Mums with toddlers, does this look ok?

[rackhampearl]

Realise it's not the best move posting online for advice but I can't get into my Doctors for weeks with DD (2) She has a huge tummy that never goes down. I guess I just want some reassurance that it's normal. She has a small lump in her neck that I'm guessing is a node and she sweats a lot when she sleeps and is complaining of knee ache a lot. She was 2 in March. Does her tummy look normal to you mums of toddlers?

Glad you got second opinion, this is definitely an unusual set of circumstances and I hope she's ok

Hi guys. Haven't had stool sample results back yet but took her back in for some blood tests that the DR had required, saw the Dr briefly again and she said that it doesn't appear to be a bowel issue from what she can gather so she wants her seen by the hospital asap, going down the ultra sound etc route. I thought, why don't you send me now then, I'll drive her to the hospital right away. But I know it's not that simple so now it's all a waiting game. Fingers crossed.

Ah how frustrating. Thinking about you x

Thank you Stealth. MN is great for worrying times

There are lots of possibilities, most of them perfectly manageable. It can take a while to find out though. We've been back and forth with DS2 but he's grown out of everything now.

Thinking of you op. Glad you got a second opinion!

Op I've been thinking about you and your dd, how have you got on?

Hi Stealth, still no results back from the stool and blood tests (I've been ringing everyday) however we had a referral through today for a hospital appointment. They had marked it as an emergency appt (seen within 8 weeks) and we got the date Nov 6th... a long time to wait but I'm sure if they thought it was something more sinister they would have taken a faster route. DD is well but her tummy is still huge :( Thank you for thinking of us.

How annoying! Glad she has a hospital appointment suspect they are taking no chances with a toddler, quite rightly too

These things take so long. It's very frustrating.

Hi everyone, had to rush DD to hospital today. She had a rectal prolapse. DH went to wipe her bottom and realised her insides were on the outside. Straight to A&E, skipped a 3 hour que and they said she's probably going to have to get blue lighted to lgi to be operated on because the prolapse was so large. But while they were on phone to surgeons in LGI by the grace of God DD said 'all better now' and when we took away sheet it had gone 'back in' never seen anything so shocking before when I saw that. Would post a picture but don't want it to be on here forever. Unfortunately now this has happened teamed with the bloated stomach and head sweating and my sister having CF they now highly suspect she herself has CF and they are fast tracking a sweat test for Monday. Just thought I'd let you concerned posters know. Never expected this to happen tonight in a million years. My mum discovered my sisters CF by opening her nappy and seeing prolapse but she was a little younger than Dd is now, say 13 months.

Oh OP, I really don't know what to say. I am so very sorry for all the worry you have been through and now this.
I hope the sweat test comes back clear but if it doesn't, there is so much support and understanding for CF and the prognosis is a lot better than it used to be. But of course, you know a lot as it is already in the family.
My good friend has CF and she has a wonderful life. She has painful times and lost her sister to complications from CF a couple of years ago, but she has the best attitude to life, she is marrying soon and is at Uni, etc.
I am also very close to LGI, so if you ever want a tea/chat or anything with some from MN just PM me.
Lots of love to all of you in this frustrating and worrying time x

Clicked on this thread out of interest. How stressfull for you all op. Glad to hear you are getting close to a diagnosis and treatment.

Thank you both for replying. We still have a lot of connections with people with CF due to all the time spent in hospital with DS and all the lifelong friends she mad. You're right, they have the best attitude to life it really is amazing. I'm still hoping for the best, little bit shell shocked and thinking about my sis tonight and how she would have felt if she was here. CF can be very lonely but I never a new a woman who could fight like she could and she made it to 32 despite lots of difficulties. DD is sound asleep now, will keep everyone updated on the outcome of sweat test. DH is in shock but he knows that given the worst news I will be at the very least experienced in physio, mess, feeds, nutrition ect. Thanks to all you MNs, some times this place can be the best pick me up.

Meds* not mess, plus countless other typos. It's been a long day. Night everyone x

I’m so sorry to hear this
How shocking for you all and worrisome
Please excuse my ignorance but isn’t cf screened for at birth? Would this have been a false negative then?

Hope you can get some sleep

Not an easy time for you and your dh, op I’m sorry to hear this. At least the diagnostics are speeding up as a result. I find the waiting and not knowing to be the toughest part. Once you know what you’re up against, you can arm yourself much more effectively

Thinking of you and your family op hope you get answers soon for your little dd

Hi op
Just seen your up date what a very stressful time for you all. I hope it all comes back ok

Just RTFT, what a terrifying experience. No advice but plenty of (((()))) and
Hoping you get a positive outcome.

My DS has a tummy just like that, maybe even bigger. He is 23 months. I have asked doctors/nurses about it when we’ve had check-ups before and they’ve always said nothing to worry about.

Just spotted this thread. It sounds like you're doing the absolute best for your dd, op, and I hope she starts to improve soon with the treatment for CF.

My DD has CF, I pray that your DD doesn't have it but if she does, atleast they would know now whilst she is still quite young and can start treatment.

And for you having your DS with CF atleast you have a good idea of what it means/how it will be treated.

Blueberrys there are so so many mutations with CF, a lot of the types that are pancreas sufficient (not as many stomach issues, no need for Creon - subsitute for natural enzymes) do not come up on the heel prick screening as they are testing for enzymes in the blood that wouldn't be present for most pancreas sufficient types.

For OP it would be likely her DD was one of these types as it is quite unusual to get past infancy without it being flagged up if pancreas insufficient as babies struggle to gain weight and normally diagnosed as 'failure to thrive'