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

Yes I agree it is great to know you can seek advice and support when needed. It certainly makes the diagnosis a little easier to deal with knowing that kind of support has been offered.

I remember when my daughter was diagnosed and all of a sudden all these people came out of the woodworks who was living with IBD or people we knew also knew of IBD sufferers. My goodness the negative stories people seemed to love telling me. There was always that..... Oh no that is an awful disease, your daughter will have to watch her diet and will have to have a stoma. Bless them they really don't have a clue how far treatment has come on. It was part of the stories I had heard that contributed to me feeling so low about my daughter s diagnosis. Those same people are quite shocked when they hear how well she has been. It's almost like the penny drops that treatment really has come on. I don't listen to anyone anymore as I have learnt that each person is so different with the disease.

On a positive note my daughter starts her Gcse"s tomorrow and she is absolutely fine health wise. She has so much to look forward to once these exams are out the way. We picked up her prom dress yesterday. We booked to go to alton towers once exams are over. In July she is using her free time to go on the National Citizen Service which is similar to Duke Of Edinburgh. Then we are having a week awsy in Devon with another family. So really she has so much to look forward to.

Hope everyone else's children are doing well.

@SunniG I've prob only told around five people about my son as one person I told said something awful about it and I ended up in bed all weekend in tears!!!! So we keep it to ourselves and immediate family.. I also couldn't be bothered with 'change his diet to blah blah...' just uneducated comments.

Amazing she feels so well for her GCSE's i hope they go well for her!

Oh yes I often get the comments of.... Oh I guess she has to watch what she eats as its all to do with diet. If only it was that simple and diet was the cure. The only thing diet has to do with IBD is that when they are going through a flare some foods are best avoided but otherwise when they are well they can pretty much eat what they want. Most people are often shocked by that.

Remmy most people are uneducated about IBD so you have to learn to take what they say with a pinch of salt. Life for your child really does become the norm and I would say after around 18 months after diagnosis and your child is well is when you stop waking up of a morning with your child's illness being the first thing on your mind.

That's so good to hear positive stories. I have been feeling quite low about it all, had an awful day on Friday as our GP wouldn't give us an appointment to check her blood pressure even though it said in the consultants letter than she needs weekly checks while on the steroids & id been trying to get a nurse appointment for a week. So incredibly frustrating. A community nurse friend ended up bringing a cuff from work & checking it. So pissed off with the GP though.

I feel so clueless about everything but does sound like it differs so much from person to person, I'm not sure how helpful it is to hear all the bad stuff even though I would normally like to be prepared. Dd still doing ok & so nice to see her with some energy again. Now I just need to find some for myself!

That's rubbish about your GP!!!

It's still very early days for you.. I am a year on and I am not the emotional mess I once was.

as mentioned before, once she is back in school and happy in her routine and yours it will feel much better. My son had to self isolate (covid) before his colonoscopy and it just made it worse him being off school!! Can't explain why!

look after yourself x

Buckeejit that's really not good enough with your Gp. I remember when my daughter started on steroids and the consultant wrote to our gp to request weekly check ups of blood pressure and urine checks checking for glucose in the urine. The gp booked us in with the nurse each week,we had to take a urine sample every week.

It's understandable that you will have down days. It was 18 months before I fully came to terms with the diagnosis.

@SunniG Hi Sunni

i hope you don't mind me messaging but does your daughter have low iron on occasion? My son Ferratin has just come outside normal range and he says he has been feeling tired for a while. I am waiting for his nurse to come back to me which can take a couple of days but do you give your daughter anythjng for iron levels as some can upset the tummy.

i am also having to do a stool test so hope that this isn't a flare starting.

thanks

Hello Remmy,

Yes my daughter has deficiencies off all sorts from time to time. Sometimes iron, vitamin D, etc. She has blood test for every review he has which is every 4 months, this is when anytjing lacking will show up. The consultant then writes to our gp to prescribe whatever he requests.

Has your son just had a routine blood test? Who has requested the stool sample? Children with IBD struggle to absorb essential vitamins (completely forgot the word I am looking for) anyhow this is regular blood test are done. This way things can be kept an eye on, then anything going on can be dealt with and corrected. Don't worry too much about your son being tired because that happens with my daughter sometimes it doesn't necessarily mean your son is having a flare. If the stool test does come back with a high calprotectin then it is great that it is caught earlier and can be treated.

I don't give my daughter any other supplements other than what the consultant prescribes. This was the advice from the consultant. I definitely wouldn't give iron tablets as yes you are right can upset the tummy.

Feel free to get in touch again about absolutely anything. I'm no expert but have learnt so much over time.

Nutrients is the word I was looking for, children with IBD may have problems absorbing nutrients which is why sometimes they have deficiencies. My daughter has to have an annual B12 injection.

Please also remember that children with IBD are entitled and should have an annual flu jab. It must be the needle not the nose form. Hopefully you have been told our children can not have any live form of vaccines.

Thanks Sunni

so the blood and stool test is a 6 monthly routine check abd it's done at our GP as closer than St Thomas' in London. They then get emailed to the IBD nurse.

the just text actually to say then can do an iron transfusion but wants to see all blood results first.. I only gave her the ferritin as that's all I had from the GP.

i give him a teen multi vitamin with omega 3 - tbh multi vits only contain a small amount of vitamins so probably not helping much - approved by our consultant so it's interesting you was told different?!

Also no I haven't been told he can't have the nasal flu vaccine (he had that already) why wouid that be?

Thanks again for your help its much appreciated

My daughter had mildly low ferritin - not low enough for transfusion. The GP prescribed Sytron syrup which is gentler than tablets.

Ferritin is 26 and the range is 30-300 So just outside the range - I'f he doesn't have the iron I'll ask for an alternative

Hi again Remmy, my daughter had an iron transfusion on diagnosis, it did her the world of good. Her energy levels went back to normal and no longer looked pale.

Actually it may be different for your son where the live vaccines are concerned as I'm not sure what drugs your son is on. My daughter is on biologics (humira) biologics gives them a weaker immune system so live vaccines can be dangerous. May be the case if they are on steroids too.

I would go for the infusion for the iron as it gets into their blood stream quicker so a quicker response.

Thsnks again Sunni

Managed to get stool sample sent so will just wait to hear back from nurse now based all On his results

his medication isn't suppressing immunity so that's why we haven't been told re vaccines

@buckeejit how are things?

Hi all - sorry @Remmy123 must've missed that notification.

Dd is ok but not as good on the steroids as we'd have hoped so they've increased the mesalazine & put her on azathioprine. She had an iron infusion on Wed too as bloods weren't great & low reserves. Encouraged her to eat 3 spinach leaves tonight with her steak!

She's mad hungry, still tired & have noticed that she's started sweating more so will have to get some sort of deodorant/anti perspirant. Other side effects like sore head & joints. Just wish she could feel normal & have energy.

I'm still trying to read up bit by bit but there's so much (conflicting) info.

We're off to a festival in 2 weeks & slightly worried about all that. Going to order a toilet tent just in case -she loves the festival & wouldn't want to miss out but last year was lovely when it was at 30% capacity. Prepared for spending more time at the tent if needs be.

Looking at probiotics now & wondering if the microbiome testing is any use. Or any other complementary therapies-if anyone has any positive stories?

Poor thing! Sorry she isn't 100%

probiotics defo worth it - they can't do any harm

alternative thereapies I am not sure about to be honest.

maybe she needs biologics if her current medication isn't doing its thing? Or maybe it just takes time to kick in x

.... just remembered tumeric and black pepper tablets supposed to help

Thanks Remmy- I've had them in my basket a while, just feel sort of bad making her take even more tablets. Going to order now while I'm thinking of it.

Just looking back about your ds iron levels - I've just been this morning to buy dulse from my dealer. It's a kind of traditional thing here for some but very marmite - I love the stuff - it's dried seaweed & tastes salty but think it's great-when I was pregnant my iron levels were 17 & HV was amazed & thought I must've had a great diet but am sure it was down to the dulse. Like I say most of my English friends aren't keen but if you want to try it, pm your address & I'll send a bag

Thanks so much .. it's worth a try, but for a fussy eater can I disguise it?

A lot of wee ones like it finely chopped up & mixed on when we make flatbread, or if you make your own bread at all. I'm sure you could just chop & add to some savoury dishes too

Hi buckjeejit,

Sorry to hear your daughter is not doing brilliant on the steroids, they don't always work for everyone. It maybe that the consultant goes down the line of putting your daughter on a liquid diet to give the gut a rest. How is she after the iron infusion? That should give her a good boost.

They can get fevers usually they occur at nightime, my daughter used to get them all the time.

Hope she settles down soon.