Low Dose Naltrexone

[melanie]

Im interested ? anyone use this successfully??Were a ASD and Pandas family,Danny gets IVIG every 21 days

 

Melanie

[pathfinder]

tried for 2months but stopped as my ds (16 then)17 kept having vivid violent dreams.

I wished I had my ds stayed on it a little longer to be sure that it did not work for my son but did not have courage to go on. ANYONE ELSE?

Edited September 19, 2010 by pathfinder

[Chemar]

my son was given naltrexone in low dose tablet in 2001 and did not have a good reaction. it was supposed to help the tourettic OCD

 

he stopped it immediately

 

I do know of some people with other autoimmune disorders tho who have had great benefit from it

[Stephanie2]

For those of you who responded that your children did not respond well to it, did you play around with the dose? I have heard that if you do not get the dose exactly right for your child then they will respond adversely (for example, a too high dose it not good, sometimes the lower the better - some docs don't know how to dose properly). I don't know the specifics about that b/c both of my boys were put on LDN 3mg per night, administered via transdermal cream between 9 and 11 pm and they have responded wonderfully! I have not had to change the dose. I honestly feel like this stuff is IVIG in a bottle (which ds5 has had done before). We have it compounded and then seek reimbursement from insurance so the cost is minimal. My boys are/were close to the spectrum (if not on) as well, but we added it to their protocol for pandas.

 

I will say that maybe it will not pull a child out of an acute exacerbation, but it will help maintain the gains from a steroid taper or IVIG. I added it for my son after low dose IVIG, and I added it for my other son after a 20 day steroid taper. It held them steady and even added to the improvements immediately.

 

I have also heard that it works best if the child is strictly gluten and casein free (as these act like opiates in the brain for some kids, and LDN is an opiate antagonist). My boys are gfcf, maybe that's why they responded so well...??? We do cheat on the diet occassionally, though. There are many who get success without the diet.

 

DS2 is having surgery tomorrow am and I was told to stop LDN 2 nights before (blocks the effect of RX pain meds) and sure enough the kid was afraid of his own shadow tonight at bedtime and was kind of fussy all day... We have to go another few days without...ugh!

[peglem]

We used it for about 2.5 months. I can't really say for sure if it helped or not. I thought it seemed to, then we had a PANDAS exacerbation, Cunningham results came back and we started all kinds of new treatments. It just seemed like a wild card at that time. Allie's docs couldn't really give me advice on it. The doc who heads up the yahoo group would only answer questions about her protocol. So, we dropped it. I would not mind trying again, but I can't seem to find out (from anybody) how it would work w/ monthly IVIG. Both are immune modulating...so I'm not sure what to do.

[melanie]

Im thinking the same thing Peg,

I cant imagine Dr J would not have suggested it.Danny is taking celebrex,an antinflamatory .Does LDN work for specific asd symptoms .Chemar used it for OCD what about anxiety??

 

Melanie

[peglem]

Im thinking the same thing Peg,

I cant imagine Dr J would not have suggested it.Danny is taking celebrex,an antinflamatory .Does LDN work for specific asd symptoms .Chemar used it for OCD what about anxiety??

 

Melanie

Nobody seems to really know- info is all anecdotal and observational. I understand the premise behind it- the low dose blocks endorphins for a few hours and tricks the body into thinking it needs to step up production. Endorphins are involved in immune regulation. And that makes sense to me...BUT (and I can't seem to find anybody with reliable info), if my child alresdy doesn't have enough endorphins, why isn't her body already stepping up productions?

 

I'm just a little skeptical of these things- I've seen a lot of autism treatment fads come and go over the years. There was awhile there where we saw a DAN doctor a few times- he wanted to try naltrexone. At that time, all the info on naltrexone and autism was high dose- blocking endorphins 24/7, on the premise that my daughter's SIBs were an attempt to get an endophin high (I thought that was a stupid theory and it did not appear to me to be what was going on at all). So, abolishing endophins was supposed to remove the "reward" she got for SIBs. I felt that my child had almost no pleasure in life at all, and I couldn't imagine blocking endorphins helping, so I said, "uh,uh, no way."

[Chemar]

For those of you who responded that your children did not respond well to it, did you play around with the dose?

 

They (Shands/Dr Murphy) had my son start at the lowest dose 1 mg per night as he was known to hyper-react to meds. Even that low dose had a big effect on him and he hated it. Stopped immediately as we have learned by bitter experience how the cumulative effect of any drug that he reacts negatively to can seriously mess with him

 

we were using it for the endorphins to try to stop some serious injurious tourettic OCD stuff.

 

eventually we tried D-phenylalanine SHORT TERM and had an excellent result. I stressed short term as my son has Tourette Syndrome and phenylalanine is dopaminergic (like steroids also are) and people with TS need to try to avoid things that increase dopamine

 

I wanted my son to try the transdermal when first dx with Crohn's but he refused as the very name reminded him of the oral reaction he had had 5 years prior.

 

do remember tho that my son does react negatively to many meds , likely due to chemical sensitivity/intolerance

[lyme_mom]

Our holistic llmd uses it when treating for Lyme/ dr j does not use it. I think the integrative doctors are the ones who like it. I believe it helped us.

[Johnsmom]

We tried it for our then 7 yr old ds. It made him irritable so I stopped.

[melanie]

so nobody is really using it on our PANDAS site..

Ill speakto his drs and see what they say

 

But what im getting is that it takes away somepleasure .I was reading alot with Addicts using it for addiction.

 

Still need help with the OCD and Anxiety .Not sure where to go with that part.IVs have helped a bit but not enough.

 

Thanks everyone,have a great day

 

Melanie

[Fixit]

so nobody is really using it on our PANDAS site..

Ill speakto his drs and see what they say

 

But what im getting is that it takes away somepleasure .I was reading alot with Addicts using it for addiction.

 

Still need help with the OCD and Anxiety .Not sure where to go with that part.IVs have helped a bit but not enough.

 

Thanks everyone,have a great day

 

Melanie

 

 

when ds started it , it was like we were in a leave it to beaver episode...good moring mother...well hello son,..today is a nice day,don't you think,....well i couldn't agree more.....

i can't say it helped his immune system..idk

i re-added it a couple weeks after the taper and it may have to gotten us to anohter notch...

but i don't know it holds..if he just starts failing or is his system gets used to it...

what i'm saying is that at this point my sons system can't seem to hold gains...i can't blame it on anything in particular

[peglem]

so nobody is really using it on our PANDAS site..

Ill speakto his drs and see what they say

 

But what im getting is that it takes away somepleasure .I was reading alot with Addicts using it for addiction.

 

Still need help with the OCD and Anxiety .Not sure where to go with that part.IVs have helped a bit but not enough.

 

Thanks everyone,have a great day

 

Melanie

With addiction (my understanding) is that they use high dose, so the opioid receptors are blocked continually- that's how they block the "high". But, low dose is supposed to only do a temporary block (while patient is asleep), causing the body to increase endorphin production. So with low dose, there should be an increase, not a decrease in pleasure feelings. It may be something you do want to try- its low risk and you can always stop it if it doesn't help. It has no permanent effects.

Edited September 21, 2010 by peglem

[melanie]

so does antone think this is worth trying??I guess Ill ask his psych.

 

Melanie

[Stephanie2]

Not sure if you read my post above, but like I said it was one of the final puzzle pieces to get control of my boys' pandas. I definitely recommend trying it. DS5 and DS2 are on 3mg transdermal at night.

 

Just like with IVIG though, the acute bacterial infections have to be controlled.