DD1 losing weight - any ideas?

[Lougle]

DD1 has always been on the slim side. Weight around the 25th centile, height around the 25th-50th.

She goes to Special School, and I commented that she seems to find eating hard work if she isn't well supported (she has a special chair at home). OT took a look, and decided that the tables were too high for her, and so ordered a Breezi chair. Schhol say she eats well at lunch time, but tends to get tired when eating, so they help her by loading the spoon, etc.

At her last Paed appt. (early February), she weighed 19.7kg. A couple of weeks ago, I noticed that she seemed to have lost weight - her ribs were clearly visible and her shoulder blades seemed 'boney'. I weighed her, and her weight had dropped to 18.1kg. Yesterday, she went on a school trip and wore leggings. The waist band was so loose it was only her hips that kept the leggings up. I weighed her today and she is down to 17.7kg.

I think I need to take her to the GP, but does anyone have any ideas?

She hasn't seemed well since she stopped her epilepsy meds in December. Coincidence maybe, but since stopping the meds she's had 3 drops and a few absences (EEG results are awaited). She has had a continual cough since January which didn't respond to antibiotics. She has been diagnosed asthmatic and now has a steroid inhaler to take twice per day, and needs ventolin at school on at least 3 out of 5 days.

She is very anxious at the moment - moving house very soon, sudden emergence of separation anxiety, school refusal starting, anxiety about Mummy dying.

I'm worried about her

Lougle I have no idea medically, but my DS was losing weight and I resorted to giving him a Complan milkshake, with full fat milk, as a bedtime snack. Initially 4 times a week but I could drop it to 3. He drank it with a straw quite easily and it kept his weight up well.

You really need to see your doctor to find out why, in case there's some underlying reason that they can help with, of course.

Just out of interest Lougle, What epilepsy med was your DD on and did it cause her to eat more? My DD was on Epilim when she was 3, and ate for England whilst on it. It did nothing for her seizures so wasn't on it long but just wondered if it could have been that your DD ate more when she was on anti-convulsants and that apetite has reduced since stopping the meds.

WOuld follow Ellens advice and start adding high calorie foods into diet (we used to add cream to everything when we needed DD to put weight on) but would seek medical advice just to check there is no medical reason for weight loss.

Yes, that's a good idea, Ellen.

Bigblue, she was on Epilim & Keppra.

Hmmm Justa...interesting. We did give a dose of Ovex to each of the girls about 3 weeks ago, because they'd been digging for garden worms so their hands were filthy and they have a disgusting tendency to suck their finger, thum, wrist..the list goes on.

Perhpas i should see if it would help.

Probably not related to the weight issue, but if she is using her ventolin on 3 out of 5 days during the week, her maintenance inhaler most likely needs to be either increased or changed to something different. We had this issue with DS2 (and previously with DD)... as soon as they increased the daily inhaler, the frequency with which the ventolin inhaler was needed dropped drastically (except obviously when they were ill).

Also a note, both my children tended to have more asthma problems when they were dehydrated, even slightly at all dehydrated. So make sure she is getting plenty of fluids.

DS2 tends to lose weight when he's ill or when he goes off his food occasionally. I honestly don't know any specific trick other than offering things he likes and bumping up calories when possible.

I have to agree though, that it's important to see the doctor and make sure there's not a specific medical reason for it to be occurring.

Hope she's feeling better soon.

Thank you, Triggles, that's really helpful.

I went to her Parent-Teacher Consultation tonight. The plot thickens slightly. She is doing really well academically since stopping the epilim. Well on course for meeting her P-Level targets for July.

But, they are worried about the following:

Eating - Good appetite, but gets very tired when eating, and they need to sit with her loading up her spoon and feeding her to allow her to finish a meal.

Seems to find chewing hard - they're going to ask the OT about it.

Temperature control- Seems to be cold all the time. Extremities cold even in warm weather. Asking to keep fleece on even if it's sunny and warm.

Pallour - Very pale and drawn, dark bags under eyes. Sometimes a greyish complexion.

General energy - seems to be very tired all the time. Today at school she was so tired that she couldn't cope with other children being near her; very whingey.

I am going to get a GP appointment. We are, between us, starting to think that the apparent 'school refusal' is perhaps not so much an emotional problem as a sign of her physically not coping with the school day.

I wondered if she could be a little anaemic?

That's possible. Has she ever had her thyroid checked? My niece had thyroid problems when she was 7 or 8, and ended up on meds for it. Some of same issues. Just a thought.

Def get a tft lood test done, also a fbc to check for anaemia...it makes you soooo tired its awful (I know!)

Good luck
x

I think she had thyroid checks when she first had her dx...but there is definitely something wrong. DD1's school is a school for complex needs - they have children with PMLD, SLD, ASD and MLD. DD1 is one of the most able children there, yet they are concerned about her. She's just not right.

Def back to GP/paed lougle

All the best x

She's just not right.

Lougle, I think she needs an asthma review.

When she's at school, she's not with you, and they just don't know her like you do. They will be missing the tiny signs that she is about to start struggling to breathe - but that alone will be putting her off her food. My children don't eat when they are even slightly wheezy, and the3y are exhausted. Everything becomes harder work for them.

colditz is quite correct. I know also that DS2 doesn't sleep nearly as well when he is having asthma problems, so then he is tired and whingy.

Just the fact that she is using her ventolin inhaler frequently should be a red flag for them to discuss whether or not her asthma meds should be upped or changed (the daily one, I mean).

Lougle. How does she sleep? Any apnoea at night i.e. snoring? Does she also cough at night? Did she reflux when she was small?
If she had reflux early on, I would suspect that she may still have reflux which would explain the cough at night.
I would ask to see a Paed not the GP, initially.
Apnoea can explain poor weight gain and tiredness. The body has to work very hard to breathe if slightly compromised and will use twice as much energy to do that. Also the reflux and chest infection means that she would be aspirating acid reflux in her sleep.
If either if these scenarios ring bells with you then I would ask to see a respiratory consultant. They would probably do a CT scan with contrast, a sleep study and a 24hr ph probe.
This is obviously just my opinion, and I am not a medical professional just a mum who's had a very sick DD.

This is so interesting.

Her asthma diagnosis came at her annual review on 08/02/2012. I had taken her to the GP in January about a persistent cough, and he said she may have asthma, but she certainly had a chest infection. He gave antibiotics and asked me to bring her back for spirometry when she was better. Unfortunately, the cough just didn't go. Her Paed saw her for her annual medical in February (he normally sees her 3 monthly) and he listened to her chest, asked her to run up and down the corridor and then listened again. He said she had definite wheeze, which she couldn't be faking (some of her class mates have asthma, so we wondered if she simply 'wanted a puffer').

She has the beclamethasone inhaler (one puff) twice per day.

She did have reflux as a baby, although they wouldn't treat it because she gained weight appropriately, if a little slowly. She screamed at night, all night from the day she was born (born at 9.20, slept all day then woke up at 10.30 pm and screamed the entire night) until 12 weeks. Then slept fitfully waking several times per night thereafter.

I was puked on so much, that I wouldn't change my top unless she'd been sick on it at least 4 times, because I just couldn't keep up with the washing.

I think I need to book a double appointment with the GP and see what they do with my list. Her Paed is developmental, so we would need a referral to a different Paed too, I think.

Oh, I didn't say - she coughs at night, most nights. She has never slept well. She has melatonin for sleep.

Then I suspect that I am right. If you are near London, then I would suggest Dr Kilner Respiratory Specialist at GOSH.

I would also suggest that the asthma is posdibly exercise induced asthma.

Please don't forget that we are in hayfever season.... My DD is definitely affected by that.

The Paed should prescribe Augmentin to clear up the chest infection (2week course) followed by a prophylactic antibiotic called Azithromycin one dose, three times a week. This is done every week. They should also give her omeprazole mups daily for the reflux. You may also need to get the help of a Physio to help clear any muck off her chest with percussive tapping.

This will I think make a massive difference to her, but obviously you need a doctors opinion.

HTH

Thank you! I'll update when I've seen the doc.

Lougle - I also think that she may be eating slowly to make sure that she swallows properly. It was GOSH Speech Therapist who twigged that my DD's cough and sleep issues were night time reflux related due to her historically having more than ONE chest infection per year.
We did a videofluroscopy as part of the investigations (ph probe and CT), and sure enough you could see that the 'flap' that flips up wasn't staying down over her windpipe when she was swallowing liquids fast. Therefore a little was going down her windpipe as well as down into her stomach.
Anyway, we saw Alex Forsythe SLT at GOS and she was brilliant at the start of our dx process.
www.gosh.nhs.uk/medical-conditions/procedures-and-treatments/videofluoroscopy-swallow-test/

Thank you SallyBear - I'm going to make a double GP appt to talk through all the different elements that are concerning us/school.

You are more than welcome Lougle. We are off to GOSH this morning to see DD's respiratory specialist. A nice day for a trip to London!

Just banging my particular drum (as DS1 recently diagnosed with this)

Has she been tested for coeliac disease? It can cause weight loss in children. And doesn't necessarily involve diarrhoea / bowel problems as many people think (my DS did not have these).

Oh your poor DS - wolves! That is going to take some managing. You must be relieved to know what was causing his problems.

thanks Sally. DS wasn't actually losing weight, just not growing, but I know tht other children do lose weight. He is doing really well now on the gluten-free diet, and the consultant says we should expect a growth spurt in the next few months. Only now, we think DS2 is showing similar symptoms, at least we will catch it earlier this time..