DD1 has had 48 days off school Since September

[Lougle]

Not including days when they have phoned me to say she's unwell and I've gone to get her.

First GP totally disinterested, today's has decided that her level of tiredness isn't right, so has asked for blood tests.

Please may they show something. I want my DD1 back.

Hope the tests get to the bottom of what's making her so tired.

I hope the tests give you an answer. it must be so worrying.

sorry you are going through this.

Thank you both. She really isn't herself. She didn't even try to squirt the receptionist's alcohol rub today

would investigating her diet/nutrition/digestion be something you would be interested in?

I know it isn't for everyone, but it did make a huge difference to dd1. I don't necessarily mean gf/cf, but a general rundown on how she is digesting her food/whether she is absorbing nutrients effectively.

we had some very surprising results when we did this for dd1 - eg she was unable to absorb vit B at all from her food - and this is so essential to digestion and well being. her diet was brilliant (at that point), but it was not doing anything for her at all, as she was not processing it properly.

even today (we have been 'doing' diet stuff for over 5 years now) dd1 will be astonishingly lethargic and unengaged if her diet is out of whack.

just a thought - as I said, I know it isn't everyone's cup of tea.

aww Lougle your poor dd, hope the blood tests give you answers. When are the tests being done and how long do you have to wait for results. I can totally sympathise with you my ds age 11 has been off school for 6 months now. He has severe autism, gdd, low muscle tone and pica. back in november he was sleeping constant hardly eating getting severe distressed to point of rubbing his hair off head, legs twisting and jerking constant. Its been a long battle after stay in hospital for week in january where bloods, x rays etc were done. now attending hospital every day mon to fri since mid feb. turns out they think he has tourettes movement tics and catatonia in autism although as he doesnt communicate it is all trial and error. seems slightly better now on lorazepam so heres hoping. however yesterday discovered his testicles in his stomach now he needs an op too. Things can only get better. Do hope you get answers soon for your poor dd nothing worse than being unable to help i hope you get your lovely dd back soon to

Shavian, sounds like you've been through the mill!

Silver, we think diet may play a huge part. Since stopping epilim DD1's appetite has decreased. She's not eating well, and really only likes dairy & gluten foods in any quantity. She'll enjoy other foods and doesn't really have any dislikes, but just won't eat more than a mouthful or two of them.

hmm. eating only gluten/dairy foods is a huge red flag to me (from my perspective, with my experience with dd1)

have you ever had your dd Sunderland tested? it might be a starting point, even if it comes back clean, so to speak.

I would consult a good nutritionist, if I was in your position, I think. even once dd1 was gf/cf, she was not digesting well. it is only in the last 18 motnhs-2 years that her bowel has been working more efficiently, imo, and that is the time that she has really been able to progress, and calm down, less anxiety etc.

Thank you Silverfrog. She's obsessed with bread and butter, cheese, yoghurt, potato salad, creamy sauces, etc.

I'll look into Sunderland testing.

Arrrgh so she had the blood test, and I was tools the results were normal. I phoned the doctor and asked for a 'next steps'chat, and she realised that the woman hadn't taken sufficient vials, So half the results were missing!

Poor child has to have another test tomorrow. But the good thing is that GP has added a coeliacs screen to the list.

oh, how frustrating, lougle.

but good that a coeliac screen is being added (NB - a negative result for coeliac does not rule out a gluten sensitivity - dd1 is negative for coeliac, but off the scale for Sunderland, and reacted to gluten in an extreme way).

I hope tomorrow goes well

Oh your poor dd having to go through bloods again!

Hope they come back quick and you get some answers Lougle.

Oh dear that has happened to us before with bloods, its so unfair and frustrating, hope it goes ok and that you get some answers.

Thank you, and point noted about gluten, Silverfrog :-)

So DD1 went back to school for a week. Day 3 of week 2 and she was sent home because she vomited in the hydro pool.

Not sure if she was actually ill, or combination of hot/water swallowing, but 48 hour rule applied, so off Thursday and Friday.

So...she's fine again, and then on Sunday (yesterday) she said her eye hurt. I thought 'hmmm...Sunday afternoon...' By 4pm there was a small red line on her eyelid. Piriton given. Went to bed happy.

First thing this morning, hugely swollen eye, closed, in fact glued shut. So, trip to the GP who felt that hospital was the best place for it.

DD1 is technically an inpatient having IV antibiotics, although she is allowed home as an 'ambulatory patient' because the doses are 24 hours apart. She has to go back tomorrow lunchtime for another dose, and then they'll decide whether to continue IV Abx or to convert to oral.

I've had enough of this now

All bloods were clear except coeliacs (which isn't back yet). Another full set were taken this morning.

What's going on????

:( poor mite

What did they test for Lougle? was just iron defficiency like aneamia (sp) or have they checked for thyroid issues as well as that can cause tiredness.

She clearly has some nasty infection bless her. Hope her eye clears up soon x

They did full blood count (FBC), Ferritin, Urea & Electrolytes (U&E), C-Reactive Protein (CRP), Erythrocyte sedimentation rate (ESR), Thyroid, Coeliacs Screen (TTG). All the results apart from the Coeliacs are back, and are normal.

There has to be something. That's 53 school days off since September.

Justa! So nice to hear you Please do tell...nice to share the misery

How is the NZ life treating you? We've moved house, same village, but don't forget that any time you're back visiting your Mum, you're more than welcome to bring your boys for a romp around the garden!

So sorry to hear that DD1 is poorly. I hope today bring some better news for you.

Thanks :-)

They want her to have another dose of IV antibiotics tomorrow, then on to normal.

Blood results are interesting, I think. although GP's verdict was normal, there are anomalies.

Hope you get some answers very soon x

Hope she has had an easier day today Lougle :)

Give her a MN bear hug from us x

You're so kind.

If anything jumps out at any of you from these...please say:

Anti-tissue transglutaminase level (ttg) = Patient has low IgA level so may not be reliable. We have tested IgG Endomysial antibodies to test for coeliac disease instead.
IgM 0.8 g/l
IgA 0.3 g/l (Low)
IgG 0.5 g/L

Basophils:
Count 0 10*9/L (0.0-0.1)
0%

Eosinophils
Count 0.1 10*9/L (0.1-0.2)
1%

Monocyte
Count 0.4 10*9/L (0.2-1.0)
6%

Lymphocyte
Count 2.4 109/L (6.0-9.0*)
39%

Neutrophil
Count 3.3 10*9/L (2.0-8.0)
54%

Mean Corpusc. Hb. Conc. (MCHC)= 32.5 g/dL

Mean Corpusc. Haemoglobin (MCH)= 25.1 pg

Mean Corpuscular volume (MCV)= 77 fL

Red Blood Cell (RBC) count = 5.38 10*9/L (High) (4.00-5.20)

Haematocrit = 0.42 (High)

Platelet count = 371 10*9/L (200-450)

Total White Cell Count = 6.2 10*9/L (5.0-15.0)

Haemoglobin estimation = 13.5g/dL

Plasma C-Reactive Protein

Sorry to hear dd has been so poorly - hope she gets better soon and that you get to the bottom of the tiredness and the many days off sick. Possibly the repeat blood tests today will reveal more.