Handhold please, son in hospital again

[Nogodsnomasters]

We were here 10 months ago admitted for 4 days, countless tests done on my poor asd boy and eventually diagnosed with coeliacs disease. He started vomiting huge amounts at 5pm and then diarrhea from 6pm, he then fainted at 8pm so we rushed him down here. He's terrified, I'm terrified. I have major health anxiety, complete total phobia and my poor boy has a blood phobia. Thank god my husband is here or id honestly need sedating.

He's had an anti sickness melt, he's had one bag of fluids, he's had an ecg which came back okay, they've taken bloods which even with a play therapist was fucking traumatic for all of us due to his phobia.

I'm beyond exhausted, I haven't eaten in hours but I haven't the appetite due to the anxiety anyway. We're waiting for a bed as they're admitting him again ffs.

I'm honestly a wreck. I'm just looking for a hand hold and some empathy tbh.

I can't stand them either and I've seen far too much of them the last 12 months 😞 the ASD definitely makes it so much harder

Oh wow that's bad! Do you ever get a temperature with it? He's now starting to have a mild fever.

Thank you so much ❤️ currently squashed up beside my dh in a single pull out bed and sleep is not likely but at least my boy is.

Thank you for being gentle about this. I've had hypnotherapy last year unfortunately it hasn't stopped this. I've also had CBT and talking therapy 😞 I do have PTSD from a medical emergency trauma 10yrs ago so I think maybe EMDR might be my next move when I get time to breathe I guess xx

Bless you. It’s a very very difficult thing to live with. I’ve had lots of EMDR and can tell you it’s excellent for trauma. I would definitely address the trauma then perhaps move back to the hypnotherapy or cbt afterwards.

Nothing prepares you though for a sick child does it. I’ve had some of my darkest days (nights are the hardest though) where you are now lay on a parent bed feeling desperate. I think I’ve nearly lost my mind a few times 😔 so I feel you. One thing that helps me a bit is moving. Sounds crazy but literally get up and shake all your limbs (preferably in a bathroom or somewhere private!). Give yourself a butterfly hug (Google it) and do some EFT tapping or some EMDR tapping (Google it also). Helps discharge some of the stress.
sending hugs and healing x

Hospital night times are horrendous so you have my sympathy. My son was diagnosed coeliac too after a horrible 5 day stay with suspected appendicitis
He then went back with d and v. Was noro caught in the hospital.
It WILL get better and you can do this. You're not alone in real life and have the lovely MN vipers here too. Keep messaging if you need a prop up

I have gluten intolerance and if I eat it, it affects my rheumatoid arthritis and I’m bed bound for days. It makes me nauseous as well.

My friends dcs have coeliac and she’s violently ill when eats it accidentally.

Has he had a colonoscopy? Another was found to have chrones as well as coeliac? Just in case there is something else underlying.

good luck being in hospital with a sick child is always a worry x

I hope you had a tolerable night and managed to get some rest if not a little sleep. How is your DS today? I hope he is feeling a bit better. Take care of yourselves and we are still here for a handhold.

I really appreciate your message. Glad to hear that EMDR worked well for your anxiety, I think it's definitely something I need to do this year because the other stuff has just been like a sticking plaster rather than any true healing.

God I hope your Dc is okay now and you're not still going through this, it's hell on earth. I've had 1.5hrs broken sleep

Thank you so much, I hope your boy is doing okay now?

How is your dc this morning? I remember when dc was in hospital I just forgot about myself as nothing gluten free so make sure you take care of you also. My family would stand over me making me at least eat what they had made.

Thank you, I have had 1.5hrs broken sleep. They've just disconnected him from the overnight fluids so I'm thinking a doctor could be around shortly. Waiting on a cup of tea coming from lovely nurse.

Hope your ds is soon on the mend.

I remember my aunty with coeliac would be ill from some spices, apparently sometimes flour is added to prevent caking.

Hope your DS is feeling better this morning and you can all go home soon.

Thank you I really really hope we're going home today too. He's managed to fall back to sleep after getting disconnected from drip. Still having loose stool but hasn't vomited in 11 hours which is a relief.

@Nogodsnomasters he's doing well thanks. He's got to grips with diet and feels so much better but does get incredibly sick if he gets glutened. Feels brain foggy too. I've perfected gluten free cake though so he's happy now to feel better as he realised how low level crap he'd been feeling. How are things now ?

Hope you will be on your way home soon OP 🤞🏻.

I’m sure the other coeliacs know about her but just to say Becky Excel’s recipes (books and online) have made my life so much easier!

Sorry to hear this OP. If your DH is there are you able to go back home and see to your other child? Your DH can keep you updated by phone. Perhaps this would be the best solution for all of you at this present time as you seem to really struggle in the hospital environment.

Thank you, I have nipped home once last night before we were brought to the ward and once this morning to check on her with my sister and to get pyjamas/fresh clothes and to give me a bit of a break but my ds is very much a mamas boy and doesn't want me to leave his side much while feeling this way and so I then have mummy guilt when I leave him out of my own selfishness of anxiety.

They said he could go home later if he ate something and kept it down but he's refusing to eat and says he feels really nauseous so they may give him another anti emetic med and keep him overnight again. So we're still here for now. He's still having loose stools, the drip is down now and he's drinking ribena and keeping it down. The tiredness is getting to me and only making the anxiety worse.

Have you tried getting him to eat something you’ve brought in?

ds2 is coeliac and also asthmatic which hospitalised him on a few occasions when he was young.

ensuring he was provided with gf food was a task in itself, as he’d start in the high dependency unit where a gf meal would be booked, but if he moved to the normal ward before mealtime his meal wouldn’t go with him. There were occasions when he lived off baked potatoes from the canteen the parents and staff used, plus treats I brought in.

Oh yes it's items we've brought, there's no way he'd eat hospital food even pre-CD barring maybe chips lol. He can't have his food touching, no sauces, very sensory etc.

Well we went a whole 18 hours without vomiting but then it returned - and they'd been plying him with ribena for the sugars so the whole thing was all red liquid, talk about terrifying. He had another anti emetic and he's staying overnight again. My head is banging.

Yes being glutened can cause worse symptoms than the symptoms prior to diagnosis l Remember it’s a disease, so the smallest crumb of gluten causes a severe inflammatory response. It’s a really bloody rubbish disease and very overwhelming.
It’s lifelong and a massive responsibility for the parents/ family/ school etc to prevent cross contamination.
I hope your son is home soon and sending positive vibes to you. Coeliac UK is worth joining,very helpful and supportive. X

There’s also a private facebook page you can join which is very helpful.

Hope you’re all home again very soon.