AutismWeb Forum

starting it tonight any side effects that anyone has noticed.. any tips?

TIA,
Stacy

We saw an increase in yeast.

Also, if I gave it later in the night (during the window timeframe) he wouldn't wake up during the night.

we noticed sleep disturbances in the beginning - lasted about 10 days before it balanced out.

We are starting it in about 3 weeks. Just bumping this up beause I have the same questions!
Goodluck! Hope it is a big wow for you!

Stacy,
What dose are you going to start at? and what is the body weight?
Thank you for sharing.

Thanks All,

Monica,
We have 3mg syringes and we are 44lbs. Tonight I will start with 1.5mg and bump it up tomorrow..

Cinma,
Did you do the transdermal cream or the pills? I hope we don't see yeast

Thanks,
Stacy

Thanks so much, Stacy!
Wish you best of luck!

Is it O.K. to chelate while on LDN? Is anyone doing this? any side effects?

Thank you

With my son, nothing but good side effects--better mood, better communication...but after maybe 3 weeks he started getting sick back to back and I am sure he was attacking some embedded infections. A pain, though.

With my ADHD dd, we are seeing absolutely nothing after about 3 weeks on this. So not sure what to think. Amazing how different the kids all are.

It was all up side for us too.

We didn't see any negative side effects with LDN transdermal cream.
Some kids have oxalate dumps while on LDN if oxalates are an issue for you.

we have oxalate issues & are going to start ldn. could you please let me know ,what an oxalate dump looks like.so i can be prepared,also how long.

This should be a non-issue. We had no problems.

aisha - Oxalates haven't been an issue for us so I haven't researched oxalate dumps that much, but from what I've read on other autism boards, it seems kids who go through oxalate dumps look like it hurts them to urinate. They might grab at their private parts and cry because calcium oxalate crystals could be come out and irritating the genital area. Some kids have lots of eye blinking, pushing the eyes and squinting.
You should join the Low Oxalate Yahoo Group if you're not already there. They should be able to give you more information.

How's it going with the LDN, Stacy?

Just wanted to add that it's been a few weeks since we added in TD LDN. Had some sleep problems in the beginning, since resolved. Have seen better conginiton and receptive language.

We tried LDN several mths back and my son, who was a very good sleeper till then, started waking up very early like 4 AM or so. After a week, it got slightly better and he was sleeping till 5:30 or so. But it has been more than a mth since we stopped using LDN and his sleep is still messed up. He now has trouble even going to sleep and wakes up before 6 daily.
Wonder if anyone saw these sleep issues that persisted even after stopping LDN.

We saw positives in the the first week (very happy and social), but they did not last.
There was no change in his CD4/CD8 ratio with use of LDN (we used for almost 3 mo).

I just wanted to update our experience with LDN. It's been a few months now since we started and I have only been using 1.5mg per night, transdermally. The syringes come in a concentration of 3mg per 0.5ml, so I am giving half of this. I think I remember reading in Dr McCandless's book that children sometimes do better on between 1mg to 1.5mg and I found this to be the case with us. On the lower dosage my daughter has had less irritation and anxiety. Sleep was affected the first few weeks but is better now and most nights she does not wake up.

I did not realise that LDN is being used as a treatment for Crohn's Disease amongst other things and if you go on the Crohn's/Ulcerative Colitis/Inflammatory Bowel Disease adult forums, LDN is helping some sufferers of these diseases go into remission without any other medication, which is impressive.

What we have seen since starting is that my daughter has made gains in receptive language, sociability, cognition and above all, the ability to sit still and wait for something. She can sit at a table for almost an hour and not get up - this is from a child who would get up every three minutes before. This is definitely an effect of the LDN, and has made a huge difference, she has just become calmer. Last night, after playing for about an hour in an outdoor playground, she led me to a little restaurant we sometimes go to, sat at a table, told me "I want meat" and then sat at the table for 52 minutes (I timed her) without getting up.

This is happening consistently now and is an effect of the LDN.

great news !!