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.

[Redskyandrainbows67]

Wild card but renal problems? (Kidney)

[Redskyandrainbows67]

Do you have a general paed? If not push for one. They are the ones to connect the dots.

[minisoksmakehardwork]

Have they tested for any of the Ehlers Danlos Syndromes. There are various conditions which fall under EDS and it's not just hypermobility. I know you haven't mentioned that but some of the symptoms you mention sound like a friend.

[titchy]

Coeliac? Crohns?

[Dirtygirtyisthirty]

I'd want renal function looked at, but would also be wondering about diabetes....

[RedLemonade]

I’m no expert (GP) and I hope this doesn’t cause offense or upset but If epilepsy has been outruled and mainly based on her current symptoms I would wonder about anorexia and pseudoseizures as part of MH difficulties.

I was thinking CF initially but I see that was outruled.

In my (generalist) experience there may well not be a single unifying diagnosis behind “constellations” of symptoms as such.

I do hope you get to the bottom of things with your poor DD and that you’re getting the support you need. Urgent dietitian input definitely a good way to go initially.

[30daysonly]

Thanks for replying.

Redsky - her bloods have shown abnormal urea levels in the past, so dd had a kidney ultrasound last year, maybe 18 months ago, which was normal.

Her current paed consultant is a general one I think. I see him on Wednesday. Upcoming apps are with a new consultant with a special interest in epilepsy and a dietitian.

Minisok - I will Google thanks.

Forgot to add dd has had a squint since birth, and we had 6 years of trips to the eye hospital on top of the above until she was discharged a couple of years ago. Probably irrelevant but just in case.

[redspottydress]

Is she really tall? My daughter is 9 (just) and weighs 21.5kg. Definitely not skeletal though.

[30daysonly]

Titchy - she was tested for celiac years ago. Will Google chrons thanks.

Dirty - dd barely drinks at all, its a constant battle. Would that make diabetes unlikely?

Red - no offence taken. I am terrified she will develop anorexia in her teens. She's 9 now, the seizures started at 6 or 7, and are very real as far as I can tell. Id bet my house they are real. She has had them on stairs and whilst climbing out of bed etc. and they come on suddenly and she is drowsy, clammy, heart racing afterwards. Dd is not prone to being dramatic or attention seeking.

[30daysonly]

She's very tall yes, 137cm last time I checked.

[Itis6oclocksomewhere]

Sounds very similar to problems that my eldest DD had.
She is coeliac, but also started 'fainting'.
These were investigated and found to be Non Epileptic Seizures. They used to be called pseudo seizures. My daughter had treatment at Great Ormond Street for them. This involved finding out what triggered them and how to treat the triggers. Her triggers were cognitive and involved working with school to help with her workload.

[30daysonly]

My gut feeling is the eating issues stem from being tube fed and from the calorie shakes. I don't think she has the normal hungry = food, thirsty = drink instinct that she should have. This has snowballed into a food aversion that had improved to what you'd view as general fussiness but is now worsening, maybe into an eating disorder. 'Severe food aversion' was the term being used when she was 3 ish.

[hazeyjane]

I have a friend whose child has seizures brought on by blood sugar problems - I'm afraid I can't remember the name of the seizure type (they are not diabetic), but I know that if their blood sugars dip they can have a seizure, they keep a bottle if coke and glucose gel in the classroom.

Does your dd have any other developmental issues, physical issues or learning delays?

[KMoKMo]

No advice but it sounds horrendous. I hope you get some answers soon

[mzzzf]

Total punt - but with the height, slenderness and eye issues. Have you been checked for Marfan syndrome?
Can also cause issues with the cardiovascular system too, so could be linked with the seizures maybe?

[30daysonly]

Thanks itis. I will look into coeliac again.

Dd doesn't appear to have issues at school, with the work of socially. She had a period of issues with one girl, ironically this was during the time she had no health issues. That's now resolved, she gets on fine with the girl now but they aren't close. She has friends, cousins, friends from activities and holiday club etc. All are normal weight it not slightly above (not meant with any judgement!!) and eat normally.

[nocoolnamesleft]

Newish term, but maybe ARFID? eatingdisorder.org/blog/2013/08/what-is-arfid/

[30daysonly]

Thank you all. I'm going to get my laptop out when dd is in bed and do some research on all these

One thing that's always mentioned by professionals is I am tall (5 foot 8) and size 10/12 so not thin but they comment. I eat anything and everything. I eat the same as dd but with added spice/veg/sauce and always offer mine to taste but I don't force it. We eat together at the table except for Friday night which is usually something easy in front of the tv.

[babysharkah]

Diabetes, coeliac, chrons? Any chance you can go private just to speed things up?

[LivininaBox]

What stands out for me is that she seemed to be eating more normally at age 5 or 6 but then got worse. What do you think triggered this? Could it be stress related?

I have suffered from fainting and migraines at times of high stress when I have not been eating properly, so I feel the not eating, headaches, and fainting could all have a psychological cause even though the symptoms are definitely real.

[colditz]

www.google.co.uk/search?q=celiacs+seizures&rlz=1C1CHBD_en-GBGB783GB783&oq=ceoliacs+sei&aqs=chrome.1.69i57j0.5098j0j7&sourceid=chrome&ie=UTF-8

[30daysonly]

Ok, can I check something ridiculous but I base what's normal on dd, she's my only child so I could be way off.

E.g. sausage and mash - 1 sausage, 2 tablespoons of mash, 1 tablespoon carrots. Dd leaves a couple of pieces of sausage, maybe 2 teaspoons of mash, a few carrots.

Nuggets and waffles - 4 nuggets, 1 waffle. Dd leaves maybe half a nugget, a third of the waffle.

Weetabix- 1 weetabix with milk and a bit of sugar on top or a third of a banana chopped in. She eats this. Any more, she leaves.

She eats lots more homemade stuff than this but those are easy to measure.

[Tisahardlife]

I was going to suggest looking into ARFID as Nocool has suggested

[Redskyandrainbows67]

My two year old eats 1.5 weetabix - I’d say she’s eating very small portions for a 7 year old.

What is her blood pressure like?

I’d push for a full set of bloods again if it were me.

[30daysonly]

Livinia, it's been gradual. Probably fairer to say the amount she eats has not changed since she was 5/6. No increase at all in appetite despite growing inches taller and doing activities, learning to scoot on ramps, swim, ride a bike etc. So no weight gain and now gradually losing weight.