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Well, We had one month of labs where Brian's inflammation was normal after combining MTX with Humira. July 10th we saw the GI again and his SED was up a few marks...and CRP went from .07 to 1.1... So we are doing an antibody check for Humira. Last MTX dose he had a rough rash (that didn't itch) on his chest and stomach area. GI is finally thinking of starting night time en feeding with ng tube. I, however, was so surprised that we're going to have to spend 2-3 nights at the hospital where they teach us...we learn signs of complication...and they see if Brian's body will tolerate it and what speed he'll be able to do. I'm scared now. I guess I missed that part on here...if it was mentioned. They talked about learning how to detect 'if ng tube went to his lungs and not his stomach'. I'm scared now. Brian only knows of kids that grew a bunch while on it from here...so he's excited. (He also is hoping he'll not have to do Humira-not so sure that will be the case)
He's not hurting at all!! Just growth issues. Brian wants to be taller soooo bad. We meet with endocrinologist in mid Aug. I saw the article Johnny'smom posted on a different thread about 'catch up growth'. I have time to get that read :)
 
Huge
Sorry about the higher labs.
That stinks
They will teach you on the NG tube
I know it sounds scary but you give shots all the time and you learned that .
This will just be part of your medical training.
You can do it.
Feed rate is different for everyone.
There is a section on tube feeds here as well as on KFA .
I am sure Tess or farmwife will chime in on ng tubes .
Has he tried to drink them or is that too much of an issue ??
How long has he been on humira ?
 
MLP,
He's been drinking some...its just not enough I guess. How many would he have to drink to equal the ng tube at night? Its hard to get him to drink 3. He is so full after them that then he doesn't snack. Its so frustrating!!
Thanks for your advice...your right in that we give shots!! Hadn't thought of it that way. And he's been on Humira since Jan 2011. Had normal labs his first year 1/2...just not much growth. It's our GI's main concern. Hope the endocrinologist gives us some insight
 
Is he drinking a polymeric ( boost / ensure)
Or a semi/elemental - peptamen / elecare/neocate?
That may be the difference .
DS drinks three a day - until he gained a lot then we lowered down.
We replaced food with formula since the body works less it takes less formula and then you get growth .
At age 7 and 22kg he drank 1750 calories.
To supplement he was drinking 750 extra calories.
He is now at the 67% for weight and 50% for height.
He was as low as 25% and dropping for both a little over a year ago .
Will you do elemental in the tube?
We had him drink two for breakfast then a hour later cereal .
Then one at right after school then one to hours later dinner then one at bed when we really wanted him to gain.
 
You can do it Kathy!! I hope this is the growth booster you guys are looking for and it can settle his infl markers at the same time! On EJ's latest scopes, the top of his colon was considered "chronic yet not acutely inflamed" while his inf markers have been good for at least the last six months maybe more if I go look. Has Brian done a fecal cal test?
 
MLP, We're doing Pediasure 1.5 cal. We get it thru prescription from Apria. Did your son have trouble sleeping with ng tube in? Also was he 7 when you did that?

Mark, I've asked and asked...Our gi won't do Fecal cal. Their whole office says they don't do them. (There's a few others on here that go to the clinic at Children's Mercy and they've been told same thing). I think Brian has never really been 'in remission'. I think he's been on the bubble of it. His biopsies showed chronic but looked good to the doc's eye at his last colonoscopy too. Only place inflamed was his rectum area and a few inches of his transverse colon.

I've just had it with doctors lately. Well...ours!!
 
HE has never done an ng tube sine he has able to drink it all - with lots and lots of tears in the beginning.
He was on kids boost at first ( that caused tears too)but kept losing weight any time we dropped a shake from 3 to 2 a day.
later he couldn't keep weight on with it at all ( pre dx)


WE switched to EEN plus 6-mp later at age 7 right after he was dx and failed pentasa.
He drank 7 shakes of Peptamin jr a day. HE cried most of the first week.
I plugged his nose and he sipped through a straw very slowly. First shake took almost two hours to drink.
two years later he can chug one in less than 5 minutes if needed but prefers the straw and very cold.
He says the taste is still bad but he needed the broken down formula of peptamin in order to make any difference weight and growth wise.

WE did tell him if he could not drink enough the tube would go in.
not a punishment but a doc order a med (formula in this case) and it has to get in you one way or another.

we also get his formula from the Durable medical equipment company by the case once a month since the doc prescribed it.
 
has he ever had a second opinion?
even just a reread on his biopsy slides or history?
WE have done that twice
well worth it just to give our current GI a second set of eyes
it helped us a lot.
 
has he ever had a second opinion?
even just a reread on his biopsy slides or history?
WE have done that twice
well worth it just to give our current GI a second set of eyes
it helped us a lot.

Visit last week we were told we could go to CHOPS (Childrens Hospital of Philadelphia). We meet with GI again on the 23rd to discuss everything.
 
If you go to chop make sure you see a Gi attending not just a fellow .
But since your traveling any way
You may want to try Boston children
Or Cincy .
I would call all three and ask about their second opinion programs
They have coordinators just for that .
 
Kathy, sorry I'm a bit late here...

Stephen has also done the EN (exclusive and supplemental) through NG tube overnight. He had little to no trouble learning how to insert the tube. He was inpatient at the time, so a nurse guided him through it the first three or so times and then he did it on his own. It literally takes seconds to insert (and even easier to remove in the morning).

If Brian will do it, I really think it's probably easier if he does it himself as he can feel when to push and when to slow down??

It sounds complicated but, really it's not. Dusty can confirm but I think checking whether it's gone into the lungs rather than stomach is more a concern with people who cannot communicate, such as an infant, etc. When Brian inserts the tube, he will be drinking water at the same time, this pretty much ensures the tube will go in the right direction.

How we did it... Stephen inserted the tube, not me. While he was inserting, I held a bottle of water with a straw in his mouth and he would gradually nudge the tube in with each swallow. The toughest part is getting past the gag reflex - once the tube is beyond this, it's easier to push in (with or without the water). To get over the gag reflex, I told Stephen to visualize how big a piece of food he normally swallows and how small the tube is in comparison... Think it helped???

Make sure he gets a small tube - Stephen's is 6-Fr (this is infant/child-sized but Stephen is almost 6' 175 lbs - so if it works for him, it'll work for Brian).

Also, some people have an easier time with one nostril over the other... Stephen ALWAYS uses the left side (for over two years - no problem always using the same side).

Rate of speed - as Stephen was already inpatient, they started him at, I think, 20 ml/hr and worked him up fairly quickly. We started on Saturday, by discharge Tuesday, Stephen was at 200 ml/hr. When on exclusive, he did 2000 ml/night (so 10 hours, if at 200ml/hr). He was told he could bump up the speed gradually, up to max of 300ml/hr.

When he was on exclusive, the 10 hours was restricting when he would have hockey at night (sometimes not home till midnight) but had school in the morning! Stephen did increase the rate to 250ml/hr (helped some) and I let him skip first period sometimes to finish it if he'd had a game the night before... As Brian is only doing supplemental, I don't think he'll be drinking as much, so less time will be needed.

Stephen had 2000ml/night, 3000 cal when exclusive; dropped to half the amount, only 5 nights per week when used as a supplement.

Stephen used Tolerex as his formula... not drinkable AT ALL Ugghh!!!

Bothersome?? Stephen found the sensation of the tube bothersome (not painful) for the first couple of days and then just got used to it. The noise of the pump bothered him sometimes - I moved the pump into his drawer (leaving space for the tubes) and covered it with a towel... again, he eventually got used to it.

In our experience, the NG tube really was very easy... the 'not eating' for six weeks was the MUCH BIGGER challenge! Within a week, the tube was nothing.

Let me know if you have any other questions.

Good luck!!!!
 
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Hi, my son had the NG tube for 8 weeks so he didn't take it in and out. It wasn't that fun putting it in and it annoyed him for a couple of days but after that it was as if it wasn't even there. Good luck!
 
Hey Kathy,

As Tess has said, when it comes to checking if an NG is correctly placed it is easily done and the correct placing of an NG tube is normally of greater concern in those people that are unconscious or have a depressed or absent gag reflex. It is the presence of a gag reflex that in almost all cases will prevent a tube going into the lungs and as Tess has said, once you past the nose plenty of swallowing when inserting makes for a quicker and surer placement.

I honestly don't think you have anything to be concerned about when it comes to placement Kathy. :)

Dusty. xxx
 
I've been gone for a bit. My daughter got married last Saturday the 20th!! Our appt with Brian's GI is Wed of this week. We had to wait anyways (as she is on vacation again last week!!:))
 
Are you still going into the hospital to learn the ng routine? Your daughter made a beautiful bride Kathy!!
 
Tess, THANK YOU SO MUCH for your detailed post!!! It has set my mind at ease. And knowing that docs do supplemental or exclusive is helpful. Did Stephen have to still take other meds when it is supplemental. I'm thinking the answer to that is: yes.

Mark, we're getting some questions answered tomorrow. My hubby went to appt last time by himself July 10th(as I was in training for a new job) she gave lots of ideas and said to talk to me. Then she whisked off to another country on vacation the next day and was gone until today. The ibd cooridinator said that usually the kids don't eat during the day if they do EN at night and Jay thought she said it'd supplement, but she acted like he'd quit Humira if there are antibodies. Talked breifly of Cimzia...but months ago she acted like that wasn't a good one. Ibd coordinator said their noses get really sore going in and out. Also the whole antibody test with Humira got put on hold because she didn't sign the document before she left! :( So that's a few of our questions, we have many. I want to discuss mtx since his numbers are headed slowly back up...maybe that didn't do anything but put him in a new risk group. I'd like to discuss what EJ is on. Uceris. Are you guys still doing good with that?

I already had issues with her not working on Mondays or Fridays...and now she's 6 mos pregnant. So I want to discuss who we can see that's there full time :ybatty: Frustrating!!
 
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Hi Kathy,

The only med Stephen was on was nexium (antacid). It controlled his crohns from May 2011 until he began remicade in Feb. 2013. But, while it 'controlled', it didn't eliminate all the inflammation. It did eliminate inflammation in his duodenum and colon but there continued to be inflammation in this TI. When we switched to the adult GI (Fall 2012), he felt strongly that Stephen needed to add remicade or the ongoing inflammation would eventually cause problems.

So, I kept S on the same schedule of EN between February and April/May and then gradually cut down on the amount (I didn't think it would be a good idea to suddenly eliminate 1500 cal/day!). He finished doing the EN at the end of June. Now I'm trying to get him into a habit of drinking 1-2 Boost shakes daily...

:)

PS... re the antacid... S found that when he ingested the formula overnight (through NG) he would feel some heartburn, hence the antacid. This was probably due to the fact that the tube left the 'flap' between his stomach and esophagus slightly open allowing acid to escape (especially as he was laying down in bed).
 
Kathy,

My son (9) started EN through NG tube nightly in April. He has chronic inflammation and is tiny..and i've been trying to avoid MTX and biologics.. so suggested EEN but our doc said they don't like to do EEN, but rather EN. So son inserted his NG tube nightly, got 1500 cals/night over 10 hours and took it out in the morning.. and can eat whatever he wants during the day. We spent about 23 hours in the hospital learning how to insert, etc.. and checking that it's in the right spot is easy once you do it a few times. You aspirate and check the pH.. once you do the routine a few times, it becomes second nature.
Son gained 5 lbs in the first 6 weeks!! more than he gained in the last 4 years! Right now, he's away at sleepaway camp so he's drinking his peptamen jr (mixed with hershey's syrup adn very cold) - best I could get him to do is 1/day but I'll take it!

My son would happily chat with yours once he gets home mid-august!
 
Tess,I'm not happy to hear about the acid reflux part. I didn't even think about that. My dad has esophageal cancer 6 years ago. He always had acid reflux at a middle aged guy. Does the ng tube damage that flap? Is your son still experience acid reflux or heart burn?
Also, what was your son's 'ongoing inflammation numbers"? Brian's keeps fluctuating but SED has stayed around 25-27 the past 6 mos or so.
 
EJ is still on uceris Kathy but we have backed down to every other day. His face is getting more puffy on it than it ever did on pred. He also has the excess energy and appetite like pred too. It really hasn't been too bad on his sleep habits though and he does feel great!:) It's only designed to work in the large intestine and EJ was scoped just prior to starting it.

Claire has been on it for several months now w/o the pred-like side effects. From everything I've heard, she's doing great too!!
 
What was the result of the antibody testing? Are they sure there isn't inflammation interfering with his growth? Well, even if it is then EEN will hopefully knock that out and get him on his way as well as help him grow. Will he be trying exclusive or just supplemental? Have you seen the endocrinologist yet? You know, in between planning a wedding and all;)
 
Just wanted to repost that article for you on catch-up growth so it would be easy for you to access.

http://edrv.endojournals.org/content/18/5/646.full.pdf

Our endocrinologist felt that Johnny stopped growing simply because his weight was so low. His BMI was about 15 at the time. She said mild to moderate crohn's should not inhibit growth as long as they are getting the nutrients. NG tube sounds like it should help tremendously.

Keeping my fingers, toes and everything else crossed that you see some growth soon!!
 
What was the result of the antibody testing? Are they sure there isn't inflammation interfering with his growth? Well, even if it is then EEN will hopefully knock that out and get him on his way as well as help him grow. Will he be trying exclusive or just supplemental? Have you seen the endocrinologist yet? You know, in between planning a wedding and all;)

We had to wait for gi vacationing (she didn't sign orders before she left on July 11) She got back to office Tues July 23. We're expected to draw for the test this thurs. And she does think the inflammation is interfering with his growth. I wanted to see an endocrinologist and I got that scheduled with help from the nurse in June for an Aug 12 th appt. (Can you tell I'm frustrated with Brian's 'willy nilly' care?
 
^^^ Hmm that's interesting and good to know!

Our GI feels any inflammation "could" interfere with growth and goes so far as to not just be happy with weight gain...he wants vertical as well. I laughed at him at our last appointment because now she is at what they thought her full height would be. I asked him how he was going to gauge now and he said weight...never happy are they?
 
Kathy,

Stephen only experienced the acid reflux on the nights he did EN (thru NG tube). As his supplemental routine was five nights per week (Sun to Thurs), he would take nexium those nights only. He didn't have any acid reflux on the Friday or Saturday nights when he didn't have EN (or nexium).

Once in a while, he'd forget to take nexium on his EN nights and it was hit and miss - some nights he'd end up with heartburn, some nights not...

Since he's stopped overnight EN (with tube) completely, he has not had any heartburn. I've never heard that the tube can damage the flap and it hasn't seemed to cause any issue for Stephen as he rarely has heartburn at any other time (ie weekend nights or since stopping completely)???

His CRP and ESR numbers were:

At dx - CRP 136, ESR 63
After one week of IV flagyl only - CRP 4, ESR 43
After six weeks of EEN - CRP 7, ESR 9
Between July 2011 to Jan. 2013 (on supplemental EN and nexium only) - CRP fluctuated between 6.5 and 28, ESR between 4 and 35 (no trend, just up and down...)

Since starting remicade - CRP 0.2, ESR 5
 
Update: We went in for our 'clarification' visit. In the 14 days Brian has been drinking the 1.5 cal pediasure (3 a day) he gained 1lb 4 oz.:) We go in to the clinic in the morning and they admit us to learn the ng tube insertion. Possibly stay one night...maybe 2. The dietician is planning on 3 cans of the pediasure 1.5 cal at night. Then he removes the tube in the morning and drinks 1 or 2 cans during the day. (amount of that not decided yet). I was kinda surprised that we give him the same stuff he drinks, but thru a tube. And 3 cans is 1150 calories. They said that's half of his daily caloric intake. Then they will weigh him in a week. He'll do it for 7 days while on summer break maybe less days during school...and duration is ongoing...6 mos at the least. We also did blood draw for Humira antibodies. Dr talked breifly of Cimzia if there is antibodies. She said we'd definitely have to stop if ab present. She said Humira has a little tiny mouse protein. I questioned that. I thought it had none...she said Cimzia is only one with none...???
 
Why not all of it at night? Especially if making him drink one or two during the day will be troublesome at all?? While I've never had the shakes, I do think they are filling, so if he's drinking them during the day, won't that just lessen his appetite for other food... sort of defeating the purpose??

But, having said that, when Stephen had the 1000 ml per night (supplemental amount), he did usually skip breakfast because he said he was full when he woke. What I found was he ended up having a 'third' meal later at night, ie 9pm or later. (But, as Stephen's older, his schedule is different from Brian - S doesn't go to bed until midnight or so.)
 
Hugs
Kathy I will double check but everything I read -
Humira= no murine( mouse protein) which is why the risk of anaphylaxis is so much lower with it.
So when is your second opinion scheduled.
I pulling out my hair for you
 
Tess, I asked that: why not all at night. I think the plan is to start with this. Weigh him in a week and then make changes if needed and weigh in another week. Etc. Dietician kept saying, "I know he likes to eat". But he eats slow and is often too busy playing to eat. We have to track him down! I'll bet we end up with more at night.
 
Yeah, if Brian doesn't have a hard time with the tube, I wouldn't be surprised if he ends up preferring the tube rather than the shakes. I know I asked S once or twice if he'd prefer drinking shakes during the day and his response was 'no, through the tube it's all done when I wake up.'

When I tried to 'strongly' encourage him to drink coconut water (supposed to be anti-inflammatory, etc.), he didn't like it (a picky eater always! :ywow:) and wouldn't drink it but... suggested I give it to him through his tube while he was sleeping! :facepalm:

One more bonus if Brian is good with the tube... contrast liquids before tests! S took his tube and a bag with him for his first MRE so we wouldn't have to 'drink' the contrast if he didn't like it. :)
 
O.K. City girl is also getting frustrated for you!

Has Exclusive Enteral Nutrition been discussed at all? If the doc is thinking there may still be inflammation AND there are no antibodies the EEN could help knock down the last bit of inflammation. Good luck with the tube insertion lessons etc. O was petrified of that tube and that was all the motivation she needed to drink it all. Have you seen that video Tesscorm posted a while back. That girl is amazing and explains everything so well.
 
As far as I know there is no mouse protein in Humira.

The great joke on the forum some time ago for those moving from Remicade to Humira was they would no longer have to worry about going outside and attracting all the stray cats in the area! :lol:

Dusty. xxx
 
She said we'd definitely have to stop if ab present.

That hasn't been our experience. For 3 weeks we preloaded with 20mg pred and then started the uceris. Knock on wood but no more rash like symptoms since. Maybe it's just a matter of time, but we're not ready to jump the Humira ship just yet!!

I hope the tube goes well Kathy and the results are both healing and growth!!
 
Brian's never had a rash with Humira. Only once or twice a slight red at injection but was gone by next day. They are more concerned its losing its effectiveness. But another doc thinks he's just malnourished and his body can't function right. I hope he's right.

NG tube went PERFECTLY!!! Brian was so tough. Threw up first time but kept with it. He was so patient and not scared. He was determined to have this be an option. A few hours later they had him take it out himself. Then we sat around a hospital room playing cards and watching tv etc. At 9pm he inserted it again completely all by himself. All the way from cutting the tape to removing guide wire to hooking it to machine!!! No vomiting this time. As it hit his gag reflex he took a swig of water (my only job...hold the cup) and he quickened his pace. Then he himself inserted a syringe and pulled back some stomach content to know placement was correct. Feed started and other than the disturbances from the hospital floor, he slept great. After being awake 45 min. He removed it and ordered breakfast :) I couldn't be happier and more proud. He was a celebrity to the nurses and the GI clinic. The on call dr (Who I like better than the one we have :) ;)) wants him to video tape himself inserting it so he can use it in the GI clinic to help kids that might be scared. Brian had previously said, "I'm going to kick that tubes butt!" And he did. Now let the GROWTH begin!!!!!!!!!! PLEASE!!!!!!!!!!!

As for the acid reflux...our doc wanted to wait and see...Brian felt some but not much. Read on my mtx pamplet that proton inhibitors are recommended they be avoided. We're waiting for a call about this. Since our GI thinks there is 'mouse protein' in Humira...I hope its someone else calling!!! Oh yea...she's off on Friday and Mondays ;)- Sorry I'm so sarcastic. Well...not really sorry :)
THANKS EVERYONE FOR YOUR SUPPORT AND ADVICE! WHAT WOULD I DO WITHOUT YOU ALL!!!
 
That's great news!!! So glad it went well! What a great kid!

Just a couple of 'tips'... if the tube gets in his way (ie flaps around), I used to pin the tube to S's t-shirt (around shoulder area) with a small hair clip - helped keep it in position.

No red freezies, popsicles, gatorade before extracting stomach fluid! :eek: :lol:

If Brian can do without the antacid, I'd avoid it too. It can have an impact on calcium and can have a rebound effect (in that once you stop using it, you have more acid). The 'rebound' effect hasn't seemed to affect S. But, nutritionist recommended calcium supplement while using Nexium.

Good luck!!!
 
WHAT A ROCK STAR! :headbang:

Tell him we are all so very proud of him. I really hope this is just what he needs.

Now on PPI's... I never heard that and my daughter is on Mtx:eek2: I had heard all the calcium stuff and I am really shocked our doc still has O on it still (17 months and counting) Especially since she never had issues. Started it because he saw stomach inflammation, continued because of prednisone, then because of EEN, then just dropped dose. Think I will email him now and ask if we could stop it. It's been two weeks since we saw him...he must be missing us:ylol2:
 
A pharmacist once told us that taking PPI would increase the side effects of MTX. If your daughter isn't bothered by MTX then I guess it wouldn't really apply to you?
For what it's worth, my daughter skips her dose of Prevacid the night before MTX and the morning after, which is what our pharmacist recommended (she takes Zantac instead). She hasn't had problems with MTX since she started doing this.
 
Thanks Maya..that does help. O is super bad about remembering to take her meds and Prevacid is the worse. Maybe that explains why she is having such an easy time with the Mtx. I will now "allow" her to miss on those days or rather "allow" me to not be a nagging PITA on those days and save her the lecture. I will come out looking like the nice guy...our little secret. Oh darn! Just realized that will only reinforce it is O.K. to miss meds. Gotta come clean and handle on the up and up...Drats!
 
We heard from our GI office. They prescribed Zantac. But for info, they said that in small oral dose of mtx the 'interference' of a proton inhibitor doesn't really come into play. They said it relates to people on higher doses.(from injection) (This came from a more experienced doc in the clinic, fyi)
 
Brian's Mom - Do you know what would be a high dose? My daughter was on 25mg (injected), does that count or would "high" be the kind of doses used in chemotherapy?
Just wondering whether I need to keep worrying about her PPI!
 
That's amazing Kathy!! It's nice to know he can handle it that well. Should you ever need to consider total EN, it'll be a snap:)
 
Brian's Mom - Do you know what would be a high dose? My daughter was on 25mg (injected), does that count or would "high" be the kind of doses used in chemotherapy?
Just wondering whether I need to keep worrying about her PPI!

They talked to my husband. He said they told him Brian's oral is low dose. They also did say when the mtx is injection and all by itself its a higher dose. Didn't give dosage example. Sorry to not be much help! Maybe just ask your doc next time.
 
Last night was not as good of a rock star performance.;) A few tears because he decided to look in the mirror while inserting. It looked a little like he was tilting his head back some- like he was trying to look up his nostril. I think he poked that sensitive part in your nose (instead of making the bend) Once we told him to stop looking in mirror it went right it in. whew!! Its obviously more of a 'feel' procedure. I think I found out he's a 'video star' in front of pretty nurses! :) :) Well, we have tonight...and the next, and the next! I do think he's a trooper and his determination is a plus. "I've got this" he said after.
 
Totally still a rock star! :headbang: More so now because he had a little difficulty, drama and still came through like a champ! What an awesome job. When do you get to go home?
 
Totally agree with crohnsinct! You must be proud of him! :D So glad last night didn't put him off and he's still determined to make it work. It will get easier! Stephen had a few incidences when he'd have to start over, etc. but it really didn't take too long nor too many of the difficult incidences. Remember, as well, that some find one side is easier than the other - encourage him to try the other side and see if that helps. :ghug:
 
Thanks for all your support! Sometimes its just hard to sit and watch...you guys all know.

Crohnsinct, last night was our first night home. We only had to stay one night.

Tess, You're so right about favoring a side. He used his left side at the hospital and insisted on using it last night. He's sorta like that on other things...like labs. Even tho I suggest changing arms, he uses his right. Has had success and it gives him comfort. He's going to have to switch sides on his nose for sure. Also for the tape on his skin. How'd you handle that. Not breaking down the skin? Hasn't happened but I'm thinking it might.
 
He must fair make your heart sing Kathy! :wub: He does mine! :ybiggrin:

Dusty. xxx
 
Over the two years, the tape never caused an issue for Stephen (brand of tape we used was Hypafix). He only used a small piece (not like what I've seen in pictures here or on youtube), the size of tape he'd cut was about 1" x .75" . Even with this small a piece of tape, he never had a problem with the tube coming loose at night. I'm sure they've shown you but he would hook the ng tube up over his ear and then it would drop down in front of his shoulder. It was at this point that I would clip it to his t-shirt. We never had a problem with the ng tube coming loose.

What did happen once or twice was the ng tube coming loose from the bag's tube... BIG mess as the pump kept pumping... onto the bed! :eek: But, over two years, it did only happen once or twice. However, if Brian moves around a lot at night, might be worth getting a plastic mattress cover...??? :)
 
Tess, we were prescribed Zantac for heartburn. You mentioned your son took Nexium the nights he did the EN. Does that mean he took it before bed? Our script says 30 min before breakfast...but Brian has felt a little burn in the middle of night. It doesn't take long to get thru 3 cans of Pediasure. They had us set it at 90-I think we may slow it down. He's been having to get up and use the bathroom now around 1am. That's when he's noticed a burn in his chest. Not too bad...he goes right back to sleep. I don't want to have acid in his esophagus tho
 
Stephen took the nexium right before bed. We never received any instruction as to when to take it...

To avoid him needing to get up at night, you could also try starting it later... ie, I assume he goes to bed before you... have him insert the tube, connect to bag but don't start pump. When you go to bed, start the pump at that time. And, if you adjust the rate, you can adjust it so that it's ending just a bit before he's getting up in the morning.
 
How long does it take to get through the 3 cans? Just a thought but if Brian doesn't mind doing it while he's still awake, ie an hour or so before bed, you could do it while he's watching tv or playing computer games. This might minimize the heartburn and needing to get up at night.

When S did EEN, it took 8-10 hours so he would have to start it at about 9pm, well before he'd go to bed. The pump was hooked up to a stand with wheels so he was able to move around. However, he didn't like it... it was still a hassle to be hooked up to the stand and have to move it around everytime he wanted to go somewhere....

but, just an option...
 
My son's experience with inserting NG tube was a lot like yours! Total rock star. He gained 5 lbs in the first 6 weeks, doing it (with peptamen jr) at night and eating what he wants during the day. He had to take a week off when traveling and that really set him back. Once he got home, he didn't want to do it anymore.. lots of tears, etc.

He's now away at summer camp and is just doing a "maintenance" shake - 1x/day, in the morning. I have them add hershey's syrup, keep the formula super-cold and he just drinks it down. Nurses said he's doing it great. Pictures I see of him look amazing so hopefully it's keeping his inflammation doing. He comes home in 2 weeks, and we see our gastro 2 weeks after that, for bloodwork and update....i'm going to try and get him back on NG tube regularly as he felt better, grew and I didn't have to nag so much about eating!
 
Grace's pump is programmable. We also had Grace's pump set at 30-50ml per hour for awhile.
She also would get up at night and the slower amount help stop the last night bathroom trips......well most of the time.:hug:
 
In the hospital they were adjusting it to see if he could tolerate it. The two nights we've done it at home my husband changed the rate during the middle of the night. :( I told him last night...'let it go so we can see how long it takes on one rate'...but no, he changed the rate again! Hopefully one of these nights he'll leave the pump alone and we can get an idea of the length of time it takes.

Tess, I like your ideas! Never thought about hooking him up, saying goodnight and then turning it on later. Also the idea of doing it while he's awake.

LJS, What amount of Peptamen did you do at night?
 
We did 1500 cal/1000 ml of peptamen jr 1.5. Although honestly, I play around with it based on how he's feeling.. if he's not feeling great, I lower it to 750 ml, etc...

Lin
 
Is he just trying to get it finished faster? My wife has no trouble "reasoning" with me!! We discuss everything and then we do it her way! It's just easier that way:)
 
Funny Mark!
It was the weekend and he was trying to sleep in!! So it didn't beep too early. Instead he was sleeping restless because of worrying about it and he would change it around 4 am from 80 or 70 to like 30! I'm running 100 ml of water thru it 3 times today; on 60/70/80 and then I thought I could times it by the bigger amt. Am I thinking this right cause each rate is only a few minutes apart.
 
Do you just mean how much is pumped at certain rates?

If you are doing 3 cans at 250 ml each, 750 ml total

at 60 ml/hr = 12.5 hours (750ml / 60-speed)
at 70 ml/hr = 10.7 hours (750 / 70)

If you want to start it at 11pm and have it finish at 9am (10 hours), run it at 75ml/hr (750ml / 10 hr).

Is that what you were asking?
 
Wow Tess I never realized just how long it took to pump it in.
So glad DS just drank his otherwise he would be on the pump 10.5 hrs every night
 
I guess for younger kids, you need to run it more slowly. Stephen ran his at 250 ml/hr and even at 300 when he was really rushed (but, I think he found 300 too high because he only did it a few times). So, when exclusive, it did take a while because he had 2000 ml per night (8 hours at 250/hr), but his supplemental/maintenance amount was only 1000 ml, so at 250/hr, only 4 hours.

I imagine Brian could learn to shut his off himself (Kathy, this way your husband wouldn't have to worry about the beeping). It got to the point that Stephen didn't even wake up... he'd hear the beep, reach over, turn it off and go right back to sleep. Problem with this was that if there was a 'flow error' half way through, he would just shut it off without realizing it wasn't done.
 
Brian was 68.2... and one week in of supplemental EN he's 69.6! :) He's doing fine with inserting the tube. He has zero trouble sleeping with it in. I'm so glad. Such good advice I got here. Thanks again! :)
 

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