get it out! thread 3

[littlemaemae]

I have moved this to child health board as I don't think aibu is appropriate anymore.
What began as a quick question has become 2 now 3
The support on these threads has highlighted the best qualities of mumsnet and I am so grateful to every lovely person who has supported me so far!

Delurker here too...lots of love. I've been following this and sharing your pain and frustrations...I think you are truly amazing. Hope you all can get the rest you need xxx

Another delurker who's been with you through all three threads and is SO happy to hear that things are, at last, looking brighter for you and your little one
I hope that you can keep up the good connections made at the hospital, and that they will learn from this...! All the very best to you and your family

Such great news!! Posting all the way from Japan where I'm here for a business trip! (cherry blossoms... Sort of).

You've been a great fighter and advocate for your daughter! You deserve a Holliday!!!

I am staring to think she got so poorly over the last few days because she was overdosed inadvertently
She has developed a very angry rash on arms, eyes and cheeks. Similar to the one she had in hospital but more severe. Very red and inflamed. (Not meningitis rash, I have done the glass test)
I'm going to give antihistamine and see if that helps. I dread to think what the stuff has done to her body.

Poor little girl make sure you take pictures so you can refer to them when you take your case to PALS, op.

That sounds nasty - it's basically what Leics said isn't it , that she'd been kept too long on the Kleen Prep ? You mustn't struggle with this on your own - you can't trust the GP, so maybe you need to go back to the Leics hospital for advice ? A daunting thought but you don't really know what you can do to help her. The manufacturers will have a pharmaceutical advice dept but possibly not for mere patients to access.

Have you got a phone number for the ward at Leicester? May be worth a call to ask for advice about the rash. They may be able to arrange for her to be seen.

I'd take a photo of the rash.

The Kleen Prep won't have damaged her body. It's basically extra strong Movicol (aka stool softener with electrolytes to prevent dehydration). The rash is mysterious though. What did they think it was when she was in hospital?

Also, what's the plan to keep her pooing now she's empty? Have you been given anything?

Not sure whats in kleen prep? Any nasties? What about the side effects?

She had the bloating, gas, rash, itching and redness. She also had swelling of face and limbs. It started as soon as she would get hooked up to it. Be worst in the morning and then gradually reduce towards the afternoon/evening when she was put back on.
She also had very painful legs and zero energy. Couldn't really get out of bed towards the end.
She is a different child today having had a night off of it.
They told us no laxatives for a while and then to go only 2.5mls picosulfate if she was having problem.
They are assuming she will go on to poo normally ASAP... Maybe she will. I want to give her a few days to settle down before I get in touch with the hospital and I can get her continence nurse to visit very soon

She also doesn't know when she is doing a wee and can't actively choose to do a wee. So i think she might just need a week to get every thing back to normal

Little Mae I'm delurking but have followed from start. My DS had some issues that thankfully resolved but I'm so sorry for the horrible time you've had and v glad your tenacity has paid off.

I googled kleen prep and whilst the info said no reports of any toxicity from ingredients, some people are allergic to one of the ingredients. I think it's best to get advice over the phone from Leicester? Antihistamines sound like a good idea.

Have you heard of Eric the support charity for children with constipation or other digestive system conditions? They have message boards too.

Hi mae been thinking of you. Hope dd is enjoying her toys etc :) lovely to hear her happy and playing. Glad you got a good sleep.

I don't mean to sound negative and am debating posting this but have to say it all sounds a bit chaotic - like do they have an actual plan/point of reference for if she doesn't poo as normally in next few days? Or is it like a back to GP situation? Am honestly not trying to rain on your parade when you are enjoying being home but I wish you were getting more support and had a lovely plan. Am just thinking how my lung stuff is delt with and I have clear plans, clear points of reference if things deteriorate and have meds I can up and down myself according to my personal plan. I just don't want you left alone that's all :) Hope this makes sense. Not read every single message so I might be missing something and been unwell with lungs myself so not on top form at keeping up!

I am thinking of you and wishing you well :) x

I think a PP mentioned her child's problems with peeing , maybe in the second thread. Good that continence nurse is coming. Might be something relevant there.

I was going to delurk to give you a 21-gun salute, but it seems that your DD will be providing a 21-bum salute with all that gas!!!

Have been so worried...hopefully this is the start of getting everything sorted.

Littlemaemae have pmd you..

There's a lot of evidence to suggest that gut health and the amount and variety of bacteria we have in our guts plays a huge role in many aspects of health (immune system and mental health to name just two). This is a relatively new area of research and doctors are trialling fecal transplants (putting healthy poo into patients with certain issues). So far it seems to be very successful.

I am not a medical professional but I have read about this subject and been to a seminar. I just wonder if your daughter could be feeling poorly/having other symptoms because her gut bacteria has been wiped out by all the meds?

Might be worth looking into at some point.

Get sone probiotics powder for kids. It helps keep poo soft. Given her issues she likely needs sons kind of softening regimen

Mumteedum could you link to the Kleen Prep info on ingredients and allergies?

I was keeping very quiet on this thread as I would have added to the anxiety and not to knowledge, but Kleen Prep was a horrible and pointless experience for me, and I do wonder if I had a reaction to it. Was utterly futile as it didn't actually clean me out, just made me vilely sick and poorly, so I couldn't even make it to the hospital to do the colonoscopy it was for. Grrrr, bloody horrible stuff for my body anyway!

Mae FYI I know you're not in the thick of it anymore, so hopefully I won't have added to your stress. But just in case, I have a genetic condition, and it was thought that it was now effecting gastrointestinal stuff, but a lot of medical procedures don't quite work the same, so it's not at all similar to your DD x

xpil.medicines.org.uk/ViewPil.aspx?DocID=15666
www.netdoctor.co.uk/medicines/digestive-health/a6965/klean-prep/

Hope mini Mae feeling better now she's finished with kleen prep. X

www.eric.org.uk/

Littlemaemae, I am delighted to read your update! I really hope that this is the start of much better health for your DD.

I am glad she is going to see the continence nurse-our DS's continence nurse is fantastic and really helped him to understand and deal with his continence issues.

Good luck with it all, and remember the poo posse will always be here for you should you need us again!

How's things today?

I will try to break back into my account on the website to have a read MrsO, thank you

Nice to hear from you giraffe I hope you are feeling much better.

The gut bacteria thing does sound like something to look into. As I can imagine that it is all out of balance, so that you for those suggestions.

I have looked on the Eric website before but found it quite limited and doesn't load well on mobile. My hands are too small to use the iPad without serious aching!

I am feeling pretty rubbish today. Dd kept me up until 6am when the sun came up. Then I had to get big dd off to school.
She was having pain/ bad dreams then was wide awake from 11 onwards.
Her rash has gone but is still pretty distended but is doing well. Better than I thought she would have done.

The continence nurse is going to continue to support us at home and come and check her if the distension hasn't settled down on Friday.
Her ribcage looks very wide and pushed out, not in keeping with her frame. So she thinks she might be pretty swollen inside from all the medication.