Hi,
Have had Fran weighed today…...am jumping for joy, in 1 week she has put on 12 ounces! That puts her in the 9th centile! ( I think). Can hardly believe it! Her consultant set a target of 1lb in 7 weeks. Am 3/4 of the way there in 2 1/2 weeks and cons gave us 7. Am thinking of starting a Maxijul Fan Club! Won’t get complacent though and will keep putting cheese and butter in everything she eats, as well as the powder. And she’s stil enjoying the avocado. Grateful for any more tips though.
Jayne & Frances x
Fantastic news, keep it up Frances and Jayne! Another totally fattening thing I used to buy Jack sometimes was a hash brown from McDonalds. He wanted to eat there and that was something that he could manage. Totally unhealthy but he loved them, still does but I rarely buy them now.
Jody
Hi,
Just thought I’d update on fran’s eating/weight issues.
From last posting to say that she had put on 12 ounces in 9 days I am absolutely gobsmacked to tell you that after having her weighed today she has actually lost 7 ounces in 12 days! I just don’t understand! her eating isn’t any better or worse than it has ever been, plus she has been getting the maxijul powder still, cheese and butter in everything, lots of avocado (she ate a whole one at lunch today) etc etc. She has only ever lost weight twice before, both times after being ill (once an infection, once surgery) and certainly never this amount. She has had a cold for a few days but I don’t seriously think I can put it down to this. Just wondered if anyone out there has had any similar experiences or can offer any advice?
Jayne x
Hi Jayne, I didn’t see your first post about the weight going on, but try not to get down hearted. Were the 2 weights done on the same scales? I know after 3 years that every time Harrison goes to the children’s clinic, he goes down in weight EVERY TIME!!! But then the HV comes to our house and uses her scales, and he has put on again.
I’m sure this has already crossed yr mind, but maybe the weight on 12th March was mis-read by the person who did it, and she had put on a bit of weight but not as much as thought. Overall, has the weight before the 12th March gone up compared to now?
12 ounces seems a huge amount - it has taken H months and months to put that on - perhaps a year?
Something doesn’t seem right if she is eating well but losing weight - I can’t help but think someone gave you duff info??!!!
Claire xxxx
hi claire,
same scales we always use, health visitors, actually, now you mention it she had the scales on the floor and usually they are on table - maybe that would make a difference? i really just can’t understand it…..
fran lost 3 ozs just after we saw consl’t, which was unusual, as i said she has only ever lost twice before, but overall she has put on 2 ozs since our appt with him on 22 feb.
jayne x
Ditto to that. I was just about to write the same thing as Claire! Just something to lift your heart, I’ve a feeling my daughter Begw, 21 months, actually weighs less than your daughter. In fact, after the week I’ve just had, I’m almost certain she does! Husband, son and toff daughter all caught this vomiting and diarrhoea bug and she really, really scared me - to the extent that I rushed her to Alderhay last Tuesday night convinced she had a stricture ( it’s a journey of 3 hours from here - complete overreaction on my part - she’s never even had a stretch!). Anyhow, she hardly ate for a week, and wouldn’t have looked out of place on one of these save the children ads - little spindly legs, big bloated tum. Today, she ate a fish finger, scrambled egg with cheese, croissant, packet of crisps and about a zillion biscuits - and two yougurts. They’re busy little people at their age, always on the go - their food intake goes to fuel their energy.
Oh, one more thing - my daughters best friend happens to be the daughter of my GP, and she’s smaller than Begw, and doesn’t even register on that little red book. My GP is absolutely non-plussed.
Hi there, got the best news ever this week, no more ops for a number of years. Bern is only 20kg and will be 10yrs old in October. Don’t be disheartened, these great weight gains are very exciting, as long as she is healthy just keep doing what you are doing:o) they do burn alot of energy just growing.
Bern has spent her life in 3% and now is down off the scale. However, she had her 51st dilatation this week and they check her stomach and small intestine, biopsied for allergies etc. Her insides are perfect no acid burn anywhere, microabsorbtion is great. The doctor said she is the healthiest tof/oa he has every seen, she is small but not malnourished. We have been using XanGo for 6 years and she has had amazing health ever since.
I do understand that wieght is always a concern, but with these kids really there are no real guidelines that are accurate - so it sounds like she likes to eat and that is your battle won.
Hi Jayne
You poor thing, it is a roller coaster isn’t it. I remember Jack fluctuating in his weight when they weighed him every day and all the stress that caused. We all fluctuate, we just don’t weigh ourselves as much. Just keep going, you are doing all the right things, and all you could ever do. As long as she is happy, energetic, playing and reaching some other milestones. She’s eating well, and a great variety of food.
Jack’s surgeon commented recently that he is small and skinny and how he used to be a chubby baby. That’s because he was ‘force fed’ via his gastrostomy to what we were told to do. Clearly for him, it was too much. Once we stopped his feeds, he lost weight and then slowly put some back on. Never back to what he was, but he is full of life and energy. He now grows taller but is still very slender. He goes off his food easily and loses weight when he gets sick but once he’s better eats well again.
I also have a friend who’s child isn’t on the chart. She is a little dynamo, has had zillions of tests but is just small. At last the dr is leaving the mother alone and just accepting that she is a small child.
Keep going, you are doing all the right things for Frances.
Jody
Hi,
Things are looking gloomy again.
Frances just isn’t eating well at all at the minute. Just shakes her head and refuses food. So I have started to give her milk, with maxijul powder in, when she refuses her food, just to see if I can at least get something in her that way!
We see her consultant 12th feb so will see what he has to say.
I’m getting her weighed on the friday before so will let you all know how she has done x At least an idea of her weight gain / loss will give me an indication of how the consultant’s appt will go so I can be a bit more prepared this time!
Jayne x
yep, please don’t worry. Begw has eaten the grand total of 3 ginger biscuits today. She has a runny nose…....it’s probably a virus. Your little one will be fine, I’m sure of it. Sx
Well, would you know it?- After a stressed out weekend, Fran has succombed to the dreaded cold/virus/whatever that I’ve been trying to avoid during this ‘putting on weight’ period. A trip to the gp this morning leaves us with a 2 week course of abx. Am ready for the onslaught of diarrhoea that the abx always gives her and hence the weight loss. But if she does lose weight now at least I can give her consultant an excuse! Still, if she gets a couple of doses of abx in her then she might start to feel a bit better and eat again - talk about swings and round-a-bouts!
I have been giving her as much of her hi-cal milk with ‘magic powder’ in it.
And I have one more question, last night Fran was sick in bed, she’s never sick, hasn’t been sick since November when she had a temp. Anyway, the consistency (ugh! and yep, I did analyse it!) of the sick was definitely that of food and not fluid, which I found strange as she had not eaten anything for nearly 3 days, and very little in the few days before then. I would have thought that any food that she had on her tummy would have been digested by then? does this suggest to anyone that it could have been food stuck in her oesophagus? or am I really super-over-analysing things??!!
Jayne x
Hi Jayne
I’m glad to know there’s a reason for Frances not being interested in her food. Hope she gets better soon. I think you are worrying too much about the food she vomitted up. At a risk of sounding gross, I remember seeing carrots in vomit years ago…during my clubbing stage and I hadn’t eaten them for ages…. It’s kind of a joke over here, finding carrots in vomit. I understand though, until recently when we got Jack’s pooing under control, we had loads of looks and discussions every day about that.
Poor Fran getting diahorreah with abx. Does it happen with all of them or just a couple of types? Maybe it might be worth trying some acidophilus powder to see if that helps her. I just sprinkle some on Jack’s food or in some milk.
As one of Jack’s drs says “carry on and wait for growth”. It does get easier. Jack still gets quite ill, now on his 6th course of abx for chest, but at least he can tell me about it now.
Hope you don’t all get it too. Mind you if you did, you might need to postpone the drs appointment for a couple of weeks.
Jody x
Ok, the time of truth….........
had Fran weighed today and after our last consultant appt she has only put on 6 ounces-he had set a target of 16 ounces! Can’t really figure out what the scales are doing! Her weight’s been up and down like a yo-yo these last few weeks, usually it just creeps up at its’ own little pace.
She has stayed steadily on the 2nd centile.
So, will just have to see what consultant says on Monday, but I have taken on all of your ideas and advice and I will put forward many of the counter-arguments re the g-tube (from what I have learned from all the people on here), to still try and keep that tube out unless absolutely necessary!
At the end of the day, Fran may be small but she is developing well physically, mentally and socially and she is a happy, active little girl.
She’s just small x
Jayne x
