AIBU To be worried sick about my daughter…

[HereMe]

Hi everyone, Really hoping for a handhold please. I’m on my own and just feeling so down and alone.

My daughter has had medical issues for the past few years that we haven’t quite been able to get to the bottom of. She is 11.

She has stomach issues and has had countless tests. We have a gastro appointment again soon, but I’m just reaching a point where I am just so afraid. I’m trying to tell myself that if it was something serious, we would have answers by now. She has had ultrasounds, scopes, swallowing tests etc. but sometimes she is just so unwell.

I want her to be able to finally enjoy a childhood with this behind her, but we have been fighting to get answers for 3 years. She is on medication which really helps - omeprazole and an antibiotic to speed up her digestive system. But still, she is weaker than her friends, she is struggling with stamina. I’m actually in tears because I just can’t get this fixed. I’ve tried so hard for her. I feel somehow responsible. Maybe just guilt that I haven’t been able to fix this.

I don’t have any family around and I do have friends but I don’t feel I have anyone who truly understands what I am going through, and what she has gone through.

I am always being practical with any issue we face, but underneath, I am emotionally broken by it. I wish I could win the lottery and get her the best medical care and someone who will find answers for her.

I just need to make things better… but I can’t!

bumping post… sorry. I just really need someone to talk to.

Has she got some good friends and peers?

Can you help to strengthen those for her? Encourage it, so as to take her mind off it. Glad the omeprazole helps.

I can’t help with the stomach issues, hopefully more tests can get to the bottom of it.

Does she do any form of exercise? I find that when I’m active it really improves stamina and fatigue. Maybe just go on a short walk a day and slowly build up how far you walk? Little steps like this may help.

My son had stomach issues last year on the run up to his GCSE’s. We thought it might be anxiety as no obvious reason for it (drs tried all sorts of medications and nothing helped him which is why they thought anxiety). It seemed to improve towards the end of the year (Dec time). It’s recently started up again. No reason this year to think it’s anxiety related - I have found a link to hayfever though. I’m wondering as it seems seasonal of it could be that - have you looked at that for your daughter?

I agree if it were something serious you’d have found it with all the tests etc. it’s not much comfort though when you just don’t know what’s wrong. I hope you get answers soon.

I had a grumbling appendix for 4 and a half years starting at around 13 years old…..though was constantly misdiagnosed……told it was period pain, anxiety, all in my head etc. I had an endoscopy and saw countless GPs. I eventually had my appendix removed at 18 after an OOH GP sent me to hospital during a flare up, which obviously fixed the issue and I never had it again.

She does swimming and dancing. But is clearly weaker in both of those than the children her age. We haven’t been able to do much in the way of cardio type activities because we have been working hard to help her gain weight. She has sore knees all the time too.

The stomach issues don’t have any seasonal link, she has experienced them for years on end, with no relief, until these current medications. Today, she is tired and lying on the sofa and just looks off colour. Im living with that constant worry in the pit of my stomach. 😢

Her main symptom has been nausea, which has been relentless until she started these meds. I’m so glad that has improved, but she threw up on Friday night. No sickness bugs going round school or anything, so no idea what caused that.

She has some lovely friends… but she doesn’t like people to know about her health issues. She feels embarrassed about it and tries to hide it. I think it would help her for her to have some friends she can open up to. But she is quite a private person with that sort of thing.

You’ve most likely already thought of this, but is she eating foods that are good for the gut? Lots of fibre, fruit, veg, fermented food, kiwis etc? Also if she’s on antibiotics then acidophilus might help. Hope she feels better very soon

She sees a dietician, so her diet is really good and we are following all the advice. I haven’t heard of acidophilus though. Will look into that, thank you.

Did your daughter have Covid? I am noticing a lot of young people have weaker immune systems because of Covid. Things just seem to affect them more than before. Throw in anxiety and any minor food intolerance and it’s very hard. They have ruled out major problems, so try to make it less of an issue ( not easy). Hopefully as she grows this will disappear. Try and stick to a diet with no processed foods and lots of fruit, veg and natural foods.

I'm allergic to aspirin / salicylate intolerant, only recently diagnosed after stomach issues for years. Not saying it is this, but for you not to worry, as nasty stuff is easy to find, bothersome stuff less so. They'll get there, just sending a virtual hug.

My dd wasn't diagnosed with crohns disease until she was 30.

She manages it with diet and trial and error. Fobbed off as ibs and digestive issues for decades..

Has she been tested for Coeliac?

Sounds like a food intolerance - has the dietician ruled that out?

I don't have any advice but I know how worrying it is when your child is ill. When my dd is unwell or her asthma is bad it's literally like a dark cloud over me, it's horrible.

Hope she improves soon 💕

Curve ball here.

Stugeron travel sickness pills have a chemical in them that blocks the brains receptor to nausea. It has been a game changer for me!

No help with the stomach issues but how are her iron and ferritin levels?

Might be worth checking as even when they are within normal, they can be right at the bottom of the range.

A liquid version would probably be better given her other issues.

Has she tried going wheat free/gluten free? Bread/pasta gives me terrible nausea, heartburn and fatigue. Gastro told me to cut out both wheat and dairy.

I hope you get to the bottom of it soon OP - that sounds really stressful for you both. I've been having some issues lately and know how hard it is to get a diagnosis.

@PeriJane would you mind telling me what your symptoms were? I feel like I might have this currently but I'm finding it hard to get medical professionals to take me seriously.

Have they tested for gastroparesis. The symptoms sound similar to mine. The only thing that has worked for me is very limited fibre. If the stomach won’t empty you feel full all the time and vomit if you try to eat. It may be worth asking GP

I’m so sorry to hear about what you and your daughter is going through.

Referrals and diagnoses can be a long process but you will get there.

It sounds like it’s still unclear if this is physical or psychological. Are you already taking steps to establish a diet and routine that’s sensitive to DD needs at home and school etc? Some of these you can try yourself with daily food diaries to capture what was eaten(be precise and honest, even about cheeky haribos!), what mood, if periods or illness, etc, if she did any exercise, and so on, so you can determine patterns. You can do this without waiting for the medical professional (but of course consult one before radically altering diets). As some PPs have said maybe try a couple days without gluten, or spices, or onions/garlic, or sweets etc to see if patterns emerge.

Edit - just saw post re dietician.

@DecidedlyUndecided

Mine was intermittent and would flare up approximately every 6-8 weeks for the 4.5 years, though people used to say I looked a bit sickly and I was pretty skinny. An episode would begin with a non-specific dull ache in the abdomen that I could only describe as similar to period pain but much worse. That dull ache would get steadily worse, then I would get nausea and then start vomiting. I would literally just be curled up on the bathroom floor until the vomiting started to ease then would retire to my bed and lie there curled up. I couldn’t sleep, eat or do anything during an episode. It would generally last 12-24 hours and the next day I’d be pretty wiped out too. When they finally took my appendix out the surgeon said it looked red and really inflamed. Apparently, if I hadn’t had it taken out and had further episodes it probably would have ruptured eventually. Once it was removed I started to look a bit healthier, I gained a little bit of weight and I never had another episode again.

Thank you for replying - sorry you went through that, that's sounds horrible and must have been so hard to go through it for so long. Mine tends to be a pain in the right side constantly, stabbing and dull ache - with pain in my back too. Along with bloating and stomach issues - it gets much worse at times but is always there. Yours sounds a lot more intense so perhaps I could be wrong -so hard when you have no idea what is causing it.

Is she an anxious child? I was - and am an anxious adult - and suffer from terrible stomach issues when my anxiety is bad. Therapy and yoga have helped me immeasurably. Just something to consider, the brain / gut link has been well documented.