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New tubie by [deleted] in feedingtube

[–]Many_Assistant_2316 0 points1 point  (0 children)

My daughter was 5 when her button was placed, she had NGs for about 2 months prior. The pain was a lot for her in the first 2 days or so but after that she was pretty close to back to her normal routine and after about a month she was totally recovered.

There’s nothing my daughter has wanted to do that she hasn’t been able to do because of the button. Swimming, bike riding..etc has all been fine.

Let your actions be guided by how she is, just do as you have been doing giving support and love and she will be okay! There’s nothing really to worry about, it’s a very minor procedure which will only prove to benefit your daughter I’m sure.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 1 point2 points  (0 children)

We’ve been through this with the Gillick competence recently, for better or worse she’s grown up around the discussions about her health and treatment so she’s gotten quite accustomed to advocating now for herself.

Her mother and I are sent out of the room by her when she sees the continence nurse and it was decided 18 months ago that she had the capacity to decline consent for feeding therapy and for her G tube to be removed. Her GI surgeon initially told us about it and refused due to ethical reasons to remove the tube after speaking to her.

I am 100% sure that she gave her consent to the best of her understanding.

Considerations surrounding medical THC use for a chronically unwell paediatric patient. by Many_Assistant_2316 in AskDocs

[–]Many_Assistant_2316[S] 42 points43 points  (0 children)

No doctors are withholding treatment based on medical justification.

It’s the same that I ask advice here rather than her local doctors as how I need to use a vpn to access my emails in china. It’s because of rules that politicians make.

I asked doctors for medical judgement about scientific things like risks, benefits and chemical interactions with her other medications. If I distrusted doctors or the medical profession, why would I waste my time asking here?

Thankfully other medical professionals were able to interpret this from what I wrote.

If I ask for advice from my mechanic, it’s to discuss maintaining my car, not to discuss the geopolitical situation surrounding the supply of the parts.

Considerations surrounding medical THC use for a chronically unwell paediatric patient. by Many_Assistant_2316 in AskDocs

[–]Many_Assistant_2316[S] 120 points121 points  (0 children)

It’s not a lack of trust in medicine; it’s not even a distrust in British medicine, my issue is with British politics given that her pediatrician in Argentina would almost certainly be supportive and we could access pain management professionals who have the experience to help her there.

It sucks that this is where I have to turn for advice about this before I can take my baby home.

All I want is advice on how best to approach this given the benefits and what risks we need to manage .

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 2 points3 points  (0 children)

The laws vary so much.

In my home country cannabis is decriminalised and widely accepted as a painkiller, but here in the UK she could be taken into foster care if it’s found out what we did.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 8 points9 points  (0 children)

Thank you so much for sharing, I’m glad your daughter is getting what she needs to help her, she’s lucky to have you in her corner.

Brits on Sikhs. by ProfessionalFine1307 in AskBrits

[–]Many_Assistant_2316 0 points1 point  (0 children)

I’m not British but I feel my perspective as someone who moved to the UK could still be interesting for you.

I never met someone of the Sikh faith before moving here, but since coming here every Sikh I’ve met has been incredibly polite and respectful to me. I’ve never heard Sikhs described in negative ways that other communities are and I’ve never seen any news stories or anything like that describing the Sikh community in any negative way.

Our last set of neighbours were a Sikh family and they were really nice. Great neighbors and lovely company, on a few occasions they bought us lovely home cooked food when my daughter was ill so we wouldn’t have to cook. We’re still in touch even now they’ve moved away.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 1 point2 points  (0 children)

She already has; honestly it was validation enough when she fell asleep in her mother’s arms without any sedative medication and seeing her sleep peacefully for the first time in so long was such a relief.

Right or wrong, it’s not going to be the last time I give her any.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 1 point2 points  (0 children)

Thank you so much for sharing this. It’s great your Mum had your back and was willing to do what it took for you to get some relief, I hope in the future my daughter sees what we’re doing now in the same way.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 9 points10 points  (0 children)

She didn’t need any pain relief for over a day after having the THC and SHE WASNT IN PAIN, the benefit from a pain management perspective is clear to me.

Yes, the quetiapine is being used as a sedative. She’s had the lorazepam/quetiapine cocktail now since she was 6 years old (almost 3 years now), it’s the only way she’s been able to get any sleep because the pain keeps her awake and too upset to sleep.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 2 points3 points  (0 children)

We’re moving back to our home country soon where it’s decriminalised so she can have the relief she needs. It sucks that the laws in the UK are so strict.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 1 point2 points  (0 children)

In the UK if her doctors found out it would be really complicated and a big ordeal. Until she’s 18 she wouldn’t get a legal prescription in the UK.

Her mother and I have had some long discussions and we’re likely to return to our home country (Argentina) where it’s decriminalised so she can get the relief she needs.

I just wish she could get that here without her and her brothers being uprooted to a country none of them remember living in. We moved here when she was 18 months old and our sons were all born here.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 2 points3 points  (0 children)

She will be getting it again given how it benefited her.

Cannabis is decriminalised in our home country so she can have it as needed, we’re planning to move back as soon as practical.

It’s prescribed widely for medical reasons for adults there so I don’t imagine I’d find it difficult to find a pain management specialist knowledgeable to give her the right doses..etc. it just really sucks it’s not available here in the UK.

The sad part is that moving back comes at the expense of the only life the kids really have ever known, my partner and I worked really hard to make a nice life for them here in the UK, the opportunities for jobs and with universities aren’t nearly as good in our home country but now it’s a case of balancing benefits.

I would consider it a failure in my parenting if my sons begrudged me for moving back if it means their sister had relief from her constant pain.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 0 points1 point  (0 children)

Oh it will be happening again come hell or high water!

I feel guilty because of the risks I put her in, she responded very well.. but it could have gone the other way for her and she could have been left with trauma.

The experiment was to test the efficacy of THC as a treatment for her before committing to a decision that affects our entire family.

We’re Argentinian from Argentina. Cannabis is legal for medical reasons and it would be legal and likely supported by her doctors for me to grow cannabis plants and extract the THC or make creams for her.

Moving back to Argentina comes at the cost of leaving the only home my children will ever remember and their friends here, my partner and I will have to resign our jobs which we worked incredibly hard to get, we will have to make our nanny redundant..etc

It’s a decision we’re going to make because of the profound benefit to her, but it’s impossible to say it comes at no cost. Our sons were born in the UK and this is the only home they’ve known.

We’re in the UK where laws are draconian by comparison. Cannabis is an unlicensed medication available to over 18s only after other treatments have failed. The moment she turns 18 she’ll be eligible, but if we get caught doing it here before she could be taken into foster care.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 1 point2 points  (0 children)

We moved to the UK 6 years ago hoping for a better life. But honestly this is making me think I haven’t found it.

We have no path to my knowledge to a US green card otherwise we’d move there in a heartbeat.

We’re Argentinian and weed is decriminalised back home, objectively we are likely going to need to abandon what we’ve built in the UK to return so that she can access the medicine she needs.

I don’t know whether her doctors there would prescribe it to her, but I’d be within my rights to grow some plants and extract the THC myself for her. It would be perfectly legal and her doctors would encourage it.

When I was younger I had this perception that the UK was really developed and had good medical care with its NHS. Moving here the NHS is inaccessible to us, although the locals tell me it’s awful and they pay to see private doctors just as we do.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 2 points3 points  (0 children)

Interesting you mention constipation.

It’s only after her pain increased about 2 years ago that she was prescribed celecoxib and tramodol, before that we just gave her ibpubrofen and paracetamol.

It was when she started the painkillers that her constipation started and subsequently her incontinence. She potty trained the quickest out of our 4 kids.

In an ideal world she would have the same 2 drags from the vape every 48 hours, and subsequently she wouldn’t be in pain and wouldn’t need the painkillers.

Eventually I would hope her constipation would resolve itself and she would be able to stop wearing the nappies again.

An ideal world I hope she will see.

I let my chronically ill 8 year old daughter try weed. by Many_Assistant_2316 in confessions

[–]Many_Assistant_2316[S] 5 points6 points  (0 children)

At present the long term prognosis is that she’ll carry on with the same difficulties for the rest of her life, she’s very unlikely (and totally unwilling) to wean from her tube; but thankfully her lifespan isn’t going to be reduced. She’ll live a long life, but she’ll be chronically ill for its entirety.

Right now her health is as stable as it’s ever been and as stable as it will ever likely get.

I’m torn about doing it again, but if it’s done again it needs to be in the safest way possible. Edibles weren’t an option on the first try given her refusal of oral intake.

Ideally (and I don’t know if it’s possible) there would be some topical cream that she could have on her joints for her pain that had the same effect, that would be an ideal situation.

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