Sons lost weight help me

[GreyCatty]

Please be kind

6 year DS. Neurological condition undiagnosed. Does not walk, low muscle tone, kind of non verbal, epilepsy, cognitively very aware and functions like a younger 4 year old.

In March was weighed by neurologist at 18.4kg
This week took him to the chemist t be weighed as i wanted to make sure his medication for epilepsy was at the correct dosage and he weighed 17.4kg..... on my scales he is going from 17.4.kg..to 17.9kg...

I don't understand why he has lost weight. Hess grown taller. He eats okish but hes picky, but id say he eats the same as 12 months ago...only difference is he has swimming lessons once a week where he works hard and has been holding our hands more and doing lots more walking holding our hands (he cant balance on his own)

I have 10000000000000000000000 percent health anxiety and i have gone of the rails with this thought of him loosing weight. Please be kind, I feel terrible with the worry. It taken me about 3 5 seconds to write this entire post i feel that manic

i do feel calmer after typing here... im waiting for the GPs phone call...i do hope its just a case of he isn't consuming enough calories in his diet rather then the thing i dread the most: a link to his undiagnosed neurological problems...even though he is getting stronger and moving around more !

Sounds like he's just fine to me if playing about

So my son is a brat with food too and it really affects me

I just take it off the table if he doesn't want it and then I put it in the fridge

When he comes back down i plate it again and fresh bits on the sides and he eats

Can you get him to eat in front of the telly so it's less focused? Do you try to sit with him when he eats, maybe he feels hounded.

as you said his cognition is excellent I would explain to him that you want him to have control over some things but not others and not eating is a bad choice because he won't have enough energy to play.

I made a food pyramid drawing with my son and I told him about the food groups and he coloured in the bits on it that we drew together

You could do that with him then get him to pick things on his pyramid he will eat

A financial incentive for him eating so he can get a toy?

I would just let go of all of my worries eg what time he wants to eat, what place he wants to eat and focus more on him and you having an enjoyable relationship with food

You sound like a fucking brilliant mum. You care so much. I love that you've asked and have worried about it, that is gorgeous.
I also love that you drag him about with family life because he is his own normal. Don't get down with the lingo and resign him you or the family to any labels or boxes

If only all parents cared as much as you

Lots of love xxxxx G

Children ( and adults) really do need fats in their diets. There are obviously good and bad fats ie processed fried oils not great, but butter/ eggs/ oily fish/ olive oil/ cheese/ yogurts/ milk/ avocados/ nuts all fairly essential in daily diet.

I try and include ‘fats’ at every meal. Ie Ds today will have had milk at breakfast, cheese with lunch, and yogurt this evening. Plus milk to drink.

Cult kid, what a lovely post. I do feel very anxious at the moment but from that aside i appreciate you acknowledge that i don't resign him to any labels or terminology out there. He is just 'him' and we support him as best we can but nothing, NOTHING holds us back. We got him to the top of sand dunes the other day and that was not an easy task getting a child who doesn't walk or balance to the top of one of them!!

i don't think people see how difficult things are. He is a good boy when visiting other peoples house and people must have the impression that life is easy for us as he cant walk or run around and get up to mischief that way...but he does get up to mischief, we just help him physically get there! When my friends are having a cup of tea and their children are playing out...we are also the parent that is playing out and not sat having a up of tea...we are the parents inside the soft play frame and not sat socializing with the rest of the adults over a coffee. its nice to get this off my chest because its hard. We have no outside support network as my parents are elderly and siabled (I'm only early 30s) I'm tired and I'm worried about him allllll the time and his mental health and well-being.

@grey

They are so heavy especially if he hasn't got the muscle tone it doesn't sound as if he can help you carry him

Focus on his intelligence and empower him into making decisions which are ones you can all live in peace with. I have explained to my son so many times that he won't have all of that petrol he needs to run his engine if he doesn't have dinner

I tried being gentle
I tried bribing
Tried telling him off
Tried ignoring him

But the fact of the matter was if he didn't eat we all suffered

I could write the part about being agreeable and lovely for my son too, so Delish with everyone but us.

Ditto the soft play. If we go to the park I am that mum running so fast trying to negotiate with him and asking him to stay close etc it's hard. You have all my sympathy and empathy. My parents are far away too.

Is there a fantastic nursery or pre school he could go to or does he go to school? Does he eat their food?

I personally thing anxiety is an asset because it connects you to humanity

Keep your giant fucking heart xxxx you rock

Where do you live can you find some like minded friends? Are you using the mother load group on Facebook? It's a great group really supportive. Xxx

He go's to a main stream school and has a place at a special school in January to start.

tbh, his one-to-one wasn't that great. She was very blasé with what he consumed at dinner times, for example "he only ate the rice, not the other things" and this was most days. He will have a new one-to-one in September sop I'm going to make sure history doesn't repeat itself.

It does help to be reminded that other parents are in my shoes regarding the never stopping! I'm lucky as if i wanted a cup of tea in a café i can actually have one and my DS would sit there with me (moaning about it) but he would sit and eventually suck it up.
Its not that I'm happy other parents are in my shoes, that's awful but its nice to not feel so lonely.

I'm not on Facebook but when he begins the special school i am hoping to meet new parents there and my world may grow a little x

Grow your world because see how this thread has helped you? That's what you need in real life.
You need a chum to text and say my son is being an arse I've cooked him what he asked for and how he won't eat

Or I'm knackered I didn't stop all day

I am the mum who asks for a cold coffee or I wouldn't be able to drink it

If I even go to wagamamas I'm up before basically all the food is on the table

The constant diversions of the tantrums, attitude, anxiety.. are utterly draining

My parents are not in England and I miss them so much. Wish they would take my son off me for half a day on the weekend so I could breathe

I know it's a bit of a cliche but to be honest I think you're exhausted (obviously) and that is affecting your ability to cope with pressures you could historically deal with. It sounds like he is more relentless then low weight and the fact he is relentless means you're knackered and when you're knackered you're anxious and have a low tolerance and the cycle continues

I, along with many many many other women on this forum will confirm to you that kids eat when they are hungry and that a lack of sleep makes everything a million times worse

I would look at booking a night and day or two away from your son and going off with a friend

Xxx

UPDATE:

Spoke to GP who referred to a nutritionist....

After speaking with GP I decided that I would go to the place where DS was last 'officially' weighed by the neurologist, in March and weighed 18.7...

Got there and told the receptionist my dilemma she said that the room was locked where the original scales are but she took me to a side room with a brand new set of weighing scales, digital... he stood on them and weighed 19.3 kg, therefore putting on weight.

Why did my scales and the scales at the chemist say 17.something kg??? Whos is right and whos scales are wrong?

Why would some scales say 17kg and the ones in the clinic say 19kg?

To be honest he held his own balance on the scales in the clinic however when hae is on my scales and the ones in the chemist they are too small so he has to hold onto something like the door or a wall.

If he is holding onto something when being weighed then that will impact on his weight.

Do your hospital not have the seats he can sit in to be weighed? Will probably give a much more accurate reading if he struggles to stand

That's good news, it could be the scales and also you have been referred. Small steps op , you are doing fine.

When weighing him he has s been holding onto a chair or my hands. He weights 17spmething kg whilst doing this.

Before when he stood on the very large scales that are i guess meant for wheelchairs, he stood on his own for a few seconds and weighed 19.3kg

My son has been having tests and been seeing a paediatrician due to losing weight and I have found that their scales vary quite a bit to my GPs and mine at home. I was advised to weigh him weekly on the same scales to get a consistent measure of increase or decrease (even if it does differ from the hospital scales overall).

i just really hope he has put weight on and not lost. HE FEELS LIKE HES PUT IT ON, THATS WHY I WEIGHED HIM IN THE FIRST PLACE! tO SEE IF HE HAD PUT THAT MORE ON THAT HE NEEDED HIS MEDICAION DOSE INCEASED!

woops didnt mean to shout!

If he's holding on to anything when he's being weighed it will come up as lighter, so the clinic scales are right, not the first ones. (I weigh children daily in clinic) we have a set of chair scales especially for children like your son which are much easier & more accurate. If a toddler holds on to our normal scales then let's go the weight really changes. If you can't use sitting scales are you able to physically hold/carry your son? Then you could stand on the scales holding him, then weigh just yourself & subract that from the first weight. That's what I do with the younger ones that won't stand on their own

It will be holding onto something, however slightly, that will be lowering his weight.
Great news is, it's one less thing to worry about - his weight is doing what it should.
Sounds like you can keep following his lead on food amounts, because he is actually taking the calories (but perhaps not the balance) he needs.

Just aside from whether he has or hasn’t lost it gained... your kids do need fats in their diet. Healthy fats. They support brain development and function. Things like

Avocado
Olive oil, sesame oil
Good quality butter
Whole fat milk
Full fat Greek yogurt
Nut butters
Eggs
Fatty fish (eg salmon)

All really good. When given in appropriate portion sizes they won’t cause obesity.

thanks guys, a real heartfelt thanks.

There are good people in the world who have taken time to reply and help me.

so kind.