Any advice please - 8yo dd fasting & laxative drink for hospital procedure

[buckeejit]

Dd almost certainly has Inflammatory bowel disease, (calprotectin was 1710) & is getting scopes on Thursday-up & down to see if it's Crohn's or Ulcerative colitis.

She has to fast & drink laxative drinks the day before. She loves her food so I'm trying to think of anything that will help get us through, like keeping her up late on Tuesday so she goes to bed earlier in Wednesday.

Also if anyone has any tips on getting her to drink the stuff, that would be good.

Her grandad sent money for a mobile as he gave her one that's broken before so hoping it arrives tomorrow & I can set it up with things to distract her. I don't feel very calm about it so if anyone has been through this with their dc, any tips or info would be great. Thank you

UK parents of kids with IBD (Ulcerative Colitis and Crohn’s) is the Facebook group I am part of and it is really helpful. And much more appropriate than the adult based ones which will be too scary (or at least I found that)

thats good to know it isn't scary Zeebee as most of the reading I've done scared the bloody life out of me!!

OP we haven't modified or changed my son's diet and there seems to be no triggers, also felt that if we changed his diet we would never know what the triggers are (if food related which it isn't always)

normal to feel emotional / tired it's a big deal but things will settle x

Super thanks @Zebee I've found it now, huzzah!

@Remmy123 will maybe speak to a dietician & see what they say. I know what you mean though - we did cut gluten when we thought it might be coeliac but it's back now. Lactose seems to be a bit harder to digest but will keep an eye.

Have spoken to dh about being more supportive too. Off to peruse fb & glad it's not scary, the consultant has me concerned about the effect of the steroids. Done with one worry & onto the next. A mothers work is never done!

My husband couldn't understand why I was so upset about the diognosis but generally I am a 'glass half empty' type of person and he isn't (I am working on it)

side effects always sound bad when you read up about them but I think it's all very individual

if she is on Pentasa (Mesalamine) my son seemed a bit head achey at first so may have been those but It didn't last.

steroids (prednisone) seem different for every one in terms of side effects - my son didn't need those. It's good she wil be at home for a couple of weeks to let the medication do it's work and you can keep a close eye.

www.facebook.com/groups/1375427379444667/?ref=share

Here you go!

Hello Buckeejit,

Well done yo you and your daughter for getting through the prep for the procedure.

My 16year old daughter was diagnosed with crohns disease (IBD) 2017. She didn't have to stay in hospital and was sent home with steroids. The steroids worked wonders for her and she was becoming her old self within the first week of taking them. It was wonderful to see her eating and happy again. After 8 weeks she was so well and then went into Humira which is a maintenance drug. This has also been a wonderful drug that has kept any symptoms away for over 4 years. Over those 4 years my daughter has led a normal active life. She only has to visit the hospital 4 times a year.

I really hope the steroids work for your daughter too. One thing I would say is please do not read too much on Dr Google, I made that mistake and made myself ill reading about all the worse case scenarios. There is a very supportive charity for children and parents for children with IBD called Cicra. Please look into registering with them. Your daughter will recieve a Can't Wait Card which your daughter can show in shops etc and the staff should let her use their staff toilets. She will also receive a radar key for disabled toilets. Also on the charities website there is endless useful information that covers most things as a parent you need to know. It advises on how to liase with your daughters school and getting a health care plan in place for her. That is something you definitely need to get in place so that he school are aware of your daughters diagnosis.

No parents want their child to be diagnosed with any illness but a child suffering with the symptoms of IBD getting a diagnosis is the best thing for them so that they can get the treatment that they need to heal the gut/colon in your daughters case steroids. Then your daughter will more than likely go onto maintenance treatment.

It can take parents months to come to terms with their child's diagnosis but it does, get easier and becomes the norm.

Cicra also offer support for parents needing to talk to other parents who have children with IBD, they can arrange another parent to call you. They also have a scheme for children called E - Pals, similar to penfriends where children can get in touch with other children with IBD via email.

All the best to you and your daughter.
Your daughter will get her life back.

I do apologise it is your son isn't it not daughter. I got mixed up with reading the opening post on this thread.

Oh blimey ignore that last one I really am half asleep it is your daughter. I think I can be excused it is 6am in the morning.
I have no clue how you edit or delete a post on here, doesn't seem to be that option unless I am missing something.

My son was diagnosed with crohns when he was 8. The prep is hard to do. My son really struggled with it.
If they find IBD as a pp said they are likely to keep her in hospital for a couple of days to go onto a liquid diet, so go prepared just in case.
When my son was diagnosed they weren't doing this, so he went straight onto steroids', pentasa and azathioprine. He had severe inflammation all through his digestive tract and bowel, as well as oral facial crohns.

Hopefully your daughter is okay with needles, as they will be inserting a cannular prior to going to theatre, and if diagnosed will require many blood tests going forward.

If you have facebook look up .UK Parents of Kids with IBD (Ulcerative Colitis and Crohns) It is a group for parents going through this and they are really informative and helpful.

My son is now 21, obviously still has crohns, but is doing really well with medication. Feel free to PM me.

I would also like to add that some of the side effects of the steroids that you read up on can be very frightening to read. However you have to remember not all those side effects are always going to happen. For instance Moon face, this did happen to my daughter but only ever so slightly and it was actually good for her because she had lost so much weight. If your daughter lost her appetite before diagnosis she will certainly get that back with taking steroids but again it was so good to see my daughter eating well again. They can become a little hyper hen on steroids, again this was wonderful to watch as my daughter had become very withdrawn. So don't get too hung up over the side effects that you read about because the steroids are the first steps to getting your daughter well again.

You are more than welcome to PM me too if you want to have a chat about anything at all.

@SunniG glad your daughter is doing well it's very reassuring to read positive stories as I swear the internet is doom and gloom!

Thank you Remmy. Yes it is such a difficult time having your child diagnosed with a chronic illness so the last thing you need is to read all the horror stories. Parents with a newly diagnosed child needs to hear positive stories on how their child can still lead a normal active life.

Since diagnosis and treatment my daughter has had a fantastic life. She has been skiing with school, French trip with school, Gymnastic classes, trampoline classes.. We have had endless holidays abroad with no issues. She is about to sit her Gcse"s and is feeling fine. In July she is doing the National Citizen service which is similar to Duke Of Edinburgh. She has never had a day off school with her crohns other than hospital appointments.

Treatment has come on such a long way over the years.

Wow that is amazing!! Hopefully my son will be the same and not have this illness interfere with his life too much x

I hope so too Remmy. Our kids become tough cookies and most just get on with it.

Have you yourself joined cicra the charity for children with IBD? It really is a great useful charity.

Have you also heard of Over The Wall?
Another children's charity that do children's camps who have a chronic illness. My daughter went on a 5 day summer camp with them and had a great time doing all sorts of activities. They also do family camps too.

So much out there for our kids.

He is totally unaware he has a chronic condition.. we haven't made a big deal of it with him, In fact he doesn't even know what it's called, just that it flares up every now and again and medication for life.

holding off him googling like I did (and made myself ill) for as long as possible!

@SunniG thanks so much, that's really reassuring-yes it's my daughter & we're on day 5 today of meds. I'm trying to avoid googling for now as, like you say there's a lot of scary stuff that we don't need yet & hopefully won't. That's amazing that your dc has gone 4 years & so reassuring. I guess the people who are most vocal on fb pages & forums are those who are more involved regularly & therefore suffering more.

I normally like to be prepared & absorb as much info as possible about something so this goes against the grain for me-I have the Cicra page open but not looked at it much-will do today. I've just felt completely exhausted every day since the hospital as soon as I wake up, despite sleeping well. Struggling with dh, although he is lovely, he does not really engage in conversation & I feel very much like I'm holding it all.

@Londonnight glad to hear your ds is doing well. Dd doesn't like needles or tablets, but she was great & is coping really well for someone who never had to take a tablet before.

We have an appointment on Friday week to see the IBD nurse so I'm using that as my next milestone to get to. It doesn't help that I've had a really bad year - my mum was diagnosed out of the blue with an aggressive brain tumour less than a year ago & went from a whirlwind to bedbound in no time & we were nursing her at home the last few months until she died at the end of the year. Even all the tablet prep brings back all the grief of that time. I honestly feel like I've spent the most of this last year crying so it's really helpful to hear some hopeful stories. Thank you for sharing x

What an awful year you have had and now this on top. I will say with every trauma anynody goes through it only makes them stronger. It took me many months to come to terns with my daughters diagnosis but that is because of all the negative stories I had read and always thinking the worse case scenario for my daughter. I have learnt from that in my way of thinking about any situation now. There is no rush to come to terms with it, just take each day as it comes.
For your appointment with the IBD nurse I advise you to start writing down any questions you have otherwise you find your mind goes blank at the appointment. One question I would definitely ask is if you can cam contact her at anytime with any issues or questions you have.

It will be so good for you to read all the info in your own time on cicra because tist is how you will begin to understand the disease and the treatment. I found once I knew more about it then it didn't seem so scarey. Definitely good to read about ow far treatment has come on these days.
The other thing you could do is give cicra a call and request a call from another parent who can chat to. They have specific parents for this who they have trained. I requested a call on the early days. That fall did me the world of good to hear all the positive things on how our children can still lead a normal life.

Aleays here if you want to chat. X

I second what Sunni G says about writing everything down. For years I have kept a diary of all hospital appointment, meds he is on, his symptoms, everything related to his crohns. It really does help with appointments.
At one point my son was on many meds, so I made a card up of all the prescriptions and just handed it to whichever medical person asked what he was on. It was so much easier than keep having to repeat and spell out what he was on.

I am so sorry to hear about your mum, sending virtual hugs x

Thanks both, that's helpful -I have started a list of questions & like the idea of cards with meds if needed- may get a sectioned notebook or something to keep it all in one place.

I'll look at cicra today & maybe call tomorrow to ask to speak to a parent volunteer. It does sound like a wonderful service. Dd is tired today & has a sore head but generally side effects have been minimal so think my stress levels are starting to come down

OP I watched my son like a hawk when he started meds (thankfully only One med) and I hated having to give him anything at all, it breaks my heart that it's for life.

he did have headaches but was ok after a while.

sorry you have had a rough year with your mum, things will start to look brighter soon it will help with your daughter is back at school and you are back in a 'normal' routine.

i really enjoy talking to my IBD nurse I told her how I felt personally and she was so reassuring.

my son been symptom free for over a year, if I hadn't of seen his stool test results I wouid have thought that they had made a mistake!!

Is your DD be having an mri scan too? That usually comes next after the colonoscopy.

have a nice day x

Thanks @Remmy123 so far they haven't mentioned mri but will see what the IBD nurse says, she sounded lovely on the phone.

I have found it hard giving her all the meds too but feeling less bad now & her poo started to get better-fingers crossed we don't have to do as many meds once this course is over.

Usually an mri comes after the colonoscopy to assess damage and confirm diognosis (check the small bowel) thats what I was told. That procedure is fine so if she does have one then it's nothing to worry about.

so pleased meds have kicked in!!! That's lovely news x

My dd is still waiting for her MRI - we were told a year wait! She was diagnosed last October.

Glad to hear your daughter is starting to feel better. I remember 2 weeks in when my daughter suddenly wanted to come on a dog walk. She hadn't had the energy for months. Then she actually skipped for a few metres. I videoed her and I remember the elation I felt at just seeing her skip. It was wonderful.

Hope your dd is skipping very soon!

A bright spot today. I'm a childminder & just found out that my mindees dad (who I went to school with), is actually a proper IBD meds specialist. He knows the consultants & IBD nurses really well & offered help anytime we need. Such a relief to have him as a contact if we're somehow stuck. He's recommended to keep diary of food & toileting so going to print the Bristol stool chart out for dd & get her to log each movement which helps give me a sense of control. I just thought he was some sort of pharma sales! 😬

Dd still doing well & I'm feeling a bit less stressed. Looking forward to a quiet weekend - we had a friend staying last weekend & people coming next weekend-none of it great timing but long ago planned. Hope everyone else is keeping well

That's great @buckeejit to have that connection, I hope that was some comfort to you!!

good ideas to keep track of her stools / food diary. Personally for us food isn't an issue (currently) as he eats anything and no issues.

he has had x2 flare ups .. once at 9 when his baby sibling was born (never diognosed as it went away) / second at 11 when he started secondary.

Hope you and Dd are doing well today xx