My first ever live on this group about the latest recommendations from the States about autism and about my experience trying to get Leucovorin for our William.

The latest advice that I'm currently listening to are no Tylenol or Paracetamol during pregnancy, or as little as humanly possible. Another amazing thing is States-wide recommendation to supply autistic children with Leucovorin which is now recognised to help with the symptoms. This is exactly the off-label drug I've asked for last Friday and was told NO, so I ordered this medication online - waiting for it to be delivered. They also have stipulated to avoid giving children Tylenol or Paracetamol as much as possible. I'll be giving you a full update tomorrow, but this is very exiting for our kids - also if you have a pregnant friend - pass them the message.

After a lot of research on the subject I've decided to ask my GP to prescribe Leucovorin for William. Not holding my breath as in the UK it would be an off-label prescription. Normally this is used for cancer patients to help them deal with the side effects, but it's also been used in autistic kids who have abnormal folate metabolism - the DNA methylation test proves William has just that. I sent him all the lab tests we have had done up to this point as well as some research papers to support my hypothesis on why I think it will help our boy. I've also just started using a vagus nerve stimulation therapy and just about to buy red light therapy machine so keep your eye out on the updates on how these are going! https://nypost.com/2025/03/19/health/kids-with-autism-show-dramatic-improvement-with-cheap-drug/

If you’ve just joined the community, welcome! As one our our founding members (Yes YOU 👊) create your first welcome post saying who you are, where you're from, how old are your kids, what you admire most about them, what's the biggest challenge you find in parenting autistic kids and what YOU hope to get out of this group. This can feel cringy and all that, but the more we know about you, the more we can help each other out. I'll go first: My name is Kat, I'm originally from Poland but I've been living in the UK longer than I ever did in Poland. I have two kids - William 4 years old and Willow 10 months old. William has recently been diagnosed as autistic, but we have ton of health issues that are affecting his brain. We have spent thousands of pounds on private doctors and health testing to get to the bottom of how we can support him from the biological point of view (which is why I'm here!) and now we're moving into spending even more of the money we currently don't have to give him the best chance he has to thrive and not have to battle the downsides of autism. I admire William's determination and resourcefulness most. With Willow it must be her ever-positive character. The biggest challenge for me is dealing with discipline and not feel like I'm failing William. I genuinely don't know sometimes when he's being a toddler and I should demand from him certain level of cooperation and when his lack of cooperation is down to him not being ABLE to cooperate. I hope this group will become a space where other delusional/determined parents find out about and share the treatments, therapies or supplements that improved the lives of their kids so we can help all of our kids have the best and healthiest lives. I'm honoured you're here when we're just starting out and looking forward to seeing your post!