Let's give it a go!

[Farmwife]

Given Grace's dx's and her young age we're debating/decided:wink: to have Grace try LDN.
I believe it might to be a good drug for both her diseases.
I will be talking to her GP first and get her input on this.

What are some good points to make with the GP about LDN?
I know it's low in side effects.

Are there warnings about toddlers using this drug?
I've search but have found none.

Can LDN be combined with other drugs?
Will it work if she's on pred?

Thank you so much.

 

[ctrl z]

The minimal side effects is the best point I can think of about LDN.

I think the lowest dose of pred you can be on for LDN to still be affective is 10mg.

I don't know of any warnings for toddlers taking LDN.

HERE is the most recent (full) study paper for LDN in children. The youngest in that study was 8.

You could also print out the most recent adult study for LDN. Those are all in the LDN sticky.

I think LDN can be combined with other drugs. I know that there were people using Humira and LDN but I don't have any sources to back that up.

 

[Jmrogers4]

Hi FW,
Yes she can take Pred with it, recommended 10mg and under.
Yes she can take with other meds the ones I know of are azathioprine (imuran), Jack will be starting Pentasa with it and Periactin. He also took omeprozole with it.
I don't believe there have been any studies done for toddlers, youngest in Dr. Smiths Pediatric trials was 8 but she did give a recommended dose of 0.1 mg/kg so it would depend on Grace's weight but would most likely be no where near the 4.5mg adult dose.
Look at my thread on blood tests the top post shows Jack's blood prior to starting LDN and the one from yesterday - you can see the significant improvement.

 

[Farmwife]

Thank you. Does LDN work as well in UC?

 

[Jmrogers4]

I know of one personally that takes it for UC and she seems to be doing great.

 

[leahsmom]

Farmwife good luck with LDN I hope it works well for Grace. my daughter is 15 and is on LDN with Apriso and many supplements it has been great for her. The only thing Leah noticed was vivid dreams for about a week maybe less, but they were good dreams so she didnt mind. There's a wonderful ldn support group you can join to get lots of information. Keep us posted.

 

[Kev]

I took 4G of 5-ASA with my LDN up until recently, with no issues. However, as to whether 5-ASA is of any benefit, I can't comment. It did absolutely nothing for me before I started LDN, and my condition has remained unchanged since I stopped taking it.

I 'believe' in the 1st clinical trial, there were both CD and UC patients, but don't hold me to it. However, my 'case' is pretty bizarre. It offered the worst characteristics of both UC and CD, making it difficult for doctors to diagnose. The good news is that LDN made it all go away. So, from that, it appears that LDN definitely will work both on CD and UC.

There are pros and cons to combining LDN with other drugs. Making recovery easier or faster is an obvious pro. Not knowing which drug caused the recovery is a known con. But there is another... what if there are issues? Which drug do you discontinue?

 

[Farmwife]

Does anyone now how long does LDN take to be therapeutic?

 

[Jmrogers4]

We noticed a major difference at about 8 weeks. Felt really good first 1-2 weeks then we had 2 weeks of awful symptoms then he seemed to improve from there. Biggest thing we noticed as diarrhea was never a problem was we had less constipation and no more joint pains. He had been complaining about ankles and wrists hurting for the a few months and then nothing. In fact it was probably a week or more before that lightbulb hit me that he hadn't said anything about his ankles and wrists hurting. I hadn't had to wrap them before school.

 

[leahsmom]

Leah had the same experience, the first week she saw a difference in cramps, energy and joint pain was better and that was on 1.5mg When she went to 4.5 mg things just got better and better, she did have a flare but that was due to a life changing event in her life. She has been on 4.5 since July 2012.

 

[Farmwife]

Thanks, Grace's GP said she would do LDN for her. It's still on hold until we meet with the GI.

 

[leahsmom]

I'm really happy that Grace's GP is willing to prescribe it. Most GIs dont approve LDN for treatment of anyone. Leah's GP gave her the script for LDN although her GI is not happy about it. Good luck and keep us updated.

 

[Farmwife]

So tomorrow is the day. I've printed up the study for LDN and children.
I've educated myself as much as I could on the subject.
I'm just hoping her answer will be yes for sure.
She sounded like she was open to it but until the prescription is written, I'll be nervous.
BTW, I'm still going to talk the the GI about doing this. Of course I want him on board but if not I know the GP will be helpful.

 

[Jmrogers4]

Good luck! Hope it all goes well and you leave with prescription in hand. Let us know how it goes.

 

[Farmwife]

The GP said yes to LDN!

 

[Jmrogers4]

Yay!!!
When does she start? After you hear about possibly more pred? Recommended dosage of pred with LDN is 10mg.