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Original poster

Handhold please, son in hospital again

65 replies

Nogodsnomasters · 19/01/2025 01:14

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.

OP posts:
minipie · 19/01/2025 01:15

Gosh very scary. Huge hug for you. I hope everything turns out just fine for your lovely boy and they get to the bottom of it quickly xx

Original poster
Nogodsnomasters · 19/01/2025 01:16

Sorry that should say I have complete total hospital phobia. I can't bear to be here. It's too hot.

OP posts:
Original poster
Nogodsnomasters · 19/01/2025 01:17

minipie · 19/01/2025 01:15

Gosh very scary. Huge hug for you. I hope everything turns out just fine for your lovely boy and they get to the bottom of it quickly xx

Thank you very much. He's sleeping right now until the next time the nurse comes in. I just hope they get us a room soon.

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minipie · 19/01/2025 01:18

Hospitals are stressful. Please do try to eat and drink something as you need to be ok for your boy x

minipie · 19/01/2025 01:19

Can you get earplugs somehow- I find they help with the hospital sensory overload

twistingmymelons · 19/01/2025 01:21

Has he eaten gluten? - I get very ill with it. I am a Coeliac too. I understand the hospital thing too. Have you got any podcasts to listen to if you are to stay with him. Getting some food or at least a hot drink will help. Can your husband get something for you?

TheOracleatDelphi · 19/01/2025 01:24

Hugs 🤗 I really feel for you and your poor boy, I have total hospice phobia these days so I totally get it plus the worry of your son. You are in the right place. Really hoping it's nothing too serious and you are both home tomorrow. I'm assuming he may have ingested some gluten perhaps? Or norovirus is rampant so might be that but they will get to the bottom of it there at least. Xx

Izzy24 · 19/01/2025 01:25

Also coeliac and also wonder if he has been glutened? Cross-contamination?

Hope he feels much better very soon.

(having my first pain free day in over a week for that reason).

Original poster
Nogodsnomasters · 19/01/2025 01:30

minipie · 19/01/2025 01:18

Hospitals are stressful. Please do try to eat and drink something as you need to be ok for your boy x

Drinking plenty but not eating unfortunately, my anxiety is just too high for it. Thank you

OP posts:
Original poster
Nogodsnomasters · 19/01/2025 01:31

twistingmymelons · 19/01/2025 01:21

Has he eaten gluten? - I get very ill with it. I am a Coeliac too. I understand the hospital thing too. Have you got any podcasts to listen to if you are to stay with him. Getting some food or at least a hot drink will help. Can your husband get something for you?

This is the thing I really don't think he has, we are so strict with his food, if it is gluten it would have to have been accidental cross contamination. He's been gluten free for 4 months as the diagnosis took a long time.

OP posts:
Original poster
Nogodsnomasters · 19/01/2025 01:33

TheOracleatDelphi · 19/01/2025 01:24

Hugs 🤗 I really feel for you and your poor boy, I have total hospice phobia these days so I totally get it plus the worry of your son. You are in the right place. Really hoping it's nothing too serious and you are both home tomorrow. I'm assuming he may have ingested some gluten perhaps? Or norovirus is rampant so might be that but they will get to the bottom of it there at least. Xx

Thank you very much. The phobias are horrible to face, the anxiety never dissipates. My smart watch told me I'd completed my zone goal for the week because my heart rate was high for so long it thought I was fucking exercising.

OP posts:
Original poster
Nogodsnomasters · 19/01/2025 01:34

Izzy24 · 19/01/2025 01:25

Also coeliac and also wonder if he has been glutened? Cross-contamination?

Hope he feels much better very soon.

(having my first pain free day in over a week for that reason).

Do you think cross contamination would cause such severe vomiting and diarrhea? It could well be or it could be a bug. I just can't believe how quickly he got dehydrated.

OP posts:
twistingmymelons · 19/01/2025 01:39

It depends on how sensitive he is. Does he eat GF oats - I cannot tolerate them and get symptoms. Is it possible he could have been given something at school - bread or something from another kid ? It sounds like he has eaten it. I get vomiting very quickly after eating it and was told I would have to be admitted if it didn't stop. The fluids should perk him up a little.

Original poster
Nogodsnomasters · 19/01/2025 01:43

twistingmymelons · 19/01/2025 01:39

It depends on how sensitive he is. Does he eat GF oats - I cannot tolerate them and get symptoms. Is it possible he could have been given something at school - bread or something from another kid ? It sounds like he has eaten it. I get vomiting very quickly after eating it and was told I would have to be admitted if it didn't stop. The fluids should perk him up a little.

He can't have GF oats no. He's had an anti sickness medicine so I'm hoping that keeps it stopped. He's to get a 2nd bag of fluids shortly and another blood test.

OP posts:
Izzy24 · 19/01/2025 01:50

Yes reacting to gluten can be as severe as this (as @twistingmymelons says.

But yes it could be an infection. CD is rubbish.

Original poster
Nogodsnomasters · 19/01/2025 02:14

This reaction is definitely worse than pre diagnosis symptoms in terms of severity, but I've heard the longer you're off gluten the worse your reaction to being glutened is - would that be correct? Coeliac disease is a bag of absolute shite.

OP posts:
twistingmymelons · 19/01/2025 02:19

Yes, in my case the reaction post diagnosis is more severe. I never used to vomit just felt nauseated all the time. Now I have profuse vomiting. it is so difficult to ensure none is eaten, it's so easy to eat it inadvertently. Yes you are right it; is a complete bag of shite 😂

Original poster
Nogodsnomasters · 19/01/2025 02:41

twistingmymelons · 19/01/2025 02:19

Yes, in my case the reaction post diagnosis is more severe. I never used to vomit just felt nauseated all the time. Now I have profuse vomiting. it is so difficult to ensure none is eaten, it's so easy to eat it inadvertently. Yes you are right it; is a complete bag of shite 😂

Thank you that is good to know. I suppose we'll know in a few days if anyone else in the household gets sick whether it's a bug or glutening. His blood results have come back no infection markers so nothing bacterial, liver enzymes are okay (this was an issue the last time he was hospitalized before diagnosis so really relieved about that part). Still waiting on a bed unfortunately.

OP posts:
Difficultwill · 19/01/2025 03:02

Sending you and your DS hugs and a hand hold. Hospitals are so stressful for you and your child. I hope he feels better very soon.
Once better can I make a suggestion. You organise with the hospital to bring your son in when he is well for a look around. Even if it is just coming to the hospital for a drink and gluten free biscuit in the cafe. This, over time will get him used to the hospital. Then progress to going onto the children’s ward to just say hello (this will have to be planned with the ward to check it is ok). The blood phobia is more difficult. Is it the pain of blood taking or the sight of blood? If it is the pain then I would suggest keeping some EMLA cream at home. This is the skin numbing white cream used for kids. Then you can put it on before going to hospital so the skin is really numb before they get round to taking blood. How old is your son? I wasn’t keen on blood as a kid and then my dad took a slide of blood from a cut and we had a little microscope at home and I looked at the blood under this. It was fascinating. YouTube will have videos of blood and maybe your son will be interested.
There are children’s books about going into hospital so it may be worth getting an age appropriate one of these to read to him once a week or so to get him more used to hospitals.
All the best for the current flare up. Make sure you do eat something or you will be ill yourself or faint. Do you have other children or can your DH come and take over so you can have a break and some food? Can you tag team with him so you can get some rest.
All the best

Deebee90 · 19/01/2025 03:02

I hope he recovers soon. I have a gluten intolerance so not celiacs but it still affects me and certain gluten makes me have D&V horrifically I’m hospitalised each time. It’s torment .

Original poster
Nogodsnomasters · 19/01/2025 03:08

Difficultwill · 19/01/2025 03:02

Sending you and your DS hugs and a hand hold. Hospitals are so stressful for you and your child. I hope he feels better very soon.
Once better can I make a suggestion. You organise with the hospital to bring your son in when he is well for a look around. Even if it is just coming to the hospital for a drink and gluten free biscuit in the cafe. This, over time will get him used to the hospital. Then progress to going onto the children’s ward to just say hello (this will have to be planned with the ward to check it is ok). The blood phobia is more difficult. Is it the pain of blood taking or the sight of blood? If it is the pain then I would suggest keeping some EMLA cream at home. This is the skin numbing white cream used for kids. Then you can put it on before going to hospital so the skin is really numb before they get round to taking blood. How old is your son? I wasn’t keen on blood as a kid and then my dad took a slide of blood from a cut and we had a little microscope at home and I looked at the blood under this. It was fascinating. YouTube will have videos of blood and maybe your son will be interested.
There are children’s books about going into hospital so it may be worth getting an age appropriate one of these to read to him once a week or so to get him more used to hospitals.
All the best for the current flare up. Make sure you do eat something or you will be ill yourself or faint. Do you have other children or can your DH come and take over so you can have a break and some food? Can you tag team with him so you can get some rest.
All the best

Thank you very much for such a thorough and thoughtful message. It's really appreciated at this wee hour of the night. We've thankfully just been given a proper room. My husband is here thankfully, I honestly couldn't cope with this on my own. Our other child is with my sister thankfully.

Since his diagnosis we have been paying for him to see a child psychologist who has been doing very gradual exposure therapy with him regarding the hospital, we were literally here yesterday for a check up with his consultant which went really well and my son wasn't anxious at all during it but once he knew he was coming in and would likely need testing done that's when all hell broke lose. It's the sight of blood unfortunately that he has a phobia of and he can faint at the sight of blood too so yes harder to do therapy on but the psychologist did want to move on to gradual exposure therapy for that after he completed his hospital ladder. This will inevitably set all that hard work back I envision.

OP posts:
EliflurtleAndTheInfiniteMadness · 19/01/2025 03:23

Nogodsnomasters · 19/01/2025 02:14

This reaction is definitely worse than pre diagnosis symptoms in terms of severity, but I've heard the longer you're off gluten the worse your reaction to being glutened is - would that be correct? Coeliac disease is a bag of absolute shite.

Yes it can happen this way unfortunate. For some people avoiding an allergen makes the reaction much worse if you consume it again. It could be cross contamination. I can't stand hospitals, it's hard being there with a sick kid and autism can add another layer of struggle being in an unfamiliar place and out of routine even without the phobias. I hope he's feelings better and ready really soon.

mumofoneAlonebutokay · 19/01/2025 03:30

Hospitals should allow you to bring a fan in, if you explain that the panic is making you hot

Your boy is in the best place, op. Hour by hour, you can do this. And all he needs from you is your presence and your love, which you have both to offer in spades ❤️

Sorry you're going through this, fingers crossed it's sorted ASAP x

picturethispatsy · 19/01/2025 03:51

Huge hugs and empathy. I have been in your shoes more times than I care to remember 😔

My advice is get some therapy for yourself once he’s well again and back home. Preferably hypnotherapy as it’s excellent for health anxiety. Until you address your anxiety your child will be anxious about being poorly as they feed off your nervous system. I say this with kindness believe me I know how terrifying it is having a poorly child with a condition.