Low Dose Naltrexone

[melanie]

Hi Nancy

 

what kind of dr prescribed this? Immunologist or psychiatrist?

 

Thanks

Melanie

[cory2605]

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!

 

 

Stephanie,

 

I read on the forum that you are a volunteer or facilitator for the Florida Pandas Network. I am in Merritt Island near Cocoa Beach. Do you know if there is a Support Group near me?

 

Thank you for sharing your story. It was very enlightening and gives me hope.

 

Trish

[lyme_mom]

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.

That's right. The drug was used in high doses to detox heroine addicts. These addicts would not take their full dose and many had HIV. They noticed that their infections were under control or they were less sick on their modified "low dose" naltrexone. It helped their immune system. So its an old drug that they discovered as a new use. My good friend went to the LDN conference in Bethesda and has done a lot of research on it as a treatment for MS, cancer and other illnesses. She says it is considered a miracle drug for treating these illnesses. I know my llmd really believes it works. It seemed to help me and my family although it so hard to know exactly what helps when you are doing multiple things. It is important to have the right dose according to my friend (and to have it compounded by a knowledgeable compounding pharmacy). It can give you vivid dreams. My son and I have been on it a year and have had no problems with it. I will keep taking it if it is that helpful for fighting those diseases and lyme and it is not very expensive, at least at my pharmacy.

[kj2001]

We have been using 4mg via a pill every night and he is doing great accidemically but is on a bit of a violent/impulsive streak where he is hitting kids out of the blue and very negative. I don't know if it is coming from the LDN