low dose naltrexone (x-posted in allergies)

[ellasmama2007]

has anyone tried this for their dc? my ped suggested it for immune support for our 16 month old dd. she is still mostly bf with food intolerances to everything new we try to feed her or me. she eats 3 foods apart from breast milk and i eat only a few more than that. we keep losing foods and are desperate. she went 6 months with no weight gain and recently gained a little. we were really happy about that, but she has started losing what she gained. we need a miracle.

[preemiemamarach]

Originally Posted by ellasmama2007

has anyone tried this for their dc? my ped suggested it for immune support for our 16 month old dd. she is still mostly bf with food intolerances to everything new we try to feed her or me. she eats 3 foods apart from breast milk and i eat only a few more than that. we keep losing foods and are desperate. she went 6 months with no weight gain and recently gained a little. we were really happy about that, but she has started losing what she gained. we need a miracle.

Haven't heard of it used for that, but it's an interesting thought. We have 3 substances (rice milk, amino acid powder, MCT oil) as well as peaches, so I will be very interested in hearing what others have to say about this.

Have you had her immunoglobulins checked? DS had high IgE, indicating an active allergic process, but only had a positive RAST to eggs, and he hasn't eaten them in well over a year (nor has he had EBM in 10 months).

[2mama]

I have never heard of it being used for that, I only knew if it being used for alcohol cravings, but medications are mysterious in the ways they work.

Have you tried any homeopathic remidies... I've heard that there are lots of options.. Try posting under health and healing..

Good luck..

[FuzzyOne]

yes - we use it for immune support for our 3.5 year old. he would get sick very frequently - every week to every other week. we started LDN and now he gets sick every other month (we also have some nutritional supplements in place to aid the immune system as well). he is in a classroom setting, so i do expect him to get sick sometimes. LDN is cheap, you can get it in a transdermal cream form if you like (from a compounding pharmacy) or a capsule form and it seems to work.

the total recommended dosage for immune support is 3 mg/day. it is important to work with a compounding pharmacy who has the proper recipe. the timing of the treatment is also important, with the ideal dosage time being between 10-11 PM. this is a treatment that is often used for ASD kids, with good results. i would recommend joining the yahoo group for it - you'll see a lot of autism conversation, but you will still get the pertinent info. the group is owned by one of the people who did a lot of research for the use of LDN and immunomodulation (dr. jaquelyn mccandless)

please feel free to PM me - i can direct you to a good pharmacy or give you additional information.

[BookGoddess]

We use the cream version of LDN. Our doctor prescribed it after some strange findings on an immune panel. DD's body was attacking itself (long story). I have to say LDN has been one of the best things I've tried. This past December is the first December since she was born where she didn't get sick. She hasn't had a single cold/flu since we started LDN and she gets colds all the time from her preschool friends.

[preemiemamarach]

Originally Posted by BookGoddess

We use the cream version of LDN. Our doctor prescribed it after some strange findings on an immune panel. DD's body was attacking itself (long story). I have to say LDN has been one of the best things I've tried. This past December is the first December since she was born where she didn't get sick. She hasn't had a single cold/flu since we started LDN and she gets colds all the time from her preschool friends.

Do you mind sharing what the weird results were on her panel? DS has an immune deficiency, but his total IgG isn't low enough that his current immunologist will do IVIG for it. I have been looking for clinically proven alternatives. Transdermal would rock for us because of his extensive food allergies.

[BookGoddess]

Rachel - When I go home I'll try to find the immune panel results and I'll send you a PM.

[ellasmama2007]

Originally Posted by preemiemamarach

Have you had her immunoglobulins checked? DS had high IgE, indicating an active allergic process, but only had a positive RAST to eggs, and he hasn't eaten them in well over a year (nor has he had EBM in 10 months).

no, we havent yet. i asked my ped, but he is really conservative with procedures and said something about not being that accurate in young children and waiting until she is at least 3. he also said we need to knock out the cause of her allergies rather than testing for each one.

Originally Posted by 2mama

I have never heard of it being used for that, I only knew if it being used for alcohol cravings, but medications are mysterious in the ways they work.

Have you tried any homeopathic remidies... I've heard that there are lots of options.. Try posting under health and healing..

Good luck..

didnt i mention dd is a lush?
we have tried homeopathic remedies and she reacts to them all! its so frustrating. i keep trying them again hoping shell be ok and she isnt.

Originally Posted by FuzzyOne

yes - we use it for immune support for our 3.5 year old. he would get sick very frequently - every week to every other week. we started LDN and now he gets sick every other month (we also have some nutritional supplements in place to aid the immune system as well). he is in a classroom setting, so i do expect him to get sick sometimes. LDN is cheap, you can get it in a transdermal cream form if you like (from a compounding pharmacy) or a capsule form and it seems to work.

the total recommended dosage for immune support is 3 mg/day. it is important to work with a compounding pharmacy who has the proper recipe. the timing of the treatment is also important, with the ideal dosage time being between 10-11 PM. this is a treatment that is often used for ASD kids, with good results. i would recommend joining the yahoo group for it - you'll see a lot of autism conversation, but you will still get the pertinent info. the group is owned by one of the people who did a lot of research for the use of LDN and immunomodulation (dr. jaquelyn mccandless)

please feel free to PM me - i can direct you to a good pharmacy or give you additional information.

oh thank you for this info. i found that yahoo group and will def check it out. im really excited - this sounds so interesting. im so happy for you that you seem to be finding some wellness from this med! i can only imagine the journey you've already taken.
im going to talk with my ped hopefully tomorrow or fri if he can fit me in. he has a compounding pharmacy that he usually uses, but ill tell him what you recommended and see what he thinks. he's really humble and not at all closed to the things i tell him i've learned here.

Originally Posted by BookGoddess

We use the cream version of LDN. Our doctor prescribed it after some strange findings on an immune panel. DD's body was attacking itself (long story). I have to say LDN has been one of the best things I've tried. This past December is the first December since she was born where she didn't get sick. She hasn't had a single cold/flu since we started LDN and she gets colds all the time from her preschool friends.

wow, this is something. i normally hate the idea of giving dd meds, but seriously we are so desperate. i havent read anything in the way of side effects and the fact that you can get a cream is even better!!
may i ask how long dd has been on the cream now. im really so happy for you that your dd seems to be healing, mama .

[BookGoddess]

We've been doing it for over 2 months. TD (transdermal) LDN is good in small amounts. Just because a little is good doesn't mean a lot is better. Sometimes kids do best on just one line of the cream. The cream doesn't have any strange smell and it's now part of our bedtime routine after her bath, story.

[ellasmama2007]

have you noticed any difficulty sleeping for your dd?

[FuzzyOne]

my son had some difficulty with sleep for the first few nights of taking LDN (he would wake up after an hour or two sleeping and have difficulty going back to sleep). it faded after that.

[ellasmama2007]

good to know, thank you

[~Shanna~]

We're looking into this as well. My son is currently on the GAPS diet for symptons of eczema, diarrhea, sleep disturbances and autistic behavior - if a food disagreed with him, the symptoms start with eczema and proceed through the behavior issues until we remove the food. When we first started the diet, I thought it was going to be huge overkill because he really only seemed to react to dairy, gluten, soy and eggs - we went on GAPs because it started to migrated to something that was in the gluten-free bread I was making, and I thought I'd like to nip this in the bud. I was on SCD for 18 months with my own digestion problems. I can't stress how conservative I thought we were being.

Since starting GAPS a month - 1 1/2 ago, he's gotten so much more sensitive. I slowly introduced the foods that were legal (from my own experience on SCD), to find that the only thing he could tolerate was beef, chicken, fish, bananas, apples (peeled), garlic, onion, olive oil, lard, grapes, carrots and peas - no probiotics, no supplements except CLO. I was shocked each time to see him react - it was like the more we pulled out foods, the more his body was just searching for something to react to.

I'm interested to hear about the cream, since I haven't found a supplement yet (except CLO) that DS doesnt react to. Ellasmama, I ran across your story and felt such a connection with you - I have never heard IRL of anyone going through what we're going through, and it helped to see someone else dealing with a growing mystery as we are.

[ellasmama2007]

im sorry for not answering you sooner, i subbed to this thread but didnt get notified.
i decided to start us both on the low dose naltrexone. we are in the same boat with supps and the cream does make it more enticing. i asked around at a low dose naltrexone forum and was directed to a lovely doctor who runs a yahoo group for ldn and autism, dr. mccandless. ill pm you her email tomorrow (my email is being totally obnoxious tonight). she was wonderful and very reassuring. i decided that this was the least invasive best possible next step for us.
i totally feel your pain wit the increasing reactions. we are still losing foods too. ive looked into eosinophilic gastrointestinal disorders but feel like i need to try this first before we go there.

[WuWei]

Margo, I just wanted to send love. I believe you are doing everything you can to help your daughter and yourself.


Pat

[ellasmama2007]

thank you, pat. your thoughts on everything mean so much to me!

[Windingdown]

Hi, So sorry to hear about your child getting sick a lot. Have your researched and tried probiotics? It couldnt hurt, make sure they are the ones that are kept cold in the icebox, I think it can only help! GOD BLESS