Low Dose Naltrexone

Discuss autism diets and biomedical treatments of autism.

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Elaine
Posts: 216
Joined: Mon Jun 27, 2005 6:00 pm

Low Dose Naltrexone

Postby Elaine » Wed Dec 21, 2005 9:33 pm

Hi guys,

I am telling my hubby right now that I CAN't get off of the computer because I have got to post what has been going on with my son Stevie since starting LDN. The quick and short; he started LDN 2.5 weeks ago. His poops have become NORMAL - I mean well digested, less bad smelling, not with tons of food pieces in them. His mood has improved tremendously. He is more social. His LANGUAGE has improved spectacular in just 2.5 weeks. I know we are chelating too which has something to do with it too, for sure. But I KNOW a lot of this is the LDN. I think his gut was so inflamed, with constant yeast problems, he just wasn't healthy.

If any of you out there are having gut problems with your kids, or viral problems too, please try LDN. I absolutely cannot believe the difference in my son. It is cheap ($54 for a 2-month supply), it is non-toxic, it modulates the body's own immune system to be in balance to get rid of all of that inflammation. There is an initial adjustment period where the viruses get brought to the surface - like a cold, a cold sore, sometimes a rash. My son got a cold and cough for a week. But it is going away, so ok.

All I can say is give LDN a try if you have'nt done it already! There is a yahoo group started from McCandless, just yahoo search it (Yahoo/LDN), I think it will come up that way.

Hey - maybe this will get rid of those constant yeast battles for my son - it looks that way! I just want to let you guys know, or encourage some of you who are thinking about it, it is worth a shot!

Elaine
Elaine - Stevie's Mom

livsparents
Posts: 1629
Joined: Thu Jun 23, 2005 10:29 pm

Postby livsparents » Wed Dec 21, 2005 10:04 pm

What dose is he on? How old is he? Been thinking of starting it, any side effects? Sleep/anything? Any other advise from others?
Thanks, Bill

Maryanne W
Posts: 60
Joined: Sun Sep 18, 2005 8:57 pm

Postby Maryanne W » Wed Dec 21, 2005 10:53 pm

I have seen nothing but good results in my daughter from LDN - and she has been full dose almost from day one (better sleep patterns, more cooperative and focused) - but keep in mind that most need to start small and be brought up gradually - Maryanne
Maryanne W

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Thu Dec 22, 2005 12:43 am

We've been on LDN for several months now. The original prescription that our DAN! gave us was to start at 1/4ML (3 lines) and after 7 days increase to 1/2ML (5 lines). When we went to 5 lines my son turned into a complete monster and he started drinking about 2 gallons of water a day. Wellness Pharmacy who compounds all of our med's said that increased thirst can be a side effect but a rare one.

I went to Dr. McCandless's message board Autism_LDN on yahoo and everyone on there suggested lowering the dose. We tried one, two and three lines and three lines works best for my son (1/4ML) however most parents use only 1 or 2 lines.

He started sleeping about 11 hours a night and wakes up happy. It hasn't had an effect on his gut b/c it's still in terrible shape after 3 rounds of Flagal, Diflucan and Amphoteracin B but its certainly done great things with him.

-Crystal

natasa778
Posts: 155
Joined: Mon Dec 12, 2005 1:42 pm

Postby natasa778 » Thu Dec 22, 2005 7:32 am

I have been reading about LDN for a while and definitely want to try it with my son. We have a DAN appointment in few weeks and I am going to ask for it.

Did you have to have blood tests done before starting it? Dr McCandless does not think they are necessary but I wonder whether DAN doctors would prescribe it without testing. In which case I would need to change my phone consult to in-person...

Thanks,
Natasa

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Thu Dec 22, 2005 8:35 am

No blood test were necessary for our DAN! to prescribe it. However we had had IgG subclass test done over the past 2 1/2 years but he did not mention taking them into consideration when prescribing it.

-Crystal

Elaine
Posts: 216
Joined: Mon Jun 27, 2005 6:00 pm

Postby Elaine » Thu Dec 22, 2005 10:43 am

Bill,

He is 3.6 years old, weighs about 43 lbs. We started him at 1/4 dose (1/4 of 3 mg, so 3/4 mg). We saw good things, no bad, and bumped up to half-dose (1.5 mg for a few days), and then 1 night I accidently gave him full dose - the next day he was fine, so we are sticking with full dose (3 mg).

Honestly, the only negative, if it is one, is that he got a cold, which might have happened anyway. He is literally a different person - he is suddenly interested in potty training, and cognitive gains.

On the yahoo LDN site, a bunch of people are stating that their child is getting a cold or a rash, etc. Sometimes the effect is so bad, they take them off of it for a while. Others will just simply lower the dose. Honestly, it is one of the best and fastest interventions we have ever given our son. It tells me just how inflamed his whole body was, very, very disturbing to know your child is in that much pain. I do think it is worth a shot.

Good Luck -

Elaine
Elaine - Stevie's Mom

Elaine
Posts: 216
Joined: Mon Jun 27, 2005 6:00 pm

Postby Elaine » Thu Dec 22, 2005 10:45 am

Natasa -

No blood test is required. You simply try it and vary the dose as you see best (usually start at 1/4 dose, or 3/4 mg). For ACTOS, a blood test is required, not required for LDN.

Good Luck -

Elaine
Elaine - Stevie's Mom

natasa778
Posts: 155
Joined: Mon Dec 12, 2005 1:42 pm

Postby natasa778 » Thu Dec 22, 2005 11:22 am

Thanks Elaine, I can't wait as I think he is the right candidate for it - hyperimmune, all sorts of bowel dysbiosis etc (although trying not to keep my hopes up too high, as you can imagine).

I am also taking part in the LDN adult study bt January-April, so will be interesting to see the reactions and how it compares within a family.

Natasa

livsparents
Posts: 1629
Joined: Thu Jun 23, 2005 10:29 pm

Postby livsparents » Thu Dec 22, 2005 3:03 pm

We've been putting off staarting it until we had a block of time that she did not have school. I think we will try this weekend. Hoping for a little holiday magic! Merry Christmas

Elaine
Posts: 216
Joined: Mon Jun 27, 2005 6:00 pm

Postby Elaine » Thu Dec 22, 2005 4:18 pm

Here is a link that desribes what LDN does for common autoimmune disorders like MS, Crohns. Wonderful!

http://www.lowdosenaltrexone.org/
Elaine - Stevie's Mom

amymc
Posts: 111
Joined: Wed Sep 21, 2005 12:33 pm

Postby amymc » Tue Dec 27, 2005 4:01 pm

We are starting LDN tonight - yeah! I am just wondering, after reading this thread, that if a kid, like mine who only has had some gut bacteria and never any yeast, will this still help him. He has had stomach problems in the way distant past, but would not call him a "gut kid". Can we still hope for improvements?
Thanks,
Amy

dawnrinchicago

Postby dawnrinchicago » Tue Dec 27, 2005 4:15 pm

Regarding the cold/rash comments, according to the mb12 Valtrex yahoogroup, that is pretty common for ASD kids who take Valtrex. They call it a "healing regression" and theorize that the body is finally processing viruses. They consider the rash and cold symptoms to be a good thing that means Valtrex is working.

Perhaps a cold and/or a rash while taking LDN is something similar.

Dawn

martha werling

Low Dose Naltrexone

Postby martha werling » Tue Dec 27, 2005 5:09 pm

Dawn - Just curious, have you tried Valtrex? If so, what type of results did/are you seeing? I also joined the MB12valtrex yahoo group.

Thanks,
Martha

dawnrinchicago

Postby dawnrinchicago » Tue Dec 27, 2005 6:51 pm

No Valtrex yet. We've got the prescription but are adding a few supplements first.


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