Delayed development - no weight gain - how worrying is this?

[Firsttimer7259]

Our daughter is 26 m and has GDD. She is about 12 months behind. She was weighed in Oct and then in Feb in diff hospitals and had put on only 300g. So I have been monitoring on the scales at home and shes been fluctuating the same half kilo. I think shes growing in height but she is starting to look beanpole-y. Shes not standing/walking yet and her limbs look fragile. I have made an appt with HV to get her weighed and think news wont be good.

She was eating well (maybe not so well past few weeks as she has a cold/ear infection) but...

any experience? does this indicate anything that peads need to consider?

Hiya

Didn't want your post to go unanswered. Definitely it should be considered by the paediatricians, my DS1 had a referral to a special feeding clinic run by the SALT team which assessed the way he used his lips, Tongue and swallow. He was and still is a slim jim but ears really well however it is being considered in terms of a diagnosis and he's having some test to rule out various things that can gave poor weight gain and developmental delay as signs.

Of course I meant eats not ears

My DD is 25 months and we have struggled with her weight. She has put on 3 - 5oz a month for the last 3 months and is underweight. We were referred to a dietician after she lost weight last year. We were told to feed her crisps, puddings, full fat milk, cheese, cream etc.

She has CP, GDD, epilepsy, vision problems but was diagnosed early after she suffered fits and was in SCBU at birth. We have regular visits from physio, portage, OT to name but a few.

She is underweight but on the average scale for height. Its getting a right pain to find trousers that are long enough in the leg but with an adjustable waist. We had a skirt as a birthday present which was age 2 but it fell off when we lifted her up.

She can't sit up yet but can roll for England! She eats like a horse and enjoys her food but it can take up to an hour or more for a meal. Not surprisingly puddings go down a lot quicker!

How does your DD eat? Have you tried feeding her little and often?

Her trousers are falling down now, same trousers shes had for about a year. I had approached this is feb by adding more puddings and pureed fruit thinking this would be something easy to eat. She eats what we eat so reluctant to go for lots of creamy food, but we may start adding cheese and cream to hers. Maybe noting down what shes eaten to see. I think she eats pretty well, she was a huge baby and always loved her food so I am a bit baffled. She has five meals a day, do you feed more often than that? (b'fast, snack, lunch, snack dinner)

We had to fill in a food diary for a week leading up to the dietician appointment and she pointed out where we could add more calories to what DD was eating.

We generally have breakfast, elevenses, lunch, mid afternoon snack, dinner followed by a pudding. Usually a bar of chocolate some time during the day. Full fat milk for drinks, water and the occasional watered down squash.

Has she become more active and burning off more calories than she used to? Our little monkey won't keep still at the moment.

She is actually down a bit in weight now. I am going to add cream, butter cheese and oil to her portion and keep a closer eye on what in her portion she actually eats. I am hoping its just the string of illnesses plus me pushing her to spoonfeed herself.

Booked new weighing appt for a month from now and am determined not to panic.

Don't panic, you might find she'll pick up on it. Let her go at her own pace and certainly try her with higher calorie foods. Sure it's just a temporary blip and she'll be fine!

My son had such poor weight gain without any cause found that we eventually got referred for endoscopies to look at his GI tract and they found a condition called eosinophilic gastrointestinal disease. essentially it is an allergy to foods, he was put on a special diet and monitored, he grew 2 centiles in weight in a month.

We also added double cream to his portion off food (worked a treat). In addition to the 5 meals/snacks you mention mine also have milk and a snack before bed.

Sorry to hijack OP - I seem to be doing a lot of it this week .

Submarine, your post struck a cord with me. My ds1 has always been very lean and we struggle to get and keep weight on him. He tested negative for coeliacs - although was ill with d&v bug just before the test and hardly ate for 10 days, so paed thought that could have affected the result and recommended he was kept gf just in case. He did gain weight initially when he went gf, but then suddenly started to lose it again for no apparent reason. It has taken over a year for him to gain back the weight, with no gain at all for the first 6-7 months of that.

The reason your post struck me, was that the paed has being running some blood tests to check for various things and the three things that came up as anomalous were raised levels of B12, protein and eosinophils. (Worth pointing out here that he is a vegetarian, so would normally be expected to have low B12.)

Paed didn't have a clue what these results might represent and put us on a 6 monthly monitoring appointment whilst awaiting stool sample/enzyme results that have since come back as normal. Since that appointment, ds has very slowly regained the weight he had lost (so he now weighs about the same as he did in September 2010 give or take a pound) and we are due back at the paed's in May, although he was making noises that suggested if the stool samples were normal he would discharge at the next appointment.

Does this sound like it could be something similar to your ds or am I way off the mark? Its so frustrating not being able to get to the bottom of this weight problem, especially as our paed is coasting to retirement and wasn't concerned because ds was clinging to the 2nd centile for weight, so not under the red flag - iyswim. (He is now between the 2nd and 9th centiles, but despite being tiny eats twice what anyone else in the family does - including his father and has only gained weight from us making a big conscious effort to feed him up eg big portions, high calorie foods, 2nd and 3rd helpings etc.)

Again - sorry for the hijack OP, Submarine's post just jumped off the page at me.

moosemama I have sent you a private message