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Not sure if you all saw some of the information out on this...

 

Here is an article where PANDAS is mentioned in the list of conditions that it helps.

 

http://www.dustysplace.org/docs/nax.pdf

 

It is talked about in this blog for PANDAS:

 

http://drkurtwoeller.blogspot.com/2009/02/...be-related.html

 

Has anyone used this sucessfully?

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Not sure if you all saw some of the information out on this...

 

Here is an article where PANDAS is mentioned in the list of conditions that it helps.

 

http://www.dustysplace.org/docs/nax.pdf

 

It is talked about in this blog for PANDAS:

 

http://drkurtwoeller.blogspot.com/2009/02/...be-related.html

 

Has anyone used this sucessfully?

 

 

Funny that you should post on this now. I have just started Gaby on it last night (again). I had originally started her on it months ago for just a few days, but I had simultaneously started her on a couple of other supplements and I was having some issues at that time, so decided to back off on a few things and add in one new thing at a time. Now I am at the point where I feel I can start the LDN and be clear on whatever changes happen, I can attribute it to that.

 

In the meantime, while I was waiting to start her on this, I have continuied to check the LDN/autism group posts on yahoo groups because this site gives great information from many, many parents worldwide who have been or are just starting to use this - in most cases for immune regulation for their autistic children, but it has actually been proven to be effective for improving any immune dysregulation (including MS, PANDAS kids, people with chronic herpes simplex infections, etc). It is without side effects, and I have been checking now for many months to make sure that there isn't someone who reports something that can definitely be attributed to it negatively.

 

Some people have used it for several years and the immune system has repaired itself so that when they go off of it, everything still works fine. Some who have been on it for less time and go off, will see some immune issues creeping back in.

 

The way that it works is that in the low dose form of this drug it temporarily blocks the opiate receptor sites in the brain (so you apply it in cream form to the body after they fall asleep) then by 2AM when the body naturally starts producing beta-endorphins. That temporary blockage will trigger the body to produce more (maybe twice or three times as much as it would have because it has been tricked into thinking that there isn't enough). This increase in endorphins actually boosts the immune system and causes some immune modulation to take place.

 

The recommended dose is between 1 1/2 mg and 3mg. I am choosing to do the low end - 1 1/2 mg. As I said it does come in a cream - you can't refrigerate it because it will separate out. It is made by a compounding pharmacy (I use Coastal Compounding - they're fairly reliable with all their shipments - have used them for B12 injections, etc). It has to be ordered by a physician, of course. I use my DAN doc in Florida, but there are alternative MD's all over who would probably prescribe - you just have to look for them - in most cases they don't take traditional insurance and you end up having to pay. But you only pay a large amount for the doctors visit - the medication is relatively cheap - maybe $20 a month or so. Pat

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Not sure if you all saw some of the information out on this...

 

Here is an article where PANDAS is mentioned in the list of conditions that it helps.

 

http://www.dustysplace.org/docs/nax.pdf

 

It is talked about in this blog for PANDAS:

 

http://drkurtwoeller.blogspot.com/2009/02/...be-related.html

 

Has anyone used this sucessfully?

Our son has been on LDN (in a lotion form) for 2 years. When we first started it, we noticed an almost immediate improvement in his ability to interact with people. I remember him walking in on Easter and asking my sister-in-law how her concert had been. He had never before shown that kind of interest in someone's life. We were using it as a part of his DAN! biomedical autism treatment. It's still a part of his treatment today.

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Thank you pmoreno....do you have a link to that yahoo group?

 

I am starting dd on this tonight. We have the pill--made by a compounding pharmacy. The one thing I am worried about is it affecting her sleep negatively--have you heard of this happening? She already has a hard time sleeping, so that wouldn't be good!

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After reading this post, I did a little reading on some other sites. LDN does look promising, and I would definately be interested in trying it. Do I need a prescription for the creme? If so what type of doc might do this (my pediatrician is useless)? Do I need to see a DAN? I haven't done this yet.....

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Thank you pmoreno....do you have a link to that yahoo group?

 

I am starting dd on this tonight. We have the pill--made by a compounding pharmacy. The one thing I am worried about is it affecting her sleep negatively--have you heard of this happening? She already has a hard time sleeping, so that wouldn't be good!

 

 

 

You just go to Yahoo groups, then type in LDN autism and it will come up, but you have to join the group in order to post questions. As far as it affecting sleep. Well, sleep is already an issue for us too, so I figured it couldn't get much worse. Anyway, I have heard that it can be difficult with sleep for the first week, but usually never lasts beyond 10 days. So far the first night I applied 1 1/2 mg - didn't have any problems with sleep.The second night no problem sleeping, but last night (3rd night) she woke up around 3 AM and was crying that she couldn't sleep - lasted about an hour, then back to sleep. I did use a little more last night - probably 2 1/2 mg. As I had said the DAN wanted me to start right away with 3 mg. but maybe 2 1/2 was too much for her even - it seemed that the 1 1/2 didn't seem to bother her as much., but then again, you wonder if it wasn't working as well either. She was fairly irritable again today (just on and off and especially more in the evening when she got tired). Still not sure whether to attribute that to the start of LDN or not. Well, I'll continue on with this and see what happens - I will back off again to 1 1/2 mg. and if the irritability continues beyond a week, I may quit, wait a while and start again and see if the irritability returns. I have heard from other parents using this that they have seen some improvement in language and cognition within the first week, but that the actual immune improvements don't happen until they've been on it for about 3 or 4 months.

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Wow, I am shocked at how fast we are seeing improvement!

 

Day 1: Hyperactivity in the morning...by afternoon, dd took a nap, and woke up very calm. OT said her social skills were excellent that day and that she really did well in therapy. Afterwards, she managed to get through a trip to the grocery store with no behavior issues, it was wonderful!

 

Day 2: She is so happy!! She told me she feels so calm and happy today and she felt so angry before this medicine. This is just like she was on the steroid burst. I'm thrilled. Waiting for the other shoe to drop and for it to stop working, but I'm thrilled today!

 

Dd is on a pill form of it and she takes 3mg. I give it to her at 8pm and so far she has slept through the night on it.

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Indigo- I assume you need a prescription for the LDN? Can you tell me what type of doctor you went to for that? I definately want to try the creme, my daughter also has uncharacteristic anger since the pandas started, and it makes her feel so bad.

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Indigo- thank you. Do you love your DAN doctor? I assume he doesn't take insurance? Is he expensive?

 

Are you in Lancaster, PA? I drive through there monthly, on my way to visit family in Western NJ. If you think your doctor has been helpful, I would be interested in his/her info.

 

Right now I am filling out paperwork to see a DAN in NJ, that my sister -in-law recommended. I have no idea, however, how much he knows about pandas, and LDN. We have a pandas diagnosis from a psychiatrist, who we like. We have two neurologists that we like, and a psychologist. All of the pediatricians I have tried here, though, are worthless. I am happy to coordinate between these specialists, but I am not a doctor, nurse or scientist. I feel I need a concerned doctor to consult on all of pandas dd health issues, that will think out of the box. Like- vaccines, rashes, overall health, etc.

 

Please let me know if your doctor guides you through all of this stuff...

 

Thank you!

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Hello,

 

Yes, he is wonderful. There are several doctors at the practice and they all are familiar with PANDAS and the protocol. Here is their website:

 

http://www.woodmed.com

 

It's actually in Quakertown, PA, closer to NJ than Lancaster. They do take insurance. All of our appts., tests, and medicines have been covered.

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  • 1 month later...

Hi, I'm just wondering if I cold get an update from those people who have their children on naltrexone. I'm going to try to get my daughter's psychiatrist to prescribe it this week....I'm particularly interested in behavioral changes (rage extinction?), but would love to hear about any effects, good or bad, that you've seen. Thanks.

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After a couple of weeks, dd got really irritable on the naltrexone to the point where I had to stop it, unfortunately. I've had recurrent strep and things have gotten so bad here with raging that we have to go back to meds....we just started her on Geodon last night. Not sure if it will help or not, but the raging is just beyond my control because she is too big for me to handle anymore.

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