Hi all! I have yet another question for the experts. Elle is getting pretty nasty chemos that are causing severe nausea/vomiting. She has lost all of the weight she gained in Induction (started at 26 pounds, 26 months old- gained 10 pounds to 36), and now is down to 22 pounds, so she has lost an additional four pounds. The docs started TPN today to try and get some nutrients into her, as she has pretty much stopped eating (Will still drink some, but basically is only eating a bite or two of yogurt, a few puffs, and some crackers).
They told us our next step would be feeding tubes. Frankly the thought of that scares me to death! She is on Zofran for her nausea but spits it out frequently and also has trouble with the Atarax. They won't put her on the Scopolomaine patches because they said she's too young for those. We are really struggling here with this...any advice?
Ugh. I've been there, and am so sorry you're heading there yourself. Elke actually stopped eating right away, in Induction, so she never even gained weight then, and had life-threatening GI issues from the start. She was on tpn a fair share here and there throughout treatment, which is a lifesaver, but they really don't want to do tpn longterm if they can help it, for a couple of reasons. First, tpn is hard on the liver, and since so much of the chemo is metabolized by the liver, it can place undue stress on it (please don't let that get you freaked out over tpn in general -- quite a few kids are on tpn during treatment. They just would rather not have a kid on it for months if they can help it). Also, it's ideal to keep some nutrients, when possible, running through the GI tract. Otherwise the villi that line the intestines can atrophy and make reintroducing real food that much more challenging down the line. Elke had an NG (naso-gastric) tube placed during the second week of Induction, I believe, and I was so relieved when they did it. I was terrified that she was going to die from lack of nutrition on top of the treatment. Our kids can't possibly fight this battle if they don't have the energy and fuel in their bodies to do so. Elke was placed on a continuous (24/7) slow feed via pump of an elemental formula that was easier for her system to digest. Unfortunately, she had a very difficult time even tolerating that, so, as mentioned, she was on tpn a good bit.
Since Elke was clearly going to have to be on a feeding tube long term, her GI dr advised us to let her replace the NG tube with a gastric tube implanted in her stomach. I fought that one for some reason -- the idea - because it seemed so much more permanent than the NG tube -- was so much more disturbing to me. The GI dr wanted to do the surgery at the end of Induction, but it took me until the end of Consolidation to agree and let her do it. What a relief it too was. We no longer had to worry about whether she was getting the proper nutrients (that is, when her system was tolerating the slow continuous feeds), and the gastric tube was just less, well, "in her face" -- it was something hidden under clothing. Another advantage of the feeding tubes for the little ones is you can put meds in them too We kept Elke's g-tube throughout treatment, she had it removed 6 weeks after going OT, and we've never looked back. So even the g-tube is not really "permanent." Look at a feeding tube as a short-term solution to ensuring that your daughter gets the nutrition she needs to win her battle. Between the feeds and tpn, we managed to limp our way through the most intense portions of treatment. It wasn't pretty, between the severe diarrhea and severe vomiting, but we did it. And Elke was two years olds, so she was around Elle's age.
As for anti-nausea meds, Elke ended up on a combo of three oral ones (again, usually through tube): zofran, hydroxyzine and reglan (metoclopromide). She also always received at least two different anti-emetics via IV before she received any IV chemo, like mtx (or else she would be vomiting by the time the infusion was ending). None of this worked perfectly -- she was back and forth to the hospital a lot those first few months, but between these meds and the feeding tubes, we made it through.
Honestly, the feeding tubes and tpn saved Elke's life. She wouldn't be here today without them.
If you have any more questions, or questions about NG, NJ vs gastric tubes, please ask. Also, if you do a search, you may find some helpful older posts on this subject.
It is scary, I hear you, but like Elke'smom said it was a lifesaver for us. I believe it was into the second week of treatment for AML (heavy-duty chemo) that my 3-year-old got his NG tube for nutrition (over the 5 months it was in it took him from 14.3 kg at diagnosis to his current 18 kg). Most of the time during treatment he would eat either nothing at all or a couple of bites...just not enough, especially as studies have shown that good nutrition is key to fighting AML. Also you could put meds down it!
I won't say the experience has been trouble-free. It took my son Alex a few days to get used to it, but he did so to the point that a month in he didn't notice it at all. They just removed it temporarily (due to a throat infection) and he actually complained at first 'I want my tubie!!' lol. Some problems we had were that when he would vomit the tube would often come out, until we got good at putting our finger just to the side of his nose on the tube at the first sign of retching. Then it would have to be reinserted which was terrifying for Alex and difficult for me to see. He is a bit less scared of the insertions now.
We have been in hospital continuously since Sept 1., and are still there recovering from a cord blood transplant, so his nausea meds have always been given IV. He has been on TPN for a couple of months, following transplant he couldn't tolerate the tube feed due to the vomiting, so they laid off for a while, then he has had a narrowed airway from a virus so they didn't want to try restarting the feeds (even though the vomiting is now resolved, 2 months out from transplant). Hopefully soon!
I should maybe have pushed for a G-tube at the beginning- though because it is through the skin it can really be an infection problem so they may not have done it (AML treatment leads to more prolonged and severe neutropenia which is why they don't let us home much for months). We will have to see what they think- at this point I really don't see my son eating normally for months to come, and it would be less traumatic for the meds he will have to take.
My 2 cents! Marin got an NG during consolidation at the age of 17mons and had it until she started maintenance 8-9 months later. There were a few weeks where we tried to pull it and eat normally only to see we needed to put it back in. We were initially against it, probably due to the vanity issues (silly I know, but honest) and because she was still eating, just not enough. Anyways it really was a life saver for her and we got to the point where we asked for it. We changed nostrils monthly usually and got really good at taping it down and caring for it. We did 3 bolus feeds during the day at normal meal times to try to keep things normal. We also used to boost the calories with a special calorie powder that we added to the formula. This helped tremendously. There were times she vomited and you get good at recognizing the signs it's coming and you support the tube and hope it doesn't come out. Our daughter never messed with it. It was a good thing for her and I also highly recommend it.
Thanks for all of the responses!
Elle actually got her NG tube placed yesterday. Her team felt like given how intense her protocol is/ is going to be, it's good to go ahead and place it. She got to home today for a brief break, before going back in for Block Two of Consolidation with HD MTX and HD Cytarbine, so we feel like it was placed at a good time.
She keeps grabbing at the tube and saying, "Off, Mommy. Off, off, no tubie no no." We don't think it is hurting her because we ask if it hurts and she says no. Any ideas as to why it might be bothering her?
Check the tape job, sometimes it can be to tight and pull at the nostril. We always had Marin's at a downward angle. Also the tube is quite stiff at first so it needs sometime to loosen up. We always wound it around our hands and wriggled it back and forth prior it insertion to loosen it. Otherwise it just takes some getting used to. Good luck!
We checked the tape and it didn't look like it was pulling at her nostril. Elle is still at home through tomorrow, then goes back in Wednesday for Consolidation Block Two. Her grandma visited yesterday and saw Elle for the first time since the tube was placed. Elle hid her face behind her blankie the entire time her grandma was here and kept telling me "tubie off, tubie off". The best we can figure is even though Elle is barely two years old, she is embarassed by the tube showing...heartbreaking.
Elke did exactly that. She was 2 1/2 years old at the time, and for the first couple of weeks would hold her blankie in front of the tube coming out of her nose whenever anyone walked in the room (she was inpatient). And it is heartbreaking -- it was clear she did not want anyone to see the tube. BUT, she eventually got used to it, and went out and about with the NG tube, not noticing/caring about it. I think Elle will too -- just give her time.
And I definitely think it's uncomfortable in the beginning. Heck, how could it not be? They have to get used to a tube running through their nose and down their throat. But I think they definitely do get used to it. As mentioned, we changed Elke's NG tube for a g-tube at the end of the second month, and we were much happier with the g-tube. If Elle looks like she might need one for a lengthy period of time, it might be something you might want to discuss with your drs.
In the meantime, rest assured that Elle, and you, will get used it. Just give it time.
Thank you, Ann.
Elle seems to be adjusting a bit better to it. She isn't tugging on it as much, but still covers her nose some when she has visitors (She is back inpatient as of yesterday for her second Consolidation block). I am glad she has the tube now though, because she is obviously feeling pretty ick right now with the HD MTX running through her system.
Thanks again for the advice,