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!

Good grief.

Thank you for the kind messages everyone xx
I said to her It's not a dietary issue, I have been told not to alter her diet and that she is most likely missing cells in her bowel, a disease that she may need an operation for. As I have told her before. I hope that put her in her place.
I probably wouldn't have taken it so badly but this morning it was suggested she was trying to 'pull my heart strings' when she was crying. And I am tough with all that I know kids cry then get over it very quickly. I tried to explain that I don't know if she is ill or not, that was my concern and it was dismissed.

I went to the office to ask about the school nurse and the deputy head overheard and she has arranged for food to be heated up for her at lunch which I think was really kind of her.
I am calling her nurses in a minute to speak to the school.

It's all so frustrating because i want to try different diets but I have to wait for the dietician first.
And having had an ED my whole life although I am now recovered, I really try my best to have DDs eating normally with it being no issue. So it is a sore subject

So glad you told them to butt out. Well done you for standing strong under criticism! Try not to beat yourself up for being emotional and taking things personally, its perfectly human to feel judged and to react emotionally. Just keep reminding yourself they are ignorant and wrong (if potentially well meaning) and that none of this was your choice, your fault or your decision.

Glad you are seeing the dietician, and asking to see the school nurse. They are good people to have on side.

I once had a registrar dr at one if the well known hospitals launch into a tirade about diet. Re my DD. She hadn't read the notes. However she was fully informed by the end of our conversation!

It's annoying.

Good for you for putting her in her place! Schools attract these pocket dictators somehow. Not teachers usually, it's the wannabes.

I had some witch (playground supervisor ffs) DEMAND my son show her "these burns" after having asked him more than once about his "non regulation shorts"

Yeah they're non flaming regulation, he's not allowed to wear synthetic fibres for a minimum of 2 years....

Sadly my son wasn't able to defend himself and felt obliged to show her. The school took it mega seriously, I think she got a warning, but I can't help thinking that if this had been a male member of staff I guarantee he'd have been fired.

Please please please put in a top drawer formal complaint. The lunch box is not her concern. Ever. And as for the heart strings comment? She should be working with widgets. Anything except human beings basically.

Tinpot pocket dictator.

I'm thinking of you maemae. Xx

Your poor son Hissy. I'm sure it was common knowledge what he had been through too, so that was plain nasty of her.
There is always somebody who appoints themselves 'uniform police' to feel important.
I have worked in schools and have seen some incidents like this that I still think about to this day so I can imagine how your family felt.
Very interesting about the synthetic fibres after a burn. I did know that.

She has a nice big poo this afternoon.
We can relax for a few days! I'm sure you know the feeling hive.

I think I am going to put together a---- booklet containing photos of her at her worst and in hospital and a list of all the horrible treatments she went through and give it to the teacher. Then say good idea about the wholemeal bread

Perhaps a but passive aggressive, oh well...

I did not know that about the burns, I mean

Haven't posted for a while - so glad to hear about the poo! How many Movicol are you on now?

Well done for pushing back at the nursery too. I've found that often everyone thinks they are an expert in healthcare despite all their knowledge coming from something their gran said once or the Daily Mail

Haha wolper that's true. The dailymail will have us believe scarlet fever will kill off our children's generation. I'm just glad they haven't found this thread. They steal most their stories from MN
We are on 6 movicol now.

Great news about the poo! That's fabulous! Yay!

There's so much about burns you don't automatically know, until you know sadly! It's to allow the skin to breathe. No jeans either as that abrasive ( although tbh, where his burns were worst wouldn't have been in high friction areas) the thing that still amazes me is his thermostat. It's not expected to be back to normal in under 2 years, and there's no sign of it happening as we approach the 2 year mark. He needs a fan on at night, pretty much year round, will kick off covers and regularly wake up in the nip having stripped off in his sleep

That never happened before the burn, but he is wHo he is and looking at how well he's healed, we genuinely can't complain.

Im so glad little one seems to be getting through this, I know you can't relax yet, but at least you have teams of people aware now and let's hope on their way to a proper diagnosis.

It's just me and ds, my family are less useful than a chocolate tea service, I'm very defensive of him, we're all the other one has, so while I try not to be "that mum" I'm really clear on boundaries and him having a say in how he's treated. Poor bugger has had more people stare at his bits than most, but all the professionals were really great at respecting him and making sure he was comfortable with everything going on around him. There are some fabulous fabulous people in the nhs.

I most certainly do know that feeling little! And now the cycle starts again. What ever you have done, it's worked. It will work again.

Hissy sorry about your family. How upsetting. I hope you had lots of support from friends instead.
I am really interested in finding out about burn now I've heard your story.
That will keep me busy on google for some time!
I was a single mum with my big DD and I am still extra defensive of her. It is different when you are alone. So I know exactly what you mean.
Hive how old is your DD now? I'm sure you have said but I'm really sorry it has slipped my mind
How does she feel about her situation, does she take it in her stride?

Friends are amazing! People who owe you nothing and just do the most amazing things. Both ds and I were genuinely moved on a daily basis!

I agree, the treatment you're giving little one is functioning, certainly a massive improvement. Thinking of you both as everxxx

A teenager - We've been doing this a long time. She doesn't like it, but accepts it's necessary. She much prefers the movicol solution to the others on offer like the surgical solutions as others have mentioned, washouts of various types.
You are very welcome to pm me for support now or in the future.

Just catching up. Hooray for the poo!!

Great news on the poo! Hooray!

Delighted to hear of that poo! Bless her, poor little mite.

Hissy am horrified at that story of that horrible person insisting on seeing evidence of your son's burns. . Good to hear that you have encountered good people involved in his care.

Great news things are still moving for your DD!

Afternoon
We have an appointment with the gastro next Friday, dp managed to sort it out, so Welldone to him.

Dd told us last night that they have also been refusing her milk at snack time and she has the drink from her lunch bag while the others have milk.
I gently asked what happens at snack and said she says she isn't having milk and the lady shat it so I do believe dd. She says she had milk for the first time today
A lunch time supervisor came to me after school quizzing about if the food I give is 'good for her' fuck sake, we are talking about a Peti filous yogurt.

Speaking to the head on Monday. I know it is probably petty and I need to get a life, but I am quite offended and feel a bit picked on

You probably didn't mean ' the lady shat it ' but I can't work out what that might be phone-language for ! Nursery sounds quite intrusive and ill-informed. Sorry you've got this to put up with as well. Good news about the gastro consultant - make sure you mention the consultant who got her age wrong. Still thinking about your little girl and hoping to hear she has a diagnosis and a plan.

I would go in all guns blazing!

They have no right to make decisions like this for your child

THey have no right to judge your flaming lunch box, nor to gossip and talk bollocks about your dd.

They don't know a thing about anything, and as you've clearly said to them that the current diet she is on is reported with the medical teams she is under and the instruction is not to change anything without them knowing.

Milk - as far as I know- is more likely to cause laxative affects in intolerance than constipation. The main thing you need to do is to keep little one hydrated, that's not rocket science and by them depriving her of fluid, they are actually more likely to be affecting her health than anything else.

Go in and roar at them, write a letter of complaint and make it damned clear that THEY are absolutely out of their competence zone, and to get back to what they are good at, whatever that is, and leave you to parent your child and negotiation with medical professionals. If you have any instructions for them, you'll let them know. Until that time they need to back up and leave things as ou have them.

You have to pull her from that nursery, it's such an unprofessional setting.

Well, perhaps not roar, but absolutely and calmly put them exactly in their place.. :)

Thanks Rachel I was horrified when he told me, casually mentioned it to me in the morning as I was getting ready. Even he was surprised at my volcanic reaction

Everybody in his year knew what had happened, it was a huge thing, a massive shock for all the children and we had to send a few messages to the class to reassure the children that he really was going to be ok. Some of hs best friends saw him in person very early on and their poor little shocked faces will stay with me for a long time. We kept all the cards and drawings they sent him in hospital, he was so emotional to get them, it really helped him.

Sometimes the worst of times shows us the best of people. :)

She did shit it footle
I think we all want to give hissy's son (and hissy) a big hug, what an inspiration he is.