• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Tater Tot and LDN

Jmrogers4

Jmrogers4

Well it has been just a little over a month since we started on the LDN and I have a couple of questions I'm hoping someone can answer.
So far so good on the LDN, we did have about a week 2 weeks in where he was definitely not feeling well and didn't leave the bathroom for a few days and wouldn't eat. Rather than call the GI as he did not want to go the prednisone route again we thought we would try a variation/combo of the paleo/scd diet since he is such a picky eater. He loves veggies but only certain ones - brussel sprouts, broccoli, peas, asparagus, green beans, carrots, spinach and celery. Will not touch any other ones. Pretty much every meal consists of either a hamburger patty (made from grass fed beef we get from a local farmer - we like to call her Bessy) with a little cheddar cheese, ketchup, mustard and some pickle slices. In fact he can not stop eating pickles goes through a gigantic jar every couple of days. Funny cause that is the only thing that made me throw up when I was pregnant with him and I haven't been able to eat them since :)
My question is since he has been feeling so good. What do you do/take in addition to LDN. He takes LDN and Omeprozle, nothing else. Should he be taking a probiotic or something else. Can he start adding stuff back into his diet, he really misses dairy. Sugar hasn't been as hard for him as the dairy since he has never really liked too many sweets. Can't stand chocolate, cakes, pies and will only eat very few cookies (Snickerdoodles and white chocolate macadamia nut are about it). Just had his birthday and we let him cheat a little as he does like apple crisp so we made that for his birthday and he ate the apples and not the crisp.
Worried with school starting about what he will eat for lunch since he can't cook himself up a hamburger patty, or chicken breast on his George Forman grill he got for his birthday - I know crazy present for a 13 year old but it makes a lot less mess than him using a frying pan or the oven! So I'm hoping we can start adding some stuff back into his diet.
Wow just realized how long this is so I will stop for now.
Had to add the tater tot since y'all have such cute nick names for your kiddos and what else are you going to call a kid from Idaho. :lol:
 
kimmidwife

kimmidwife

Hi Jackie,
My daughter takes LDN and nexium, amytriptalline (which she may not really need anymore but I am kind of scared to have her stop it) a probiotic and a multivitamin. That is about it. She pretty much eats everything except nuts and popcorn that the doctor told us to avoid. I think I would try adding other foods in slowly and see if he tolerates them.
 
Tesscorm

Tesscorm

Moderator
Staff member
Jack sounds like Stephen - minus the veggies! :lol: I only wish Stephen would eat ANY veggie, his idea of a serving of veggie is 1/3 of a baby carrot! :ybatty: And totally 'get' the grill - Stephen's come home at 11pm and asked if he can make himself a steak (before he starts his EN feed)! :eek:

Anyway, not the same situation but when Stephen reintroduced foods, after his 6 weeks of formula only, his reintro schedule was:

1 - white foods - breads, pasta, plain cereal (no milk), plain muffins, plain crackers, etc.

2- proteins - any type but I stuck with chicken, fish, eggs

3 - fruits/veggies (we pretty much skipped this step :lol:) - soft fruits/veggies, no skins, no membranes (skin around orange segments), no seeds

4 - low fat dairy

5 - all else as tolerated.

Three to four days per step. We were told to always avoid seeds, nuts (peanut butter is okay, just not 'pieces' of nuts, popcorn and 'limit' veggies skins.)

Might be helpful as a 'guide' to try new foods... :)

His treatment is maintenance EN so his only med, right now, is Nexium. As for supplements, he takes liquid Vit. D, a Calcium + vit. D capsule and Krill Oil. As I've read in a number of places that coconut oil is anti-inflammatory, so I've made him some coconut oil chocolates that he has every day (1-2 max).

I would like to try probiotics but am afraid to change up the routine :eek:

Good luck!
 
Farmwife

Farmwife

Tater Tot.... I like it. Cute!


We use Garden of Life Probiotics here. They have one just for kids,
called Raw Probiotics Kids. Has 5 different strains.
We love it. We all use it.
 
Jmrogers4

Jmrogers4

Thanks farmwife. I'll look it up and see where I can get it. Maybe I'll start making the whole family take it as well. Can't hurt

Thanks Tess, I think we can skip to step 5 although we cut out step 1 and are currently doing steps 2 & 3. I think I will let him know we can try some dairy and see what happens.

Thank you everyone, it just feels like after so long of a time taking so many different medications it kinda feels like I should be doing more. Hopefully I'll get over that soon as long as he continues to feel well.:thumleft:
 
Mehita

Mehita

We use Culturelle for Kids for a probiotic, though I'm sure my son could probably do the adult version soon and then we amp up (daily vs 2-3x/wk) the probiotic in the fall when school starts and when there are nasty viruses going around school.

Tesscorm's list is pretty darn good. After a three week stint on a liquid diet, that's how we reintroduced solids as well.

It also might be worth a discussion with your school about lunch. My son in gluten free and as a result his school offers him a GF option every day to accommodate his diet, regardless of what the other kids are eating. We did have to get a 504 plan stating that he has a disability (digestive issues), but it at least allows him to have burgers and chicken breasts from the cafeteria. Just a thought.

Good luck!
 
K

Kev

Senior Member
Location
Halifax, NS, Canada
Really didn't take the time (I'm beat) to organize my thoughts before responding, but what I think is key is to remember a healthy, balanced diet shouldn't hurt anyone.. and if one has had significant damage done to their GI tract by disease, then it is better to err on the side of caution. Probiotics are a sound choice. Pre-biotics to feed the probiotics just makes good old fashioned common sense. LDN can keep the disease at bay, but if there is large sections of scarring from it, then avoiding/limiting things like nuts, seeds, pits, stones etc., is wise. Protein is a basic building block of the body, esp in children... so making sure a diet is hi in protein is a good choice. Since scar tissue is permanent, try to avoid/limit gassy foods... scar tissue just isn't pliant like healthy guts.
Watch for trigger foods... LDN does not make one superman. Thing of it is... LDN might make one feel like the disease is beaten... gone... that caution can be thrown to the wind. Personally, I wouldn't play fast and loose with Crohns. It's a tricky so and so. Like, even tho a diabetic takes insulin for their diabetes doesn't mean they don't have to watch their sugar intake. I think it might be a good idea to drill that analogy into the heads of any young folk who are taking LDN. Far better to be safe than sorry, right?
 
Jmrogers4

Jmrogers4

Thanks Kev, I think he has gotten it into his mind somehow that he will be able to eat sunflower seeds and popcorn again someday if he gets his CD under control. I keep telling him these are permanently off his diet just like a kid with peanut allergy would never eat a peanut and while he may not have an immediate reaction, the consequences could be horrendous and he already has enough stuff to deal with.
Oh well I'll keep plugging away just like an anti-drug commercial. "Don't try it, not even once!"
I'll look into the pre-biotic as well:thumleft:
 
DustyKat

DustyKat

Super Moderator
The probiotic we using here is Culturelle Lactobacillus GG. Don't know if you saw this recent thread on probiotics? kiny has some good info in there re probiotics and disease location.

Love the nick name! :)...

Okay, confession time...:blush:...When I saw Tater Tot I thought, what weird American thing is this! :lol: Like what you guys call a teeter totter we call a see saw! :yfaint:

Dusty. xxx
 
Jmrogers4

Jmrogers4

Dusty it is one of those weird american things (as well as a potato kid). How can you go wrong with chopped up potatoes and deep fried a golden brown Ohh I think I'm making myself hungry:ylol:

PS I've always called it a see-saw
 

Attachments

Clash

Clash

See-saw here too! Love the nickname tater tot, that was mt daughter's nickname when she was growing up!
 
DustyKat

DustyKat

Super Moderator
I think I first heard it called a teeter totter on the Brady Bunch! Spent days wandering around and wondering what the hell a teeter totter was! :rof:
 
Jmrogers4

Jmrogers4

Rather then starting a new thread figured I would add to this one. Just had a call from Jack's GI and he has the results from Jack's Prometheus Prognostic. He is sending me full results to look at but apparently Jack's chances of stricturing disease, developing abscesses is 65% so he wants to schedule MRE to look at thickening of the bowel walls and possibly switch to remicade even though blood work and scopes looked good. I'm really confused about what to do obviously we want to do anything we can to either delay or stop stricturing/abscesses but he has been doing really well on the supplemental EN. So do we have the MRE or do I wait and see and maybe it has just been a lack of calories and nutrition. I don't know what to think anymore.
 
Johnnysmom

Johnnysmom

If our GI wanted the MRE done, I would do it. No radiation and it is inconvenient but otherwise not a big deal. In my experience they do not order any testing unless they really feel there is a good reason.

It takes the body a while to heal and react to meds but if you are still needing to do supplemental EN and cannot get Jack to gain weight after several months of LDN a stronger med might be needed. Especially if Jack's BMI is still in the 15 range, that is very low. Johnny's BMI has gone up (now at 19.5) but at one time we were considering a switch because he wasn't gaining weight.

You can always go back to LDN or 6mp once he is done growing.

Never easy decisions. (((((Hugs)))))
 
my little penguin

my little penguin

Moderator
Staff member
Second the mre is painless and can give the Gi more info.
If his bmi is really low then its more than him not wanting to eat.
En can help but doesn't fix the problem.
Never easy
 
my little penguin

my little penguin

Moderator
Staff member
Just read that - 15% for bmi not actual bmi number of 15.
If its 15% - I am with the Gi - mre and move up until he is finished with growth.
Since starting remicade and en DS has a bmi of 17.4 or 70%.
He was in the low twenties .

So sorry
 
Clash

Clash

I would do the MRE too, just to check since the Prometheus Prognosis. It may just be getting his calories up but I would check all avenues. HUGS
 
Jmrogers4

Jmrogers4

Thanks, GI says he recommends but is basically leaving it up to me. Thank you for your support and advice I guess we will go ahead and do it. His BMI at last visit 2 weeks ago was 15.6 - 4.06% percentile according to chart they gave me. I told his GI I would do whatever we needed to as his growth and development right now were the most important thing. I think with recent 7 lb weight gain he should be above the 5th percentile now. I try not to compare but since they were so similar up until Crohn's I can't help but compare and his brother's BMI at 11yrs/10ms is 67th percentile.
 
upsetmom

upsetmom

Location
,
:ghug:... Us parents seem to have the added bonus of worrying not only about this disease but also our childs weight and development...:(
 
kimmidwife

kimmidwife

I have to agree with doing the MRE and seeing what is going on. If the disease does not appear active and worsening and he is gaining weight my personal opinion would be to continue with the current course of treatment. However that is my opinion not medical advice. Some kids gain slowly but as Long as there has been a continual gain and no weight loss and no new symptoms that is how I would proceed.
 
Jmrogers4

Jmrogers4

Yes Kim, that is my big issue we just started with the supplemental EN and we are seeing some weight gain. If the MRE shows stricturing/thickening do I switch or maybe we just haven't given the EN time although the appetite has again dropped off again the last few days but he is drinking his 8 drinks a day- My head is spinning. I was not expecting that call today. The mucosa from scopes looked fantastic, the other blood test looked great but this one is wacky I really think the LDN is working but I guess now we are looking at is it working enough...
 
Jmrogers4

Jmrogers4

I'm so furious! Had a 504 meeting this morning to make some minor adjustments to Jack's 504 and the nurse commented that she hoped Jack was feeling better since he had been absent so long. Apparently he hasn't been in to fill his thermos with his Peptide at all during the day! The fridge was full of them, he drops them off in the morning but never comes back. We called him down and he saw me standing there and said "Sorry". We now have the nurse and his teachers who will all be checking on him and now he has specific times he has to go fill up so the nurse can check it off. The counselor will be chatting with him as well about compliance and trying to figure out why he wasn't doing it. I asked him every day how many he drank at school so we could figure out what he had left to drink that day and get them spaced out. Every day the answer was 4 or 5. I will be bringing and stocking nurses fridge from now on as well so I can double check.
He has always been so honest, I don't even know what to think. He told his math teacher when she asked yesterday if he needed to leave class to go fill up that he didn't have to do that anymore. Sent in email to everyone of his teachers that he is doing it until they hear otherwise from me.
Sorry for the rant...
 
Mehita

Mehita

My Lukas did a similar thing! He was supposed to stop in the nurses office once a day to drink an Ensure for extra calories awhile back. I found out after the fact that he stopped going after the first day. He said he was tired of being different and always having to see the nurse. He said kids were asking him why he was always leaving. On the outside, he looks fine. It pretty much came down to wanting to not stand out with his peers - totally a middle school thing. Unfortunately, I think it's just another thing they have to come to on their own terms. Frustrating for us parents though!

The consequence of not taking care of themselves is extra attention from adults/teachers. I told Lukas he can slip in and out of class or we could have his English teacher set an alarm on her computer that goes off when he needs to leave and the whole class would know. Guess which he chose?
 
Clash

Clash

C is in highschool and he was taking his with his lunch and trading them for something else or just giving them away. I found out when his friend came home for the night and asked if we had any of those shake drinks that were so good. C turned so red, apparently his bestie likes the taste of Ensure. Boys!
 
Jmrogers4

Jmrogers4

I was so furious when I opened that fridge, good thing he was in class and I had to go to work gave me hours to calm down. Still not quite sure why he wasn't going down other than his excuse "I forgot" but hopefully we have gotten it worked out and he will leave a couple of his classes just a few minutes early go to the nurses office drink one and not miss out on any social time. I will be checking in with the nurse though. Just can't quite figure out what he was thinking, the nurse was bound to call sooner or later at least once her fridge was overflowing with them. There were 24 of them in there and he brought 6 more today. I guess at least he wasn't throwing them away but then again if he was who knows how long it would have been before being caught. Not very skilled at being sneaky, good thing for me.
 
Tesscorm

Tesscorm

Moderator
Staff member
O...M...G...!! I can imagine how mad you were! :ghug: You've got to feel for them, they're just kids and just don't want these responsibilities BUT so frustrating when you're just trying to get them well!!! :ybatty: I can't help but feel bad for him... :(

But, hopefully, he understands now... perhaps suggest the overnight NG tube option... it is truly what Stephen prefers! We've started discussing ending EN as he'll be starting remicade and he actually wants to keep it going as long as we can as he doesn't have me nagging him about eating more healthy foods and he actually sees how much his body has improved since he's been on EN (and I'm not talking crohns, I'm talking muscle, etc. - his friends are even jealous at how easy it is for him to build muscle when he works out! :ywow:). When I suggested he could now drink Boost instead of using the NG tube, he said it's no hassle with the tube, he'd rather do that. I'm sorry, I've forgotten if Jack ever had to insert a tube before and didn't like it??? But, maybe he'll be open to considering it now???

As for the MRE, I'd definitely go for it... I'm all for more and more tests! Especially the safer, less invasive ones! The more info you have... but, I can certainly understand your hesitation at adding meds... :ghug: :ghug:
 
my little penguin

my little penguin

Moderator
Staff member
Wow . I know DS doesn't like to go to the nurse either .
Can I suggest a different schedule ?
He needs how many a day 7-8 right ?
Why not two for breakfast after his cereal ? Two in a thermos for lunch time?
One on the bus ride home and then just two - three at dinner / bed

DS drinks 3-4 peptamen jr a day everyday . Two with breakfast
One after school and sometimes one at bed .

Drinking in class is hard - this way it's only lunch at school and one the bus or when he walks in the door .
 
Jmrogers4

Jmrogers4

I did ask him about NG tube at night if he would prefer that and then he wouldn't have to worry about it at all during the day. He said No. We have never tried and NG tube but if he is not going to be compliant we may have to try.
I was hoping once he gained some weight and grew he would see the benefits it would make it easier.
Yes the hours I had until I saw him after work helped me calm down and try and see it from his point of view, that and I'm lucky enough to have a great boss who has a doctorate in child psychology and she told me I needed to sit and listen to him and not go straight to punishment/consequences, no interrupting - just listening. Remember he is a teenager and his whole world is the here and now - not the big picture and most kids don't think about how things will effect them in the future. It helped.
 
my little penguin

my little penguin

Moderator
Staff member
Oh and DS agreed to get up earlier in order to be able to finish two shakes in the morning .

Good luck

Try to ask him if he can think up a better schedule
 
Jmrogers4

Jmrogers4

Thanks MLP I'll ask him if that would work, he walks/rides to from school but then we are only about 3-4 blocks away. What he has come up
Drink 1 at breakfast, leave 2nd period a few minutes early go to the nurses office and drink one - go to break. Leave 4th period a little early (with the math and science kids who go to special advanced classes) drink one in nurses office and go to lunch (with one in thermos) and then no more until he gets home unless he has rehersals or practice then drink one directly after school before heading to activity. He doesn't have to ask to leave class just go and nurse won't call unless he doesn't show up at all.
 
Farmwife

Farmwife

Jmrogers4 said:
I'm so furious! Had a 504 meeting this morning to make some minor adjustments to Jack's 504 and the nurse commented that she hoped Jack was feeling better since he had been absent so long. Apparently he hasn't been in to fill his thermos with his Peptide at all during the day! The fridge was full of them, he drops them off in the morning but never comes back. We called him down and he saw me standing there and said "Sorry". We now have the nurse and his teachers who will all be checking on him and now he has specific times he has to go fill up so the nurse can check it off. The counselor will be chatting with him as well about compliance and trying to figure out why he wasn't doing it. I asked him every day how many he drank at school so we could figure out what he had left to drink that day and get them spaced out. Every day the answer was 4 or 5. I will be bringing and stocking nurses fridge from now on as well so I can double check.
He has always been so honest, I don't even know what to think. He told his math teacher when she asked yesterday if he needed to leave class to go fill up that he didn't have to do that anymore. Sent in email to everyone of his teachers that he is doing it until they hear otherwise from me.
Sorry for the rant...
Click to expand...
:awe: Oh to have been a fly on that wall when he walked in and saw you!
 
Jmrogers4

Jmrogers4

Lesson to all teenage boys everywhere! You have teenage brain and don't have the brain function to out smart us BWAAA HAHA (evil laugh)
 
Jmrogers4

Jmrogers4

MRE is scheduled for March 4th!
Jack had the worst headache he says he has ever had. I'm wondering if it was a migraine. Said it started about 2 hours before school got out on the left side of his forehead and when he went to rehearsal for the school musical (which is this Friday) with all the lights and sounds it spread across his entire forehead. He had to call his dad to come pick him up and he was in tears in the 10 minutes it took for hubby to get there. He was sound asleep by the time I got home 1/2 hour later and slept till 9:00, got up to take his meds and went back to sleep. Does this sound like a migraine? I don't have any experience with them.
 
Tesscorm

Tesscorm

Moderator
Staff member
Not sure about migraines specifically but to have all the noise and lights on top of a headache would certainly worsen it!

I used to get really bad headaches (migraines??) as a teen and I remember they were painful enough for tears! And anything would set off 'waves' of pain - a noise, moving my head, etc. would set off a pain that seemed to 'bounce' around my head until it dissipated (until the next thing set it off). It may be long ago... :lol:, but I do remember just wanting to sleep it off.
 
EthanClark

EthanClark

My daughter is 12 1/2 and has started getting migraines every once in a while. This is exactly how she feels. The only that helps get rid of it is sleep. She doesn't have IBD or any other health issues. I have heard migraines are quite common in young teens. I haven't taken here to the Dr. for them as they haven't been frequent enough to cause worry but if they continue I will take her to get checked out. Sleep seems to always work.:ybiggrin:
 
Maree.

Maree.

I get migraines too, the part of this that sounds like a migraine to me was when you mentioned he was in tears of pain then fast asleep 1/2 an hour later.

The clearest sign of a migraine for me is the aura (visual disturbances at the start). But the other feature of migraines for me is that even when there quite severe, If I can lie perfectly still in a dark, quiet setting the pain fades out to numbness and I generally sleep, then 8 times out of 10 when I wake the migraine is gone. Often if I can find a quiet space to rest while the migraine is still at the aura stage I can cut it off before the pain becomes intense.
 
Jmrogers4

Jmrogers4

Thanks everyone for the input.
I think I'll have him track them if he gets anymore. From what everyone has said it sure does sound like a migraine. Hope it's a one off though.
 
Mehita

Mehita

I'm not sure if its related or not, but our gastro said that if L ever starts having headaches/migraines to get his eyes checked with an opthomolgist. Apparently, inflammation in the eyes can trigger the head pain and that L should be seen by an opthomolgist annually simply because of the Crohns. Just a thought... especially if Jack might be flaring right now.
 
Jmrogers4

Jmrogers4

Thanks Mehita. Bad mother that I am I don't think he has ever been to an opthomolgist. I have a great one too since I can't see worth snot! Maybe I will give her a call wouldn't hurt to have it checked out or even if we just get a base line established then if there are any changes we will know. Again thanks I didn't even think of that.
 
Mehita

Mehita

I just found out about the eye thing last month and L's had Crohns for four and a half years. Our two previous gastros never mentioned it. The new gastro was shocked that we didn't know. Go figure!
 
Jmrogers4

Jmrogers4

WooHooo! I'm so excited! Just spent a half hour on the phone with GI. No more Pentasa, 6 shakes a day for a week and see how weight gain happens or if he maintains current weight. If he continues to gain quickly drop to 4 after a week. If he maintains we can drop to 5 and see if he continues to maintain and grow until we see GI on 4/11 and then we can decide where to go with drinks.

No MRE for time being - says if Jack is gaining so quickly maybe there is not the inflammation he thought there was and since he is still fighting with my insurance to get them to pay for MRE, he thinks we can wait till when and if there are problems.

And Jack brought home an invitation to apply for Jr. Honor Society. So proud of him.
 
Clash

Clash

Wow!!! That is awesome news!!! I'm so excited for Jack, things are just moving right along!!! Woohoo...Go Jack!!
 
Tesscorm

Tesscorm

Moderator
Staff member
That's great news!!! :D And congrats on the Jr. Honour Society - hope it works out!! :thumright:
 
Jmrogers4

Jmrogers4

Update - GI appt today. Jack has gone for 1st percentile for BMI to 50th percentile! We are still 15th percentile for height but he has grown an inch in the last 2 months. His GI was shocked at how well Jack looks, no longer pale, joint pain gone, eczema (just a tiny patch on his skull). 2-3 BM's a day, no pain, no blood, small urgency (when it's time it's time), soft but no diarrhea (most likely from supplements). He just kept saying WOW! I can't believe how much a difference in 2 months.

Dropped to 4 drinks a day, halved the periactin only one dose a day for the next month and then quit and see if he maintains his appetite.

Back in 3 months to make sure we are still moving in right direction. Will do blood at that time and check vitamin D level (He apparently has been reading about how vitamin D can affect Crohn's. Told him I've read several studies about it (Thanks David) We were at 33 in February. (normal 30-100). Said he would like to see level higher. Fecal calprotectin planned in a year (unless there are issues)

We also talked about LDN and how Jack is his only patient on it who is doing really well. I asked him where they were having it compounded as how it is compounded can make a difference and what fillers are used and how quickly it is released (Thanks again crohnsforum) He is having me send him what I told compounding pharmacy so I'll have to find the thread on here but he is going to print it out so he can make sure he prescribes it correctly.

Also asked about the carrageenan in the peptide said I had read studies on it causing more inflammation in Crohn's patients (Thanks ben's rn) He had not heard of it but was going to do some research and told us we could use other formulas and could also try non elemental and see how he does. Watch for EIM's and if they start showing up switch back to the elemental formula.

He even joked about calling me when he has a tough case. I said it is not me it is just a lot of mom's and dad's knowledge around the world that have been there already so really he was working with GI's all around the world through me. Isn't he lucky!
 
Tesscorm

Tesscorm

Moderator
Staff member
Wow, that is GREAT news!!! I'm so glad that Jack's showing such great improvement! :medal1:

And too funny that you'll now be the GI's 'go to' person!! :rof: :thumleft:
 
Jmrogers4

Jmrogers4

Thanks MLP, it says right on the page "Kids love the taste" :lol2: We still have a few cases of Peptide so we will probably finish those off
 
Jmrogers4

Jmrogers4

Last fecal calprotectin was in June and was normal but scopes and blood were just done in February and all good (best labs ever).

He will test for magnesium when he tests for vitamin D first of July. I asked because all my lovely friends from here were like little voices in my head. Any other levels I should have tested besides magnesium and vitamin D?
 
David

David

Co-Founder
Location
Naples, Florida
Jmrogers4 said:
Last fecal calprotectin was in June and was normal but scopes and blood were just done in February and all good (best labs ever).

He will test for magnesium when he tests for vitamin D first of July. I asked because all my lovely friends from here were like little voices in my head. Any other levels I should have tested besides magnesium and vitamin D?
Click to expand...
So 18ish months between fecal calprotectin tests is planned? It's a CHEAP yet excellent test to check for inflammation. I wonder why the duration? Maybe because it was normal :banana: last time?

If possible, zinc and B12 would be very useful as well. As always, get the actual numbers and share them here. Especially for the magnesium and B12.
 
Jmrogers4

Jmrogers4

Yes because it was normal and scopes/blood were normal, biopsies from scopes showed no inflammation only reactive cells (whatever that means) he felt we didn't need it unless we started having problems. If Jack's eczema or joint pain show up he will run it earlier but didn't feel it was warranted at this point.
I will send him a message to add zinc and B12 to blood tests. We have an online chart that posts all the results from tests and I can hit a button and compare past tests (love it)
 
my little penguin

my little penguin

Moderator
Staff member
We were told no more than 6 months between fecal cal if we were not scoping - just to keep on top of things even if things were normal
 
Jmrogers4

Jmrogers4

So 6 mos from scope? That would be at next appt, he usually had us do labs week before so we can discuss results at appt so I can tell him I want it done then.
 
my little penguin

my little penguin

Moderator
Staff member
SO we don't have to scope DS every year - and because DS's blood work does not reflect his disease level. our gi and 2nd opinion go want him to go no more than 6 months between fecal cal. Less if things are not normal.
Not scope and fecal cal.
His last number was high but not too high so I am pushing for another one thre months from last one. ;)
 
C

crohnsinct

Well-known member
WOW! Just about all I can say is WOW! That made my day!

You are cracking me up with the GI using you on consult. It so wonderful that you have a great relationship with him and that he has such respect for you! But of course he does...look at how amazing you are! Keep up the good work!
 
CarolinAlaska

CarolinAlaska

Holding It Together
Jacqui, what an awesome update! I love that your GI was humble enough to ask and listen to what it was that was working so well for your son. Nothing like all those good results to get his attention! Your hard work and study may very well help him help many others (and already helped your own son!). I'm wondering if the periactin had side effects for your son. How did he take it and how much. I've had a couple patients on it and it made one of them very tired. It helped both with appetite. I think I may ask my GI whether we can try it for Jae. She talked about it early on, but we haven't gone that route yet. Jae still doesn't have much appetite.

David, I think the fecal calprotectin was like $729 for us. Are you sure it is a cheap test?! Jacqui, I would suggest a more frequent calprotectin test as well. It is the only test that showed Jae's inflammation when all her bloods were reading normal... It also gave us a good guide as to how the EEN did because it reduced her FC by about 600 to almost normal...
 
Jmrogers4

Jmrogers4

Carol I didn't notice any side effects with periactin however he did eat more. GI's opinion was he had gone so long eating such a small amount his body was in starvation mode and thought it only needed a small amount and we needed to "reset" it and convince it he was hungry. It worked but will loose it efficacy we have cut the over time so we have cut the dose to once a day and I'm to monitor his appetite and stop in a month if appetite remains so that we can use it again in the future if we need to.

I will ask about FC when we go in July I think his reasoning was since all tests showed normal including FC he thought we could wait unless we start to see those EIM's of Jack's that generally preclude a flare but I know he would be okay ordering one if I wanted it as he would say "can't hurt"

Maree - I will post in success, thanks for the suggestion
 
Farmwife

Farmwife

Jmrogers4 said:
We also talked about LDN and how Jack is his only patient on it who is doing really well. I asked him where they were having it compounded as how it is compounded can make a difference and what fillers are used and how quickly it is released (Thanks again crohnsforum) He is having me send him what I told compounding pharmacy so I'll have to find the thread on here but he is going to print it out so he can make sure he prescribes it correctly.
QUOTE]

Can I get a copy of that too?:ghug:

THANKS
Click to expand...
 
Jmrogers4

Jmrogers4

absolutely :)
From the Jill Smith study, I brought to the pharmacy

Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler WILL interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.
 
David

David

Co-Founder
Location
Naples, Florida
CarolinAlaska said:
David, I think the fecal calprotectin was like $729 for us. Are you sure it is a cheap test?! Jacqui, I would suggest a more frequent calprotectin test as well. It is the only test that showed Jae's inflammation when all her bloods were reading normal... It also gave us a good guide as to how the EEN did because it reduced her FC by about 600 to almost normal...
Click to expand...
In England, it's around 47 pounds. Of course, here in the USA we like to multiply healthcare costs by 10+ so my apologies if I am mistaken on that.
 
DustyKat

DustyKat

Super Moderator
What a FAB update Jm! :yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

:mademyday:

Onwards and Upwards!

Dusty. xxx
 
Jmrogers4

Jmrogers4

Sorry I've been away for a while busy with 2 sports and different school activities. Things are finally slowing down. My younger son's lacrosse season finished up over the weekend and Jack had his last regular season baseball game last night and playoffs don't start until next Tuesday. I've tried to peek in from time to time to see how everyone is doing but sadly have gotten far behind.
There are only 7 more days left of school this year! Jack is still feeling great if a little tired but it is do to all the activities he is doing then because of Crohn's. In addition to baseball nearly every night, he just got back from a weekend trip to Salt Lake City with his Choir where they toured a college campus and met with the musical director there and got some great feedback, followed by a trip to Lagoon Amusement Park. I actually chaperoned the trip and the kids were all really good but I'm still tired and needed a large glass of wine by the time we got home.
Weight is holding pretty steady varies between 98-102 and he is just shy of 5'2". Still drinking a few Peptide a day but no longer taking the appetite enhancer. He still doesn't eat a lot but it is definitely more than in the past.
He has applied to attend a local private school and was accepted now we are just waiting to see if we can get enough financial aid to make it feasible. He really wants to go. He would be in high school there instead of junior high (9th grade) and was really impressed by the small size. We have already talked about accommodations and they were really good and we have a plan in place if the financials all work out.
 
Last edited:
Tesscorm

Tesscorm

Moderator
Staff member
So glad to hear Jack is doing so well!!!! To the point of tiring YOU out!!! :D

Good luck with the school - I hope it all works out!!!! :thumright:
 
Sascot

Sascot

Great update! Good luck with the financial aid - hope he gets to go to the school. Makes such a difference when they want to go to school!
Well done for chaperoning that trip - I tend to avoid these things as much as possible - love my own kids but looking after lots of hyper, noisy kids is sooo not on my list of fun things to do :smile:.
 
Jmrogers4

Jmrogers4

Sascot said:
love my own kids but looking after lots of hyper, noisy kids is sooo not on my list of fun things to do :smile:.
Click to expand...
Especially when I'm put in charge of a group of 12 year old girls! :eek: Ummm I'm the mother of boys - the drama, the squeals, the giggling. I ended up sitting with the boys in the back of the bus on the way home only to realize they will pretty much do anything to get the attention of these same girls including letting them put full make-up on them :yrolleyes:
 
Jmrogers4

Jmrogers4

It has been over a year on LDN and Jack is doing really well (still waiting for a giant growth spurt but maybe he is supposed to be short). He has a ped appt. on Friday for weight/growth check - 9th grade physical. He got into private school we had applied for so he will be starting high school next month. Appears to be over the recent bout of C-Diff and he turns 14 tomorrow!
Happy Birthday Jack
:birthday2:
 
Farmwife

Farmwife

HAPPY BIRTHDAY JACK!

I'm so glad he got in to the school you wanted.
Does he want to go? Why is it a better school?
 
You must log in or register to reply here.
Top