LDN Update

[Livilou]

Hello! I haven't posted in awhile, but I thought I would update everyone
on my daughter's progress with LDN. Olivia has been on LDN for approx. 7.5
weeks now and so far so good! I am still optimistically cautious at this
point, however labs drawn this week came back great!! Anemia is resolved
and CRP is 0.3, ESR is 6. We are waiting on FC results. Also, she has
gained 7 pounds since starting!! Initially, Liv was having headaches, so
we decreased the dose and than titrated up slowly to 4.5mg of transdermal
LDN. When she started the LDN, she was on 9mg of Entocort, and is
currently down to 3mg and will probably wean completely in the next 2
weeks. Liv is also taking supplements..Vit D, curcumin, boswellia, L-
glutamine, folic acid, probiotics and Vit B-12. She has modified her diet
somewhat...eliminating some dairy, sugar and gluten, although, she is not
100% compliant..we are still working on that! Also, Liv does drink 2 Boost/
Ensure shakes per day...her weight was down when we started LDN.
We have finally found a new pediatric GI who is sort of open to the LDN..
he seems curious about it and is willing to give it a chance, he is probably
going to perform a scope in the next 6 weeks. And, he is open to EN...our
former GI was not willing to implement EN therapy...just wanted to put Liv
back on Humira after completing radiation treatment for thyroid cancer.
So, I will continue to be hopeful..will let you know results of the scope!!
Take Care!! Kim

 

[dannysmom]

Great news! Thanks for sharing. Please keep us posted.

 

[kimmidwife]

Fantastic News! I hope it continues to go well. My daughter had some headaches at first but then they went away. She still gets the occasional headache but it is much less often.

 

[LittleChloe]

I'm so happy for you! LDN has helped Chloe so much and we are taking many of the same supplements you are. Keep up the good work!

 

[Tesscorm]

So glad to hear it's working! And thank you for keeping us updated!

 

[jmckinley]

Great news! So glad the LDN is working AND that you have a Dr willing to try it. Those are hard to come by! Hope the success continues.

 

[jmckinley]

Kimmidwife,
I am interested to know if your daughter built up an immunity to the Remicade fairly quickly?

 

[DustyKat]

Thanks so much for the fab update Livilou!

Good luck...may it keep on keeping on hun!

:mademyday:
Dusty. xxx

 

[Jmrogers4]

That Jack took his first dose last night. That is interesting about the headache as he was complaining of a pretty bad headache today.

 

[Livilou]

So I received the results of Liv's fecal calprotectin, it is 317. It was 428 on March 23rd; we started TD LDN on April 23rd. All her recent(June) labs were within normal limits. Her new GI doesn't think it is significant...he feels this test is too unpredictable and the fact that the CP is trending down does not mean she is getting better. He feels we won't get definitive answers until we scope her at the end of the summer. I'm trying to remain positive with the LDN...you all know, "that little happy place" and he just killed it for me!!!

Meanwhile, my daughter is asymptomatic and looks good and is feeling great. We will be discontinuing the Entocort on July 6th. So frustrating! I am very anxious about this upcoming scope..I just want the LDN to work. If it doesn't, we are not sure what is up next, possibly methotrexate, as this MD is not thrilled about restarting the biologics in light of her cancer diagnosis last fall.

I know others have discussed fecal calprotectin...just wondering what others think???
We are off to the beach for the next few days to celebrate Independence Day...I'm going to try not to obsess over this issue and have a wonderful week with my family!!!
Kim

 

[kimmidwife]

Kim,
My doctor does not believe in fecal calprotectin. He says we look at the child and the symptoms and that is what we go by.

 

[Livilou]

Hi! Yes, that is this new doc's approach too. I just wanted to hold onto the happy bliss that her lab results were heading in the right direction, and than MD seems less than enthusiastic...oh well, I just have to wait for the scope and keep fingers and toes crossed that we will get good news!! How is your daughter feeling these days?? Hope all is well. Kim

 

[kimmidwife]

She is doing well. She is away at camp for the summer.

 

[DustyKat]

I certainly believe to looking at what is in front of you but that is coming off the back of a child that had normal results when the war was raging within.

I personally don't see how a doctor can dismiss the results of a test that specifically measure inflammation within the bowel. Of course no test is foolproof but when the figures match what you are seeing then in my mind that provides more reason to believe that is in fact correct.

This is the most recent article I could fine regarding faecal calprotectin and it's relationship to disease activity...

Faecal calprotectin concentration correlates positively with the disease severity in CD and UC patients; thus, it may be useful when choosing or modifying the appropriate treatment regimen.

http://www.hindawi.com/journals/mi/2012/608249/

Dusty. xxx

 

[kimmidwife]

Dusty
You know I wondered about that as well but our doctor says he goes by how the patient is feeling and doing and er have seen such a drastic change in Caitlyn maybe that is why he feels we don't need other tests right now. I guess we will see what the new doctor will say.

 

[DustyKat]

Yeah, it is hard to judge. I am a firm believer in marrying both up...what is in front you coupled with the tests but that is only my experience. My two are so very different, Sarah always had normal results but looked and felt awful. Matt on the other hand would feel good and yet his tests reflected everything little thing even before he felt it. Is it any wonder we feel like we don't know if we are Arthur or Martha half the time! :lol:

Dusty. xxx