Undetectable Remicade levels after 4 weeks?

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pdx

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Dec 26, 2014
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Hi all,

My 12-year-old daughter E was diagnosed with Crohn's 3 months ago in Dec. 2014. In hindsight, she has had symptoms for at least 5 years, but the symptoms were always attributed to something else until she finally got very ill last fall.

I've been spending countless hours on this forum since then. Thanks so much to everyone for sharing their experiences here--it's honestly been a lifeline to me during the past few months.

Our GI recommended a top-down approach, so E started Remicade on Dec. 24 (no steroids). She continued to be very ill and lose weight, so we tried SCD for 3 weeks. That took away her abdominal symptoms, but she continued to lose weight--she hit 70 pounds at 5'1"--so we started 90% EN via NG-tube. That helped her gain some weight back, but 2 weeks ago she started feeling very sick again, with high fever, and she ended up back in the hospital.

A CAT scan showed leakage from her small intestine, which had led to an abdominal infection. She was treated with IV antibiotics, and she finally also started steroids--IV in the hospital, and Entocort now that she's home again. With the steroids, she's feeling better for the first time since diagnosis, and it's been so wonderful to see her smile again.

My husband and I have been concerned that the Remicade hasn't seemed to help at all yet (she finished induction 5 weeks ago), and so were were glad when her GI had her Remicade levels tested during her hospital stay last week. The test showed no detectable Remicade at 4 weeks from the last infusion. So E will be going back for her next infusion as soon as we can get into the infusion center, hopefully this week. She's also going to start oral MTX and folic acid this week.

Have any of you dealt with a similar situation? I'm so worried that the test results might mean that Remicade won't work for her. Should we push to increase the dose, along with increasing the frequency? So far, she's been at 5mg/kg. And how often should we ask for remicade levels to be checked? I know it's an expensive test, but it's so hard to know what's going on without testing.

I've seen that a lot of your kids have had to increase the dose or frequency of Remicade. How was the decision made to change the dosing, and how long did it take to figure out the optimal dosing?

Thanks so much for your advice.
 
I'm sorry she has been struggling, I know it can be hard to watch as well.

My son had to have his dose adjusted, increased and had to add mtx.

I think initially we shortened the schedule then after an infusion or two with a fecal calprotectin result being high we upped the dose to 10mg/kg then next we added mtx. In the end my son's dose was high dose either 12mg/kg or 15mg/kg I can't remember now.

The remicade initially took all of C's symptoms away and then there were a couple blips that had us tweaking schedule and upping dose. In the end, C was asymptomatic but imaging/scopes showed that there was still stubborn inflammation and we opted for surgery.

He went back to remicade after surgery but developed antibodies so we've moved on to humira.

I wouldn't adjust both schedule and dose at once because you will have no way to know which is working. I hope things keep improving.
 
I am so sorry she has had a rough go of it.

5mg/kg is the adult dose and the kids tend to metabolize the drug a lot faster. My daughter was shortened to 4 weeks and 11 or 12 mg/kg for awhile. Then we settled at 5 weeks and 10 mg/kg for a long time. Our GI checked the levels frequently at the beginning to make sure the symptoms appearing was because she was burning through the drug too quickly and not that she just wasn't responding. After that he made the decisions based on symptoms ad checked levels about every 6 months to a year. You can't determine the drug is not working for her until you get her to a good trough level.

Also, at the beginning inflammation causes them to use up a lot more of the drug and as the inflammation settles you can tend to decrease dose and move out frequency. For example, my daughter is now that my daughter is in good solid remission she is at 7 weeks and 6 mg/kg.

It also isn't uncommon to add a treatment (Imuran, Mtx or EEN) to the Remicade to give it a little boost until it can handle things on it's own. But docs will typically do that once the levels have been firmly established.

It sounds like your doc has a good handle on things. hang in there. Things do get better. We didn't hit our stride until 6 months in.
 
My daughter is on an experimental dose of Remicade - 20mg/kg every 4 weeks -- it's called high dose Remicade. It was prescribed for her arthritis though, not IBD.
If she's at 5mg/kg right now you have a lot of room to play with the dose. We went from 5mg/kg to 7.5mg/kg and then 10mg/kg every 4 weeks. That took care of the Crohn's but not the arthritis.

Adding MTX also really helped my daughter.
We only checked levels twice and it was mostly to check if she had antibodies (she didn't). However, if your insurance is cooperative and your doctor agrees it is necessary he/she may want to check more often given her history.

Hang in there! It takes a while to find the right dose/frequency.
 
I'm so sorry to hear about the struggles.
My Grace has been moved up to 4 weeks.
She also takes Mtx and sulfasalazine.
It takes awhile to even things out.
Hugs
 
Thanks so much to all of you--it's so helpful (and reassuring) to hear about all your experiences.

Momtotwo: I forgot to ask our GI whether she also tested for antibodies. I'm hoping that she did, but that she didn't mention it because it came back negative. I'll ask her when I see her next week.
 
I had the same issue. After my induction did nothing we got my levels tested and almost nothing. I moved to 10mg/kg every 4 weeks and now I have more than adaquate levels.
 
No experience with Remicade, just hoping you manage to get a schedule worked out that makes a difference. Good luck
 
Thanks to everyone for your reassurances and advice. My daughter's GI doctor wants to up the remicade frequency to every 6 weeks for the next 2 infusions, and then she'll make a decision about whether we need to change dose and/or frequency. That seems reasonable to us, especially given that we've just added MTX, which seems to be helping a lot.

E is feeling so much better these past two weeks that she wants to apply to go to Camp Oasis in Washington. I would love it if she were well enough to go by this summer--I think it would help her so much to meet other kids who know what she's going through.
 
Really hope she gets to camp!! Hope Remicade and MTX work like magic!
 
I need some more advice. E has been off her NG-tube since Saturday, and it's been downhill since then. She's had lots of cramping, nausea, and diarrhea. We've been conservative with her diet, too--sticking with foods that she was tolerating during the weeks we were just doing night tube feeding. We tried doing some oral EN with Peptamen and Ensure, but she just can't make herself drink them. (She actually said she'd rather go back on the feeding tube than try to drink them.) She's down 2 pounds already, from the diarrhea.

She's scheduled for her next Remicade infusion tomorrow morning, and I'd really like to get her trough levels checked again, given that her levels were undetectable last time they were checked, and since it seems like the Remicade still hasn't kicked in. I also want to ask her doctor to up her Remicade dose to reflect her new higher weight, since she gained so much weight on the feeding tube.

So the problem is that I can't get hold of her GI doctor to ask about these two things. I e-mailed her Tuesday morning, and then left a couple of phone message with her advice nurse Weds. She's usually very good about getting back to us on the same day, so I think she's either sick or on vacation. She's a Kaiser doctor, so there's no group practice to call--she's the only Kaiser pediatric GI. Our infusions are done at the local children's hospital, not at Kaiser, so no one there can order the test for us.

I'm wondering if we should delay the infusion if we can't get hold of the doctor. If we go ahead with it, we'll have to wait 6 more weeks until we can check levels, and that's a long time to deal with all these symptoms. I'm afraid that we might not be able to get in again soon, though, if we delay--the infusion center is often completely booked up. Ugh--I hate uncertainty! I'm going to try to get hold her E's pediatrician today, to see if she can help, and I'll call the children's hospital too, to see if they have any advice.

What would you do?
 
i would ask the pediatrician. I would not delay the infusion since it sounds like she needs her REmicade. I would, however, call that nurse and insist that someone review her dose before tomorrow- does it need to be increased now?
The dr can increase the remicade frequency and/or dose based on symptoms. Levels are not necessary to increase that. We see a very reputable GI at what many consider the best kids' hospital for IBD and he does not use levels to adjust meds. ( I prefer levels. i like numbers. But I am not a pediatric GI at a great hospital, so I defer to him!!)
 
Thanks, momtotwo--that makes a lot of sense, and makes me feel much better. I'm going to focus my efforts today on making sure that tomorrow's dose is correct.
 
^^ Wouldn't delay and we have never had levels drawn but have increased based on symptom and weight gain. We needed insurance approval to go above the initial 5ml/kg to 7.5ml/kg and drop to 6 weeks then approval again to bump to 10ml/kg we did that every 6 weeks for a few infusions and have stuck with that dosage but bumped out to 8 weeks and he has been good we have been able to adjust dosage based on weight, the insurance approval is for 10ml/kg so we don't have to get insurance approval to bump up if he's gained. So 8 weeks ago he got 580ml based on 130 pounds last week he got 570 ml as he had dropped 5 pounds and they couldn't go any higher based on his weight without preapproval.
So we were able to go in for regular dosage at first and they sent for insurance approval for shortened time and increase in dosage so maybe you can go get what you can now and maybe get dosage increased and time shortened so go back in 4 weeks at higher dosage and see if you make 6 weeks
Hope it all gets sorted out.
 
I just reread your post and noted the weight gain. This is how our infusion center works- they weigh my son right before Remicade. His Remicade orders are 10 mg/kg. However, the pharamacy does not adjust based on the weight that day. They do dosage based on orders, which are based on last weight at last appt. So...if my son doesn't see his GI for 4 months and gains 10 pounds (that would be a dream come true) he would still receive the dose for the weight 10 pounds lighter. If your center works the same way, your daughter will receive the wrong dose tomorrow if she has gained weight.
 
Our infusion center works the same way - they do dose based on the last weight. However, once I noticed M had dropped 7 lbs and was on too high a dose (10mg/kg for the higher weight) and informed the nurse. The nurse was able to contact her GI and get a new order put in. It meant we were at the infusion center longer but I didn't want her to get too much Remicade.

Can you ask your pediatrician to call your daughter's GI? Sometimes doctors can get through more easily to other doctors.

If your daughter is 12, she could learn to insert her own NG tube. It looks and seems way harder than it actually is - my daughter was dreading it and actually found that after 2 days she was quite good at it. She much preferred having the NG tube in only at night to having it in all day (of course, if your daughter doesn't mind having it in all day, then that's easier!). She also hated drinking Peptamen at first though she did get used to it (but still thought the NG tube was MUCH easier than drinking it).
 
How frustrating, Momtotwo. I guess I can understand that if the infusion center is ordering the Remicade from a pharmacy somewhere else, but I'm pretty sure that at our center, the pharmacy doesn't mix up the IV bag until we arrive (because we've had to wait for the remicade several times when the pharmacy is busy). Even if it is premixed, it wouldn't be that hard for the pharmacy to mix up a little more and send it up during the infusion. In my daughter's case, if they use her last weight, she'll be getting just 4.4 mg/kg, instead of 5.

Our GI's advice nurse just called me back. She let me know that our doctor is out of the country until next week. We'll be seeing a nurse practitioner from the hospital tomorrow before the infusion, and our doctor's advice nurse sent over a note to the NP describing our concerns. So we'll see what happens tomorrow.
 
pdx-
we are at at a hospital infusion center. It is mixed after our arrival and after the vital signs are taken and it is STILL based on orders which are based on the last GI appt. the GI is in the same building. I know it doesn't make sense, but that is how it is done. My son was underdosed, in my opinion, because of this and rounding down on dose.
 
I share that to let other parents know because if I had not questioned it and calculated his dose based on kg weight, I would not have known! I assumed they weighed him, entered the weight and the pharmacy provided a bag based on that weight. My son was getting 100 mg when he should have been getting 115.
 
Yes, Maya, we're thinking about having E try to put in the tube at night. Three months ago, I would have thought it would be impossible for her to do, but she was such a champ through the whole tube process these last few months, that I think she might be able to do it. We showed her some of the youtube videos done by kids, and she didn't think it looked too hard. (I'm so grateful to those kids who made the videos!)

While she didn't mind having the tube in all day around the house, she refused to go out of the house with it in, so I'd rather not go back to having it in all the time. (During the first week she had it in, a little kid made a big fuss about it at the doctor's office, and she was too embarrassed to go out after that.) It wasn't a big deal to stay in while she was so sick, but now that she's feeling better, I hate to have her stuck in the house!

We'll talk to her doctor about it next week, when she gets back into town.
 
Momtotwo--that is so strange! It doesn't make sense to me at all! Why even make the dosing in mg/kg if you're going to ignore the kid's current weight?!
 
We're lucky he has infusion done at his GI's office so they don't even call it down until after weigh-in so it's easily adjusted for weight.
 
I was just talking to out GI nurse about this last week. I didn't understand it fully, but there is some weird way they mix the Remicade. My son has been on the same dose for a year and a half and tomorrow at his next infusion if he weighs in at 110 lbs they will bump up his dose. If not, he'll get the same dose as usual. It has something to do with the vials that the Remicade comes in too... they can't be partially mixed???

I'll ask lots of questions tomorrow and report back.

On a side note, he gets Benedryl and Tylenol as pre-meds. Now that he's on Zyrtec for seasonal allergies, do y'all think he should skip his Zyrtec tomorrow? It'd be a double dose of antihistamines otherwise.
 
Same here. Dosed based on previous weight BUT if the nurses weigh the patient and they have gained a significant amount they will call the GI and ask if they want to bump up. It does have to do with the vials and not overdosing by using a whole additional vial.

Our doc also doses based on symptoms and again nurses ask prior to infusion how things are going. If the patient tells them things are going south, they will call GI for orders on how to proceed. Only after repeated problems will they order a levels test and that is because it isn't covered by most insurance companies and the high cost of the test.

I hope this infusion is the magical one that starts to help her feel better.
 
I know with Jack they have tossed 20-30ml I guess it came as 600 and since he is only approved at the 10ml/kg it amounted to 570-580ml. I know his GI wished he could just give him the extra figuring he was going to gain weight in between the infusion.
I personally would skip the Zyrtec, how fast can you get a call back?
 
M was the same way - absolutely refused to go anywhere with the tube in. She was really pretty nervous about putting it in herself and the first night was hard, but after that it was fine. It'll be even easier for your daughter because she's already used to NG tubes and knows what they feel like.

Dosage does have to do with vials - at some hospitals they use exact dosages and toss part of the vial out and at others they round up or down. We've been to a number of infusion centers/hospitals (4 I think) between my two girls (especially since M has been on Remicade 3 separate times) and it seems like every hospital has a different system.
 
I don't have much to add, but I just wanted to let you know that I'm thinking of you and E and I hope they can get things figured out for her tomorrow. It is extremely scarey to hear how fast she is dropping weight.

So far Gwendolyn has not had an NG tube, but sometimes I think she would benefit from one. She hates drinking the oral EN and we still have a hard time getting her to drink one of them let alone the 3 she is suppose to be having. Maybe I'll have to take a trick from your book and show her some youtube videos!
 
The you tube video can work either way. T hated drinking the formula but when she saw the videos was petrified of the tube and gulped them down. But the one of that girl we have linked to numerous times here and she is so good I have heard she motivates kids to try it.
 
Yes, you're right about that, crohnsinct. I showed my kids the video after E had had her tube in for 2 months, and E was very interested in watching how the youtube girl did it. My 10-year-old daughter, on the other hand, who is normally pretty fearless, got queasy watching and had to go lie down on the couch. It definitely hits people different ways.
 
Just a comment on stopping EN... after S did his 'exclusive' period of six weeks and we reintroduced food, we did a reintro diet (groups of foods added every few days) and gradually tapered down the formula until he reached half the dosage. By the time he reached the half dosage amount, we had added back all foods and he was able to eat almost whatever he wanted, both in types of foods and quantity, however, we stayed on the half dose of EN formula for two years. I may have missed something or misread your post, but it seemed your daughter just stopped EN. Certainly do all you're doing and have been advised re remicade but I would consider maintaining supplemental EN for as long as your daughter will do it.

My son inserted his tube each night and removed it in the morning. He was a bit older than your daughter but found it fairly easy to learn to do.

:ghug:
 
Thanks, Tesscom. We're definitely considering supplementing at night, exactly like your son did. For my daughter's last 2 weeks on the tube, she was doing 1200 calories of peptamen at night, and then eating during the day, and it was working well for her. We were good about introducing foods back slowly during that 2 weeks, and she's still on a fairly restricted diet right now. But for whatever reason, her body did better on a mix of food and EN than on all food, even though it's the same food, in larger quantities.

We stopped EN when we did because we had reached the end of the tube's lifetime, and we didn't put in another tube because my daughter never wanted to leave the house with the tube in. So if we continue, it will have to be with her putting in the tube each night herself, like your son did.

We'll talk to her doctor next week about continuing with supplemental EN. I really think it would help my daughter a lot, if we can get her buy-in on it.
 
Get her GI to talk to her about it if you can! My extremely stubborn teenager completely refused an NG tube for over a year and eventually her GI insisted she needed one based on the amount of weight she was losing - or she would have to drink at least 4 Peptamen Jr a day.

M had trouble drinking 2 a day, so at that point, inserting the tube and getting the calories overnight began to look VERY appealing. Her GI was also really good at selling it to her. The videos also made it look less scary.
 
S used no medications (except nexium because tube caused heartburn) for the two years! While supplemental EN wasn't enough to eliminate all the inflammation (hence, remicade), the exclusive period reduced the initial level and periods of inflammation and the supplemental EN seemed to maintain the status quo for two years (with minimal outward symptoms). I very much believe there are lots of benefits for staying on supplemental EN.

I also reposted a study in the parents' research section that showed continuing with supplemental EN significantly increased remicade's success rate. When my son left for university, just months after starting remicade, he didn't want to take the tube, pump, etc. and I knew I wouldn't be able to convince him otherwise (especially as his GI didn't really see the need :ymad:) but I did convince him to continue with 1-2 Boost shakes each day. He's now been doing this for almost two years. The study showed patients who had the most success on the EN/remicade mix were taking in 1200 cal/day - my son isn't taking in this much (250-500 cal/day) but, in my mind, it's better than nothing! ;)

And, as my son did find the insertion easy, he much preferred using the tube overnight rather than drinking the shakes! But, not everyone has such an easy time with the tubes - if your daughter agrees to try, make sure you get the 6Fr size tube and that there is a guidewire to help the insertion.
 
Just a follow up on Remicade dosing... I asked questions today at our infusion center. Still confused.

For a typical dose of 5mg/kg for say a 45 kg child, that would be 225 mg, but since it only is available in 100 increments, you round down, so the child would receive 200mg.

For a 50 kg child, it's 250 mg and rounds up to 300 mg. Of course my kiddo weighed 49.4 kg today. They kept him at the lower dose, but said next time he'll likely be over 50kg and will bump up.

The vials of Remicade come in 100mg doses. Some pharmacies will split into half doses if needed and toss the rest, some won't and will only use 100mg at a time.

Does this math work with everyone else and how your kids are dosed?

I'm still confused because he is getting 295mL today. I'm guessing 200 of that is the Remi mix and the rest is just saline?
 
Thanks for asking about it. It looks like our hospital works in 25 mg increments. E was at 175 mg her last two times, and today is up to 200 mg (rounded up from the 188 mg that corresponds to her exact dose).

How frustrating that your son was so close to 50kg! Now I understand jmrogers comment about the roll of change!
 
Gee Mehita, IDK the answer to that question but if you are right that might mean he only got less than 5mg/kg! Adult dose is 5mg/kg and many kids need more than the adult dose. No way my daughter's doc would let her go below 5mg/kg. He has said to me he would rather discard the unused med than go lower. What is his frequency? 8 weeks? If so, I would be concerned that this dose isn't going to see him through to the next infusion especially with tennis season in full swing.

Sorry to add to your concern but wanted to let you know you aren't crazy.
 
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It depends on how your hospital doses - some do round down or up but others actually use the exact amount - so for a 50kg kid on 5mg/kg they would give 250 mg (and toss the other 50mg). I don't know how it converts to mL though - I do know they add saline, so I guess what you said must be correct.

It does seem like he was under-dosed, at our hospital if he was 49.9kg then he would get the 50kg dose and not the 45kg dose! You might want to talk to your GI about it, so it doesn't happen again.
 
His GI kept him at the lower dose today. I didn't get to talk to him, but the infusion nurse and pharmacist did. We tested Remi levels so I'm kind of hoping they come back low, although he did say that no matter what, he'd be upping the dose next time, likely due to weight. He's been at this same dose for a year and a half now. Like Jmrogers said, we should have hid a roll of coins in his pocket. He was "thisclose" to the weight bump up.

I also wonder how much insurance has to do with it. I can understand him not doing it this time, getting the levels checked, and then having justification for next time, but if they are low then we're going to have the same week 6/7 fatigue again. That's frustrating. Oh well.

He has a GI check up scheduled a week before his next infusion, so hopefully we can sort this all out at the appt. And, that will be week 7 so the GI can see first hand.
 
If your son's levels come back low, your GI doctor might also reduce the time between infusions, so that would solve the 6/7 week fatigue problem.
 
We got the Remicade trough level back today--it was low but detectable, so our GI wants to stick with the same dose of 5 mg/kg every 6 weeks. (The trough level was 1.2; I don't know the units.) She didn't have any antibodies, so that's great.

I guess I'm glad, but E does not seem like a kid in remission yet, and she's been on Remicade for 4 months now. Her diet is still really limited. Every time she eats any kind of vegetable (even peeled and cooked), she gets cramping and diarrhea; even eating a potato yesterday gave her diarrhea. Since E's symptoms got worse after she stopped EN, her doctor understandably wants her to go back on EN for at least half her calories (which means an NG-tube, because E won't drink it).

E really doesn't want to go back to the tube--she was listening to me talk to the GI over the phone, and I could hear her holler NO! when we were discussing that part...

I need to talk to my husband about it--he's out of town until Monday--but I think she should go back to EN at night, and we should have her try to put the tube in each night, like many of you have already advised. I need to round up a 6FR tube first. She used an 8FR last time, so hopefully the 6 will seem wonderfully small to her. I think we also need to come up with a good bribe. ;)

One more question for people whose kids have done the daily tube insertion: what kind of tape did you use to hold the tube in place overnight? E used a duoderm/tegaderm combo for long term use, but that was a little painful to remove weekly. Is there something that holds overnight, but isn't hard to remove in the morning?
 
Yes - we used Hypafix. My daughter did not like duoderm/tegaderm either - very sticky and hard to get off! Check out http://www.feedingtubeawareness.com -- they have a parent's guide that has a whole list of different kinds of tape and descriptions.

6Fr seemed sooooo much better than 8fr to my daughter. We bribed her too, in the beginning ;)

Sorry to hear about the Remicade levels, but it's a good thing that she doesn't have antibodies. What did her GI suggest when you told him/her that she can't eat? EN (for most kids) isn't a long term solution.

There are some parents on here whose kids took longer than 4 months, so hang in there :ghug:
 
Thanks, Maya. The Hypafix looks good. Our GI didn't suggest anything other than going back to overnight tube feeding for right now. I don't think she sees it as a long-term solution--just something to keep E's symptoms in check and keep her gaining weight until the Remicade really kicks in (assuming that it will, eventually). Although I know that there are people on the forum whose kids kept up supplemental EN for months or even years, and I wouldn't be against trying that, if my daughter could do it. She is still underweight, so I think supplemental EN would help her catch up with growth, along with perhaps helping therapeutically.

It's good to know that there are kids who've taken longer than 4 months with Remicade. I keep reminding myself that E was in the hospital with leaking intestines and an abdominal infection just 8 weeks ago, so it may take a little longer for everything to heal. Her sed rate was down to 15 last Friday, so things are definitely moving in the right direction, even if it's slower than I'd like.
 
Oh I see supplemental EN. I didn't catch that. That's a great idea - wish I could get my kiddo to stick with that.

It took my daughter 4 infusions if I remember correctly - so 12 weeks or so. However, with Humira it took 5 months after adding methotrexate and making the shot weekly. Remicade is typically faster than Humira but some kids just take a while.

We get Hypafix from Amazon. M was only able to insert the tube in her left nostril, but many kids alternate. Even using the same cheek every night, the tape didn't irritate her skin. Duoderm, on the other hand, really bothered her skin.
 
My son used the left side only. Inserting the tube was almost more difficult/uncomfortable on the right side. And, here too, even using the same side for two years, there was no irritation from the tape.

Also, if you follow the youtube video's example, the girl used a fairly large piece of tape. My son used only a square inch size table to hold the tube in place. At the beginning, to help minimize the tube flopping around at night, I used a small hair clip to clip the tube to his t-shirt.
 
Grace had to use paper tape. We also got a roll on protective barrier to put on her check before applying the tape. It helped protect the skin from irritation.
My Grace has an adhesive allergies from bandages.
If you need the name on the product let me know.
 
It took my daughter a full 6 months on Remicade and steroids and later EEN to feel better.

FWIW - our GI aims for trough level of 4 so 1.2 seems a little low. That being said, as inflammation decreases so will the rate at which the body uses Remicade so you may see those levels go up. But I am pretty sure our GI would have been decreasing the interval or upping the dose...we did a lot of jockeying around until we found what worked.
 
Yeah--1.2 seemed low to me too, and I pushed for increasing dosing, but our GI wants to stay the same for now; she thinks that the trough level will increase as inflammation decreases. It does seem to be true that E's body's rate of remicade use is dropping as inflammation decreases. Two months ago, when her inflammation was still very high, Remicade was undetectable after just 4 weeks, whereas this time around, it was still detectable after 6 weeks. That's a pretty big difference in just a few months.

Patience is not my strong suit, however. :(
 
Mehita
- The mg of Remicade are the dose. The ml are only the delivery system- the normal saline the mgs of drug are placed in to get into the body. You can disregard the ml and just look at the amount of mg of drug on the label. Some infusion centers give extra fluids and some do not. My son typically gets about 270 ml of fluid. They start with a standard 250 ml bag. The mg of drug are mixed with saline to reconstitute it (make the power into a liquid) and that is added to the bag by the pharmacy. The total comes to about 270 mg. But he gets about 220 mg of drug. If he had 220 mg of drug in 250 ml or 500 ml the drug amount doesn't change.
 
Yeah for the first year my daughter was often at 0 or very low and had symptoms. We landed on every 5 weeks at 11 or so mg/kg. We are now at 7 weeks and 5mg/kg and her levels are spot on. So it is true. Healed intestines eat up drug slower.

Are there any plans to pull another level? Maybe not at next infusion but maybe after that? I ask because our doc has also said that research has shown that levels to low could result in increased chance of building antibodies. 4-7 seems to be the magical trough level where the drug is working and antibodies less likely to build.
 
My GI said 5-7 was his ideal goal for Remi levels however there isn't too much research on trough levels and how they correspond to how well the Remicade is working or building antibodies. My induction doses I had almost undetectable Remi levels that slowly rose as I started feeling better so your GI may be right. I am another person who didn't see any response until month 4 (The first dose I had somewhat decent trough levels) then it slowly kept working from there. I would say it was 6 months or so before seeing max effect.
 
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I just got DS' results back. Based on the discussion above, a 24.4 is low for a trough level then... but what does that mean exactly? Along with no detectable Remicade.
 
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My GI said low levels can mean that your body is burning through it too fast. It can be due to inflammation or for some people that's just what their bodies do. At the start I had almost undetectable levels in my induction but my last level draw ( with the disease more under control) I was at a level of 21.
 
Just a report back on the supplemental EN. Our home health service sent us some 6fr tubes and hypafix tape, and E was able to put the tube in by herself without too much trouble last night. I was hoping that once it was in, it wouldn't bother her at all, since she was fairly comfortable with an 8fr tube just three weeks ago. But she was uncomfortable last night, and didn't sleep well at all. She finally begged to take it out at 5:30am and I said yes because we were both just done at that point.

I think tonight will go better. She already put the tube in with no problem, so it looks like that part won't be a stumbling block. And hopefully she's good and tired after last night, and will sleep like a log. :)

Thanks to everyone for all the advice!
 
Way to go E!! That's great that she could put it in quite easily.
The first few nights were hard for M too. Hang in there!
 
Thanks! She woke up in the middle of the night upset again last night, but this time she was able to get back to sleep, and didn't wake up again until 9:30. I was able to get back to sleep too, so we are all much cheerier today than yesterday.
 
Did Hypafix irritate her skin? It was the one tape that didn't bother M. We did have to use multiple pieces because M moves a lot in her sleep and we were afraid it would come off.

Everything is better when you sleep! Hope tonight is even better :ghug:
 
I think the hypafix is going to work well. My husband put on the tape the first night, and he put a big 2x3 inch piece on. That was painful to remove the next day and her skin stayed red for a while. We used a much smaller piece last night, along with a few small strips, and it came off pretty well and doesn't seem to have left a mark.

The hypafix is much easier to handle than the duoderm and tegaderm too, which is nice.
 
We're a week into the night feeding, and it's gone better each night. Tube insertion only takes about 20 seconds now, with no coughing or gagging. And her level of comfort with the tube is back to how it was last month, i.e. she doesn't like it, but it's not a constant irritation.

We did have a glitch last night, though. She called for me about 2am, saying the tube must be leaking. It turned out that she had pulled out the tube in her sleep, and then slept through the next 2 hours as it slowly and steadily dripped all over. (The tube was still taped to her cheek, so it wasn't just that it fell out--she must have pulled it.) Oh man--Peptamen is so sticky! Anyway, we got everything changed out quickly and gave up on the tube for the night. (Is it bad that when I first saw what happened, I didn't care at all about the mess--I just thought, "All those calories are in the wrong place!")

Anyone else's kid ever do that? I'm so glad that never happened with her original tube, when reinsertion would have been a bigger deal. Hopefully it was just a one-time thing!
 
Never had S pull out the tube in his sleep but did have connection come apart. Didn't happen often but, two or three times (S did supplemental EN for over two years...). And, yep, what a sticky mess! And, yep, my thought was 'now he's missed all that formula! :eek:

Ugh, glitches will happen... :voodoo:

But, I'm glad it's otherwise going well!! :D
 
No tubie messes here
But spilled peptamen jr various times DS has inadvertently fed the couch the bedroom floor or the steps ...
Of course I had the same thought ..
 
M never pulled the tube out in her sleep but we did have have the connection leaking too - she woke up with Peptamen all over her hair and bed (she was not happy).

Some parents tape the tube to their kids' clothes so that it's more secure. I don't know if that would help?

Glad it's not otherwise bothering her, that's great!!
 
Lol, I could tell you stories about all Grace's accidents but the biggest was....
She had just got her g-tube ( it's surgically placed in the abdomen near her belly button) she was hooked up to her bag that was hanging from her IV pull. We had a new large breed puppy and she got tangled in the tubing and took off running. :eek:
It all happen so fast that even Grace didn't know at first.
Spent the rest of the day waiting for the surgeon to put it back in.:yfaint:
 
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Lol, I could tell you stories about all Grace's accidents but the biggest was....
She had just got her g-tube ( it's surgically placed in the abdomen near her belly button) she was hooked up to get bag that was hanging from her IV pull. We had a new large bed puppy and she got tangled in the types and took off running.:blush:
It all happen so fast that even Grace didn't know at first.
Spent the rest of the day waiting for the surgeon to put it back in.

Yikes!
 

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