Or am I a bad mum for giving up?

[spidermomma]

Breif history/ ds has a medical condition that is drug resistant, we're currently trying the keto diet. Nearly 4 months in we've seen no change. It's really difficult as iv 2 younger kids 2 older kids so a lot of pressure on me to make sure his meals are right, everyone has a similar tea etc aswel as everything else with medication that he is on and dd been poorly also, he can't have any snacks - nor can the other kids - and this never has been a problem as if it helps him I'd do bloody anything but recently it's killing me as I'm making him miss out for nothing- so it feels

It's been 4 months, tons of changes and smaller meals each time to make it tighter. It's never actually changed anything with his condition and iv said I want to give it till the end of the month then bring him off it if I can't see any reason to keep him on it?
My issue is what if I take him off and in a couple of weeks it would of worked? Am I giving up to soon, is their more I can do? I just want him to have a normal life as possible he's enough to deal with. Without been restricted on his food also when iv never seen a change 4 months in. Their really isn't much more we can change on the diet but I keep thinking "what if"
The clinic are so supportive and their absolutely fantastic with the help they give us, I just don't want to give up so soon
Heads a mess!!

Not a bad mum at all! It sounds as though you have diligently followed the diet and that is no easy thing, especially with other children to prepare food for at the same time. Broadly speaking (and my knowledge on this isnt the most up to date) I would have expected there to be some positive change at this point if the ketogenic diet was going to be successful, so I don’t think it is at all unreasonable for you to be questioning how long (if at all) you keep persevering with it.

Can you speak with your child’s consultant and medical team? Have they given you any guidance of what timelines or parameters they are expecting for improvement on the diet? Eg reduced seizure activity / improved eeg?

Just thinking aloud, but please take away from this that no-one could consider you a bad mum for not wanting to continue this indefinitely, especially if your child is of an age where the diet itself is reducing their quality of life / ability to live normally.

I would ask DS's medical team, as many of them as possible, how long before they expect to see an improvement and would you be unreasonable to give up after 4 months?
How old is DS? Does he have an opinion?

From my understanding of The keto diet for epilepsy control it is normally done for a certain number of months and if in that time it makes little difference to the epilepsy then the child is taken off it and reverts back to their normal diet. Ask your medical team what is the time scale for your ds and when would they normally expect to see any improvements to his condition

Depends what the condition is and whether this diet was suggested by his medical team. Prioritise what's best for your child's health, not what's easiest for you.

@ReneeRol never once wanted an easy option for myself belive you me, I'd do anything to see my baby better no matter how hard it may be for me. this happened so randomly not even 18 months ago, I got told in March to try keto, nhs waiting list in our area is over 12 months! I fought to get him onto this diet to give him the best chance and even ds own specialist was so shocked they asked me to help other parents! So clearly can't be putting myself first that much surely ? But Hence my reluctance to want to stop as I fought sooooo god damn hard to give him the best chances possible!
All professionals involved have agreed if we don't see any change in the next few weeks with changes we make then to end the diet for My ds then to try some other options we have discussed.

Thank you all for your words x

Renee that is not called for.

Op you do not sound as if you at spurring yourself first! Anything but. You sound like an amazing mum

putting

You could seek advice from his consultants as to the time-scale that a diet would be expected to have an effect. If you have exceeded this with no effect then it is a waste of energy and cost to continue. This does not make you a bad Mum it makes you a sensible one.

Well the time we've been on the diet they have said we should of seen some sort of Improvement, I'm hoping we still will As this is our last hope but it's not fair him missing out on things more then he does anyways when it's not even helping x

Is it for epilepsy? A friends daughter has uncontrollable epilepsy and Keto has literally changed her life but it took nearly a year, and broke up their marriage through the stress. I don't underestimate how hard it must be.

I hope it works out for you.

@helloxhristmas Is that how long it took? Iv gone privately so not via nhs so we make changes every week to try get it to work better. Sometimes two changes a week, did your friend do this? That gives me hope knowing it worked and took a good year! I agree the stress it has on my relationship we are close to breaking point dealing with all the kids , dd having seizures aswel and then the diet to top it off. So difficult, it's really getting me down to as iv no help or support with covid. But We've genuinely not seen a single change and I think 4 months in we should of and we've made so many changes diet wise even special oils etc but nothing! Spoke to my consultant today and they've said if it isn't going to work this far in and all the changes and different ways we've tried then it probably won't be what's suitable for ds, genuinely kills me this! I'd do anything to take it away from him literally anything! Dieticians have agreed this also :( x

Just if anyone is following- I Spoke to everyone involved with ds. Their going to re test his blood and if the levels are good that will confirm the diet will not work for him- We have done longer then usual for the diet so they give 3 months- no change you come off. We're nearing 4 with no change but this test will confirm if we stick at it it'll work if his blood is low so we've theirs a good chance or if his blood tests are good and come back at a good reading, with him having no change then it won't work at all because we've done everything we can x

OP, I don't think ReneeRol meant it like that. She is saying do what's best for your child and not the easiest option (giving her the normal diet) even though it's difficult.

Op, I would keep on going. I did the Keto diet- well similar.. we did the low carb diet for one of my sons who was on the verge of being full blown diabetic as a result of a medical error (long story). That diet, which we did for 6 months, was the reason why my son did not become diabetic. Please stick this out for the next couple of months. Change would not happen over night. Keep in close contact with your medical team and keep on going.

As a family, about a couple of times a week, I would make a low carb dinner, so that the DC wouldn't feel left out and this worked really well.

www.matthewsfriends.org/

If you aren’t already aware of this charity it’s worth a look. They supported a friend and her daughter when introducing a keto diet.

@buildingbridge @toomuchicecream

We are in very close contact with Mathews friends and the daisy Garland to get support. And they are fantastic and the recipies have helped loads
It isn't hard work for me or anything I'm used to it, all the family has adapted we all have the same teas, all had Curry tonight and me and dh have mostly the same food as him

I'd love this to work save him been on dangerous medication! Any parent would I'd give anything and try anything to make his life better but right now he misses out on A lot due to his illness and he's always loved food so that is another thing he's missing out on and I'm seeing no benefit from it so I feel pretty shit about that. Not been selfish or looking for me an easy option but I feel shit he's missing out on something he enjoyed doing, we used to bake twice a week and it's hard now as I need to weigh everything so we don't cook really, the things we took most pleasure in. We can't so much now and it's sad

They've stated that in the 4 months we've been on it I should of seen some slight change atLeast, his condition is getting worse and it's scarily worse these past 2 weeks but we cannot change medication (see if any others can help more then the 3 he's already on) at the same time and quickness I'm changing the diet to suit him and try to make it work! Otherwise we wouldn't know if one worked an the other didn't if one did work, the test he's had done today is to show weather is body has a good level of carnitine in. If he does then this will mean the diet won't work for him as we've tried every option even keto oil, if he has a low level 🤞🏼🤞🏼 I hope an prey this is the case, we can add medicine to help this so the carnitine will be higher and could give us a good chance of the diet working - this was what professionals have said and I hope iv said it in the right way ! xx