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When meeting up take sensible precautions. Meet in a public place and let others know where you are going.

Medically complex kiddos

2 replies

Mumlife2019 · 05/11/2025 20:27

Hi all, mum to a 6, nearly 7 year old girl. She has had quite a tough life medical wise and is currently going through a struggle feeling different to other children. I have spent thousands on private therapy for medical trauma and saw a great improvement when she finished a couple of months ago, and seem to be going backwards again unfortunately.

We live outside a small town and she goes to a small village school, her needs are purely medical and has no reason not to be in a mainstream school. The primary school has only 35 kids and she is the only one with complex medical needs. She has been tube fed since birth and has a metabolic disorder which effects her blood sugar, she also has a port a cath central line. She can eat orally now however needs supplementary feeds to help hypoglycaemia. She has a continuous blood sugar monitor which alarms when she is low which she is starting to get very frustrated with as it draws attention to her.

We are in North east England and although we do have one child in town who has almost identical needs who is 3, she would just love to have some friends like her her own age or older. I’d LOVE if anyone reads this and isn’t too far would like a meet up, or mabeys even virtual! She really is such a lovely girl I really feel for her and it’s heart breaking seeing her so upset about being different.

OP posts:
SleepingStandingUp · 06/11/2025 00:45

Bit of a bump for you op as we live too far away. DS is tube fed but thankfully we've been able to keep it out of school hours so the others only really notice it in PE. He's also on O2, nasal cannula, and because it's always there actually the kids are pretty blase. Thankfully it isn't something that seems to bother him - the upside of autism perhaps - but I do sometimes think it would be harder on him if he were a girl given all the survival scars etc.

Re the monitor, how often is it going off? It's it's going off so much school need to be managing something better?

Mumlife2019 · 06/11/2025 07:26

SleepingStandingUp · 06/11/2025 00:45

Bit of a bump for you op as we live too far away. DS is tube fed but thankfully we've been able to keep it out of school hours so the others only really notice it in PE. He's also on O2, nasal cannula, and because it's always there actually the kids are pretty blase. Thankfully it isn't something that seems to bother him - the upside of autism perhaps - but I do sometimes think it would be harder on him if he were a girl given all the survival scars etc.

Re the monitor, how often is it going off? It's it's going off so much school need to be managing something better?

Ah thank you though! I think the kids at school are also pretty blasé as she has always had it it just seems to get in her little head! It never used to bother her at all really she used to be quite proud of her ‘differences’! However she got meningitis last July and spent nearly 5 month in hospital and missed a lot of school then reduced timetable when she finally got back. Totally knocked her back medically but also totally knocked her confidence☹️

unfortunately re the alarm there’s not much school/ I can do. Her blood sugars are really unpredictable and we do all we can just to keep her at home out of hospital. Her plan changes constantly as what one dietician plan works one week can be totally useless the next. She can have days that her alarm doesn’t go off or days her alarm goes off every day!

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