Bunch of questions

[momoftwinboys]

Home with my son today. Stomach not feeling good, don't know if a bug or crohns related. He has not really presented with stomach issues before

I have questions about his treatment and was hoping to get some advice.

1 He has never done a stool sample. Is that standard practice? I asked the doctors to do that before the scopes but they said with inflamation markers and symptoms wanted to go straight to scopes. They could test for things like guardia while they did that. Sounds like alot of folks do have stool samples done even after diagnosis. Should I expect they should test them?

2 He goes to a gastro ped clinic at a children's hospital in the US. His doctor is a liver specialist, who we saw first when referred to gi clinic since he had a cancellation and available next day. Should I request an IBD specialist? All the GI clinic doctors see IBD but do you think someone specializing in IBD would be more in tune, especially since IBD is so complicated in treatment and presentation.

3 He is on azathioprine. Started in Oct 2011. They are testing blood every 3 months after the initial 2 months. Seems rather far apart. What do you think?

4 With the EN, this may be a stupid question...the tube goes up the nose direct to the stomach..how does the formula/pump work? How big are they? Are they attached to the person or the bed?

Thanks for the help.

 

[kimmidwife]

Hi A few answers for your questions:

Stool Samples: My daughter has had to do them every time she has been in the hospital with a bad flare but otherwise no she has not.

IBD vs Liver Specialist: Our doctors do both. I think as long as he is very familiar with IBD you can stick with him otherwise I would try to see the IBD specialist.

Aza and blood work. My daughter was never on Aza she was on imuran for a very short time due to having an allergic reaction. I know our doctor had said she would get monthly blood work because of its possible affects on the liver.

EN: The tube goes down the nose into the stomach. Tube sizes vary according to age and size of person. The pumps I have seen are attached to a pole next to the bed. I think they have portable ones as well. It is not attached to the person but can be carried around.

Hope that helps!

 

[Twiggy930]

Hi Momoftwinboys,

My son is also on azathioprine. We were instructed to get blood tests every 12 days as we ramped up the dosage (25 mg to 50 mg to 75mg) and then once we were on the full dose he gets the blood test every month for 3 months then every 3 months after that.

We just started EN yesterday. The tube goes up the nose into the stomach. Our pump is attached to an IV pole that the bag of formula hangs on. The pump can be plugged in or has a battery that you can charge. My son had NO trouble inserting the tube and thinks it is super cool. So far it has been surprisingly easy:ywow:

 

[Tesscorm]

Hi,

1. Stool samples - Stephen has only had them done when testing before and at diagnosis (in May). Hasn't had it done since.

2. I would see how it goes... you're bound to pick up lots of info here, if you find that when you discuss certain issues, treatments, strategies, etc. he doesn't seem to be as familiar or proactive with them as you would like then, in that case, perhaps you could consider a switch.

3. No experience with Aza.

4. As Kim and Twiggy explained above. Pump is a bit smaller than a toaster and is hooked up to an IV stand. Stand is mobile (on wheels) and pump can be removed and carried with you (Stephen never did this but have read of others who put it in a knapsack, but it is a bit heavy).

 

[momoftwinboys]

Thanks for the responses. My boys share a room and sleep in bunk bed. Is the pump loud? Would it disturb their sleep at all?

 

[S mom]

Hi there... when my son did EN, he left the tube in as he had no interest at all in learning to insert every day (freaked him out!). It was taped to his cheek and he just disconnected it from the pump tubing in the morning, flushed it with some sterile water and then closed it off and tucked it down his shirt for the day. At the beginning, when he was doing the feedings all day (before he was able to ramp up the speed of the pump to get the formula in faster), he did put it in a backpack (it came with the pump) and went mobile when he needed. The pump does have a "grinding" noise to it and a screen that was lit up while it ran - my son got used to it but I have heard of others who have wrapped the pump in a towel or tucked it in a drawer at night (I always was concerned about hearing the alarm if it went off - sometimes the tubing gets crimped as they sleep and the flow stops, an alarm will go off and you have to go in and check the tube or flush the lines if they are clogged. It happened a handful of times to us over the 12 weeks he was on EN).

We have no experience with aza, but my son's on methotrexate... we do bloodwork monthly - I'm expecting that if his bloodwork remains good for the next few months, then they will back off to every 3 months.

As far as stool samples go, he did a bunch before the diagnosis to rule things out but then not for a while. He just did another one recently as he was continuing to have some diarrhea and the GI decided to play it safe and rule out c. diff. and parasites etc. again... just to be sure.

 

[Tesscorm]

The sound did annoy Stephen for a the first week or two. I unhooked the pump from the stand, put it in his night table drawer and covered it with a towel. It muffled the sound quite a bit and after a while, he got used to it. It is a rhythmic sound, actually something that will probably put you to sleep once you get used to it.

But, it isn't extremely loud! Stephen often has friends stay over and no one seems to have a real problem with it (and I've always offered the spare room if they find it is bothersome...)

 

[Tesscorm]

Yes, also to all S mom said... towel must allow for flow of formula, no sharp bends in tube, etc.

 

[Twiggy930]

The sound was slightly annoying as was the screen that was lit up. My son doesn't mind the light at all but the sound was a bit irritating. Our pump makes a sort of grinding noise at regular intervals. I didn't think of muffling it was a towel. That is a good idea, will try that tonight. I really think it is a sound that is totally possible to get used to, and I say this as someone who CAN'T STAND noise when I sleep.

My son some how managed to pull the tube out of his nose in his sleep last night. This resulted in the formula slowly being pumped into his bed for who knows how long! It made a bit of a mess that required attention in the middle of the night, not ideal. Tonight I am going to try taping it to his nostril a bit to make it less easy to pull it out.

 

[Tesscorm]

That's happened to Stephen one or twice. It is messy!!! Uggh! Stephen clips the tube to his t-shirt using a small hair clip (so, up over ear, down to shirt and clipped.) I believe that Julie said Violet used a second piece of tape on her neck.

 

[Tesscorm]

One more thing... Stephen didn't need it but, apparently, you can get an 'extension' for the tube if you're finding that it is restrictive during sleep (or is being pulled out often).

 

[S mom]

We had "Tegaderm-film" to secure it to our son's cheek - it's a clear plastic patch (our home care nurses provided it at first) that's about 3" by 2" and it held the tube fairly firmly in place. We did have the extension tubing to give him some slack at night - he must "thrash" a lot in the night cause I did have a couple of times where he managed to disconnect the tubing from the pump tube and he woke up in a pool of Peptamin... lovely... lots of fun changing sticky bedsheets in the middle of the night:wink:

 

[momoftwinboys]

Sounds like not only would I need to convince H, I will need his brother's buy in as well. This will be a big hill to climb

 

[Tesscorm]

I don't remember if Stephen did this or not but I had suggested he set his alarm clock to play music for a set time while falling asleep (automatic shut off) so that it would eliminate the noise from the pump. But, regardless, it really did take less than two weeks for him to be accustomed to it and now it's gone to the other extreme!... He's had a couple of flow errors (crimp in tube) when the formula is only a 1/4 done, rolls over and just turns it off without waking. Ends up not getting his feed and that night has to count as one of his 'off' nights!

 

[Twiggy930]

It really wasn't that bad even with the overnight spill. My daughter (9 years old) was so taken with the whole thing that she insisted on sharing a room with her brother last night. Maybe we are just weird and oddly excited about it all... Quite possible.

We had the tube taped to my son's cheek and put it up over the ear and then taped it to his neck and also his shirt. Somehow he managed to pull it right out at his nostril!

 

[Tesscorm]

Lol

 

[imaboveitall]

Hey, momoftwins!

V's doc does a complete stool workup at every follow up, which is every six months. Ova/parasites, cultures, and H. pylori, and of course his favorite, lactoferrin (currently doing that one every two weeks to assess Humira response).

She didn't go on it but when discussing using 6-mp (form of aza/Imuran) he said he'd do labs for liver function AND therapeutic level of drug every three mos.

Some pumps are noisier than others. The one V used in hosp was loud. The one she uses at home is the Enteralite Infinity. It is maybe 4in long, very portable and QUIET. No light on unless hooked to the charger. It's pricey but worth it.

 

[DustyKat]

1 He has never done a stool sample. Is that standard practice? I asked the doctors to do that before the scopes but they said with inflamation markers and symptoms wanted to go straight to scopes. They could test for things like guardia while they did that. Sounds like alot of folks do have stool samples done even after diagnosis. Should I expect they should test them?

We only have stool tests done as a part of the diagnosis or when flaring. Some do use faecal calprotectin as a measure of inflammation but if the bloods reflect that I don't think it would be necessary to double up with stool as well.

2 He goes to a gastro ped clinic at a children's hospital in the US. His doctor is a liver specialist, who we saw first when referred to gi clinic since he had a cancellation and available next day. Should I request an IBD specialist? All the GI clinic doctors see IBD but do you think someone specializing in IBD would be more in tune, especially since IBD is so complicated in treatment and presentation.

Personally I like the thought of being seen by an IBD specialist. I would say that many GI's steer you in the right direction but having the validation of an IBD specialist really is the icing on the cake. Even if it isn't feasible as a routine thing then perhaps have visits as the need arises, like treatment changes or flares, and see the GI as scheduled at other times.

3 He is on azathioprine. Started in Oct 2011. They are testing blood every 3 months after the initial 2 months. Seems rather far apart. What do you think?

I think the blood tests should be more frequent. Both of my children are on Azathioprine (Imuran) and although I do know that many doctors do pan them out to 3 monthly I personally wouldn't have them done anything over 2 monthly. Already being on 3 monthly, only 6 months out, is too soon in my book.

4 With the EN, this may be a stupid question...the tube goes up the nose direct to the stomach..how does the formula/pump work? How big are they? Are they attached to the person or the bed?

Just with the noise aspect of things, how about ear plugs? Although we have never had a pump at home ear plugs were a life saver in hospital.

Dusty. xxx