There is SOMETHING wrong with my daughter!!

[30daysonly]

And I'm at my wits end, can anyone please offer any advice on this? I'm going to start from day one. I'll list the things she's had and the things she's been suspected of having but tests proved negative (suspected by doctors not me)

So, birth:
12 weeks premature
Suspected hydrocephalus
Suspected necrotising enterocolitis
NG fed for first 10 weeks.
Otherwise a 'healthy' prem, in hospital for 3 months so fairly standard.

6-18 months:
Dd has always slept well, at least 12 - 13 hours per night from being 6 months old.
Little to no interest in food. Still reliant on bottles of nutriprem (prem milk) for calories.
Frequent chest infections.

2 - 4 years old:
One chest infection turns into pneumonia.
Admitted to hospital for 4 weeks.
Stops eating completely, NG tube back in.
After discharge, dd is on constant antibiotics for over 18 months for persistant chest infections.
NG fed for 12 months. Seen by dietitian and SALT but discharged.
Endoscopy result was normal.
Referred to CAHMS re. food refusal but never reached the top of the waiting list.
Suspected cystic fibrosis.
Eventually began eating small amounts but relied mostly on calorie shakes either drunk or by NG during this time.

5-6 years - fairly normal, started school fine, started to eat slightly more, gradually weaned off the calorie drinks.

7 - now:
Dd began fainting infrequently, then began fainting with seizures, then began suffering severe headaches.
Suspected epilepsy, seizures witnessed in A&E.
EEG, sleep EEG, MRI, ECG, 24 hr ECG all normal.
Waiting to see another consultant but no answers so far.

Dds eating has deteriorated over this time. She is now 20.5kg (was 22kg in summer)
Dd is now hiding/binning food to avoid eating.
Spoke to dietitian today and have an app booked.

Overall dd is extremely thin (skeletal), tired, still sleeps 12+ hours at night,
is pale, has dark circles. But also bright, happy, has friends etc.

I feel like I'm slowly going insane. I just want somebody to tell me she's going to be ok. Or tell me she has SOMETHING. I have a constant low level feeling of dread at what the hell is coming next, and my stress levels are through the roof, I'm so worried about her.

Thank you so much if you've read all this. If anyone has any thoughts I would be grateful. I feel like each consultant focuses on one symptom at a time, and nobody is looking at her as a whole and connecting any dots.

But I’m not a dr - just a mum!

And I completely understand the frustration at the lack of diagnosis and focus on one symptom by consultants. Find a good general paed and tell them how exhausted you are trying to handle all things. Get them to liaise with the consultants and manage her heath centrally so you can step back a bit. You need to tell them how much of a burden all this is on you. they should help you I hope

My 3 year old dd would easily eat double those portions in a day. She's off her grub atm but would probably still manage 2 sausages.

I hope you can get some answers. There are few things mite stressful than your child refusing to eat x

Is there any food she loves? Even if it's junk you give her at least she'll be eating and hopefully gaining weight. You could take her shopping and allow her to choose any foods she wants. That could help with the weight issue. As for the other symptoms I have no idea but I hope you get to the bottom of it soon

Do you find that she prefers soft or wet foods? I'm also wondering about swallowing issues. Does she tend to struggle the more that she eats and then just give up? I had swallowing issues and also my voice would 'run out' if I talked lots or loudly. I lost a lot of weight and was reluctant to eat some foods. A chilli with lots of sauce would be much easier than a pizza for example. It turns out thay my vocal chords had been injured and webbed together with scar tissue. This was removed and it all resolved.

As the person that knows her best, do you feel the food aversions are a physical issue with eating or a psychological issue with not wanting to eat? What would she do if you told her you were cooking something unexpected or not her approved list for dinner? I'm wondering if autism is a possibility or certainly traits of. This often presents around 3. Has she been assessed? Could SALT offer support with trying to introduce new foods?

Systematic auto immune disease like Lupus.
Has your daughter had ANA tests done?x

POTS? marfans syndrome?

I was wondering about PoTs too. (postural tachycardia syndrome)

I will add POTS and Marfans to my list, thank you.

I just put her height and weight into the NHS BMI calculator for children and she's below the 1st centile. It recommends I see a GP..

Thankyou for taking the time Redsky and User, I appreciate it. I'm starting to think the kidneys could be something here, its the only blood test that has been abnormal (twice) so far. But the ultrasound was OK? Gah.

Thanks 1million, you are right, I keep it all inside and have for years but seeing her pick and push her food around, and chewing it so slowly drives me up the wall.

I think this is a tactic to run down the clock, there's no way she could finish a plate of food in time at school, she takes at least 40 minutes to eat her tea, and that's when she's under no pressure at all. I eat mine, slowly, sit for 5-10 mins chatting, slowly clear my plate away, fill the sink up, still chatting a bit, wash up, dry, put away, wander off, come back and she's still going. Then she tells me she's had enough and I say OK and don't react, just clear it away.

I sympathise, OP. 20.5 kg at 137 cm is skeletal. She categorically can't have Russell Silver Syndrome though at that height - it's a type of dwarfism; all the appetite/digestion/blood sugar stuff goes alongside it.

I am surprised your daughter is not under a paediatric gastro rather than just a paediatrician at that weight and height though. I do hope you get some answers.

Beeky - she likes cheese pizza, lasagne, spag bol, meatballs and spaghetti, shepherds pie, sausage and mash, fish and chips, steak and chips, chicken wraps, cheese sandwiches, ham sandwiches, weetabix, porridge, pancakes, spaghetti hoops and toast, egg and toast, scrambled egg, nuggets and waffles. No variations on any of these, i.e she wouldn't accept fish with waffle or sausage with chips etc. So this is what we eat week in week out. This is the best we have ever been in terms of number of meals, the meatballs are pretty new as are the chicken wraps.

Blackcat and others - I will reply properly tomorrow, I need to try and sleep, but thank you. Blackcat, in a nutshell I think it is psychological, and the NG feeding has contributed to it.

Sorry last one, Latin I agree, but her height and weight is recorded every time we see the consultant, and it is never commented on. I took her to the GP in summer and he referred her to the dietitian, but told me he was not worried. He has been her GP since she was 2. The dietitian initially wrote to me in September saying they were at full capacity and couldn't see her. Since catching her throwing food away this weekend (had suspected before but no proof) I phoned the number on the letter and now have an appointment, and the dietitian is phoning me tomorrow. But in all this they don't seem worried by her height and weight alone, and I can't understand it, apart from her looking better in clothes. Undressed she looks awful, and that's an awful thing to say I know!! They need to see her properly I think.

Your DDs current eating issues sound very similar to my DDs. The fussiness, complete lack of appetite, not drinking, eating extremely slowly, eating the same amount despite getting older and taller, losing weight, lack of energy, all of it.
My DD doesn't have a history of tube feeding, but she does has ASD and massive sensory issues around food, and possibly AFAID although this hasn't been diagnosed.

I believe feeding issues and sensory problems around food are common in premmies that have been tube fed for long periods. Early negative experiences with feeding can often have a lasting effect on a child's relationship with food unfortunately.

Totally out there but would you try anything alternative? My little boy was premature and tube fed and had a lot of food/feeding issues and along with many other problems. We with a lady who does a therapy called Body talk and it resolved all the food /feeding issues and some other things that caused us and him huge distress. She said there was a problem with his gag/swollow reflex from birth. I totally understand it's not for everyone but I was at my wits end and exhausted and prepared to try anything.

My eldest only real symptoms of coeliacs were her lack of weight gain (she's 97th for height and was 2nd for weight) plus in hindsight she was v tired and had dark circles I under her eyes. She also went off her food but I'm unsure how much of that was due to school stress as her appitie has come back following going gluten free.

There's no reason you couldn't go gf as a test as such, but it's generally not advised because if it helps and you have to reintroduce for testing the reaction can often be much much more severe due the the gut having had a chance to heal itself

Seems silly - but my DP was very similar when he was a child. It ended up being his tonsils. He also had constant infections and in and out of hospital as a baby.

Until he was 4, he wouldn't eat and would even collect food in his cheeks inside his mouth and spit out later.

Once his tonsils were removed, he didn't get another infection and he was eating and drinking normally.

Hi OP. MBSS/video fluoroscopy is a moving x-ray study of the swallowing mechanism, using foods and liquids with barium. SALTs are the experts in interpreting them.
Endoscopy does not examine function, only structures like the esophagus and doesn't include important bits of swallowing anatomy.

Tube-fed babies can develop aversions to foods and/or difficulties with swallowing for various reasons. As I said, there are clearly other issues at play but the eating problems you describe plus the history of extended tube feeding as a baby were red flags for me.
Disclaimer: I am a SALT (or SLP as we are known where I from) but not an expert in infant feeding. This is just general info from my studies.

I hope you manage to get some answers.

My 9 year old eats similar sized meals to this. One weetabix, occasionally two! She does have a sweet tooth though, and often has a snack such as a biscuit, small bar of choc etc, and likes yoghurts and fruit.
She is very slender, but also top percentile for height. Seems to be a family trait.

Hi all. Saw the consultant again today and he confirmed the last EEG was clear, which I already knew. So he has referred her to a different consultant who has a special interest in epilepsy.

I was more forceful today. I asked if it isn't epilepsy or brain related what else can it be? He said heart, but heart has been checked and it's not that. I said ok, what else then? He didn't suggest anything.

So then I said look at all the symptoms:
Seizure
Fainting
Low appetite
Tiredness
Pale skin
No weight gain

What else can it be?? He had nothing.

So, I requested coeliac test, urea check and vit D check. He's booked those for 2nd Jan and we see the dietitian on 7th Jan. Still waiting for app with new consultant but I will raise the above suggestions with him.

Thank you again everyone for your input, I felt a lot more confident today.

Oh, sorry, he did say he thought the seizures were unrelated to the other issues. That's all he said really.

Definitely check coeliac, it won’t be the only issue going on but my daughter presented the same

I cannot help but wonder whether the "seizures or whatever they are" relate to the prematurity and previous hydrocephaly (presumably secondary to a bleed?), and the other bits may well be something else.

EEGs...are frustrating. The only time you get an absolute answer is if you happy to be lucky enough to be able to catch an episode actually happening. In between episodes, there are brainwave patterns that are more commonly associated with epilepsy, and brainwave patterns that don't have an association with epilepsy. But there are people with brain wave patterns suggestive of epilepsy who have never had a fit. And people with epilepsy who have normal looking brainwaves between fits. It basically alters the odds of it being epilepsy, rather than being an absolute answer. Which is bloody frustrating. Someone with a specific interest in epilepsy sounds like a good idea. I presume you're diarying the episodes? (What she was going before, what happened, how long it lasted, how fast she came round afterwards) Sounds heartless, but have you been trying to get some footage of her actually doing it, as this can sometimes be really helpful?

Coeliac testing sounds prudent. Hmmm, wild punt here...has gastro oesophageal reflux come up as an idea? I'm guessing yes, given the endoscopy, but that would usually only spot the more severe reflux (as it looks for damage from the acid). It's just that reflux can kill your appetite, and is linked with chest infections. May well already have been considered/excluded, but just pondering. Symptoms could include bad taste in the mouth (have to ask for that as rarely volunteered), swallowing down sick, burning at back of throat, heart burn...

Nocool, thanks for your post. Now you've said it I think she did have a small bleed on her brain hence suspected hydracephalus. This was when she was under 3mo. It hasn't been mentioned, but the new consultant may pick up on it when he reviews her files with fresh eyes. I'll make a note to mention it if not.

I know, the EEG results are frustrating. Yep I've made notes of all the episodes, whether she'd eaten prior, time of day, mood etc. No patterns really. I will try to record the next one, the last one she was halfway down the kitchen stairs so there was no chance, I had to dive to stop her hitting the tiled floor.

Reflux - this is interesting. She doesn't seem to suffer any of those things, extremely rare that she vomits i.e years can go by. I'm guessing this could be in the dietitians remit?

Unless she is in the middle of a seizure when she is having an EEG then they will not show up . It is v frustrating ! Definitely film as many episodes as you can and email to the consultants. It really helps them diagnose things properly . Good luck x

Sounds like reflux probably not on the agenda then, but was just worth checking (another thing more common in ex premmies). Glad the discussion on here is helping you formulate the questions for your appointments!

I will fairy, thanks.

Nocool - it's been a bit of a wake up call, this has been our life for 9 years, endless illnesses and outpatient appointments.
This is our normal. The fact not one person has said "she sounds totally fine to me" has given me a bit of a kick start. She deserves a better life than this.