Autistic teenage vegetarian daughter refusing prescription meds.

[taratill]

Posting on AIBU for traffic.

Does anyone have any experience of this and how to work around it?

DD is 16 (so she has to consent to treatment), she is autistic and has very fixed views.

She takes vegetarianism to the extreme generally and this has been an increasing issue over the years with her refusing cross contamination and not wanting to be near where meat is prepared or sweet wrappers even because of gelatine.

She's normally fit and healthy but the last few months she hasn't felt well and has been experiencing headaches and dizziness and palpatations so she's just had bloods done and it turns out, perhaps unsurprisingly that she's anaemic and has low B12 and vit D. The doctor has phoned and has left the prescription at the surgery pharmacy wanting bloods redone in 3 months.

I've called her and she has said she will not take the prescription if it is not specifically vegetarian, the doctor does know she is vegetarian and autistic but I'm not sure if the meds prescribed will be!

She is an intelligent child but her views on this are horrible. She would rather be ill than break her own rules around products being vegetarian.

I just don't know how to sensibly approach this. I guess if the prescription isn't suitable i can make an appointment for her to explain to dr why she is refusing treatment.

Does the Mumsnet hive mind have any other ideas/ experience? She's at 80% attendance at college due to frequently feeling too washed out to attend and she is county level sport and this is impacted her in that too.

There is just no reasoning with her so it's exhausting.

Ok so I guess I'll check and request vegetarian alternatives if he hasnt; prescribed them already.

Been there op. I ended up having to buy large quantities of vegan otc tablets because the prescription ones weren’t vegan (15 years ago now). My iron tablets are quite a high dose, from Holland and Barrett and are vegan, suggested by my gp because I pay for prescriptions. Better than nothing op, sooner she starts getting some supplements the better

Usually the way it works is that the gp prescribes the drug/tablet and the pharmacy issue whatever brand/etc they have in stock.

my dd is on levothyroxine and like many people who need it the brand matters so she has to talk to the pharmacy.

the prescription will be for eg iron tablets particular strength.

it is sometimes possible to get the gp to put the brand name on the prescription but they are generally reluctant to because in that case if the pharmacy does not have it they can’t sub in another brand or a generic and you get nothing and have to go back to the gp.

maybe go to the pharmacy and ask them first?

I ask the doc for vegetarian ones. No gelatine capsules. And it’s fine. Or do that for the repeat at least.

You are better off discussing with the pharmacist once you have the prescription. The GP will not have a clue.

Iron and Vit D are generally vegetarian though.

With her iron being so low that she’s anaemic why isn’t the GP recommending an iron infusion? It will get her iron levels up quickly and easily, and then she can go to school more and feel better. Is she okay with needles? Iron infusions are so easy compared to months and months of constipation, tummy upsets and continuing low iron levels. My DD had her first at 11yo. She has ASD and coped surprisingly well with the infusion. The doctor who did it was great. I’ve numerous iron infusions too.

B12 should be available as an injection to quickly raise her level of that.

I would definitely be suggesting to your DD about seeing a dietician together to find out what she should eat to make sure she’s eating a nutritious balanced vegetarian diet. Clearly it’s not nutritious right now or she wouldn’t be so deficient in so many nutrients.

My daughter was prescribed iron tablets and they stated on paperwork suitable for vegetarians.

Is she anemic due to iron levels or b12 levels or both ?

Iron levels can be raised with tablets over time.

B12 is really tricky to raise with tablets/vegetarian diet alone. I'd push for 'loading doses' by injection to try and raise them. The injections available on the NHS are vegetarian ( actually vegan )

B12 is a very common deficiency in vegetarians. Try adding nutritional yeast to meals, it's a source of B12, as well as lots of other goodies. It won't be enough on it's own but it's somewhere to start.

Good Luck

Try her with double the dosage of non prescription vegetarian pills. You can also arrange a vit b12 injection for her.

Try to Improve her over all diet as I think you can get most of those nutrients through food and then she will need frequent nutritional yeast flakes for b12

I have b12 tablets from Holland and Barrett, at the same dose prescribed by my GP. They say vegan on the front.

www.hollandandbarrett.com/shop/product/holland-barrett-high-strength-slow-release-vitamin-b12-1000ug-180-tablets-6100011430

I'm vegan and there is no need for her to be deficient in anything. Help her find some high quality vegetarian/vegan supplements (EXTREMELY important for B12) that she can take. Tablets, gummies, capsules, sprays, there are many options.

Nutritional yeast is good for B12 too if she enjoys the flavour.

Many mushrooms such as chestnut and shiitake are high in vitamin D.

A little trip to the health food store might be a fun activity for you both to enjoy and learn about vegetarian nutrition, and for her to see that you take her lifestyle choice seriously.

In future, just request a vegetarian preparation of the medication from the dr. It will exist because there are people avoid animal products for religious reasons.

I appreciate you're worried about your daughter but it's pretty easy to find out if medications contain animal products. I'm a vegetarian and I've done this; I also avoid preparations with gelatine. I actually don't think your daughter's rules are horrible. She's committed to vegetarianism and this is part of it.

Talk to the pharmacist - they’ll be able to help.

NB: it is easy to make up a prescription strength dosage by taking the equivalent of OTC meds. For instance, if the GP has prescribed 2000 micrograms of Vitamin D and the OTC vegan version is 400, she’d be taking 5 a day.

Vitamin D often is synthesised from lanolin so vegetarians may accept that, vegans less likely to. NHS loading doses may well be from lanolin source. The vegan society sell a supplement from a plant source but it may absorb less quickly. You are able to make vit D now in the UK if the sun appears. There's an app called D minder where you can do timed sun exposure and try to estimate how much you are getting.
More here https://www.sps.nhs.uk/articles/choosing-vitamin-d-products-for-vegetarians-or-vegans/

Is she vegan rather than veggie? You get a lot of B12 in dairy so sounds like she might be vegan? With drops the B12 should restore quite fast, if she insists on brands that say vegan on the packet then you can by brands that do, e.g. Dr vegan, vegan society sells a pill format which also contains iodine which is very important for young women's health too. Prescribed and low cost B12 supplements usually are cheap synthetic cyanocobalamin, no animal products. There's a blood test that the NHS don't routinely do called "active b12" but isn't expensive privately that can give you an idea if the supplements are converting to a usable form.

Most iron sold is vegan so shouldn't be a problem. More of a problem can be the digestive issues that come from iron supplements. Is her digestion OK? Digestive diseases are more common in autistic people.

NHS does not routinely test the following that also often are low in vegans - vitamin A, omega 3, zinc. It's really important that someone has enough of these to support their immune system. Genetics affect how much plant based can be converted to active vitamin for A and omega 3. You shouldnt supplement A and zinc without testing though as too much is not good either. If veggie there is usually enough vitamin A from the dairy sources together with the beta carotene plant foods. I would discuss those nutrients with the Dr too. You may have to test privately.

@taratill I'm with @FeralWoman - in IV infusion would be a MUCH faster way for her to get her iron stores back to a level she can function & compete properly.

From an NHS perspective, probably not keen to prescribe it, as obviously it's more expensive, iron tablets would get you there eventually, and essentially this is a disease of choice due to your daughter's diet.

With more compassion than the black-and-white what should the NHS be prepared to pay for or not view, I understand the challenges of ASD alongside her decision to be vegetarian & this probably resulting in a lot of food choices being off the table. Also echo PPs in moving cautiously at this age so it doesn't push towards more disordered eating.

Maybe discuss iron infusion option with GP, even if it means finding somewhere suitable locally to do it privately (usually of the order of £100 or so, so achievable for most in the circumstances). Then maintenance iron supplementation from OTC vegetarian brands is likely to be enough to keep her in range after a big bump from infusion. Or stick with ferrous fumerate long term-it takes a couple of months to really see the benefit though.

Agree a discussion with nutritionist would help. Can discuss sources alongside texture issues to come up with ideas. High fibre will be a thing if on iron supplementation long term, to offset any constipation issues.

VitD is a supplement everyone in UK latitudes should take Sept-May. We don't get enough sun in winter, and you need to have exposed skin without heavy sunblock for a decent amount of time daily in summer to make what's needed too really. We use a minty spray rather than tablets, so it's dead easy.

Good luck

iron infusions are incredibly difficult to get on the NHS because of the cost, not of the infusion itself but because it has to be done in a clinic setting (may sound simple but most NHS services are dealing with a lack of rooms/space available to them) with enough staff and resources to deal with an allergic reaction if it happens (it can happen in a small number of cases). She would likely need full iron studies bloods including transferrin saturation rate to see if she meets criteria for it.

Thanks everyone.

As predicted this is turning into a bit of a nightmare and she is still feeling very poorly. I've managed to order some iron tablets from an online pharmacy which meet her vegetarian requirements. She struggles to take them though.

@MeandT and @FeralWoman I would love her to have an iron infusion. The problem I have is that she won't as she has a phobia about anything entering a vein and she is refusing to entertain that point blank!!!!

In terms of is she vegetarian or vegan. She is vegetarian as she will eat dairy BUT her disordered eating around is is more like veganism in many respects, i.e. no honey, no geletine or anything animal derived. This extends to all products that she uses so hygiene products too.

Oddly enough she is going to have a session with a nutritionist through her county sport which is really helpful.

It's just a shame that she isn't well enough to participate in the actual sport at the moment.

oh and i've managed to source vegan B12 and vit D which is great.

Not sure about vit D but you can get B12 injected if that’s acceptable to her?

Vegetarian here who was diagnosed with very low B12 and D a few months ago. I'm on prescription B12 tablets that are veggie-friendly and high dose Vitamin D non-prescription capsules which are gelatine-free. It should be fairly straightforward to ask for suitable medications because lots of people need gelatine-free or dairy-free options for religious or allergy reasons. My GP simply looked them up online during consultations.

Another option for B12 would be injections if your daughter will tolerate those.

She should start to feel better in a matter of weeks once she's taking the B12 and D. I definitely did! Apparently it takes 3 months to return to some sort of normal levels.

You mentioned she has an ED. Is she underweight? The vitamins alone won’t help.

no she's just in the normal bmi range.

She does eat, it's just restrictive in terms of the ranges of food she will eat.

And if the food isn't prepared or doesn't meet the requirements (so if vegetarian food is not labelled as such on packaging or on menu in restaurant) she won't eat it as she won't take the word for it.

So it's more disordered eating than a diagnosed eating disorder if you see what I mean?

I am autistic, was vegetarian as a teenager and had an eating disorder because I was desperately looking for control in my life (not weigh instigated, although obviously then became about that). Treating the ED may be the only way to resolve this long term.