs))), sounds like you've had an awful time. xx

:ghug:


----------



## Mylittlesunshine

Thanks niks 
Just wish I could turn the clock back Hun x


----------



## Jmrogers4

Praying daily for you and Lucy, sorry you are having such a hard time with your own health but I'm certainly glad you were in a place to get help quickly.
((HUGS))


----------



## Kimberly27

I think of you and your family often.  I always send the best of wishes.

I hope you move towards recovery quickly.

Kimberly


----------



## Farmwife

Hugs:ghug:
Just keep going day by day and you'll be surprised how the years will add up.


----------



## Hope345

Thinking of you and Lucy.   You are an inspiration to all of us...


----------



## Sascot

Was just thinking of you this morning!  Sorry to hear you collapsed, that is a relief it happened where you could get help.  Hope the infection is clearing up so your heart can fight back!  Glad Lucy is a bit better - good luck for getting the mickey button!


----------



## Mylittlesunshine

Feeling rather down right now
Sat down today and it hit me 
That what has happend these past few 
Months and how our lives have changed 
And maybe I won't get to see my beautiful
Grown up. 
Sorry I'm really finding it hard right now 
And can't talk to anyone else


----------



## Kimberly27

Oh Honey.  Words can't express the love I'm sending your way right now.  

I say this with kid gloves on, have you talked to a therapist?  Maybe there is someone out there who can support you who is removed from it all and isn't in the thick of things.

Hugs. :heart:

Kimberly


----------



## Niks

Sending love and hugs your way :ghug:

You are doing an amazing job.  Hope you can get some time for yourself, even if it is just a few hour,s hope you can find a friend to talk to, but we are always here too xxx


----------



## Hope345

My heart breaks for you and how you are feeling.  
You have my support and will listen or talk any time.  We are all here for you my dear.


----------



## upsetmom

As said above WE'RE ALWAYS HERE FOR YOU...:ghug::ghug::ghug:


----------



## CarolinAlaska

MLS, don't despair!  You will pull through this!  I'm so glad Lucy is doing better!  I'm sorry it hit you badly again.  I've been worried about you since I heard Lucy is back in hospital.  I know the stress is such a burden on your heart, and on your immune system.  I will be so glad when you are both going strong again.  Hang on sister and fight, fight for both of you!


----------



## Catherine

Thinking of you.


----------



## kimmidwife

Thinking of you sending hugs and wanted to see how you guys are doing.


----------



## DustyKat

Oh Mls...:ghug: 

I am so sorry to hear about your health issues, what a frightening time for you all. I hope you are now on the better end of things. :heart: 

You will get through these what I call black dog days hun. I know it is hard to imagine from where you are now but you will and you will see your beautiful children grow up.  

You are grieving for a life lost Mum and it's only natural that the black dog will come calling but as you get stronger and Lucy does too those visits become less and less frequent until they almost disappear. He may continue to have the occasional visit but you will find that as time goes on he never quite catches up with the way he is right now. The stronger you become the more adept you are at outrunning him!  

We are here for you Mls, any day, any time and that is true wonder of a world wide forum, there will always be someone waiting for you with a warm heart, a soft shoulder and plenty of squishy but gentle hugs. :hug: 

:hang: Mum, you are doing fab, truly you are! 

Dusty. xxx


----------



## kimmidwife

Just wanted to see how you guys were doing today. Was thinking about you.


----------



## jmckinley

Just wanted to let you know that I am praying for you and Lucy and thinking about you. You are such a strong woman and a great Mom to Lucy. Take care of yourself! You can get through all of this and get both of you on the road to recovery. Hugs! We are here for you.


----------



## Mylittlesunshine

Lucy has appointment today to discuss
Having the Micky fitted next week x 
Any suggestions on questions that I should 
Be asking? Any ideas and input greaful


----------



## Farmwife

1 Recovery time
2 Medicines- She can't have NSAIDS. So what can she use?
3 Make sure she has no crohn's in her stomach (maybe you should talk to the GI about that on)
4 How will this effect stomach issues. Will she be in more pain during virus or flares.
5 Warning signs of infection.


Let us know how it goes.


----------



## CarolinAlaska

Re: FW's #2, our Peds GI was planning on going in with Jaedyn for surgery when she was going to get her Mickey to check Jae's stomach for signs of crohn's.  I think the suggestions FW posted are very good

How did your meeting go?  When will surgery be?


----------



## Mylittlesunshine

Morning all
Sorry I didn't update yesterday but it was along day 
And to be honest wasn't a good day for me( health wise)

Anyway we spoke about Lucy having Micky button fitted
Which will be next week, she will go into hospital on 15th

And will have it fitted on the 16 th April I forgot to ask how long 
It will take (scatter brain) .

The GI will be attending on the surgery to check
For crohns in stomach but he said it should be ok. 

I thought that the G-tube would be fitted first that was 
My understanding from lAst time

But they have decided to fit it all in one procedure 
They think its better for Lucy as is it is very stressful 

For her and don't want to put her under general 
To many times. 

Lucy hasn't put any weight on since EN she is still
Struggling even being on steroids

I asked why this was and he said it because she isn't
Absorbing calories ect. 

GI wants us to start tapering the steroid on Friday 
5mg a week I'm abit worried. 

Any suggestions on what I should be looking for 
While tapering, is it such agood idea just before surgery ?

All your views and thoughts welcome xx
:ghug:


----------



## Mylittlesunshine

Lucy started tapering pred today
Down 5mg a week so now she is on 25mg
This week, I just hope things go ok .


----------



## Farmwife

It will be fine.
I noticed with Grace the first 2-3 days after each tapper seemed to start a mini flare.
Never lasted longer and wasn't as bad as what she had been dealing with.
We decided to do tappers on Monday so it wouldn't interfere with the week-ends.


HUGS


----------



## Mylittlesunshine

Thanks farmwife


----------



## Farmwife

I forgot to ask.....

How many calories is she getting a day?


----------



## Mylittlesunshine

She should be taking 1800 calories over 8
Feeds . What about grace?


----------



## Farmwife

1200-1300 cals a day.

Grace is holding her weight. She is even kind of chunky now. I love it. Also her GP wants her on the heavier side if she gets really ill, she'll have a weight to lose.

What's Lucy's maintenance medicine?


----------



## Farmwife

What's Lucy's weight in pounds?


----------



## Mylittlesunshine

Although she should take8 feeds she struggle 
To take 5-6 feeds over 24hours


----------



## Farmwife

How many ml's is she getting then?


----------



## Mylittlesunshine

Lucy's weight is 11kg which is 24lb
We haven't got maintance med yet
We will be discussing it after mickey 
Button in place, but to be honest I'm scared 
Of those strong drugs for lucy x


----------



## Mylittlesunshine

For 6 feeds she takes 720 mls
Each feed is 120mls


----------



## Farmwife

I don't blame your fear on the big drugs. I'm in the same boat.
BUT once you see her run and p[lay and eat like a soon to be four year old should you'll be happy ( well maybe more like relieved) with the choice. I bet you will also start to improve in health too. It's NEVER easy is it. HUGS


----------



## Farmwife

Ya, Grace should be at 120 but the last few days I can't get her past 90ml an hour.

When is Lucy's b-day?


----------



## Mylittlesunshine

Yeah your right
Unfortunately my health ain't gona get better
This heart failure only gets worse eventually
But to see Lucy be stronger than she is 
And be a a normal child ( I wish ) x


----------



## Mylittlesunshine

Lucy's birthday is 27 th April she will 4


----------



## polly13

The thought of the big drugs is worse than the reality - if that makes sense but I know how scary it is.  Allowing Lucy to go on infliximab was one of the hardest things we ever had to do .... But for now I am glad she is on it because it is the only med apart from prednisone that has helped her symptoms.  Hang in there mls the will find something that works soon.  On diagnosis Lucy was only 9 kgs she is now a whopping 14 kgs so it does get better.


----------



## kimmidwife

MLS,
Keeping you in our prayers as well!. Do they think the heart failure can stabilize or get better? Praying for good things for both of you!!!!!


----------



## Mylittlesunshine

Kimmidwife
With cardiomyopathy it won't get better 
Was told it only gets worse 
And causes other problems with it
Like now I have been put on another 
Medcine(water tablet) cos my body is 
Absorbing water and has made my legs
Feet and stomach swell. But who knows what
Life brings you from day to day . 
Thanks for asking kimmidwife x 
How's your daughter doing ?


----------



## upsetmom

:ghug:..Hugs MLS your always in my thoughts.


----------



## CarolinAlaska

MLS, don't believe that you won't get better.  I've had patients who've had cardiomyopathy living good lives and much better than when they were first diagnosed.  Yours is likely due to all the stress, but if your doc isn't giving you a good prognosis, I think you should get a second opinion!  You deserve a doctor who believes he can help you.  If he doesn't think he can help you, then he probably can't.  Find the one who can!  I am praying for healing for both you and little Lucy!  There is hope.  I've seen two of my daughters healed of seizures and one miraculously healed of scoliosis!  I'm praying now for Jaedyn's healing of her Crohn's.  There is no reason for me to believe that God would do otherwise.  Hang onto hope, dear friend!


----------



## Mylittlesunshine

Lucy goes into hospital tomorrow 
I'm sat here with Ben and jerrys
Trying not to think about it
Anyone want to share?


----------



## Niks

Am joining you with Ben and Jerry's!! Halfbaked! Yum.  Goodluck tomorrow, will be thinking of you xxx :ghug:


----------



## Mylittlesunshine

Ben and jerrys chew chew at mo
Ur welcome anytime niks


----------



## Farmwife

Move over on the couch ladies.:cool2:
:ghug:I'll be partaking in the ice cream too.


I'll be thinking of you both tomorrow.


----------



## Jmrogers4

I'll bring my lactaid pills and help - love Ben and Jerry's - Good luck tomorrow, will be thinking of you, update when you can


----------



## my little penguin

me me- I will take some too.
make a little room for me. but lots of room for the ice cream


----------



## Kimberly27

Would you like sprinkles on that?  LOL

Good luck tomorrow!

Kimberly


----------



## upsetmom

Good luck for tomorrow.
I had to look up what a ben and jerrys  was.
Had never heard of it... it sound delicious.


----------



## CarolinAlaska

sorry I missed the ice cream fest.  I'm thinking of your little one as she goes into the hospital tomorrow.  <<<Hugs>>> for both of you.


----------



## Mylittlesunshine

Thanks everyone 
Your all welcome at my house anytime x
:ghug:


----------



## Mylittlesunshine

Update
Where at home waiting for a call from bed 
Manager to go in to hospital with Lucy. 
She will have surgery for mickey button done
Tomorrow 16th as long as all bloods 
Come back ok. 
Thanks to you all for the love an support
This is a fab place x


----------



## Jmrogers4

Thinking of you and Lucy.  I really did share in your Ben and Jerry's.  Couldn't stop thinking about ice cream after reading your post, went to the store and got ice cream, bananas, toppings and whip cream and we had banana splits.


----------



## Mylittlesunshine

Wow sounds lovely lol


----------



## Mylittlesunshine

Heading back to hospital in few mins 
Lucy is scheduled for mickey button surgery 
Around4.30 pm
I'm hoping the sedation they give her is not 
The same one as last time (pre med) 
Will try and update u later x


----------



## DanceMom

I would ask to speak to the anesthesiologist directly.  A cannot tolerate Demerol and I always specifically ask that she not receive it.  Hope the procedure goes well!


----------



## CarolinAlaska

I hope all is well.  I don't know what time it is there, but it is 9:03 am here right now.  Is it 4:30 pm there yet?  I don't remember where you are .  I'm sure all will go well.  Tell your daughter we're all routing for her!


----------



## Farmwife

Hugs


----------



## Niks

Hope all went well. Thinking of you both xx


----------



## Farmwife

Just checking back in.
I hope all is well.


----------



## Jmrogers4

Checking in, hope all is well.  Thinking of you


----------



## Sascot

Sorry I missed all this!  Hope everything is going alright :hug:


----------



## Mylittlesunshine

Morning everyone
Sorry for not updating sooner
Anyway Tuesday evening Lucy went down
To have her mickey button fitted. 
Everything went well.
She was in abit of pain but with pain med 
She slept comfy all night. 
Yesterday she was sat up playing abit  x 
The only thing that is bothering her is when 
I change her and she sees the mickey button
She starts screaming an tells me take it off.  
( she has problems with new things)
But hopefully when she relises that she doesn't 
Have to have NG tube and that mickey button 
Is feeding her I'm sure she will get used to it.


----------



## my little penguin

Can child life help you make. a Tubey bear for her with a button of beach ball valve ?


----------



## Mylittlesunshine

MLP 
What is child life? And where do I contact them
That would be a good idea


----------



## my little penguin

They should be part of the hospital services


----------



## Mylittlesunshine

Ah ok will ask when I see the Gi or gastro
Nurse later. 
Thanks Hun for info wouldn't of Eva thought 
Of that . X


----------



## Mylittlesunshine

Lucy is tapering down to 20 mg today
For pred shofar so good.
Hoping she will be home for the weekend 
After having her mickey fitted.
We see the dietian today as they want to 
Up her calories to put her weight up.


----------



## DustyKat

Sorry I have missed all this Mls...:ghug: 

It is good to hear that all went well, bless her...:Karl:

Any news on getting home for weekend? 

Sending loads and loads and loads of love and luck your way! 

Dusty. xxx


----------



## CarolinAlaska

I'm glad to read that she is starting to adjust.  I'm not sure what a "Tubey Bear" is, but I hope it helps...  I'm sorry she doesn't like it.


----------



## kimmidwife

Hi MLS,
I am just catching up. I am glad the Mickey button placement went smoothly. It does take some time for the little ones to adjust nut hopefully she is feeling better about it. I am surprised your hospital did not offer for her to meet with child life beforehand so they could explain it to her and show her what should happen. Anyway, hopefully you guys are home and doing better.


----------



## Mylittlesunshine

Lucy got home Saturday night 
She is doing better now


----------



## my little penguin

SO glad she is HOME


----------



## DustyKat

YAY!...:mademyday: 

Dusty. xxx


----------



## Clash

I've been away and just caught up on the thread, so glad you all have made it home and she is doing better. I do hope she comes around to the mickey button and it provides her some relief and the ability to put on some weight. ((HUGS))


----------



## Jmrogers4

Trying to catch up on how everyone is doing, glad it all went and hope she gets "used" to it quickly and starts gaining weight.


----------



## Mylittlesunshine

Why is it when you think things
are getting better something 
worse comes along.
Life is so unfair


----------



## Sascot

Hope you are ok.  How is Lucy doing since she got home?


----------



## Mylittlesunshine

Lucy is doing ok... Wish I was 
Thanks for asking


----------



## Jmrogers4

MLS hoping you get the care and treatment you need to get that heart of yours feeling well.  Sending thoughts and prayers your way that you are feeling better quickly.  Wish we could come take care of you for a while so you could get some rest.


----------



## Sascot

Sorry to hear you're not doing well!  I hope the docs are keeping a close eye on things!


----------



## Niks

hope you feel better soon (((hugs)))

:ghug:


----------



## Mylittlesunshine

Lucy's feeds are going well
She tapers to 15mg if pred tomorrow.


----------



## Mylittlesunshine

Sorry I've not been around much 
Things at this moment are very stressful
And complicated, which I'm going to be 
Under going tests. Depending the results 
Will depend treatment. I may not be around 
Much in next few weeks . 
Thank you everything all of you have done 
For me and Lucy x


----------



## Clash

Sending hugs and support your way, MLS. I hope testing goes well and they find a good treatment for you.


----------



## kimmidwife

Sending hugs! Hoping testing goes smoothly and they find some answers to help. Will keep you in my thoughts and prayers!


----------



## Kimberly27

Sending love and best wishes!

You may not get to read our supportive posts if you're not online, but I doesn't mean we aren't sending them.  We will all be routing for you!

Kimberly


----------



## DustyKat

I hope more than anything that things continue to go well for Lucy. :ghug: And that all goes well for you too Mls. :ghug: 

Sending loads of love, luck and healing thoughts your way! 

Dusty. :heart:


----------



## Mylittlesunshine

While on pred Lucy has been having 
D around 3 times a day but since yesterday
Her tummy pain is back and has been going
Around 6-7 times and day. 
Is this normal with tapering off pred?


----------



## DustyKat

Unfortunately it is not uncommon for symptoms to kick back in when Pred is tapered.  

For some people it will settle down but if the symptoms are excessive and/or persistent then it usually means upping the dose again until things settle before tapering again. Upping again can mean going back to original full dose, or close to it, or going back to the dose you were on prior to the last taper. The taper may also be slowed down the second time round. 

Good luck hun, I hope things settle down for your lass. :ghug: 

Dusty. xxx


----------



## Mylittlesunshine

It was Lucy's 4 th birthday yesterday
This year has flown by, cant belive 
My brave little girl has gone though 
So much . 
We had her first party yesterday she really
Enjoyed it x


----------



## Catherine

:bdayparty:


----------



## DustyKat

Awwww, bless her. 

Happy 4th Birthday Lucy!!!







Dusty. :heart:


----------



## upsetmom

Happy Birthday Lucy...:bdayparty:


----------



## Jmrogers4

Happy 4th Birthday Lucy, Hope you enjoy your special day with lots of sparkly things.


----------



## CarolinAlaska

Happy Birthday Lucy!  I'm thinking of you as you undergo testing too, MLS!  <<Hugs>>


----------



## Clash

Missed this somehow, Happy Birthday, hope she had a great day!


----------



## Sascot

Happy belated birthday wishes!!!!


----------



## Kimberly27

Mylittlesunshine said:


> This year has flown by, cant belive
> My brave little girl has gone though
> x


...and brave mommy!

Happy Birthday Lucy!

Kimberly


----------



## Mylittlesunshine

Thank you everyone
Lucy was tapering down 
When she got to15mg half way
Symptoms started back so GI
Has told us to up it to 20mg
For another2 weeks and start tapering 
Again. Fingers crossed.
Feeds are going well she has 4 feeds through
The day and a night feed which last most of night
To bump calories up.


----------



## Mylittlesunshine

I just want to say I'm sorry 
I've not been around things are very 
Differcult at the moment and very stressful. 
I hope you and your kids are doing well.


----------



## kimmidwife

Thinking of you guys and sending hugs!


----------



## Sascot

Hope things start to improve. Thinking of you!


----------



## Farmwife

Hugs MLS.


----------



## ChampsMom

Praying things get better...


----------



## Kimberly27

We're together in spirit always.

Kimberly


----------



## my little penguin

Hugs for you and your little one


----------



## Mylittlesunshine

Today was a lovely sunny day
I had a family member from Australia visiting
So we ventured out for the day. 
It was the first day we have gone out 
Properly with Lucy after having mickey
Button fitted and we had no problems
Infact  it was better than I expected.


----------



## kimmidwife

So Glad to hear you guys had a good day! Hope every day is like today!


----------



## Niks

Good to hear you had a good day!! Hope you have many more xxx


----------



## upsetmom

Glad to hear you had a good day!!
I hope you have many more!!


----------



## Mylittlesunshine

Morning all
This morning I'm so stressed I've got 
An appointment at the hospital 
To discuss and MRI I had done
I hate hospitals x


----------



## Sascot

Good luck, I hope the discussion goes well.  Thankfully I don't mind hospitals (my mom was a gp), but I can only imagine how stressful it must be to have to go when you don't like them.  Adds to the stress of not feeling well.  Hope they come up with a plan to make you feel better!


----------



## Jmrogers4

Good luck! Hope they come up with a fabulous treatment plan sending loads of hugs and support


----------



## ChampsMom

Praying for you!


----------



## Niks

Hope everything went well!  (((hugs)))  xx


----------



## Farmwife

Just stopping by. I hope all is going well.


----------



## Mylittlesunshine

:banana:Lucy went to GI appointment today
They weighed her and she has put on 1lbs
It's not a lot but its a massive achievement
She hasn't put any weight for long time
Couldn't wait to share the news


----------



## Farmwife

YA!!!!!!!!!!!!
So happy to hear this!


----------



## Mylittlesunshine

Me too felt like dancing when they said lol


----------



## Niks

Yay!!! Fabulous news  :dance: :dance: :dance: :dance:


----------



## ChampsMom

:banana:  Woo-hoo!!!  :banana:


----------



## EthanClark

MLS-That is amazing to hear. Every step in the right direction deserves to be celebrated. :ghug:


----------



## Jane and Nick

Well done Lucy! Well done mum.


----------



## DustyKat

That is wonderful news mls! :sun::sun::sun: 

Onwards and Upwards! 

Dusty. xxx


----------



## Mylittlesunshine

Thanks everyone.
Just a quick question....
Lucy is tapering again from another 2 
Week of pred, she was down to 15mg
Last Friday but it seems when she 
From 20 mg the symptoms get worse
She is due to go to 10 mg tomorrow 
But her D is really bad and tummy pain
Is back, just wondering if will ever get off
Pred? Do u think she needs a maintance
Med? Does this happen a lot with kids on pred
When tapering . Any advice pls


----------



## Mylittlesunshine

Hmmm Lucy has struggled today 
To take two feeds here belly ache 
Has been bothering her. 
Seems when we reduce the pred symptoms 
Come back.


----------



## my little penguin

Hugs
What does her Gi say when alsymptoms come back?
When DS couldn't wean from pred without symptoms this past summer 
Docs knew his current drug plan was not working.
Hope they get a good plan for her soon.


----------



## xmdmom

Many people have increased symptoms when prednisone is being tapered.  Sometimes,the doctor will up the prednisone to the dose on which the person was doing well on, for a while and then try to taper again more slowly.  If each time you try to wean the prednisone, she feels sicker, she may need a maintenance medicine as prednisone should not be used for the longterm.

Sending HUGS and healing thoughts!


----------



## Catherine

We had the dose of pred up on ween of pred the first time as the symptoms come back.


----------



## Mylittlesunshine

As many of you know what's been happening
With me past few months with my health
The roller coaster hasn't stoped!
I've been struggling with a new medical 
Problem and tomorrow I'm going into hospital
To have a biopsy done on Tuesday
I can't tell you how scared I am
And how stressed I am just feel its 
One thing after another since February .
I hope all your kiddies are doing ok 
And I want to say a huge thank you to
You all for the support caring and love you 
Have shown me and my family . 
Thank you frm Helen and lucy


----------



## Mehita

Wishing you luck for Tuesday!


----------



## CarolinAlaska

Helen, I'm thinking of you and praying for you and Lucy as your health is not cooperating .  What other meds is Lucy on?  I'm glad the pred helped, it's a good sign that other things can help in the future.  Seems to me that she needs a maintenance med... that is what finally brought Jaedyn into remission...


----------



## Niks

Thinking of you and Lucy.  Sending you both (((hugs)))  :ghug:


----------



## ChampsMom

Praying for you both!   May you find comfort and strength for Tuesday!  I pray you get good news.


----------



## my little penguin

Hugs and prayers for you and Lucy


----------



## Sascot

Sorry to hear things aren't better with you.  Just wanted to wish you luck for the biopsy.  Thinking of you!


----------



## upsetmom

:ghug::ghug::ghug:..For you and Lucy


----------



## Mylittlesunshine

Hi all just a quick update
Lucy has managed to taper down to 
10mg of pred, GI wants her to be on 
That for 2 weeks and then try to taper
Down another 5 mg. 
there is talk of them wanting to put her on 
Maintance meds there was talk of either
6mp or aza but nothing was decided
He wants to make sure they put her on right one.


----------



## Mylittlesunshine

Any thoughts or info on aza or 6mp?


----------



## Farmwife

I'm not sure of the deferents but they were going to put Grace on 6mp but for now we decided to do LDN.


I'm glad she could tapper down. How's her feedings going? Is she back on food?


----------



## Jmrogers4

Jack was on AZA for several years with no side effects and it worked fairly well at keeping the disease in check although he did not grow and gain weight during that time I'm wondering if he would have had we added the supplemental drinks back then.
My hubby has been on Aza for the last 8-9 years and has done really well on it, with very minor flares here and there again no side effects with him either.  He has blood tests every 3 months.
I believe Aza and 6MP are the same class of drugs and work much the same way.  Why doctors prescribe one over the other I'm not sure but now I'm curious and will have to do some research and ask Jack's GI


----------



## Sascot

We were told the 6mp is easier on the liver than the Aza.  Are you getting a choice?  Andrew was borderline for tolerating Aza but he had to fail that first before the GI was "allowed" to give him 6mp (licensing laws or something like that)


----------



## Mylittlesunshine

Hi everyone 
Lucy saw the GI today, they have stopped
Lucy tapering at 15mg of pred as she had 
Problems with tapering.
She is also full of cold and temp due to this
Crazy weather we got in UK one day hot 5 days cold n wet
Anyway Gi said that in the next two weeks
Lucy will start maintance meds they just 
Can't decide which it will be aza or 6mp.
Which on do you guys think will be better
On a 4 year old? Which one has worse side 
Affects? Please any advice is greatful. 
You guys are great x x


----------



## Farmwife

First let me state.
 I LOVE THE NEW AVATAR!

My understandings that 6mp is easier on the liver. 
I guess if LDN fails, we'll start there for Grace.
How are you doing?


----------



## my little penguin

I think side effects are hit or miss.
As far as liver it depends again on the kid .
We did 6-mp for DS 
No regrets no real side effects.
Blood work showed it went to his liver at one point 
So we had to lower the dose and add allopurinol.


----------



## Jmrogers4

No experience with 6MP, Jack was on Imuran/Aza with no side effects, had a hard time getting to theraputic levels though and had to add alipurinol.


----------



## Mehita

DS started Aza three weeks ago and so far he hasn't had any side effects. 

Can Lucy swallow pills? I know 6MP comes in a liquid version, but I don't know I'd Aza does?

Something to consider.


----------



## CarolinAlaska

In my understanding AZA is a precursor to 6-MP and has to be metabolized to 6-MP.  I don't think there is much difference beyond that.  6MP seems to be a simple med to take for Jaedyn and she's not having any problems with it...


----------



## Johnnysmom

We have had great success with 6mp.  I was so afraid of it at first but it has really worked well and no side effects.  I hope Lucy gets to feeling better very soon.  ((((Hugs)))


----------



## kimmidwife

Hi MLS,
Wanted to see how you both are doing? I have not been around so much as we have had a lot going on and my own health issues have been giving me issues.


----------



## Niks

How's things with you and Lucy? Hope all ok xx


----------



## Mylittlesunshine

Thanks everyone for asking about me
And Lucy. 
Sorry I've not been around much had 
A lot on. Hope all your kids are doing fine.


----------



## DustyKat

Carol is right about the Aza/6mp, aside from the metabolism aspect of things they are basically the same. They have the same side effects but not tolerating one doesn't mean you won't tolerate the other! Seems crazy ay? 

I am not sure of the presentations available but I would think whichever is easier to prescribe to a 4 year old would be the way to go. Given that they are the same then I would then go to whichever is easier to metabolise and you would have to think that would be 6MP. 

Both of my kids are much older but neither has had issues with Imuran. 

Thinking of you both, :heart:

Dusty. xxx


----------



## Mylittlesunshine

Hi everyone 
Thank you for the advise on the meds
Lucy goes for GI appointment Monday 
Where we will get decision on which 
Med she will start. 
She is still on 10 mg of pred a day


----------



## my little penguin

Good luck on Monday


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## Catherine

Good luck


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## DustyKat

Good luck with the appointment, I hope it is fruitful one! :goodluck: 

Dusty. xxx


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## Farmwife

I hope it all goes well!


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## Jmrogers4

Good luck on Monday, hope the meds do the trick for her with no side effects.


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## Sascot

Hope the appointment goes well. Whatever they choose, I hope it works well!


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## kimmidwife

Hope the appointment went well.


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## Clash

I hope the appointment goes well!


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## Niks

How did appointment go?? Hope all ok? Xx


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## Jmrogers4

Thinking of you and Lucy.  Hope all is well.


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## Kimberly27

Best of luck!

Kimberly


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## Mylittlesunshine

After appointment with GI 
They think it will be better that Lucy starts
6mp as they said you can get it 
In liquid form which will be easier to give. 
Anyone know if there are any tests before 
You start 6mp? Docs mentioned some bloods
But didn't say what for?


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## Mylittlesunshine

Sorry the update is late


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## CarolinAlaska

Yes, they get a TPMT or something like that to see if she has the proper enzymes, and then check 6MP metabolite levels after 2 weeks


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## Mylittlesunshine

Thanks carol
Will check what the bloods are for 
When we go Thursday.


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## Sascot

Yes, Andrew had the TPMT test done before he started.  As for bloods we had them weekly for 8 weeks then fortnightly for a month and now they are monthly.  They keep a close eye on neutrophils and liver function (ALT)


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## my little penguin

^^ yeah that
ALT and AST were big ones for Ds.


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## kimmidwife

Thanks for the update!


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## DustyKat

Yep, TPMT here too.  

Good luck to your lass Mls. :heart: 

Dusty. xxx


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## Mylittlesunshine

Hi all
An update .
Lucy has appointment at GI on 
Tuesday2nd she will be starting 6mp.
Not sure of dose at the moment.
We have mixed feelings about starting 
This with side affects ect. 
How did your kids do on 6mp? 
How longdoes it take to work?


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## my little penguin

DS took 6-mp for 8 months.
He did ok but never got rid of minor symptoms.
His body kept wanting to send it to his liver.gi was on top of it though so not a real issue
So we had to add allopurinol
But overall very easy drug.
Just wasn't strong enough or the right drug for DS 
Good luck


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## Mehita

DS isn't on 6mp, bit it's sister drug, Azathioprine, which I've read tends to have more side effects than 6mp. He didn't experience any notable side effects. A weird joint pain here or there that lasted a hour, maybe. Besides that, nothing. Then, much to our surprise, his labs showed he was at therapeutic levels already at only 5 weeks. We are at seven weeks now and he feels great. For most people it usually take 2-6 months.

Just be sure to get regular lab work done to monitor her liver, etc. Your GI will give you a schedule to follow. Weekly, then bi-weekly, then monthly. Very important. Also, if she does have side effects, you can stop this drug instantly (per your GI) and the side effects will clear up quickly.

Good luck!


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## Sascot

Good luck with the 6mp.  Andrew is on 6mp and so far apart from some tiredness he is fine. We couldn't really tell how he was doing as he doesn't have any symptoms right now but in the 4 months he has taken the 6mp his faecal calprotectin has gone from 650 to 80 which is great.


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## DustyKat

Hey Mls...:ghug: 

6mp will normally take at least 3 months to become fully therapeutic and for some will it stretch out to 6 months. 

My two are also on the parent drug Imuran. Both of my children are in remission following surgery, I don't know if Imuran has contributed to this state but since it is being used as a maintenance medication I have to think it is having some sort of positive effect! The main thing though is they have not had any ill effects from it. Sarah has been on it for 7 years and Matt for 2.5 years. They have bloods done every 2 months to check that all is okay with their white cell counts and liver function. 

Good luck Mls! I hope all goes well for Lucy. :heart: 

Dusty. xxx


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## Jmrogers4

Jack was on Imuran for 2.5 years no side effects and worked quite well.  Hope it works as well for Lucy


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## CarolinAlaska

Jaedyn is taking 6 MP with no side effects seen yet (started or May).  Her calprotectin is down from 600 to 28 or so - but that might be the EEN and GF diet too


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## Mylittlesunshine

Lucy started her 6mp today. 
Upto now she seems to be fine with no 
Problems. Everything crossed that it works. 
Hugs to you all x


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## CarolinAlaska

Yes for getting off to a good start!:dance:


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## kimmidwife

Glad to hear so far so good! Keeping fingers triple crossed that it all continues going smoothly.


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## Tesscorm

Hope all continues to go well!!! :ghug:


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## Jmrogers4

Go Lucy! :kiss:


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## DustyKat

Sending tons of luck that all goes well for Lucy! :goodluck: 

Dusty. xxx


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## ChampsMom

Hope everything is going well!!


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## Clash

I hope 6MP does the trick for your sweet little one!


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## Mylittlesunshine

Lucy started 6mp and is doing fine so 
Far, she is still on full time feeding 
Though mickey button


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## Niks

Fabulous news MLS!!  So lovely to hear.

How are you doing?

Hope all is okay and you are recovering from your surgery xxx


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## DustyKat

^^^^+1! 

Thanks for the update Mls, it surely is wonderful to hear that Lucy is doing well! :hug:

Dusty. xxx


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## kimmidwife

So glad to hear she is continuing to do well. May it only continue!


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## Jmrogers4

Glad she is doing well. Long may it continue.


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## my little penguin

Woohoo for doing well
That is great news


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## Mylittlesunshine

Hi all been awhile since I updated
Lucy seems to be doing well 
On the 6 mp so fingers crossed x


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## Mylittlesunshine

Update 
Since yesterday Lucy has been flaring
Her BM's yesterday 11 times 
She not taking her feeds manged to get 
2  out 8 feeds in her she complaining 
Her if her tummy hurts and really tired. 
This morning she woke up and said 
Her legs hurt, crying for mummy to 
Carry her down stairs...... That's a laugh
Can't can't even walk down stairs myself
I'm down on my bottom.
Thanks god my 11 year old could carry her. 
Feels like its going to be one of those days.


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## Niks

Aw, bless her and your 11 year old!  Sounds like they are a massive help to you right now.

(((HUGS)))) xxx


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## Mylittlesunshine

Yeah NIks it's a good job I've got my 
Eldest otherwise I would be stuck.
The only thing is I feel so guilty 
Having to ask her to do washing
Helping me with things that I should 
Be doing ect..... After all she is still a child.


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## crohnsinct

Oh MLS!  Don't feel that way.  She has probably been feeling helpless with your illness and this gives her "something" she could do for you. Plus you are teaching her some excellent life skills.  I am sure that you are gushing over her about what a big help she is and all so she is feeling really good about herself and her importance.  Let everyone do all they can for you.  It truly makes them feel better and if it helps you on top of it a win/win. 

Hoping that each day gets a little easier for you!


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## Jmrogers4

Yes ditto what CIC says at 11 they so want to be mature and grown up.  She probably feels as if she is doing something to help you get well.


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## Niks

Absolutely agree!!!  I am sure she loves being able to do somethings to help you both.  (((HUGS))))  xxx


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## kimmidwife

Triply agree with what everyone else said. Your older one is probably very happy to help and happy you are home! I am sorry Lucy is flaring again. Hopefully things will get back under control quickly.


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## Sascot

Sorry to hear Lucy is struggling just now.  Hope it may just be a virus that's causing things to flare up!  Try not to worry about your 11 yr old having to help - you just have to do what needs doing to get through this period.  I agree she is probably just really happy to have you at home - you can still sit and cuddle them!


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## CarolinAlaska

I think in the end your 11 year old will be much better off for it.  She will be a much more compassionate person and much more mature than her classmates.

I'm sorry Lucy is feeling poorly again.  Just when you were saying how well she was doing .  Hopefully this will be a passing bug   <<<Hugs>>> to both of you.


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## polly13

So sorry to hear Lucy is moot doing so well.  Hope you and her start to feel better soon


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