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Original poster

Daughter has an autoimmune disease

18 replies

Notgettingbetter · 24/03/2022 15:50

DD has been very poorly for a few days, including a night at hospital. She's been diagnosed with a fairly rare autoimmune disease and will probably be unwell for at least a few weeks. She's not really eating, though she has started drinking some water and milk again. She's in a lot of pain. Calpol helps a little but not much. She refuses to take ibuprofen. She's in reception at school. I don't know when she'll be able to return. She's always been such an energetic, outgoing child and now she's either sleeping or crying and screaming in pain. We're going to ring the hospital later - they said to call any time we're concerned. I hope she doesn't have to go back but maybe it will be necessary.

I have been suffering with severe depression for about a year and now this... I will keep doing my best for her but I'm already in such a poor state. Her dad is also exhausted. We don't have any family nearby (not that they're the kind of people I'd want help from anyway). Friends are being kind but there's not much they can do.

I don't know why I am posting. I just feel shit. I love my little girl so much and hate to see her suffering like this. I also wish I could have enjoyed her more over this past year but my crap mental health has taken that from me. Life feels like a string of ordeals to get through lately.

OP posts:

Moonshine5 · 24/03/2022 15:55

OP you must keep reaching out like this whenever things get too much. There's a whole Mumsnet community here for you. Your daughter is now being cared for, give yourself a break. The news is fresh in your mind atm. Look after yourself too

Candlecassie · 24/03/2022 15:58

Can you share what AI condition OP? I have several myself and there is an AI section on here. Might be worth checking that out to get you some support.

Original poster

Notgettingbetter · 24/03/2022 16:04

She has Henoch Schönlein Purpura.

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JulesRimetStillGleaming · 24/03/2022 17:19

You have my huge sympathy. I'm being investigated for an autoimmune condition at the moment. I've been ill for a year with no answer yet and I'm thoroughly sick of all of it.

It might not be much of a consolation but you have a diagnosis and something to work with now.

Original poster

Notgettingbetter · 24/03/2022 17:58

Thank you all.

We rang the hospital and they told us to bring her back in so we're doing that. I think there's a small risk of her bowels collapsing in an awful way ("telescoping") and because she's vomited bile they want to check her over. We're pretty sure she's produced bile simply because she's not been eating and doesn't really have anything to bring up, but we know it's better to be safe than sorry. None of us want to go back, especially her.

I'm feeling really tired and miserable. I had just started seeing a new counsellor before DD became ill but she told me the other day she can't work with me after all. I'm taking two antidepressants but I don't think they help much. My doctor doesn't want to mess with them in case it would make me feel even worse. I am eating ridiculous amounts of chocolate in some silly attempt to feel better about everything.

Managed to give DD a bath and washed her hair - she hadn't had a wash for nearly a week.

OP posts:

WinterCarlisle · 30/03/2022 22:53

How is your DD doing, @Notgettingbetter? I hope she’s feeling a bit better

Original poster

Notgettingbetter · 30/03/2022 23:15

She's still very poorly unfortunately. Her rash has got worse and she still has a lot of stomach pain. On a more positive note, the swelling in her joints has decreased and she ate some food today without vomiting.

OP posts:

NannyGythaOgg · 30/03/2022 23:28

One of my nieces had this badly as a child and was really quite ill with it. She is ow recovered and a healthy adult.

It's a very tough thing to go through but most do recover well.

I hope things get better quickly

gegs73 · 31/03/2022 08:47

I'm really sorry to hear your daughter is going through this.

DS2 is currently 15 and had this when he was 6. It was a scary time. He had the swollen joints and couldn't walk, awful rash on his legs and slightly on other parts of his body and was weak and had pain. I remember they were concerned about his kidneys as a precaution as it can cause problems (which can be treated) and we had to test his urine for around a year and see the consultant just to make sure everything was ok (which is was). I terrified myself by googling which wasn't useful for me at all, my mental health would have been better by looking at what was happening for my DS2 rather than over investigating on the internet.

Good news is that he did get better, after the first initial attack it didn't reoccur and he started to recover. He missed about 4 weeks of school from memory, though a couple of those were over school holidays. His main symptoms got better after a few weeks, but he was a little pale and a bit washed out for a while, but able to do everything. Everyone was really nice to him at school and he didn't fall behind.

Massive hand hold to you all, it was so hard but we got through it and I've not thought about it for years before seeing your post. Sending love to you all.

LetsGoCrazyPurpleBanana · 31/03/2022 09:50

My daughter had it when she was about 3. We thought it was chicken pox at first then panicked thinking it was meningitis so she was blue lighted to hospital. Luckily it was caught early. Had to have regular urine tests but she's a fine 10 year old now xx

Original poster

Notgettingbetter · 31/03/2022 13:07

Thank you all for your posts. DD is still suffering. A neighbour banged on the wall and shouted when she was screaming in pain this morning. I put a grumpy note through their door and received an apology 😁

I was looking and DD's hips and thighs yesterday - she's already lost quite a bit of weight 😢 She has eaten so little for more than a week. I'm just glad she was big and strong and healthy before this started. I'm also glad she didn't have this back when things were worse in the hospitals what with Covid, and I'm glad she was diagnosed quickly. I wish there was more we could do to help her but it seems it just has to take its course.

OP posts:

gegs73 · 31/03/2022 15:04

@Notgettingbetter

Good for you putting a note through the door. She will slowly get better, very stressful in the meantime but she'll get there. DS2 lost some weight but got back to his normal self. Thinking of you all.

Oblahdeeoblahdoe · 31/03/2022 15:11

My son had this as a 6 year old but made a full recovery, he's 35 now No ill effects, had to have urine or blood tests (can't remember which) for 6 months afterwards. It often happens after an infection which travels to the gut. It was horrible at the time so I understand how you feel. Stay strong for her

Original poster

Notgettingbetter · 31/03/2022 15:17

She's screaming a lot today. It's very hard to hear. I wish I could take the pain for her.

OP posts:

NicotineQueen223 · 31/03/2022 15:53

My DS had this when he was 2, it was such a scary time, but he made a full recovery and apart from a couple of follow ups and home testing his urine for a few months he has had no further intervention, has never experienced any flare ups or long term effects (touch wood!) He is now almost 8 and the most active, resilient and full of life child I know. They were treating him for meningitis at first and we spent a night in hospital, it was terrifying but it's now just a horrible distant memory thank god. Hopefully your little one will be the same and recover asap with no lasting effects love and strength to you all, you will get through this

beattieedny · 31/03/2022 15:56

Oh gosh, you poor thing. And your poor girl. Awful. I can't help much from here but you aren't alone. Many parents go through it and will metaphorically hold your hand. I have been lucky with mine, but one had a spell of poor health and it is so painful as a parent. Bless you, its bloody hard

Pandapooks · 31/03/2022 18:47

My friend's DS had this at the age of about 8. He too made a full recovery although they kept an eye on his kidney function for a year or so. I remember he couldn't play sport for a couple of months (he played on the same football team as my son) and got tired easily for a while. I'd never heard of it before. He's now a strapping 13 year old who excels at school and in sport so please take some comfort from that

Roundeartheratchriatmas · 31/03/2022 19:18

If she’s screaming in pain have they not given her some painkillers ?

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