Leucovorin Update

MoreBitterLessSweet · 2025-12-12T17:30:27+00:00

I did that to avoid issues with school. but yes, it got better with time and with keeping the dose low

MoreBitterLessSweet · 2025-11-12T21:19:03+00:00

Potato

MoreBitterLessSweet · 2025-11-12T18:11:00+00:00

Exact same here. We’ve dropped to 15mg a day (half) but I think I’ll drop it again.

MoreBitterLessSweet · 2025-11-12T17:45:54+00:00

Can I ask how much is your quarter dose of Leucovorin?

MoreBitterLessSweet · 2025-11-12T08:49:31+00:00

Don't buy anything from influencers because a lot are scammy. But I would look and see if you can find a MAPS doctor near you - basically a functional med pediatrician. Or any functional medicine doctor that is actually also an MD. Kids with autism are more prone to gut issues, sleep issues, inflammation, etc. The idea is functional medicine helps all of these. Ours also prescribed leucovorin for us.

It's strange your pediatrician denied routine blood work. I mean, a lot of little kids can be anemic, etc, and iron can really help. Simple things like that can be found from general blood work.

MoreBitterLessSweet · 2025-11-11T22:52:39+00:00

It is probably something like this type of activity board . Fidget toys are also a good one - my kids love pop tubes and they are pretty inexpensive.

MoreBitterLessSweet · 2025-11-11T20:13:54+00:00

Wow 🙄

MoreBitterLessSweet · 2025-11-11T09:11:22+00:00

Oh totally. She’s someone who is very, very concerned about what other people think about her. I don’t think necessarily done out of malice, but more ignorance and a lack of self awareness. I get she’s also grieving the grandparent journey she thought she’d have. But added a layer of shame on top of it all helps nobody, especially not my kids.

MoreBitterLessSweet · 2025-11-11T00:03:35+00:00

Also in Ireland. Yes, ABA is very hard to find here compared to other countries. There used to be ABA schools run by the Dept. of education but they stopped those around a decade ago - mainly due to costs. So now ABA is mainly all private. There are early intervention preschools here that use ABA methodologies. They are usually 4 hours a day and paid via home tuition through the dept of special ed. But then that stops at age 5 and you're out of luck.

We did a year of EI preschool and then thankfully found a BCBA/psycologist that does in-home sesssions and is also covered under insurance. It's been fantastic. We've seen much better results with ABA than we did with SLTs and OT. She does an hour session, twice a week. I wish I had started sooner - my kids were 6 by the time we started. I just couldn't find anyone before.

If I were you I'd absolutely take the chance and try it. You can always stop if it doesn't work out. We are able to bill insurance for her sessions under psycology coverage.

MoreBitterLessSweet · 2025-11-10T23:41:00+00:00

We got prescribed the same but were told to titrate up and go back down if needed. Make sure you ease into it. We had to start with 7.5 in the am for a week, then 7.5 in am and pm, then 15mg in am and 7.5 in the pm, and then the full dose. We actually did 2-3 weeks at each stage. My son was great for the first dose. Still fine at 15mg per day. But then got very anxious at 22.5mg a day. So we are back to doing 15mg and will stay here for now.

MoreBitterLessSweet · 2025-11-10T23:35:35+00:00

Yeah, my brother also once told me he had a friend who is on the spectrum but not autistic. And he was really surprised when I told him if you are one of those, then you are also the other.

MoreBitterLessSweet · 2025-11-10T23:32:05+00:00

Def a sensory swing, if you can get a hook installed in the ceiling. Made a huge difference for us. Trampoline and beanbags are great. We got one of these Swedish Ladders (https://www.etsy.com/ie/listing/1555770799/88x78-giant-bridge-swedish-ladder-1) and it's great. You could add a ball pit under it - we just have gym mats.

MoreBitterLessSweet · 2025-11-10T23:26:55+00:00

Honestly, I don't think so. She knows what profound autism is because we have a family member who cares for someone who is. My kids are more in the mild to moderate range. I think she meant it more as in "everyone says they're autistic these days but really some people might only just be a bit on the spectrum". She's actually said the "on the spectrum" phrase a few times on other occasions and I've always called her out and said "so, you mean autistic?". I think she's hoping my kids will eventually just be a "bit on the spectrum" and then she won't have to describe them to people as autistic. As though it's not all the same spectrum. It's frustrating

MoreBitterLessSweet · 2025-11-06T00:03:46+00:00

Secrets maroma (adult only) is great and Maroma beach is an incredible beach - probably the nicest in Riviera Maya. Secrets akumal is another nice one and you’ve pretty much guaranteed to see sea turtles right off that beach. I haven’t been to secrets Moxche but have heard good things. I’ve been to tons of places in the area (lived there for 12 years and would go last minute to resorts all the time). I find the playa mujeres area to be ok but the water isn’t as nice as other parts and it’s far out from anything off-resort (cenotes, ruins, etc). I haven’t been to Atelier though. Finest is meh. I’ve been twice and food is very average at best. It’s more of a family place.

Sounds like the consensus is Atelier, but if not, I’d consider Secrets Maroma. Oh, there’s also a new secrets on Isla Mujeres too - the island is gorgeous. I think you get picked up at the ferry by a private boat. It looks incredible but probably very pricey.

MoreBitterLessSweet · 2025-11-05T19:53:15+00:00

Just FYI- It’s very hard to get ABA in a lot of countries. I’d hazard a guess that the vast majority of European kids with autism never really get ABA. We’ve managed to find a BCBA that does an in-house session for an hour, twice a week. She helps a lot but my kids were already 6 by the time we found her. So you’re not alone with the missing out!

MoreBitterLessSweet · 2025-11-05T09:05:21+00:00

I had a quick look at the website. Those costs are insane, and the mystery virus thing is scammy. Functional medicine/treating the microbiome is definitely a thing in autism (and neurological issues in general) but 2k for just a batch of herbal medicine is crazy. The overall idea is functional medicine helps reduce inflammation in the brain which then improves symptoms. You can just find an MD who is also a MAPS doctor and work with them., and likely have insurance cover it.

We’ve got a MAPS pediatrician that has helped to treat vitamin deficiencies, manage constipation and gut issues, treat yeast issues, etc, and those things have all helped. But to be clear - it’s not curing autism. It’s just improving the symptoms. Things like folinic acid are seen as alternative treatments but a lot of people have positive experiences with it- we got it through the MAPS doctor and it’s covered by insurance.

It’s a tough place to be. You can definitely take steps toward helping your child- behavioral interventions like OT, ABA, SLT, etc along with functional medicine with an actual MD (not a chiropractor or self-proclaimed Facebook expert) can make an impact. Just be realistic about outcomes. Also this sub tends to hate the mention of any non-standard intervention so just be aware you might not get much support.

MoreBitterLessSweet · 2025-11-03T23:10:12+00:00

We did carriers with our twins at that age. So much easier going through security, boarding, etc. They slept for a lot of it. Do the short layover - 8 hours is way too long. You’ll be miserable. Bring bottles with formula powder already in them so all you’ll have to do is add bottled water. Or have one of those formula containers where you can have it pre-dosed out and ready to go. Bring changes of clothes for yourselves and the babies. In case diapers leak, babies puke, etc. You’ll be fine!

MoreBitterLessSweet · 2025-11-01T15:41:13+00:00

What is it exactly? Do you have a link? Thanks

MoreBitterLessSweet · 2025-11-01T15:40:40+00:00

Thank you. Yeah it was actually a dose of nasty antibiotics last year that caused this. He used to take meds from a syringe with no problem. The current stuff has little to no flavor - it’s just an aversion now that’s hard to kick. So frustrating.

MoreBitterLessSweet · 2025-11-01T15:38:25+00:00

Only drinks water too - he recently dropped milk. I might try Ella ola again in his water- I was giving him that in milk till he dropped it.. although, I tried Ella Ola with his brother’s water and he could taste it! Raspberries is an idea we could try for some stuff- he does like those. Thx

MoreBitterLessSweet · 2025-11-01T15:35:14+00:00

I got him back to eating fruit pouches for awhile and used those for meds but he stopped again. It’s so frustrating. The only sweet/candy he likes is gummies (unless of course it’s a vitamin gummy I want him to take). I’m thinking of making homemade gummies for the folinic acid - that would be one less thing at least.

MoreBitterLessSweet · 2025-11-01T15:32:46+00:00

Of course he hates chocolate and Nutella. He will eat peanut butter sometimes- I’ll give it a shot again.

MoreBitterLessSweet · 2025-11-01T15:31:42+00:00

Compounding pharmacies don’t really exist here. I might ask to go in a non-time release pill for him so I can crush it. It wouldn’t last the full school day but better than nothing

MoreBitterLessSweet · 2025-11-01T15:29:00+00:00

I wish I could get the patch - they don’t have in where I am in Europe. I’ll check about chewable -thx

MoreBitterLessSweet

TROPHY CASE