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Jenn

Jenn

Joined
Jul 28, 2011
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578
Hi,

Alex did bloodwork yesterday so my heart skipped a beat when I picked up the phone to hear his GI already looking at the results this morning, it can't be good for a personal call and so fast?!? Well, SED is lowest ever, at 2, vs. 30 last Jan before starting so Humira, so yay!

But, his protein dropped lower, and calcium which is related, apparently, and zinc a bit. She said low protein shows sign of active disease, but that inflammation isn't present, asked about any diet changes (none). He is always low on protein and we've been boosting as best we can with a picky eater. We burned him out on ensure while he was on 6MP, not worth it when he's crying/vomiting, but he eats a protein bar every day. So, that's discouraging.

I can't help head-spinning that it never seems to help by putting more in, his gut absorbs only a max amount, right? Does that mean maybe he has scarring since inflammation is low? So confusing. I can't get out of my head the flouroscopy image of his one section of strangled small intestine. I thought maybe we'd do a resection then, but no. And not sure it would be a road we'd take now.

So, now what? Well, the GI was willing to believe it's a low-point on the average and wait and see next month's blood labs. Meantime, I get to freak out all month about trying to increase his protein intake. argh. :) where's that stabby.... :voodoo:
that feels better!
 
Hi Jenn,

I'm not sure about your question re the ability to absorb more than a 'maximum' amount regardless of how much you give him... I'll be curious to know that too! But, your comment about scarring vs. inflammation makes sense to me. :(

I've actually just started to look into this because Stephen wants to add more protein to his diet... I'm sure you're already doing everything you can in his diet but can you 'hide' protein in normal foods? I'm going to try to find a sandwich spread which contains protein (something like a soybean spread instead of mayo or butter)?? and I found a Greek yogurt that has more three times the protein of our regular yogurt - 14 mg (is mg the measurement??) vs. 4 mg (but didn't have the probiotics). I also recently found that Nesquik chocolate syrup now has a new version with vitamins added (B12, etc. but, offhand, not sure if protein is included). But, if he can't absorb more, this may not help.

And, certainly know that tiring 'waiting game', ugghh!! :ghug:
 
I don't know that there is a maximum that can be absorbed. I think the body absorbs all the protein it can from food and once processed and utilised any excess is then excreted. Don't quote me on that though!

Low protein is not all that uncommon in chronic Crohn's and if no inflammation is present then I think you are right in assuming that scar tissue is inhibiting its potential to be fully absorbed.

Thinking about you guys and sending loads of hugs and well wishes! :hug:

Dusty. xxx
 
That stinks Jenn! Sorry the lab results have given you more to worry about. Before S went on EN I was trying to give him more protein too and found it difficult. He did like the Butterball turkey burger and it has 11 grams of protein. Not sure how well your son does with meat.

I have absorbtion concerns here as well. 3 weeks of EN and we are only up a pound. Thank goodness we haven't lost any...I am grateful for that!

Just keep trying to find ways to incorporate it in to his diet and hopefully the numbers will turn around!
 
Thanks! Neither the GI nor the nutritionist could answer me on amounts absorbed, maybe they didn't understand what I was asking. It could be, he can absorb 30% of all he gets, so if you up the total, you also up the total absorbed, but it seems there must be some sort of rate limit? anyhoo... lots of talk about EN here has got me thinking that route, but I know he wouldn't be very compliant about it. Won't hesitate if the doc calls for it tho. He's a good meat eater, ok with eggs, but not other high protein like fish or beans. He can do peanuts. I need to try Nutella, he might like it. There's no protein supplement as easy as say, B-12. The protein bars pack a punch, not sure how much he actually needs. So, here's hoping and waiting....
 
Hey Jenn,

I don't know if he can tolerate tofu but I used to hide tofu in all sorts of things. The two things the kids had NO IDEA it was in were smoothies with frozen fruit and mac and cheese. For the smoothies I used the sweetened desert tofu and for the mac and cheese I used the plain soft tofu. This however was all pre-Crohn's so I'm not sure how well it would be tolerated now.
 
There is a product called Soy Nut Butter. It's exactly like peanut butter, but is peanut free. It contains 7g of protein for each 2 tbsp.
I find it in my local Target.
 
Great idea about the tofu and the soy nut butter. I may try both. He's hard to sneak stuff past, he doesn't like mac n cheese or smoothies - sigh! :)
 
We actually talked about this a while back... Stephen's very picky too. We chatted a bit on whether they have always instinctively avoided foods that bothered them???

Stephen has never 'liked' fruits or veggies. While at the hospital, awaiting his colonoscopy, he was put on a low residue/low fibre diet - they were pretty much all his favourite foods! :)

My daughter, no crohns and eats EVERYTHING (really, some things you would never want to try! :lol:), never liked melons or corn. Found out she has a slight allergy/sensitivity to them and allergist suggested that she avoided them as a child because she was responding to how her body felt when she ate them....
 
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Alex goes on jags, he likes a variety of meat, veggies, fruit, grain, but not what you'd expect - loves broccoli, hates pasta, gags on mashed potatoes, doesn't like ketchup. He's a huge sugar fiend, so if sugar really is a problem for Crohn's, he has NO instinct to avoid it. :) He loves all the brightly colored fake stuff that even turns my sweet toothed stomach! Seems mostly a textural thing, but also an openness thing, stubborn as all anything to try something new.
 
Nope, no 'jags' for Stephen - consistently picky since he was old enough to say 'no-no-no'! :lol: 17 years of begging, bribing, arguing, worrying! :facepalm:
 
No jags for S either. When he was a baby he would just spit stuff back out. They say sometimes you have to try something several times before they will take it. Well, not him...he'd refuse it every single time. He likes fruits but no veggies. He's added a few things to the menu over the years but not many at all. If he had his choice he would live on bacon and cheese.
 
OMG, if I let him, Stephen would put bacon and cheese on EVERYTHING! :eek: He literally could live on eggs, bacon and cheese (and white bread) forever and be happy. :lol: He has added to his diet as he's grown but still eats his food 'plain' - very little sauce, condiments, dips, etc. His idea of pasta with tomato sauce is a bowl of pasta with a spoon of strained (because of seeds and doesn't like chunks of tomato!) sauce for 'colour' :yrolleyes: and cheese, of course!
 
Too funny!! S loves bread!!! And he doesn't use one condiment!! I thought all kids liked ketchup....uh uh, not my kid. He wouldn't dream of using a tomato sauce. Butter is the only thing allowed on his noodles. Our kids sound a lot alike!!
 
This is funny. My son is SUPER picky! Has been since about 1.5 years old. He hates most veggies and anything remotely spicy (he includes garlic and onions in with "spicy") and loves all bread products, most dairy products and meat. I used to think he was a super taster because when he was 4 we took him to Thailand and he had favorite brands of bottled water and he could tell them apart without seeing the bottles!!! My daughter on the other hand will eat anything and LOVES spicy food.
 
OMG, Stephen also has 'water' preferences! Doesn't like Nestle PurFiltre or Dasana... WTH... if my life depended on it, I couldn't tell the difference! It's WATER!! :rof:

Twiggy, Shelley - you might find this funny, Stephen has not lost his appetite for 'broth' :) His snack last night... non-veg French Onion Soup - beef broth, white bread and melted cheese (no onions!) :)
 
hahahaha! Alex has a water brand preference as well and also doesn't like Dasani. It all tastes the same to me (?!?). He always wants it icy cold too, he has his own little water pitcher in the fridge because the fridge filtered water isn't cold enough. Absolutely NO carbonation either, no soda, no juices, or soups/broth. sigh. but he loves spicy foods. He only eats the meat and sauce when we have spaghetti or O's. His hamburgers are completely plain, no cheese, no condiments. but he does like cheese otherwise.

Picky eating must be on the same gene... ;)
 
Jenn said:
Hi,
So, now what? Well, the GI was willing to believe it's a low-point on the average and wait and see next month's blood labs. Meantime, I get to freak out all month about trying to increase his protein intake. argh. :) where's that stabby.... :voodoo:
that feels better!
Click to expand...

UGH! Just posted the same thought drop the bomb and watch us obsess..Seems like you got some good news to. I did also...they must learn that in school.

So sorry you are left wondering. I don't really have a lot of advice. I do know cottage cheese is super high in protein but can't imagine any kid likes that.

As for low res diet...LMAO when I told one of my friends what was on the low res diet she said tell Olivia not to tell my kids or they will be faking Crohns.
 
I couldn't believe the menu choices they gave Stephen while in the hospital awaiting his colonoscopy - mac and cheese, french fries, grilled cheese, all white bread!!! As picky as he is, he still had never eaten such an unhealthy diet at home! :eek: And then after being diagnosed on Friday, it was decided he would start the EN Saturday afternoon - GI told him to eat WHATEVER he wanted until then! McDonalds for dinner, McDonalds Smoothie before bed and McDonalds-like breakfast! Ugghh!!! :puke_r: I kept reconfirming with the GI that this was truly okay! :lol:
 
Mom2oneboy said:
Is it just me or does it seem like a lot of our little crohnies are picky eaters?? Mine is SO picky!
Click to expand...

I am both a Crohnie (diagnosed 1 year ago) and a picky eater (since birth). Apparently as a baby I would only eat orange baby foods - go figure.
 
Mom2oneboy - the Humira is going well, he responded immediately to the loading doses - though those were a little traumatic. I'm getting used to the shots, as is he. He's still gaining weight and feels good. The doc has yet to use the word remission on him though.

Crohnsinct - hmmmm, cottage cheese. I liked it as a kid, don't now and my husband won't touch the stuff, but you never know. Things I expect him not to like, he does and vice versa. :)

OnMyOwn - that's too funny, only orange baby foods? I can't even think of any baby ones except carrots. maybe the squash? My son was a super chubby baby, ate just about all the baby foods, then his independence kicked in! My family still teases me about only eating grilled cheese sandwiches, I was so picky.
 
Well, rats. Redid bloodwork on Mon and just heard from the nurse. Giving it a month to settle out did no good. His protein and albumin is even lower and now calcium has dropped too. GI wants to do endoscopy/colonoscopy and maybe start prednisone. I'd like to repeat the upper GI, need to talk to her some more, next appointment not for a month. sigh...
 
Sorry Jenn :ghug: So disappointing and worrying when you get news like this!

Were you able to add any new proteins to his diet at all?
 
Oh no, what a shame. Still at least you will get a better picture after the scopes. Couldn't find the stabby face so will send hugs instead :ghug:
 
Thanks! The nurse bumped me up to an appt with the GI on Wed so get to ask all the questions then. Not encouraging to have the doc confused too?! The scopes won't get scheduled for a couple weeks out at least, I'd like to wait til school is out anyway. I really didn't change his diet at all, so he should've at least maintained. My gut is telling me this is prelim signs that Humira is losing effectiveness. But maybe it's just that he's stressed fighting off the pinkeye.
 
Oh Jenn...:hug:...thinking of you and that handsome guy of yours. Fingers, toes and everything else that all evens out!

Dusty. xxx
 
Figured I'd bump this thread over starting a new one. Had the GI appt yesterday.

Apparently, low protein levels can indicate heart, kidney, or liver troubles, but he's having no other symptoms and we know he has IBD to cause it. We are considering increasing his Humira amount from 20 to 40, he's just shy of the minimum weight for the higher dose. Probably try that before adding a 2nd med, like Azathioprine. GI said a recent conference had studies show a more success with 2 meds at once, blanket effect. It's likely the virus he's been battling for 2 months causing his pinkeye could be causing the protein dip. We are already delaying his Humira dose to let him get over the virus completely.

But, to be sure, we will now test the heck out of him: check urine and stool for excess protein, repeat the fecal calprotectin. endocsopy/colonoscopy with biopsy in a few weeks. Also, going to try a pill cam. We have to try a fake one first, to make sure he can pass it. I'm not sure he can swallow it, but we'll have to try. Next bloodwork in a few weeks. At least it's all after school gets out, one less thing.

Poor kid was not happy too hear about it all, since he still feels pretty good, just tired. He got 2 hits and pitched great for 2 innings in his last baseball game last Tues. Tough cookie. He got accepted to summer camp for Crohn's, hope we get him stable in time to go in late July. We are also walking CCFA Take Steps this Saturday.
 
Thanks for the update Jenn.

Sounds like you have a good solid plan. :)

I so hope all goes well for him over the Summer and he gets to enjoy camp! And well done in the baseball! What a champion! :medal1:

Dusty. xxx
 
sucker punched! I HATE Crohn's... sigh.

So, postponed it as long as I could, so he could enjoy camp, which he LOVED, but now we've got through bunches of tests and though Alex feels fine, bloodwork and tests show he's not so great. He's passing protein in urine/stool and his albumin levels are better than when he was sick last May, but still low.

He had an endoscopy/colonoscopy Tue and we got the biopsy results today. Visually, it looked good, just a few endothelial ulcers. But biopsies show mild-moderate inflammation in the eusophagus and various areas of his colon - colitis now. Makes me think Humira is failing, truly, but GI wants to add 6MP back in to the mix, and a course of flagyl. Also add iron. He cried over her suggestion of daily shakes to gain weight, he just won't do it. I'm waiting to hear if maybe a short course of pred wouldn't be a bad idea first instead.... will have to increase bloodwork to every 2 weeks from every 4 for awhile.

We tested for celiac, blood levels are a little high in IGA, I think it was, but biopsy was negative, but that can be false negative. so, maybe just gluten sensitive? It's a gray area, we're in a holding pattern for a bit. Might try a week gluten-free to see any effect, but will be immensely difficult, he's such a picky eater (ie see shakes reaction!)

We tried a patency capsule, it didn't pass in 24 hours, xray is unclear whether it left small bowel or not, so we are debating doing the camera capsule. It passed in 40 hours, was just the plastic covering, totally smushed flat. I don't know its worth the risk. His flouroscopy 2 years ago showed severe inflammation in the same area.

Really feeling frustrated! Poor kiddo.
 
So glad he enjoyed camp. Jack loves Camp Oasis! Jack won't do the daily shake either (he's 13 so no crying) just dug his heels in and refuses says it makes his stomach hurt.
We just switched Jack's meds to LDN, we waited until after camp because we didn't want to take a chance of a flare at camp and wanted him to have a good time. Had a little trouble last month and decided to go gluten free to give the LDN time to work and it seems to help. It hasn't been as hard as we thought it would be (easier then trying to get him to drink protein drinks). Let us know if you decide to give it a try.
 
So sorry to hear that your poor boy is struggling through all these tests! Glad he enjoyed the camp though - wish we had them over in Scotland but no such luck. I hope whatever plan they come up with works great for him so that he can feel better again! I know what it's like with the shakes - my son refuses point blank to drink them as well - he said he would rather have a blood test than drink one of them so it must be bad. Wishing you both all the best!
 
We are hoping to try ldn too. Our gi said she would research since our son is not severe. The shakes are a battle at our house too. Some success with carnation instant breakfast. Jenn i Just posted a question thread re another product that nestle sent us. Hoping it can substitute some for shakes. Perhaps this could help:D:hang:.
 
So sorry to hear about the new test results. I'm Happy he had a good time at camp.
Grace has Carnation Instant Breakfast.
We or I mean she:eek: loves the chocolate kind.
Her is just for supplement. It does have more calories. However with Grace being so active and us just trying to keep her above 35 lbs, it's worth it.:D

Farmwife
 
stinker doesn't even like carnation instant or ice cream shakes or Breeze or smoothies. I tried that Benecalorie and couldn't figure out how to mix it into anything, it made everything like a shake! What a waste of money. sigh. :) Mentioned LDN to the GI awhile back, she hadn't heard of it, wasn't sure why/how it would work, but was willing to research it a bit. But, wasn't willing to try it on pediatric patients til more studies. Maybe someday.
 
Sorry he's having to deal with all this (and you too!) :(

You said he doesn't like Carnation 'instant'... have you tried the premade Carnation Breakfast shakes (they come in a carton of 4). And, does he like regular milkshakes? If yes, maybe you could add some ice to the shake and blend it to make it like a smoothie?? Or, just take the premade Carnation Breakfast shakes and freeze them into popsicles??

But, I remember how tough, pretty much impossible, to convince Stephen to try 'anything' at 10...:ghug: (it's not much better now! :lol:)

Good luck!


Note: Just read MLP's comment elsewhere that freezing supplements may reduce their nutritional value... not sure if this would apply to Carnation Breakfast as well???
 
Jenn - so sorry things aren't better. No advice just aome hugs and prayers that you find something that works. :ghug:

Oh wait, just remembered our doc told us about these juice box drinks Ensure Enlive...they are abouot 200-250 calories and I know come in apple juice flavor and a few others although I am not sure which as O hates juice of all flavor and kind.

Good luck!
 
momoftwinboys - pudding should work, did you try it? Alex won't eat pudding either!

tesscorm - it's worth a try, he does like fudgsicles. who cares if some of the nutrition is lost?! it's better than nothing? :)

crohnsinct - I'll look into the ensure enlive, I just saw a bottle of ensure clear that we still need to try. here's hoping.

Thanks for all your responses! I'm feeling incredibly difficult for the GI at the moment, I just do not see the point of restarting him on 6mp, I don't think I can. My gut says humira isn't working well, but what else to do? side effects of steroids make them probably out, and he can't swallow pills. Kind of up against the wall. It's so challenging parenting a child with IBD! sigh.
 
Just a side note CCfa has a PDF on how to teach kids to swallow pills.
It took two weeks lots of tears but DS learned to swallow pentasa whole ( no easy feat) and managed to get a toy out of it.
Have you had a 2 nd opinion Gi look at him?
We are going that route not challenge if he has crohns. But to see if there is anything else we can/should be doing.
It has taken two months but just the extra tests alone they are having us do has proven to us fresh eyes are well worth it.

Good luck
 
Jenn, one other item I've recently brought home is wheat germ. The package that I buy shows that it has 5 grams of protein in 3 tbsp. As both my kids want to increase their protein, I've suggested that they sprinkle it on 'everything' (like a spice - I just keep it in a spice jar in the fridge). I doubt they reach 3 tbsp in a day but, they do get 'some'. I actually bought it because David was questioning choline levels, wheat germ provides choline (benefits liver and Stephen has recently had elevated liver enzymes) and I found that Stephen definitely doesn't have enough choline in his diet and the 'protein' is just my 'carrot stick' to get the kids to have it regularly. :)

But, be careful of too much wheat germ as it is also high in fibre.
 
my_little_penguin - Thanks, I'll look for that pdf on swallowing pills. It's frustrating!
I have recently been thinking about discussing his case with specialists, like Mayo clinic or something, I'll have to look around. I really like his doctor, but I often feel on a different page from her. I just cannot bring myself to add 6mp to the humira right now.
 
OK, we've added 6MP. sigh! Spoke with his GI last night on the phone for 15 minutes and she reassured me, went over all my questions and concerns. Humira is working, but not at 100%, based on labs and biopsies, even though he seems fine. I still don't like it, but what are you going to do? The only positive at the moment for me is that both his Humira and 6MP doses are less than ideal for his weight, he's in a gray area between pediatric/adult dosages, so ideally the 6MP will bump up the Humira, either filling in gaps or adding on, until he gains some more weight and we go to the higher dose of Humira in a year or so. Also, it should reach therapeutic strength in time for his usual flare around Dec/Jan period.
 
Jenn, I'm sorry that you've had to move ahead with the 6mp. It's certainly not an easy road we're on :(

Sending lots of wishes and hope that this will do the trick for him and he will avoid any relapse for a long, long, long time! :ghug:
 
Sorry to hear about the 6mp, I hope it really does the trick and gets him into remission!! I have a feeling I will be having the 6mp discussion tomorrow with the paediatrician :(
 
Sorry if it has been mentioned already this is a long post and I'm tired and don't want to read everything lol. Have you thought about Parenteral nutrition through a PICC line for awhile? This would allow him to get healthier very quickly and not have to eat anything if he doesn't want to. They usually use this for obstruction but its also perfect for a situation like this. Honestly the low protein issue is a direct reflection of his anemia of chronic disease I would not dive to much more into it than this. I have found with this disease everything is a direct result of it and most times its not the worse case scenario one. My biggest advice is that if he cannot get this under control with the PN, Biologic, 6MP he is looking at surgery. The one thing is if the majority of his disease is not cleared up the surgeon will make the choice of giving him a stoma or pouch due to his activity in the large intestine and honestly it's there to save lives I know but I could never make such a big decision for my kid if there was a way around it. If it has to be done it is what it is, I would just want them to be a little older and make the choice themselves.
 
Oh Jenn, I am so sorry to hear that you have had to add the 6MP. I hope more than anything it does the job and your boy soon has the healing he needs, bless him...:hug:

Sending loads and loads of love, luck and well wishes your way...:Karl:

Dusty. xxx
 
<bump> and update

So, 2.5 months after starting 6mp and Alex is doing well. He's still gaining weight and had more energy, it seems. He's learned to swallow his 6mp pill too, which is AMAZING! We have a followup appt. on Mon, did labs last Mon, I was looking forward to it. Til the GI called me yesterday with news that his protein is still dropping. ^$#%@& Trying to pull it back together after a mini breakdown. Why oh why couldn't the doc have waited til Mon for the news? I got sucker punched at work and then had to cheerily face his Humira dose yesterday afternoon. Feel like I'm falling apart (I injected the air of the syringe into him 2 weeks ago, that wasn't a fun moment). SO frustrated... Also, his calprotectin was down a little bit, but still in the 2k range.

so, she wants to follow up to rule out bacterial or viral infections or new fistulas - with some stool samples (no big deal), more bloodwork (minor big deal) and MRI (major big deal with drinking contrast and IV contrast, he will NOT be happy). And all of the tests, to what end, really? They won't show any more than we already know, it doesn't fix the malabsorption or change our therapy plan? It unnerves me when that the doc is "puzzled". I don't get it, though, looking at protein-losing enteropathy, we know it's from his IBD, and really, it hasn't been long enough on the 6mp to worry yet? Again, it makes me think he has scarring and needs surgery? I think I will ask her about a consult at a specialty clinic. Maybe Humira is failing? His SED is great, other blood levels good too. <sigh>
 
The protein problem is concerning, is he often fatigued? and does he get random bursts of energy and then crash hard?

My uncle was a professional body builder back in the day and I asked him how much protein can be absorbed in one given time. He told me that 60g of protein was the max amount that could be assimilated in a 1-2 hour period (depending on metabolism), but that is for a full grown man. I would imagine for a youngster it would be around 30g. Have you tried switching types of protein up on him? If he has allergic or pain responses to dairy he might not be able to absorb whey or caseinate protein as well.

I take hemp protein powder and I find that it is easy on my gut. Rice, or egg protein might be a better option as well.

I also know there are liquid protein supplements that are supposed to be much much easier on digestion and more quickly absorbed. You might want to try that.

Gianni
 
Sorry to hear about all the extra tests. It does seem quite a big leap to do all those tests when the 6mp may not even be at therapeutic levels yet. If he is feeling well in himself, then maybe you could wait a little while to see if the 6mp just needs more time to work? It is so frustrating when they go along for a while seeming so well and then something bursts that bubble! If they are going to be doing more tests can you ask them to specifically look for any scarring that might be affecting protein absorption? Good luck with it all!
 
You have raised some very pertinent questions Jenn and they would be exactly what I would be asking the GI at the appointment on Monday.

If they are looking for something specific in a test then that is fine but if they are doing it simply because they don't know which way to turn and they aren't really expecting any great differences then I think the trauma to the child just isn't worth it. I don't think it is unreasonable for the GI to fully explain why she thinks these tests are worthwhile and then you can decide there and then based on her answers.
I have said no to tests in the past based on the fact that I didn't see any useful purpose to them and the doctor wasn't able to provide one.

As to surgery, I agree that a surgical consult is worthwhile. Although my two have had surgery I still believe it should be used as a last resort in most cases but there are those in which I do believe surgery is not a last option but rather the best option. One of the reasons I would consider is for a child that continues to have absorption and/or FTT (Failure To Thrive) issues.

Good luck with the appointment!

Dusty. xxx
 
Hugs
We have had ct / mre when things weren't going as planned even though his blood work was normal etc...
Our Gi theory was the imaging/ blood studies permitted him to get a quick look to verify things were not going in the wrong direction so he could change meds etc before there was too much damage leaving surgery as an only option.
Mre was not really a big deal .
Have you tried buzzy bee for Iv's .
That used to be a big thing for him .
Without buzzy he would freak out but since he just keeps watching tv slightly annoyed that he can't move while the iv is going in.
Also is the mre being done at a pediatric hospital.
Ours is painted kid friendly theme - one room is outer space another pirates etc..,
You could ask for child life they have tricks to help.
Ask if they have buzzy bee to use some hospitals do but don't advertise or
You could order your own .
We have used ours more times than I can count in the past 2 years and it still works just needs new batteries.

Here is the link
http://www.buzzy4shots.com/

Good luck monday
 
Thanks all! It is frustrating. The patency capsule was uncertain at passing, so we never got a look at his small bowel after redoing the endoscopy/colonoscopy and biopsies last Aug. But, we added the 6mp anyway. My instinct has always been that he has scarring. And the MRI would show that, I'm sure. I mean 2+ years of meds are helping his inflammation but not his protein absorption. We've pumped up protein, so it's not ingestion levels, but disease. So maybe surgery is necessary, just don't know how you know. I don't want to do it, but I'd love to have 10 years of health for him while he's growing and in his teens now. I will post again after the GI visit. She always gets me to a good place!

He doesn't seem to spike and crash with his energy levels. He doesn't have any known allergies, but might be worth testing. I have heard of but not used buzzy bee, seems like a great idea. It's the anxiety more than the pain really, and drinking the contrast that upsets him.
 
well, not much to add after the appt. We'll do all the tests. We'll check back in with the endocrinologist. She's going to review his case with the other docs in the group. After all's said and done, I might look into reviewing his case at the specialty pediatric IBD clinic. After the tests, we may try a round of pred, as we have never done that. He is near the weight limit on the pediatric dose of Humira, so may increase that. But surgery is a likely last stop, based on the MRI results. so, a few months to go. In the meantime, 6mp is not quite at therapeutic levels and maybe will boost now that I'm not crushing the pill. She was happy with his weight gain and overall he's well, good energy, good color, feeling good. Just that stubborn protein loss and high calprotectin. I'll update when I have more. Thanks for all your support, I really appreciate it and need it! :_)
 
I would start the second opinion process now since it typically takes two months to get in.
When you Gi is talking with the rest of the group that is definitely the time to start so you have more time to get in and make an informed decision .
I wish we had started ours sooner before remicade because we ended needed it before we could get a second look appt.
 
I am wondering if the doctors have any idea why he has protein in his urine. Is it a little or a lot? Nephrotic syndrome (proteinuria, low serum protein and edema) has been reported in a patient on Humira, and it disappeared after stopping the drug.http://www.ncbi.nlm.nih.gov/pubmed/12852723 If the proteinuria (urine protein) is the likely cause of the dropping serum protein, this should be considered and a nephrologist would be the specialist to see.

Best wishes.
 
plodding along.... wish us luck on Wed, he finally has the MRI, both contrast and IV, won't be a happy camper. Weight gain is still good, averaging 1 lb/month for 2 straight years now. Trying to rule out the pesky low protein despite meds.

Did a stool sample a month ago and was negative for one type of bacteria, but the silly nurse didn't give me enough vials and now have to do another stool sample to rule out giardia. sigh.

extra bloodwork panel to check allergies. No food allergies, hooray! no shock about the environmental reactions to dust, grass, cat, and dog (who doesn't?!?). We already do what we can to minimize those.

protein still low, all other labs fine. calprotectin came down slightly, but still high (1600). we are past the 3 month mark on 6mp now, so hoping labs will improve soon.

hand xray shows bone age still 2+ years delayed. saw Endocrinologist yesterday and he wasn't concerned at all, said Alex has got tons of time to catch up. He grew on curve over the last year just fine and based on 8-yr chart, he'll be 5'10" when alls said and done (at 20 +?). ah, but it's hard now.... Teacher told us at conference earlier this week that he was crying a few weeks ago when a kid called him a munchkin. He never told us of course. I told him yesterday that he's lucky to get to be a kid longer than most people do.... Will run a blood panel to check thyroid and hormone levels with next monthly labs anyway, but no need to recheck til he's 13-14.

GI tossing the idea of EN, which I'm not opposed to, but the logistics will be difficult and am afraid effort won't be worth it. if only I had a crystal ball! Still, might be worth trying that or a short course of prednisone to kick him to remission before trying resection surgery. Should know the picture much better after the MRI results. But the way things go, it's always some weird, indeterminate state.... :)

Hanging in there!
 
Hugs...
Is his bmi good? For his age not that of an 8 year old.
Lower bmi for his age would slow his growth.
Does he supplement at all?
We just did EEN for 9 weeks.
Would the Gi go for drinkable supplements such as peptamen junior.
We put that in stainless steel water bottles so the kids at school could not see it.
Hope it improves soon.
 
Check the pediatric Ibd research paper link.
I posted a few paper links on Ibd growth and kids
Maybe they can help
 
That's good that things are going ok. I know the EN is hard work, but my son's calprotectin went from 1600 to 168 after 8 weeks of EN. Maybe it's worth a try - it might help the meds work to their full capacity. Good luck with the test on Wednesday!
 
There is a max amount of protein you can take in a certain period, because you need enough enzymes to digest it, but it's wrong to assume there is some hard cap that is easily reached, the cap is way higher than what most people take in, as long as the enzymes keep up, you can take in protein.

In studies they have shown this and there is plenty of annecdotal evidence online that the body can digest tons of protein. People going on warrior diets , which are diets where you don't eat for the entire day, and then eat everything in a number of hours are totally doing fine, people who do the diets where they don't eat much of anything for 48 hours and then eat everything in a few hours, surprisingly, they seem to be doing fine. It makes sense, animals with similar intestines to us often don't eat for 48 hours. (I don't recommend doing this at all, I think 3 meals a day is still better, but the idea that you have to constantly eat seems wrong, the body can digest tons of food in a very short time)

I think the biggest issue is the glycogen stores, they are limited. The body's fuel comes from blood glucose, all sugar, carbs, and fat if it's tapped into, becomes energy in the form of blood glucose, and if you don't eat enough fat or sugar, you get headaches and lose energy (which is why they often give glucose IV in hospitals to crohn patients, it's pure energy ready to use). If the body runs out of blood glucose it starts to use glycogen storages, after that it starts to use fat. But I would not worry with adding more protein if needed, as long as the body produces the enzymes to break it down, the cap is much hard than most people assumed.

Another thing about protein, your body uses sugar for protein synthesis, especially sugars like fructose. The effect isn't extremely important, but it helps. A diet that avoids carbs is probably hurting protein synthesis.
 
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Jenn - Just getting caught up on your thread. You are clearly doing everything you can and on the right track. I've been there more than once with the "puzzled" docs :ybatty:. It is unnerving. The ONLY good thing I can say about being a complicated case is that you (and your child) stay on the forefront of their minds and research.

Praying for clear answers. I used to say "We can do anything with a diagnosis and a plan." The plan changes a lot but it is always good to have one.

Keep us posted.....

:ghug:

J.
 
I guess I got lucky. Though Rowan was a picky eater before, she eats pretty well now. Regardless she cannot eat much fruits and veggies have a J-pouch and all. She eats her protein. I bought her a scooby-doo game that talks about protein and food all the time. I tell her she will get big and strong like her favorite cousin whom she adores and it really worked. She eats a lot of protein now, salmon patties, chicken salad sandwiches, bacon, hot dogs. ( yes I know salt salt salt but she is easily dehydrated so salt is our friend) I make quinoa desserts now using quinoa flakes, they are really good and packed with protein. My best to you and yours I hope you can get the protein levels up. Maybe just trying new food and having her favorite person introduce them to her. I was shocked she loved chicken salad sandwiches. After she eats her protein she tells me to feel her muscle... Like Popeyes.. lol
 
Hey Jen...:hug::hug::hug:

It is hard not to think that the elevated calprotectin and the continued low protein is pointing to some chronic issues. If there are indeed ongoing problems in the ileum then low protein will likely persist until the root cause is treated.

I so hope the MRI is able to provide you with solid answers and a clear direction to follow. Good luck!

Dusty. xxx
 
Thanks. I will post again when I know more. We don't think the problem is intake, he's been good about trying to new foods lately too, which is awesome.

I had not calculated his BMI, just googled for a pediatric calculator and he's in the healthy range for his birth-age, 72%. Interesting. He HATES shakes, I don't think that'd be a go, but a good idea about the thermos!
 
OK, put him (and me!) through the grinder and the results are: no strictures! hooray! His giardia stool test was negative too. Still need to check his hormone levels, but all looks ok. Still no answer to the low protein. Doc says no change to treatment management for now. But she did say the MRI results are compatible with IBD. What does that mean exactly? they can still see inflammation? hmmm. Would love to be able to see the scan, wonder what it looks like.
 
Well that is good news! Hooray! hope they get this protein figured out.

I know all about no go with the shakes bc he hates them but think of it like this. It is a way to avoid TPN if he were ever hospitalized. TPN requires a central line which for me means a trip to the OR and sedation. It is an area well worth pressure. I know we hate to pressure our kids to do something they wont like but sometimes I have had to take the low road to get to the high road. It was detrimental to Rowans health at one point. I hope to god you never get to where we have been but I am one to always prepare for the worst and pray for the best.
 
Did you request a copy of the MRI reports?
We. Get copies of all test results and blood work.
Glad there were no strictures.
I second the shakes .
DS can't stand the taste but realizes. They are meds prescribed by his doc so just like the giant asacol pills or remicade iv not optional.
What he has for lunch is optional -.
 
our doctor pulls the images up on the computer and explains the images to us. I would ask, they also give us the report but seeing is believing for me.
 
My son went crazy about the shakes too. Said he was going to throw up the entire thing if we made him drink it. (with tears in his eyes no less) Then he wanted a song on iTunes and I said he could get it if he drank a shake. He drank it. He is suppose to have 2 per day. He has carnation instant breakfast with whole milk in the morning and then an ensure at night. He has gotten use to it. It is so difficult to know how hard to push them. But I think MLP is right that it can be as important as meds.
 
I think I need to explain the not liking the taste - that is after a year.
For the first week he cried and cried .
I had to plug his nose for him while he took small sips from a straw. It does taste foul.
He would finish one - rinse repeat.
He had a similar issue with boost kids at first as well - I have taste those not too bad.
Now he thinks the boost kids taste like milk shakes or dessert and the peptamen jr still tastes bad.
 
We sometimes referred to Badger (outside his hearing of course) as the White Boy because for a while all he would eat was foods that were white - milk, pasta, white bread. You get the idea.

For him I think it was about two things - texture and smell. He has stopped smelling every thing before he eats it (thank goodness) but he has an acute sense of smell and I can see how that would put you off eating things very quickly.

He clearly has sensory issues in other areas too so it's not surprising that the textures of foods influences his willingness to eat them. Also what's combined together makes a difference.
 
Funny, Badger sounds just like Alex with the sensitivities! Definitely a texture/smell issue with all things, not just shakes.
 
(bump)
Just had the GI followup yesterday and all is GREAT! Can I really breathe again? :) We are 5 months in with adding 6MP to the Humira and he's gained about 10 lbs and an inch in height and finally, FINALLY, his protein is coming back up, as is calcium. It's still not at the level the doc wants, but it's getting there. Well, it might be there, but when we did the monthly labs 2 weeks ago, they didn't do the standing order and apparently only did the new endocrinology order (which was in low range of normal). Have to go back next week, but if it's good, we can stretch out bloodwork to every 2 months instead, which would be so nice. It seems the combo is working and is the trick, for the moment anyway. Weight gain has been good, so we've dropped off the protein bars and the periactin.

Before we could do a happy dance, she wanted to keep in mind doubling up one or the other soon, probably Humira. I do not want to of course. I like him being on the minimum dose, but with his weight gain rate, it's diluting pretty quickly. He's at 25mg 6mp (1/2 pill) and should be at 3/4 pill. He's on the pediatric range for Humira for Crohns, but adult dosage is recommended for his weight for Rheumatoid Arthritis, I guess just based on the studies that had been done. So, we'll see. Right now we have effectiveness w/o toxicity sweet spot.
 
:congratualtions:Yaaaaayyyyyyyyyyyyyyyy!!!!!! :congratualtions:

(takes a moment to regain composure)

Of course I meant to say how gracious of you to share this moving news so eloquently with all of us here. I for one have been touched deeply.

:hippy::Flower::grr1d::grr1d: :Flower::rosette1::Flower: :grr1d: :grr1d::Flower::hippy:
 
Great news!!

They just doubled Johnny's dose of 6mp today too, so I know how you feel about them taking more meds but as they gain weight I guess it is inevitable.

Thank you for the update :)
 
Patricia56 - thanks for posting your son's history. I know it's often only a one-off example when we share things, but it really gave me the courage I needed to face putting him on both Humira and 6mp at the time. :_)
 
I also have had low protein. Not real low but just under the normal range. I did an experiment using a digestive enzyme to see if it would help. It did raise my level by one point. Since I only took it with one meal, that was not too bad.
I would guess that if I would have taken them with every meal it may have been a more substantial increase.

Good luck

Dan
 
Hi all,
Sorry that I've been really absent from the board the past month or so. Alex is doing terrific, we've had a good summer. Time is up for Humira+6mp combo, so he has just started the adult dose of Humira and will cut 6mp in a few weeks and see how things go. I hope it doesn't induce any side effects. He starts middle school on Tuesday (eep). Protein has been good all year, with a few random dips along the way. He has grown some, but is still much smaller than his boy peers (I can't even compare him to the girls, they grew so much sooner, what is up with that?!? :) ).

We are rechecking his vitamin D levels and repeating his DEXA next month. I just noticed his calcium/Vit-D supplement says "not formulated for children under 13", what the heck? How is it actually different, anyone know? I may call the company and try to find out. Technically, he should be getting enough from his multivitamin anyway.

Jenn
 
So glad he's doing better and you're able to just enjoy summer! :D

Stephen didn't have crohns issues until 16 years old but, until 14ish, his sister (only 13 months older) was always a foot taller and sometimes 20 lbs heavier! :eek: He was always one of the smaller kids and she one of the bigger kids in classes. But, seems the girls growth really seemed to slow down at about 15ish and Stephen is now way beyond Emily in height and weight! :D 14 plus was when Stephen really started to pick up in weight and height.

Hope all goes well for him in middle school and he keeps feeling well for a long time! :)
 
Wow Jenn! It is so fab to hear that Alex is doing so well...:mademyday:

As to the whole boy/girl thing...aside that we females are far more advanced than the male of the species :lol:...there are huge variations but girls generally hit puberty before boys.

Onwards and Upwards!
Dusty. xxx
 
Despite my endless worrying, things are still going well! He just had a checkup and bloodwork and symptoms are all good, 6 weeks after the changeup. Dexa was normal, vit-D fine. Protein is still low, on the bottom edge of normal. Need to repeat calprotectin and check in with the endocrinologist soon, since both have been a year. Still knocking on my wood head. :)

His weight is good, but height is still sluggish. Going in to pants season and in crisis, nothing fits! I am attempting to learn how to hem, but the pant leg width gets too big too. Anyone with solutions?!?!
 
Totally get the length thing. I have to take Jack's to a seamstress for alterations as it is way more involved then just straight hemming which is no problem since I'm short. Size below is too short but fits in the waist and next size up which most of the time is pretty close in length, they are about an inch too long and I'm hoping he will get taller so I don't want to hem, is way to big in waist. I have adjustable waists put in and they adjust the width of the pant at the same time.
 
Glad things are going well. As for the sowing - not my thing, so I tend to take things straight to a little shop that does alterations!
 
Jenn glad to hear your son continues to do well.

As far as pants go, have you tried old navy jeans? They have slim, reg and husky fit along with adjustable waist. That combined with their loose, boot, classic, etc cuts give a large range of body types a shot.
 
I will look at Old Navy, thanks! Found a Levis 511 skinny that works ok, just need hemming. The alterations places I've tried are pricey, so figured, might as well learn sometime! :)
 
Hi there, years ago I met a woman and her daughter (both had Crohn's) but very differently. One had it mostly in her lg bowel and had it removed ~ the daughter however had times where her protein would drop so low she would end up in the hospital. They found a product called absorb aid that helped break down foods somehow to absorb proteins better. I am super sorry to chime in here ~ I just wondered if you could ask your Dr. if this could be of any help or worth a try. It is sold in health food stores and online.

As for how to hem a pair of pants - try iron on hem tape ~ it's magic!

Much peace
 

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