Is it Mono or Crohns?

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Jmrogers4

Jmrogers4

Joined
Jun 5, 2012
Messages
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Leave my bubble alone!

Just returned from the peds office for Jack. He has been coughing horribly and low grade fever since Thursday 99.4-101.3, sore throat and just tired - not even playing xbox, going to bed at 7 getting up at 6 up for an hour or two and then back to bed. Figured he had the flu going around.

I only called to see how much tylenol I should be giving do I give him childrens tylenol or adult since he is over 12. They asked me all his symptoms and if he was eating/drinking (very little, who wants to eat when you feel yucky) so long and short they told me they would prefer to lay eyes on him so off we went. Quick check on him and decided his throat looked bad enough to swab for strep (Yay, negative) then he says he wants to test for Mono (WHAT!)

Also seriously concerned about weight and he is going to message his GI. Now I'm stressing out. Does he have mono? What's going on with weight? 1lb since July. So now I'm waiting for GI to call although GI offices closes at 4 and we left ped's office at 4 so probably will not get a call until late tomorrow afternoon at the earliest.
 
Oh no! Waiting sucks:mad2:

I hope everything is o.k. and this is just a bug. Sending lots of buggy vibes your way. Keep us posted! Hope he feels better soon.
 
Sending hugs and support your way! So glad he doesn't have strep! I hope he doesn't have mono either!!
 
I'm sorry he's sick ~ and I wish you could live in that bubble forever :(

Just FYI ~ Mono symptoms can greatly mimic Crohns symptoms !
I'm glad the GI will be involved. Try not to over think it all :)
He may "just" be coming into a flare, and need a meds adjustment
:hug:
xoxoxoxoxo
 
Will say this about his ped Dr. He has UC so is really on the ball with anything to do with his gut and is on it in communicating to the GI
 
:yeahthat:
Could be a flare ......

Generally weight ideas we did to up DS calories to 2600 a day
Cereal for breakfast and before bed
Butter smeared under peanut butter and jelly on sandwiches
taco baked
Salsa ...chips ...tomatoes ...shredded cheese ( daiya if he needs soy /milk free)
Tofutti sour cream or regular ....chicken
Avacados diced put in layers ... Baked in oven till melty

Twice baked potatoes

Cook veggies on stove in olive oil.



Hugs
 
He may have lost a few pounds just recently from not feeling well???

If it is mono be very careful. I had mono in high school and my Dr. missed it the first time. My mom took me back in 2 months later and a blood test showed mono. My Dr. said that because I had it so long and didn't rest that it would reappear anytime I got run down. (and it does) It is also linked to autoimmune disorders. So lots of rest, fluids and more rest and he will be fine. :)
 
MLP, that taco bake sounds yummy! Well 2 hours out of the house and he is wiped out, back asleep already.
 
Oh, I'm sorry about the bubble. We put so much time it to making a perfect and then comes a long someone with a pin and it burst asunder. So mad!:yfrown:

Hugs to you and your boy. I hope you figure it out soon.:rosette2:
 
my little penguin said:
:yeahthat:
Could be a flare ......

Generally weight ideas we did to up DS calories to 2600 a day
Cereal for breakfast and before bed
Butter smeared under peanut butter and jelly on sandwiches
taco baked
Salsa ...chips ...tomatoes ...shredded cheese ( daiya if he needs soy /milk free)
Tofutti sour cream or regular ....chicken
Avacados diced put in layers ... Baked in oven till melty

Twice baked potatoes

Cook veggies on stove in olive oil.





Hugs
Click to expand...


MLP, does that taste good??????:shifty-t:
 
Tofutti is a brand that is soy based and and milk free.
They make ice cream, cheese , etc...
Tastes good - I just don't tolerate soy though

So delicious makes coconut milk and ice cream whic is also high in fat
 
Oh we don't do soy at all in this house IF we can help it. My hubby's done a lot of research on soy and I agree. We don't want it IF we can help it.

I heard that coconut milk you can whip up into whip cream. I guess it taste great! Some one said the ice cream taste great too.

Sorry, hijacking. Food does that to us.
 
Daiya is a cheese that is dairy and soy free .
But it could be a while before Grace gets any foods back ..
:(
 
MLP
:cool:I'm starting to think that when the nurse said something about the 3
month mark of EN. :shifty-t:


SHHHHHH, this is a bubble thread. Put the pin down.:yfrown:



:ylol:
 
No pin

Typically a child does en for 8-12 weeks then a scope if its clear of EOS then the Gi will work with the allergist to decide what food to trial.
Pears or grapes or chicken
Usually only one food for up to three weeks - no flare then you add a other food.
Usually 1-3 foods per scope unless a fail
This means plain chicken all day every day for three weeks.
Or grapes everyday no other foods
She would stay on formula until she has a solid diet back.

Some docs try top eight free diet-
No milk eggs fish shellfish treenuts peanuts soy or wheat
For three months then scope ...
Something to ask your Gi
 
Jmrogers, the blood test results that you posted were those recently? I didn't know what any of them meant but didn't someone say that it could be an infection of virus from those, maybe he has been dealing with a virus.
 
No those were actually from his last appt a few months ago I just finally got a copy as they had forgotten to send to me, his ped pulled them up and looked at them and said he was a little low on the vitamin D so I just picked some up for him to start taking, GI never said anything about Vitamin D. I'll make sure I ask in the future.
 
Oh I was trying to help fix the bubble, I thought they were recent! C was low on vitamin D too, which vitamin D supplement do you guys use?
 
I picked up some Naturemade because I happened to be at Walgreens, Is one better then the other? There were so many choices I was getting a little confused so I got 1000mg
 
I don't know I got confused by it all too, I actually ended up ordering some that David had recommended in a thread, Biotech D3 plus. I also read on the vitamin D thread that you need to take it with something fatty since it is fat soluable or something(if it is a solid like capsule, if liquid I don't think you have to) so he takes it with peanut butter.
 
That is good to know I was going to have him take it at night along with his LDN so he remembers, the doc was just telling him today to add peanut butter to everything when we were talking about ways to increase his calories so when he gets sick like this, losing a few pounds is not a big cause for concern I think his BMI is 15% which puts him about in the 1st percentile
 
C has gotten use to it now and we are doing the same with peanut butter, often and lots of it. But it seems every time we take a step in the right direction he gets sick or starts to flare and we are back at square one with the weight!!! UGhhhhh!
 
It is so frustrating! We don't want to constantly nag him to eat but if we don't he doesn't so we nag, he gets up to 82lbs and we slack and he drops back down to 79-80 gets sick, has a flare and is down to 76-77. Certainly would have not imagined we would be this worried about his weight when he was born as he weighed in at 9.3lbs
 
Our problem is more C eats us out of house and home when he is having no symptoms, but I think he is still having malabsorption issues, then when he is sick he has no appetite and here comes the weight loss. C was a little fella..5lbs 4oz.
 
Hugs I didn't realize how thin your son was.
DS is 9 and weighs over 70lbs ( after a twenty pound gain from peptamen + pred)

I know how frustrating the nagging gets - my oldest non Ibd kid is starting to lose weight at 11 due to not eating . It can be very hard .
 
Did his appetite go down when he quit the ppi?
My oldest did so far a week back on Prevacid and some appetite is back but not alot
 
No the prevacid didn't seem to have any change in his appetite one way or the other. We definitely need to do something in regards to his weight. I think we have hit a wall at home or at least my head is beating against a brick wall :angry-banghead: He absolutely refuses to drink any of the ensure/boost. I've tried making them into shakes, smoothies and he will drink a couple of sips and never finish or just gag the entire time.

So if the GI doesn't call tomorrow, I will be calling him when we were last in he was talking about putting him on an appetite enhancer if he didn't see some improvement in weight gain. Do you think I should talk about an NG tube to get those extra calories in him
 
Periactin is an appetite stimulant ( old school antihistamine)
Gi put DS on it to decrease abdominal pain increase weight etc
It didn't help at all
An ng tube at night might work
He needs a cushion otherwise growth brain development might be hampered
 
That is my biggest worry especially as we are starting these teen years. That name sounds familiar. I'm leaning towards an NG tube even though GI has never brought it up. I'm feeling that we need to be assured he is getting the calories/nutrients he needs and not count on hoping he eats enough or that it works I feel we don't have a bunch of time to waste.
 
You are Absolutly right about not wasting time with him hitting his teens. Caitlyn lost at least three inches that she will never get back. EN sounds like a good idea for him.
 
Learning to insert the tube nightly has been a huge relief for us! I know Stephen's getting the nutrition he needs and he's also happy to get his nutrition and not have me nagging him (as often ;)). I even asked if he wanted to skip it tonight (didn't want to aggravate anything after the scope) but he said he wants to go ahead with it - so it truly doesn't bother him to do it. It would be such a relief for you if Jack found it as easy! If you do ask the GI, make sure you get a SMALL tube (Stephen's size is 6-Fr).

I hope the results are good tomorrow!!! :ghug:
 
Sorry to hear he's not being feeling great, it is a worry when they sleep too much. Andrew hates "wasting time" sleeping, so I know he is really ill if he falls asleep during the day. I hope it's not Mono and just a virus! No advice on the weight gain, we usually have the opposite problem, although I have noticed that Andrew seems to be eating quite alot and has snacks/biscuits and hasn't been putting on any weight. Hoping it's just because he's growing - see keeping my bubble intact.
 
Ugh! So sorry he isn't feeling well and about the weight issues. I think the tube sounds like a great idea...and if you can get enough in him at night he can go happily along not eating during the day...at least for a little while...too much of that will bring its own problems.

I would be concerned that maybe he isn't absorbing due to inflammation. I know you are thinking the most recent turn of events could be a flare but are you sure he hasn't had ongoing inflammation? Maybe I missed another post somewhere so if you have answered this I am sorry.

Also, why isn't he eating. Is he just not hungry or does eating bother him?

Well, just in case there is inflammation the tube could potentially help that also especially if he goes EN.

Hugs!
 
I posted his last blood tests from a couple months ago on this thread http://www.crohnsforum.com/showthread.php?t=46157. Both the GI and the Ped thought they looked good.
Hubby wants to try the appetite enhancer med but I'm worried about it taking time to work or not working at all.
He eats just not a lot. Will eat 1/2 of whatever and say he is full. Here is an example of a day for him:
breakfast - 1/2 bowl of cereal (usually rice krispies)
snack - yogurt and banana
lunch - sandwich (sourdough, ham, cheese,mayo), applesauce, mandarin oranges, vanilla pudding and 100% apple juice of which 1/2 comes back home in lunch box
Dinner-(last night) Pork Roast, brussel sprouts and rice - He loves brussel sprouts. Didn't eat it last night because he slept from 5:30-9:00 but would generally eat 1 slice of roast with ketchup to dip it in (I know yuck), 5 brussel sprouts and a few bites of rice.
Snack - I usually try and get him to drink some kind of smoothie with a scoop of protein powder but most nights he wont drink it but will eat a banana or some applesauce.
 
So sorry Jack isn't feeling well! It's terrible when we are hoping for flu vs it being a flare. Oh the crazy life we lead. I told my hubs last night that it is a shame that my radar is never turned off....I take every little complaint that Ryan has and run through the signs of a flare in my head to see if it fits. It's so hard to relax and enjoy life!

I really hope it isn't mono. I had it in college and it took a long time to get over it. Don't foget that if he has a virus, it may skew his bloodwork. So if it looks like it's a flare, I would check it again in a few weeks to see if it's changing.

Another suggestion is eggs for breakfast. You can add shredded cheese, butter and get some calories in there. Cereal doesn't have many calories. If he is starting a flare, he may be eating some trigger foods. I know the better Ryan feels, the more tempted I am to test the waters with foods. Some foods just never work, flare or not!

I hope he is feeling better soon!
 
We cycle Alex on and off the periactin (cyproheptadine) to increase his appetite and it works great, he's hungrier within the first day or so. I notice no other side effects. It's effectiveness definitely tapers after a month, so we do a holiday and start again. It also helps his nasal allergies, as a bonus. :)
 
Still waiting for GI to call!!! On a positive note Jack decided he was hungry so went to make himself some soup and this is the text I get... I'll clean it but how does this happen?
 

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I don't know what is more shocking.......the explosion of soup or the fact he said he clean it up!:ylol:

God love em!:rosette2:
 
Well farmwife it seems as if they have figured you out.
Thought it would be a better idea to drive instead of trying to type on the phone.
so GI calls and says "I got a message from Jack's Ped along with his weight and I'm concerned" :ywow:
So....SCOPES! Of course he called me after office was closed so they are supposed to call me tomorrow to schedule an appt. so that we can schedule scopes. He feels he needs to see inside because WAIT FOR IT sometimes and I quote "even though all the blood tests come back looking great, there could still be inflammation going on that we just need to take a look inside to see" (I was thinking to myself, you should talk to all my friends on the forum we could have told you that)
Thinks there is inflammation going on that is causing the lack of growth, weight and will need to adjust/look at medication if that is the case. However he said if they come back clean we will look at other reasons why and when I asked about the NG tube he said yes, it is definitely something to look at especially if scopes come back clean.
Still no word on Mono, but I think it is going to come back negative. :thumright:
 
It is great he is on board with the ng tube. I think this will be the next convo for me too. I hope the scope appt is schedulue soon and mono is neg!
 
Well that was a good phonecall. As much as the scopes aren't pleasant, at least you can get a clear picture of what's going on. Hope they get scheduled soon!
 
Sorry JM. I had a feeling that was the way it was going to go. Good news is you will have good solid answers and no more playing around. Especially glad he is behind EEN...had a feeling he would be given the LDN.

Keep us posted!
 
Really like his GI and he is cute to boot :thumleft: Jack went to school today, no fever, still has an awful cough but he ate 1/2 a sandwich last night and an egg this morning but he really wanted to go. New semester started on Tuesday and he has some new classes that he was upset about missing the start of.
GI's office opens in an hour, do you think it would be too much to hope for that they call me right off to schedule appt. Jack is good with having scopes knew he was going to have them later this year so we are just a few months early, he is mentally preparing himself for clean out.
 
What an all around great kid! Kuddos to him for staying on top of his academics and for being so mature about the scopes. I know some adults who could take a lesson from him.

As for too much to ask to get the call right away...I wouldn't think so. I always think I am the most important person on every doctor's staff's mind so why shouldn't you be? Plus I figure they should make all the easy calls first thing before the day gets too busy.
 
Woah, that was awesome quick!!! So glad to hear they got you right in!! Sending easy prep vibes your way!
 
Well this is just the appt before the scopes so hopefully they are as quick I know last time we had an appt. on Thursday and they scheduled scopes for the following Tuesday. Here is hoping for a repeat performance. GI says they have to have an office visit within 30 days prior to scope.
 
Yikes! I need to quit working. I miss too much!

Any word on the mono Jm?

So fab to hear the GI is on the ball and eye candy too boot! Woohoo! :):):)

Sending you loads and loads of love and luck for the appointment and scopes. :goodluck:

And Kudos to your lad. What an absolute champion! :thumleft:

Dusty. xxx
 
Wow, you guys are really awesome and supportive. I just loved to read the way you all supported J through this. You've been together a while, huh?! Glad to be joining you all in this.

J I'll be watching to see what happens. I showed my dd the video of the girl inserting the NG tube today on the second post on the EEN thread, and she said to me twice that she would rather do that than take prednisone. She's 13 and 70 lbs also. Her 8 year old sister weighs more... Actually her 8 yo sister is wearing her handmedowns from less than a year ago... I'm really starting to understand about Crohn's and you all are helping me to see it.

Jack is in my prayers and I just pray he bounces back quick.:rosette2:
 
I don't understand why you have to have an appt to schedule scopes! Just another way to stick it to those pesky insurance cos. I suppose. Do you think they'll do bloods or anything else at this appt. or just make you come in and then set the date for the scopes?
 
He says they are required to have an office visit within 30 days of a scope (not sure who requires it) but at least I know scopes will follow fairly quickly after. No bloods as the last ones looked good. So it will be a weigh in, height check and a chat.
No Mono!! Yay!!!
Cough is still horrendous and fatigue is awful right now went to school the last couple days but was wiped out by the time he got home. He was supposed to participate in his second snowboard race today, I nixed the idea and told him No and he wasn't upset about it so I know he is still not feeling great.
Eczema is back! I'm already working myself up saying if this than we'll do that. I'm afraid what the scopes are going to show either way, Has the inflammation been quietly simmering away all this time even though labs have looked good and he says he feels good. He has grown about in 1" and only managed to maintain about a 3lb gain in the last year.
If there is no inflammation then why isn't he gaining weight and growing.
 
Hugs......
Hope the scope is quick
I know for our Gi appt then scope a few days later when needed.
I agree with not growing = inflammation .
For us it did ... But DS also has normal everything in terms of tests except scopes...
We have seen a massive difference once DS was in remission.
Growing and gaining weight , nail growth is ridiculous right now .
All I attribute to the peptamen jr and remicade.
Anxiously waiting for march follow up to see how much officially he has grown.
I know after seeing the transformation the right drugs and EN do matter.
Risks aside when these kids have the right combo it's hard to remember they have crohn's
ALL The TIME .. Unlike prior to that .

Was there a reason he stopped Imuran ???
Did it stop working or was it an age risk thing??
Dud the Gi give you a layout of if I find this the. I would like to do this thing??
Sorry about the snowboard race. :(
 
We stopped Imuran because of the teenage boy thing. The GI says ask a Dr. he can look at the risks of it and say it really is miniscule and if there is not another option then the benefits for outweigh the risks but looking at it as a parent there is a risk (aren't there with them all) so if there is another option let's explore it. He usually puts them on mtx but we had already tried that and Jack had a bad reaction, he'd read the studies and had a couple of other kids on LDN that were showing good results and based on labs Jack looked like a good candidate to try it.
He is apparently a bottom up approach and likes to keep remicade/humira as one of the last options, I have a feeling that is where we are headed and I'm okay with it, yes potential side effects scare me but continuing on as we are scares me.
One little bug is too much for him. If he was really doing well he should have the body reserves to fight off a virus, right?
Nails= growth that would be nice but he is such a nail biter (drives me nuts) I couldn't tell you if his nail growth is bad. I guess I could look at his toes, at least he doesn't bite those - GROSS :puke_r:
No layout and I'm a planner so that is driving me a little nuts with my head spinning with ifs and thens
 
Jmrogers4 said:
I'm already working myself up saying if this than we'll do that.
Click to expand...

Haha...you are playing my favorite game...Out Guess the Doc!

Why don't you ask him at the appointment where he is leaning if he finds inflammation. Tell him you have to do all your exhaustive mommy research and take it back to the committee for a vote.

Hang in there. Answers are coming soon and with the answers treatment and your boy will be on the up and up!
 
crohnsinct said:
Tell him you have to do all your exhaustive mommy research and take it back to the committee for a vote.
Click to expand...

Little does he know how awesome my committee is. I'm sure we can out guess him.

Mylittlesunshine - he is okay today, going to have a lazy day on the couch, currently trying to get him to eat something. He is excited that camp applications just came out and I got him all signed up. Can't wait to see all his Crohnie buddies this summer.
 
Dexky said:
I don't understand why you have to have an appt to schedule scopes! Just another way to stick it to those pesky insurance cos. I suppose. Do you think they'll do bloods or anything else at this appt. or just make you come in and then set the date for the scopes?
Click to expand...

For procedures in some hospitals they have to have a History and Physical done within 30 days...
 
Cute picture CarolinAlaska. Love the name Jaedyn. I'll have to send you a friend request so you can see the boys, Jack is 2 years older but his brother is the same height but outweighs him by a minimum of 10 lbs. They are asked all the time if they are twins and which one is older.
 
Jmrogers4 said:
Cute picture CarolinAlaska. Love the name Jaedyn. I'll have to send you a friend request so you can see the boys, Jack is 2 years older but his brother is the same height but outweighs him by a minimum of 10 lbs. They are asked all the time if they are twins and which one is older.
Click to expand...

Thanks, J. I didn't have many pics to choose from on this laptop. I like the name too. :) Jaedyn's little sister is 5 years younger and has caught up to her almost in shoe size and has her beat by about 10 lbs in weight I think :(. This creates some tension between them that neither of them can control. Jaedyn hates to give her handmedowns to her 3rd grade sister and see them fit her better (she's 7th grade)... I don't push it anymore. I think having a diagnosis is starting to allieviate some of this tension maybe. I hope so. I'd like to see pics of your boys, and do you have a name?
 
Oh girls! Can I be in your club? O is 13 and younger sister 9 weighs as much and has a bigger foot! Almost as tall also!
 
CarolinAlaska - It's Jacqui and I'm assuming yours is Carol?
CIC aren't you already in the club? Well James has nearly always had bigger feet then his brother we had to get him EEE when he was baby/toddler and we had to order them online as no place around here carried them, I know slip on his shoes to run around outside even though they're too big for me, he is a 9.5 in 6th grade.
It is going to be interesting next year when James joins Jack at the junior high and Jack will be 9th grade and James 7th but at this rate James will be bigger then his big brother
I do have to say I save money on clothes as we just have an adjustable waist put in their jeans and then they can both wear them and t-shirts. We just do laundry and they each just take 1/2.
 
LMAO! Same here! We never know whose drawers or closet anything is in and whoa the cat fights over I wanted to wear that! And O is now telling her younger sister, "You stretched that out and now I can't wear it!" Gotta laugh!
 
crohnsinct said:
LMAO! Same here! We never know whose drawers or closet anything is in and whoa the cat fights over I wanted to wear that! And O is now telling her younger sister, "You stretched that out and now I can't wear it!" Gotta laugh!
Click to expand...

Not too many cat or I guess maybe dog fights here, one t-shirt or jeans is as good as the next pretty much whatever happens to be on top in the drawer. I do remember having those fights with my sister though when she was is 8th grade and I was a junior and had stopped growing, she would always take my clothes after I had already left for school
 
Oh and Jacqui, yes, my name is Carol.

CIC, I'm glad to hear we have this in common too, of course you can join "the club" :).

I was telling Jaedyn the other day (she is just starting puberty and getting breast buds) that she can belong to the IBTC and how it was a joke between me and my sisters that we were in that club until we were married and having babies, then our status changed and we didn't belong any longer... Anyone out there familiar with the IBTC?

CIC, do you have a name?
 
My 16 year old non Crohn's child is 5in short than her 17 year old sister with crohn. The 13 year old is only inch shorten than the 16 year old and has bigger feet that the other two.
 
Haha...IBTC charter member here...Even pregnant I barely had anything. O is doomed! My name is Kim.
 
It's always hard to wait but glad he was able to schedule an apptmt so quickly! Hopefully, the scope will be very soon afterward!

Agree with Crohnsinct, ask GI what his thoughts are if inflammation is found... may help alleviate some of the stress if you have an action plan in the works. :ghug:
 
:ylol::ylol::ylol::ylol::ylol::ylol::ylol::ylol:

I was president of the IBTC!!!!!!!!!!!!!!

:rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof:
 
Alright I wasn't going to say anything but I only wished I were a member of the IBTC club so I didn't have to wear a bra, and I could button my blouses.
Will definitely ask what the plan is if there is no inflammation or what is it if there is? But I still have to wait 71 more hours to ask.....
 
I'm with you Jm! I would happily discard my "over the shoulder boulder holder!" (((sigh)))

Dusty. http://www.smileyvault.com/albums/userpics/12531/bouncing-****s.gif
 
Love it.
I had to look twice since its small on the phone looked like a bouncing leopard ( :eek:pps:)
Too funny

The time will go by quickly
Now type up your notes and questions
 
I had to look twice as well I thought it was a dog at first but then I ended upwith years streaming down my face I was laughing so hard
Well get to work on my questions, I was already looking up different EN formulas
 
Farmwife said:
:yfrown:Your personality no longer shocks me Dusty!

The smiley's on the other hand!:awe:
Click to expand...

Yes, where did that smiley come from!?! Yikes! That smiley definitely can't join the IBTC.:ylol2: I didn't quite get the comment until someone pointed out the smiley! (Yes, I'm slow...)
 
Jmrogers4 said:
I had to look twice as well I thought it was a dog at first but then I ended upwith years streaming down my face I was laughing so hard
Well get to work on my questions, I was already looking up different EN formulas
Click to expand...

I want to see your list of questions. I think tomorrow night we may be talking with the peds GI regarding EEN vs pred.
 
Here is my list of questions can you think of any more I should add?

If there is inflammation what is the next step?
Remicade/Humira? Which one do you recommend and why? Alone or in conjunction with ? (jack had reaction to methotrexate)
Imuran? Again? Didn’t seem to gain a lot of weight with it. Was there still inflammation going on while on it?
Prednisone? Why? Can we do EN? Would this help with weight gain and keeping it on as opposed to dropping weight after pred is finished?
How will we know what we are doing is working (remicade/humira) since all previous labs looked good.

If there is no inflammation present
Why isn’t he gaining weight/growing?
What is our next step? EN? Appetite Enhancer?
Appetite Enhancer – how long before we should expect to see results? Based on current weight do we have the option of time for it to work? What if it doesn’t?
Supplemental EN? How much and how – ng tube since he will not drink them
What kind of results should I see and how quickly?
What is next step for EN? Do we start right away?
 
Jmrogers4 said:
Here is my list of questions can you think of any more I should add?

If there is inflammation what is the next step?
Remicade/Humira? Which one do you recommend and why? Alone or in conjunction with ? (jack had reaction to methotrexate)
Imuran? Again? Didn’t seem to gain a lot of weight with it. Was there still inflammation going on while on it?
Prednisone? Why? Can we do EN? Would this help with weight gain and keeping it on as opposed to dropping weight after pred is finished?
How will we know what we are doing is working (remicade/humira) since all previous labs looked good.

If there is no inflammation present
Why isn’t he gaining weight/growing?
What is our next step? EN? Appetite Enhancer?
Appetite Enhancer – how long before we should expect to see results? Based on current weight do we have the option of time for it to work? What if it doesn’t?
Supplemental EN? How much and how – ng tube since he will not drink them
What kind of results should I see and how quickly?
What is next step for EN? Do we start right away?
Click to expand...

Thanks for posting these. Let us know how it goes! I'm hoping we talk to the doc tomorrow too.
 
As much as I hate it, I'll volunteer my services to be the judge as to who may join your ibtc!
 
Dexky said:
As much as I hate it, I'll volunteer my services to be the judge as to who may join your ibtc!
Click to expand...

Oh what a surprise...NOT!

Dusty. http://i90.photobucket.com/albums/k246/musicnut_2006/emoticons/****s8.gif
 
Is that supposed to be a protester or an endorser^^^? Cause I strongly endorse ****ies!
 
Sorry, I am late. Jacqui, how is Jack doing? It is so hard to keep their weight up...Lately Kasia has been doing great but we went through difficult time too. Ensure and stuff like that, she hated and it made her throw up. I found something different in a German pharmacy which was bearable but not very tasty. My husband used to make her milkshakes with lots of full calorie ice-cream and a spoon of protein powder or something like this with lots of calories - the only thing that was available at our military base commissary. That seemed to help a little. I also brought some herb sirup from Poland that supposed to increase appetite - thought that help a bit too. My friend a doctor told me to give Kasia something sour like pickles (I don't know about American pickles but our Polish ones are very sour :) half an hour before dinner. Something happens with the acid in pickles and stomach and she is supposed to be more hungry. She loves pickles so practised this habit for a while. She is still very thin but seems to get better. I hope Jack gain weight soon. Let us know what the docs said.

Ania
 
Hey Ania,
Glad Kasia is doing well. Jack has been meaning to email her back but first it was finals, then he got sick and just hasn't really been on the computer at all but he wants to know how her snowboarding lessons are going. He just competed in his first snowboard race a couple of weekends ago.
That is funny about the pickles - Jack loves dill pickles! We always have to have pickles in the fridge for him. Haven't noticed him eating more of anything but pickles if he has them though.
Doctor told him to have a milkshake every morning for breakfast, we tried to make them a couple of mornings but he says he can't drink them fast because they are cold and hurt his tummy if he drinks them too fast in the morning. I told him to get up earlier that didn't go over very well.
Anxious for Wednesday morning to get here
 
Jacqui,

KAsia had the same problem with morning shakes. No wonder, I wouldn't want to drink a glass of ice after getting up. She had them for desert in the evening and it took a good hour to drink. I will wait for more and ONLY good news from you!

KAsia will be writing to Jack soon as she finally can actually stand on the snowboard for a bit longer than 10 seconds :). She can do the chair lift which is a great thing after her arms getting longer and longer with the painful tow rope :).
 
Scopes on Tuesday, first thing he says to Jack, you look pale how are you feeling? Thinks small intestine inflammation possible esophagus due to chronic cough thinks he can get far enough into small to see inflammation take biopsies if not pill cam next. Thinks remicade if inflammation present
 

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