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Worried and looking for advice/reassurance

5 replies

KayleighM15 · 19/02/2025 19:38

Hi everyone, just looking for some advice, reassure or anything really

I have been so worried about my 3yo daughter since August last year and just not getting any answers.

Backstory: As a baby and up until last year completely healthy and no problems, has suffered with chronic constipation since August 24 which started randomly, no changes in diet etc, she has been to A&E 8 times after not having a BM for 8-10 days and had 7 enemas in total, the last time she visited hospital was Dec 24 and she was admitted to the ward and given MoviPrep through an NG tube that gave her a complete wash out, since then, she is having small regular BM but has to take 6 sachets of Movicol a day and still has bad intermittent abdominal pain. Investigation wise she had one blood test in September which didn’t show anything ‘significant’ I was told, and has had 2 x-rays in September and October- both of which all they said is that she was completely backed up and severely constipated which I already knew. We have tried every medication there is including home remedies and nothing has ever worked, we tried Picosulfate, Lactulose and Movicol combined at one point all at maximum dose and it worked for two weeks and then back to being constipated again (which prompted the hospital stay) and then since having the MoviPrep in hospital she has just needed the Movicol which is good.

In Jan 25, she started having night sweats, these come and go and probably happen 3/7 nights a week, I wasn’t too concerned about this as she is a sweaty child in general but then two weeks ago she asked me what something was on the right side of her neck and I felt that she had a lump (around 1.5cm-ish) which I hadn’t noticed before (this is where the severe worrying has started and being anxious already has sent me spiralling). I took her through the GP who was fantastic (seen lots of times before about constipation) and asked lots of questions and did a full check over, she said she couldn’t feel any other masses, she was weighed and I was told she has not lost or gained any weight since September 24 (but it’s hard to tell because she is always so constipated). We were already waiting for a follow up consultation from her hospital stay but the GP said she wanted it investigating sooner with the lump now appearing and the sweating so sent off a Rapid Access Referral. Today (6 days later), she called me to say the hospital have rejected this but have not given a reason and she doesn’t understand why, so she was going to call them to find out why and then submit another Rapid Access Referral. The lump is now around 2.5-3cm ish and changes each day, sometimes it’s hard and painful for her, other days it’s soft and can move around, she has developed a pin-prick type red/purply rash over the lump and down near her collar bone. She has not had any sore throats, coughs etc and when GP checked her over last week she checked her ears and throat etc and said no sign of infection. My daughter is well in herself other than being tired some days (this is normal for her) and I just feel in two minds like a) she is completely fine and my anxiety is worsening the situation or b) there could be something seriously wrong and we are just not being taken seriously.

I guess what I’m looking for is advice from anyone that has been in a similar situation and can provide me with some reassurance, thank you 🥲

OP posts:
Are your children’s vaccines up to date?
Friscodisco · 19/02/2025 20:35

Oh bless you, @KayleighM15. I would call the hospital and speak with the paediatrician’s secretary, and explain exactly as you have above. Ask for that message to be passed across to the paediatrician. I had a similar issue (my DC had enlarged lymph nodes and petechial rash) so he was immediately admitted for investigations (once was through OOH GP at the hospital and other times - ?3 or more times - we went straight to A&E). Would taking her in to A&E be an option for you?

KayleighM15 · 19/02/2025 22:13

Thank you @Friscodisco for taking the time to comment. I will definitely call them directly tomorrow and ask for this to be passed on, hopefully the message from the GP will have been received and I would hope they wouldn’t refuse again based on all of the information.

A&E is an option, however I am not hopeful at all- I understand completely they are there for accidents and emergencies, but the last time I took my daughter when she hadn’t been to the toilet for 9 days and we were sent by the GP, the nurse was absolutely awful to us and said ‘I don’t really understand why you are here, it isn’t exactly an emergency’ and left us waiting (in an empty waiting room) with no offer of pain relief or anything for 2 hours. If the paediatric team refuse to see her again, I’ll have no choice but to go through this way.

I hope your DC was okay, all I want is for her to have more definitive testing like scans of her lump/tummy and blood tests to rule out other things, I just feel like I am constantly fighting and it shouldn’t be like this.

I googled the ‘petechial’ rash as I hadn’t heard of this before and this is exactly what she has, it is mild but definitely noticeable.

Thank you again.

OP posts:
Whatisthisbs · 19/02/2025 22:23

I can't believe the hospital rejected the referral...wtaf. I would become their worst nightmare. Regarding the constipation, I would ask for a Calprotectin test. My DC went through everything you're describing (bar the lump) 5 years ago, and was diagnosed with Crohns disease. I'm so sorry you're having to go through this, but I would really push with the hospital

KayleighM15 · 19/02/2025 22:31

Thank you @Whatisthisbs , and I know I can’t believe it either I feel so angry!! I will definitely mention about the test, before the lump I was thinking something possibly along these lines, it’s just impossible to get my view across without them blaming me for her having a ‘poor diet’ (which she definitely does not) or other ‘lifestyle’ things, I kept a food diary for 8 weeks and followed a meal plan from the ERIC website so now they don’t mention diet to me 😅 thank you again x

OP posts:
LavenderFields7 · 19/02/2025 22:38

Could you child be holding her bowel movements in because she is scared it will hurt? Have you tried sitting her on the toilet everyday and gently encourage pushing? Also how much fluid does she drink?

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