Is LDN working as well as I hope

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Jmrogers4

Jmrogers4

Joined
Jun 5, 2012
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Well I don't know if my bubble has popped or my heading is coming out of the sand. The last couple of days Jack has had an urgent need for a BM while we have been out running errands. He says he has no pain and the BM where mostly solid but I'm worried we are heading for a flare.
I've been beyond thrilled the last month as he has grown an inch and a half and had gained 6 lbs, but he has lost 2 in the last couple of days and while for most of us you wouldn't even notice 2 lbs, when you only weighed 82 lbs at 5'.
Have anybody experienced a flare while on LDN, it seems to be pretty mild and he says he feels great but there was definitely a I have to go immediately or else kind of urgency.
 
Sorry, no advice. Has he recently had any type of imaging or scope, or lab work if his inflammation shows up there? Doesn't LDN take quite awhile to do it's thing? I hope he isn't starting a flare, sending support and hugs!
 
Clash,
He is not scheduled for a scope until June/July. His last blood work, fecal calprotectin showed no signs of inflammation. He has been on LDN since July 1 and we were finally seeing some growth and weight gain in the last month.
 
Well the FC showing no signs of inflammation is definitely a good sign! Not sure about the symptoms now though, could it be just all the holiday festivities? Was urgency a symptom pre-LDN?
 
Yes, urgency was always a big symptom for him. I'm hoping it is just holiday festivities. I made him go to bed at 10 last night, he of course was not too happy. He wanted to stay up playing his new xbox games, instead he was up early unfortunately none of his friends where up to play with.
Crazy how they don't even have to leave the house to play with their friend anymore...
 
Hmmm.... no pain and solid bm's sound great to me... maybe he just really had to go? Sometimes when you gotta go you gotta go! :biggrin:

I hope all is well!
 
ctrl z said:
Hmmm.... no pain and solid bm's sound great to me... maybe he just really had to go? Sometimes when you gotta go you gotta go! :biggrin:

I hope all is well!
Click to expand...

:ylol::ylol::ylol: True, I guess it just the couple days in a row that has me going hmmmm... and maybe it's because he has been feeling so well lately that I'm waiting for the proverbial shoe to drop.
 
Isn't it crazy...access to friends 24/7 but tonight C has four boys coming over all with their flatscreens and xbox, so we expect a whole night of "Sniper sniper, sniper..watch out to the right...back up, back up...left, left!!!
 
Just picked up Jack's friend they are currently deciding which game to play first so I'm sure I'll be hearing the same thing. We have a choice of Black Ops 3, Assasins Creed 3, Halo 4 (All thanks to their Uncle)
 
Urgency has lessened still having more BM's per day then he had lately. Down another pound. Got a little lax with diet the last couple of months (most likely because he has felt so great) so we are back on little to no gluten, no processed foods, minimal sugar and no soda. Hopefully this will be the little extra kick he needs.
 
Thought I would update everyone, we are just finishing up the 6th month and Jack says he feels great, blood work has been great, no pain, no symptoms except lack of growth/weight gain. He is holding steady at 5'0 and has dropped to 77lbs per pediatric visit last week which puts him in the 1st percentile for BMI. Pediatrician was concerned enough to message his GI and he is really concerned as well so we have an office visit Wednesday morning to schedule scopes.
What's the next step? I guess it depends on scopes. If no inflammation I'm all for keeping him on LDN and maybe figure out some kind of supplemental nutrition via NG tube if necessary.
If there is inflammation I guess we will have to discuss the next medication
Not sure what I'm hoping for at this point, just want him healthy and growing
 
Posted in the parent sections as well but thought I would post here as well. Jack had scopes this morning, doctors are concerned because he has not been gaining weight and he was convinced that we were going to see massive inflammation this morning but scopes looked fabulous, healthy tissue through colon, large intestine, TI and even into the small intestine that he could see, esophagus, and stomach. GI even commented that if these were the first scopes he would have never even thought of Crohns as they looked like completely normal tissue. He did however take biopsies to check for underlying inflammation as we are not seeing weight gain and weight is dangerously low. Blood was also drawn today so we are waiting on results from that as well.
If all that comes back normal GI would like to do a pillcam to see small intestine that was not visible through scopes
 
Jacqui, one thing to also look at would be magnesium. People with Crohn's are commonly deficient and deficiency can cause lack of appetite in some people and failure to thrive in children. That your son was also on Omeprezole until recently which can ALSO cause magnesium deficiency makes me wonder doubly. Note that the serum magnesium test isn't very good because serum levels can be fine but body stores can be negative. One thing to look at is the dietary sources of magnesium located here. Total up what your son eats per day and the corresponding magnesium levels. I'm betting it's well below the RDA (found lower on that page). That, in conjunction with the Crohn's and past PPI use would potentially be a good enough argument for supplementation (anything but magnesium oxide as it isn't well absorbed) when presented to your doctor.
 
Thanks, David. He loves cashews and spinach which are both pretty high on the list. I'll pick up some spinach on my way home and some seeds so I can start spinach plants along with my other seeds.
Any recommendations on supplements? He takes a multi-vitamin and D3 right now and he just started but will be drinking 6-8 Peptide a day (at least for the next 2 months)
 
Jacqui, Leah has flared on LDN but nothing compared to the flares without it. When we start to see signs i have her rest alot more and watch the diet which seems to help.
I have read on the LDN support site that a few people have lost weight when they took LDN so maybe thats the case for Jack. I hope Jack continues to do well on LDN.
 
Thanks leahsmom, I had not heard of the weight loss issue. I'll look and see if I can find it and read up on it. Hopefully the supplemental nutrition will help.
 
No, but that was the only way we could get insurance to cover the cost. You can order directly from Abbott here http://www.abbottstore.com/shop/sports-nutrition/icat/pediasure&source=anu
or I found them through Amazon until all the insurance issues got worked out.
Another one some of the kids use is Peptamen Jr.
There is also Boost kid essential which is probably the least expensive of the bunch and if there is not an absorption problem (doesn't need the protein broken down further) it is a good choice as well and probably in Jack's opinion the best tasting of the bunch.
 
Oh Victor,
Meant to add we got samples of all these to try from the GI as well as Breeze Resource which is more like juice.
 
Jmrogers4,
Did Jack stop taking the LDN before the colonoscopy?
We saw Victor's GI today. He wasn't impressed with Victor's blood work. The SedRate is still 19 and the CRP is 4,7. But he has no other symptoms and the GI wants to move to him to the next level which means giving Victor a 6MP but he agreed to do colonoscopy on march 28. We will see whats the result is going to be. Hoping for the best!
 
I can't remember but how long has Victor been on LDN?
It took us a while to get everything under control. He was symptom fee by about 4 months but I would say it takes a while to really heal the intestines.
Jack was in a pretty good spot when he started and was probably at 95% just couldn't seem to get all the way there.
Hope scopes goes well and you see healing there. You can do both 6MP and LDN. Jack's doctor was going to have us do the first 3 months on LDN along with Imuran but do to a miss-communication we stopped the Imuran with the first dose of LDN.
 
He is on LDN 18 weeks now, since Nov.01.2012,
do you think we should stop LDN for like 3 days before colonoscopy,
His doctor doesn't know that his is on LDN , no approval !
Thank you so much for your repaly :)
 
Well it's up to you but I don't think it would matter one way or the other. Are you worried it will effect the scopes? or worried the doctor will find out you are giving it to him without his approval?
Does he take it at night? From the way I understand it works it is processed by your body within about 4 hours and doesn't build up in your body.
 
He takes it at night. I was worried that it may affect the sleep medicine he will receive before colonoscopy, I think will just stop LDN for 1 day, just to be on the safe side.
Thank you so much,
 
Jack had lidocaine along with propofol with no issues but Jack has missed dosages of LDN with no problems so missing one night is not going to make a difference and will give you peace of mind. I say skip the dose the night before.
Will be waiting to hear results from scope.
 

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