Distended stomach, screaming in pain...

[MoelFammau]

Hi all.

At the end of my tether.

DD is 18mo and since birth has suffered with what the doctors have labelled trapped wind, then silent reflux. She has been prescribed Gaviscon which made no difference. Nor did Infacol or Colief.

I'm wondering if it's something else. Her stomach is permanently distended and hard to the touch. She's never slept through the night, waking in pain every few hours. Some nights (such as this one) she screams for hours, writhing in agony. Painkillers don't help, nor does warm water. Rocking in an upright position sometimes does but the screaming starts again once she lies down. It's nothing to do with protesting about her cot - she screams lying cuddled in my arms too. It's the position that causes the pain.

The doctor and HV have always said oh she'll outgrow it once she's on solids, or once she starts walking... These things have come and gone with no change. She's as desperate for sleep as we are. I'm wondering if her tubes are kinked in some way, trapping acid... no idea if that's even possible really.

Any ideas of what it can be and how I can get the doctor to take things seriously? Feeling so so sorry for her.

[Alibabaandthe40nappies]

Have they done any investigations?

Frankly I would go to A&E and demand she has an X-ray and someone has a proper look at her. Because that is not normal.

Poor little thing :(

[Pancakeflipper]

My DS2 didn't sleep until he was nearly 2. Turns out he had food intolerance. See your GP and sit there until they agree to refer you to paediatric consultant. It's not right and it's not fair. Lots of luck as it an be such a battle to get help.

[bubbles1231]

Ask Insist on a referral to a paediatrician- preferably one with gastroenterology experience. Don't let the doctor fob you off.

[tutu100]

Have you been refferred to a peadeatrician? If not I would say that is your first port of call. Ask your GP to refer her, if they won't are you able to see another GP?

Does she have problems pooing? I ask this because my son had what they decided was an immature bowel. He had this from birth, but it wasn't spotted until his was 3 weeks old as by that point his tummy was very distended. He had a lot of test to rule out other things and they decided this was what it was. We then found that he was dairy intolerant - we found this out when I stopped breastfeeding as he would vomit straight after a bottle (he was 11 months at this point). He had been eating small amounts of dairy up until then so I never realised there was a problem. Once we cut out dairy completely the change in him was amazing. We thought he was quite a grumpy baby, he hated being in the car seat and would scream lots. Turns out he must have still had quite a lot of pain and being in certain positions made it worse.

I'm not saying your daughter necessarily has the same thing, but what you are describing isn't right, and the consultant we used to see for DS2 said that a lot of children are misdiagnosed for quite a while.

Ring your GP in the morning and try to get a referral, or you could try taking her to A&E when she is having a bad night if you feel the GP is not taking you seriously. I wouldn't normally suggest something like that, but it would mean she would be examined by someone else and a fresh pair of eyes may have some new ideas. Has your GP ever seen her when she's been crying with pain?

[NosFarlotu]

Poor darling. I agree it's time to get assertive and demand a scan to see exactly what is going on. This isn't fair on any of you.

[cocolepew]

As the others have said get a referal or take her to A&E during one of her episodes.
My DD was allergic to cows milk.

[Pancakeflipper]

I took a little video on my phone of DS2 in distress one night cos when I would go to see the Dr in the day he'd sit on my knee all quiet. So they didn't see what was happening night after night. And photos of the gross nappies.

I sound crazy. But actually I was losing the plot after no sleep for nearly 2yrs.

[MoelFammau]

We thought dairy but it doesn't seem to make a huge difference. I thought maybe gluten... still not clear on that one but suspect not. She's not had any wheat today but is still having a bad time.

She's fine during the day. Eats a wide, varied diet. Was BF exclusively for 5.5mo then did BLW. Still BF now on demand. She's a tough cookie with a high pain threshold during the day (tripped up today and bloodied her nose but didn't go further than a sniffle) so it must hurt her like hell for her to scream like a banshee at night. If she's in a half sitting or upright position she's happy. Lying down is another story.

Glad you say this isn't normal. We've been fobbed off so much we were starting to believe it was just us.

[Pancakeflipper]

It takes 2 weeks for most foods to exit the digestive system fully do just not having it 1 day won't help you. Often they ask you to keep off a food type for a month.

[MoelFammau]

Ah okay. No I've not tested in that way. Some nights are not too bad (ie waking twice) but others are one long torture session and I can't think of foods that coincide with bad nights... unless it takes more than 12 hours to cause an effect...?

Will try doctor in the morning. She's finally asleep now after screaming since 9.30pm.

[Pancakeflipper]

Keep a diary of food/drink.
My DS2 has a dairy intolerance. We noticed an improvement after about 5 days which was quite quick.

It's awful trying to second guess what is causing this but something is and you will find out what. But sadly you need to battle. We had an good dietician who helped us a lot.

[mawbroon]

Tongue tie can do this to the stomach as the correct swallowing action can't be achieved and so a lot of air is swallowed down, distending the stomach in bad cases.

How did the breastfeeding go? It can say a lot about tongue tie, especially if you had specific problems.

list of symptoms here

aerophagia article from Dr Kotlow who is a leading expert on tongue tie.

Tongue tie is not always obvious, you may have been told at some point that there was no tie, but you need to have it ruled in or out by an expert.

There may also be a food intolerance/allergy, many tongue tied kids are allergic, but the underlying cause is the tie.

[MoelFammau]

I was thinking tongue tie when DD was about 3 months but was told by the HV that she didn't have it. I'm not sure why I thought it - I think it was the wind issue and me reading something on MN.

Breastfeeding went well actually. It was my first go so nothing to compare with, but she never dropped any birthweight at all and gained weight really well. It never hurt for me once I'd got past the first few days of hell. Occasionally it feels sore but I put that down to new teeth changing the jaw shape because it happens during teething and settles down afterwards.

Because she's always been great at gaining weight, it was always brushed off by doctors and HVs.

[MoelFammau]

I read the list of symptoms you gave me.

From those I can say that DD:

Always had very short, fast feeds (5 mins was the average).
Gulped a lot.
Could hear milk hitting the tummy (HV didn't understand what I meant when I mentioned that)

The feeds are still short but I assumed it was because she now eats a huge amount of normal food too. Is this wrong then?

She never seems relaxed at the breast, yet she loves it too. She grips and pinches me all the way through every feed. I've had blood on my chest and waist from it.

Not sure what to think....

[mawbroon]

Even though she only has three things off the list and fed well, it could still be tt. Every case is different.

I would suggest that you contact milk matters (my first link) as a starting point and see what they think.

Does she havea lip tie btw? pics in 2nd link

[cocolepew]

DD1 had tongue tie, it wasn't discovered until she was learning to speak, she had it snipped at 4 yo. She fed fine.

She couldn't stick her tongue out very far and found it impossible to put her tongue to the roof of her mouth. EG wasn't able to say 'la'.
:-)
DD2 had horrendous reflux and only stopped screaming when she was sitting up, she gulped and spluttered over her bottle. Her oesophogus(sp) was swollen and raw. She got better as she was weaned though.

Would you consider an oestopath?

[MoelFammau]

Frankly I'd consider anything!

Just called the doctor and they wanted to give me an appointment for Nov 8th. For a PHONE CONSULTATION. I told them that wasn't an option, I wanted a conversation today. They're going to ring back...

[cocolepew]

My DD2 who had the reflux/allergy screamed constantly when she was a baby. I threw the head in and went to A&E eventually. She was admitted and her reflux diagnosed. From then on I had more help from my oestopath and HV than any dr.

[mawbroon]

Was dd2 tied coco? Reflux and allergy are really common in tied kids

[cocolepew]

No just DD1, I have awkward children

[cocolepew]

I'm convinced DD2 took her allergy after gaving antibiotics for an ear infection when she was a couple if months old.

What are her bowel movements like op? Are you sure she isn't constipated or impacted?

[MoelFammau]

She's always been fine for bowels. At least one but usually two dirty nappies a day. Eats fine. Very happy wee girl if upright and bumbling along. Distressed clingy sobbing wee girl if lying down.

Got an appointment for 8.30am tomorrow to bring her in. Anything I should do to make the most of it? I'm not really very pushy and always get fobbed off with Gaviscon etc. I really want a proper examination for tongue tie and maybe even a scan of her innards... is that a big ask...?

[cocolepew]

Demand a referral to a pead. Don't take no for an answer, tell the dr it has been going on for too long and no medication is helping. You have to be pushy, I'm afraid.

[mawbroon]

Your GP is likely to know bugger all about tt tbh as per this thread Most hcps don't have much knowledge.

Milk matters or the facebook tongue tie babies support group would be where I would send you for info on where to get expert help in your area.

Coco, ds1 had repeated "ear infections" which I think were not infections at all, but irritation from gastric fluid whooshing into his ears and then not being able to drain as the eustacian tubes are restricted by his high palate, which was also caused by his tongue tie. His reflux stopped after his first tongue tie revision (even though it wasn't done properly) and at his next audiology appointment, the congestion which he had been suffering from for the previous two years had gone. Too much of a coincidence methinks.

[mawbroon]

Sorry, I don't mean don't go to the doc, I mean contact experts as well as going to the doctor!!