I can’t see her getting better

[KateK00]

My poor DD is so ill. She’s only just turned 1 and has had chronic stomach issues for several months now that have got rapidly worse recently. My once happy smiley little girl is just a shadow now. She’s on steroids which have made her very fat so I’ve had to buy her all new clothes (so not important in the scheme of things I know), she’s lethargic, cries all the time and seems constantly in pain. She learnt to walk at 11 months but now she has so little energy and feels so terrible that she’s practically bed bound. She either has diarrhoea or is constipated for several days which leaves her in agony and desperately straining. I sit up most of the night trying to comfort her but she doesn’t want me, she just wants to feel better. I have a DS who doesn’t get a look in as all my time is taken up with DD which also means things with DP are strained. Crohn’s Disease, Coeliac, Lactose Intolerance, it’s all been mentioned but still no one seems to know what’s wrong. She’s been hospitalised again today as her tummy is very swollen, but it’s been going on so long now that I can’t visualise her ever getting better. I don’t really know what the point of this post is to be honest, I think I just needed to write it all down. I’m going to lose her aren’t I?

Oh I just couldn’t read and run.

I’m so very sorry you are going through this. I can feel your pain in your words. What are the medics saying?? What are they pointing towards?? Have they shown any incline?? Are the steroids helping??
My little girl was put on long term daily steroids. Was on them 8years in total, every single day. I too thought soooo often, that is loose her. I still think that a lot. I feel desperately scared. But she’s 11 this month!!
I just want to reach out to you and scoop you up. I remember the desperate feeling of being swirled around, with my mind not focusing. That awful sick feeling of being out of control and loosing your baby.
Is there anyone you can speak to?? Maybe a doctor at the hospital?? I spoke to one of dd’s regular doctors at the hospital one dark and lonely night. He helped me straighten my thoughts and start processing things. I could then think straight. Ask out loud. Ask the questions that are going round in your mind. Ask the things you don’t want to say out loud, as often the answers aren’t as bad as you fear.
All those conditions you mention can be treated. Hold onto hope.
Sending you massive hugs and oodles of strength.

@Flossie44 thank you so much for replying. Your words are quite reassuring and I’m so sorry to hear you’ve been through similar, you and your little girl sound very brave.
At the moment the medics really don’t seem to have any idea what’s wrong and her doing yet more tests today. Yes the steroids do seem to have helped her a bit, but it’s hard to hold onto that when she still seems to be suffering so much. She was such a good eater but is now basically on liquids only and if I do manage to get her out of the house I get looks from people because the steroids have made her so big.
Yes there’s people I can speak to, I’m going to make a point of talking properly with the doctor today. I just want some answers. Thank you so much again, your message was really comforting.

Steroids are so cruel. But so life saving too. My little girl was huge. She looked like she had no neck, and her eyes were pin pricks in her face. But they kept her alive so it’s a small price to pay.
I hope things improve soon

This sounds so tough. Poor little mite, and poor you.

I think in your shoes I would become very persistent about ensuring the medics have a plan. This has been going on far too long to not have an answer yet. I would be wanting to sit down with the consultant in charge and find out what they have ruled out, what they haven’t yet tested for, and what is the plan going forward to do that ASAP. I would be looking for reassurance that they would be upping the rate of discovery through being more pro-active with the tests. I would also consider requesting a transfer to a specialist children’s Hospital, such as Great Ormond st.

Thank you both of you, your replies are much appreciated. I’ve had a long talk with one of her doctors today and they’re now preparing her for a colonoscopy/endoscopy (she’s had this before but has got much worse since then). She is under Great Ormond Street already but thank you for the suggestion.

I hope the endoscopy goes well. Will they be looking to rule in or out things like coeliac? I may have misread, but it seems odd that they have been mooting these things as a possibility but haven’t actually yet found out if that is the case.

My sympathies, it is so hard to have a DC in hospital not knowing what is wrong or how treatable it is. Have the medics checked for bowel obstruction/ intussusecption? Maybe ask if it has not been mentioned. I agree with others that you need a definite diagnosis and a management plan. Be assertive if necessary, eg ask for second opinions.

How difficult it must be for all of you. I cannot imagine the pain you must feel and frustration of watching your child suffer.
Please keep talking to us, if it helps.

Can you do some research and find a specialist who may be able to give a second opinion? I really feel for you, it sounds like hell not knowing

Sympathy and a hand to hold when you feel hopeless. It's so hard to watch your baby suffer.
My youngest was ill from birth and none of the doctors could figure out why until he was about 18months old. And then various things came to light (several gastric issues plus serious lactose and CMP intolerance). No cure but once we knew we could help him. And he gradually transformed from the miserable, sickly, fatigued baby into a smiley energetic child who began to sleep.
Keep going. It can be a bloody slow journey but you will get there. A poorly child is draining. But things will move on, it won't stay like this. I found writing a diary about their day really helped.

I’m so sorry. It must be so hard to see your child declining and not even have an answer to why. Apart from the medical side, Do you have support in real life?

Thank you all very much for your messages. Sorry I probably haven’t been very clear, when I mentioned coeliac etc I should have said that as far as we know they’ve been ruled out, but because it’s been going on for a while now with no real answers, tests that have already been carried out are probably going to be repeated. The colonoscopy etc tomorrow is going to be looking for obstructions. Thank you yes, I do have real life support which obviously does make a difference.

Oh you poor love. I agree with pp who said do ask all the questions that are on your mind. I found when my son was very ill that keeping a diary of what was happening and what may or may not have triggered it, or has helped was helpful in making sense of what was going on. I know that’s hard when you are exhausted

Sending strength and love

Keeping talking to gosh and ask what the possible diagnoses are.... hope you get some answers

How did the colonoscopy go?

They’ve found an obstruction and have fitted a stent.

Poor thing. How is she now?

Hope she’s on the mend.

I’m so sorry for what you’re all going through. I have no experience of this and no advice but we’re all here for you
Hope she’s doing a bit better xx

No I dont think you are going to lose her. Reading you saying that broke my heart. What worry and stress you must be under. I think as her digestive system grows and gets bigger she will get better. And they will be able to pin point a cause and help her. Could it be something like a diary allergy? Hope she gets better soon. Good luck. Hope repeating the tests shines light on the problem and she is able to get treatment.

How's your little girl doing now?

Thank you very much for all your kind words. Sorry I didn’t reply to say thank you sooner.

How is your DD doing?

You’re poor little girl. And poor you too. How is she doing now? I hope the stent has helped.

To be perfectly honest I’d really rather not talk about it anymore as I’m finding it all incredibly difficult. Thank you all so much for the kind and supportive messages though, they mean a lot.