Autistic teenage vegetarian daughter refusing prescription meds.

Your daughter, it seems to me and I am not a Dr, that your DD is using 'vegetarian' to hide an eating disorder.

I once watched a programme about a treatment centre for girls with eating disorders, one of their rules is that whilst in the treatment centre no one is vegetarian.

I'm sorry I cannot be more helpful OP.

My son is vegetarian and was found to have low iron. He was prescribed a supplement designed for vegetarians by the GP - I am sure this is possible for the other vits too. I would contact them.

My DS sounds very similar to your DD (and me).

Go with the lower strength, easily tolerated iron for now. There will be an improvement. There was a study a decade or so ago that found lower strength iron 3 times a week was more effective at raising iron levels than high strength every day.

I can't even tolerate the low strength stuff, after a few days it nakes me permanently nauseous and sleepy, much worse than the symptoms of anaemia. I had some iron infusions are brilliant, it is a shame DD won't have them.

If she has a genuine phobia of putting something in her veins I really wouldn’t speak to her about how similar blood tests are to that. My best guess based on everything that you have written is that she will then refuse blood tests which will make it almost impossible to get her well.

I think that your own instincts here are spot on, and that the answer is to find vegan tablets which supplement the things which she needs, and support her with checking ingredients.

I do agree that longer term she needs some ocd/eating disorder support, but I would wait until her levels are normal before you even begin the conversation.

I’m vegetarian. When I was anaemic, I got my medication OTC as it was cheaper than a prescription (obvs not the case for a child who doesn’t pay for prescriptions), and the pharmacist was happy to help. There is info about dietary suitability on the Patient Information Leaflet, and I’m sure there are pharmaceutical reference books/websites with this stuff. It wasn’t difficult - most “powdery” tablets are mineral based. They become non- veggie when things like gelatin or shellac coatings get involved.

i have bought veggie supplements OTC from Holland & Barrett too in the past.

Re strength: if she needs say 1000mg a day, but you can only get veggie supplements in lower strength, then surely she could take more lower strength tablets? It’s about the amount of Iron not the concentration.

Also, Floradix make a range of veggie iron supplements.

If you post what she has been prescribed ie the strength maybe someone can suggest an alternative for you. It’s very common for veggies to be deficient in these so she will not be the only veggie with this problem
my sister gets iron and vit b12 injections

have you looked at the Beat charity
it is an Eating Disorder charity

Haven’t read all comments but what about the B12 injection, the GP should be able to arrange this.

Floradix Liquid Iron and Feroglobin Liquid explicitly labeled as suitable for vegetarians

@Mummyoflittledragon that’s amazing info to share: thank you. I have 3 ASD DCs with ARFID / Autistic eating challenges and had been unable to find anyone to help us either with NHS or private (NHS dietician was supportive but didn’t know enough about ARFID and ASD to really help). Thank you.

My dd has anorexia and ARFID. Not diagnosed as she refused (was too anxious, possible undiagnosed ND) to deal with CAMHS and got herself signed off as soon as she reached 16. So I can well understand why you won’t go down that route.

You've had some brilliant advice about supplements from people, who really know their stuff. Once your dd’s levels are back to normal levels, I would think a decent multivitamin would be a good idea. I take Metagenetics, which is also a really decent brand and are labelled vegetarian. They sell on Amazon and do tablets for women and tablets for pregnancy. I think the main difference is the pregnancy have higher iron content and of course, folic acid. I have been giving these to my dd for a long time now.

if you have the funds to contact a dietician, I would go with someone specialised in eating disorders / disordered eating. This is a link to recommended dietitians. The list was collated by Jenny Langley, who has been working in ED for 20 plus years and co-wrote parental / carer workshops and books for loved ones with eating disorders. https://newmaudsleycarers-kent.co.uk/expert-eating-disorder-dietitians/ They should be well versed in dealing with parents and carers as it’s very common for people, who are ND not to be able to see there is an issue. As a result, their loved ones need to step in nudge them forward.

This brings me back to Jenny Langley, who has written a brilliant 5 part workshop for parents and carers on how to engage ED sufferers. She also does regular monthly carer groups. The workshops are run by various people at the Charlie Waller trust. https://charliewaller.org/mental-health-training-support/parents-and-carers/eating-disorder-workshops. I’ve attended two (the same thing), one run by Jenny and another by Catherine O’Dea Hughes. Both were excellent. These are currently funded by the charity and they ask for donations if you possibly can.

Jenny also runs a series of running individual workshops and recently wrote and delivered one on OCD. Jenny’s email address is on the new Maudsley website if you want to attend any workshops or the monthly carer’s meeting.

As for the OCD, someone from one of the workshops mentioned she did an excellent workshop with a company called OCD excellence.

As for our dd, we have been using and ED coach with dd for well over a year now. She isn’t local and was a recommendation on the long standing eating disorders thread. Dd has engaged minimally with her and I’m doing most of the work, acting both as her mum and performing a therapeutic role to guide dd to recovery. The coach worked for over 20 years as a mental health nurse in ED and therefore works with all elements of mental health, including OCD. She charges about the same amount as a dietician per hour. If you want her details, please let me know.

Where? When I've looked they are £500++++

Iron infusions are about £80 and vegetarian. Instant fix.

Would your DD take spirulina powder or tablets? It contains high amounts of iron and can be almost as effective as iron tablets in treating anaemia.

https://www.darwin-nutrition.fr/en/tips/spirulina-iron/

You might have to let her suffer until she’s prepared to change her tune. She sounds an absolute pain.

There will be a pharmacy team within the surgery not the pharmacy where you are collecting the medication. Their job is to process prescriptions and deal with queries. They will be able to find this out and liaise with the GP on your behalf. I would advise you to make an electronic request via patient access or the link on their website. These go directly onto the patient record and cannot be ignored as there is a paper trail. Although it feels better to speak to someone on the phone it’s much easier for them to kick the can down the road and continue to evade the query. I hope you can get this resolved 🙏

I appreciate you've moved on from the original request, but when you manage to get her iron stabilised, you could try Feroglobin liquid - 14mg per 10ml spoonful (plus other vits & minerals). I think it tastes delicious, and it says Vegetarian Society approved' on the carton. Or if you need to get something in her if your recently found solution doesn't work.

Does she eat okay generally? Is she restricting food in other ways?

This is how my DDs eating disorder started….

EDs and autism are very closely linked.

You can get high dose b12 1000 and 5000 mg

Our dds sound very similar! Mie is 14 and asd adhd had iron of 4 in october. Luckily mine isnt veggie but is the asd picky eater. Iron came up to over 20 by xmas.
Annoyingly mine was ok if picky but the weighing for adhd meds and shes restricting (not due to meds as not on them).
We even have the same re needles injections and giving the blood for the blood test she had to be held down.

Out of interest is yours sound sensitive or get hallucinations/daydreams??

Imo we shouldbe blood testing for at least iron for ND kids as so many are anaemoc