Each hospital has their own version of a "magic mouthwash" it was Tonys lifesaver! Alternating b/w compatible and zofran every 2 hours kept his nausea under control too, just stay on them, don't get behind the nausea ball! Glad to transplant went smoothly
Xo

Jacki -- all I can think of is just to add a pinch of salt and baking soda to the water -- perhaps not enough for him to even taste. That might build up in him a taste for it. Of course, we don't want him to drink it, but to want him to tolerate it. But should he drink just a little of it, it should not hurt him. It has to be a very difficult a mysterious thing for a young person to have to go through this. I will be praying for you, Julian and your new arrival. In a few weeks you will amaze yourself that you go through all of this. For now, just take it one day at a time -- you will be able to handle everything once it gets here. Take care and God bless -- dave

Jacki

Thank you for the update on precious Julian. I am so appy to hear he is on the plus side of transplant. As Dave mentioned it must be so hard to get a child to be compliant during these next few weeks. Please now I'm praying for Julian and your entire family daily.

Blessings

Julie

Jacki,

Better to be +1 than -1. The path is upward from here. I was going to recommend some sodium bicarb solution, but Dave beat me to it. I hated Biotene and so I stuck with the bicarb. If Julian can tolerate "magic mouthwash," that is supposed to be good too. I had such a major change in my tolerance of different tastes for quite a while that there werent too many gargles or mouth washes that didn't taste awful.

I agree with Lea that you should not let Julian get behind the nausea ball. Amazingly, I never had nausea or vomiting, but they gave me prophylactic zofran in the hospital.

VERY happy for your little man.

Cliff

Jacki

Julian is in my prayers and wow I cant believe its almost time for the baby or that its almost November.

Karen

Thank you all for the suggestions. I agree that staying ahead of the nausea is important. Julian's doctors have been fabulous about working with me to figure our what will be best for Julian. Zofran has worked wonders for him in the past, but it just has not been enough over the past few days. We tried Benedryl, as that can sometimes help with nausea, but it didn't work either. Phenergan has worked wonders for him and lasts for a very long time. Unfortunately, it is also very sedating, so we now have scheduled doses of this at 12:00 AM and 12:00 PM. That has worked perfectly, because they cut down the dose, making it less sedating, and Julian has been able to keep meds down all day long. He has not vomited since Friday, and the sedative effect is mild enough now that he is up and playing at least some in the morning and long into the evening. He naps around noon, and I usually wake him to keep him from sleeping too long, but he wakes well too. So far, we have not had mouth sores, but I am trying hard to do everything in my power to prevent them. I know that they are painful and also an open invitation for bacteria. Julian is very verbal for his age, so getting him to cooperate has not been terribly difficult, except when he is feeling really rotten, So far, we have swabbed four times daily probably every day but one, and I think he has missed only one dose of oral meds (when he was not able to keep anything down). He seems to tolerate the Biotene better than the saline, so I am doing plain bottled water two or three times daily and Biotene (followed by bottled water) once or twice daily. Somebody had also suggested club soda, and I have it, but I have not tried it yet. I believe if he gets some sores, they will also do the magic mouthwash. Almost everything is preventative at this point, which I am grateful for. Just want to keep his as comfortable as possible for as long as possible! Thank you all for your prayers. Julian knows you names too, because you are all on our nightly prayer list. :)
Jacki

Glad to hear the nausea has gotten better, praying for no mouth problems and an easy road ahead for your little guy. And an easy go for you and your upcoming newborn.
DaveJ

Jacki,

I am not sure I would go with club soda. All carbonated drinks have carbonic acid in them. I think it would be better to keep the gargles neutral or alkaline (like with bicarbonate). I am glad the Phenergan is helping Julian. The nausea will wane with time. What is he eating? The worst is definitely over. Just continue to do what you are doing. I think he will be in good shape before the cold season really starts up.

You need to focus on the coming attraction. A new baby will undoubtedly excite Julian and distract him.

Cliff

When I was getting my treatment for AML my doctor let me take something that did wonders for my mouth sores. They had just come on and were all over. I was so miserable and I asked the doctor how long this would last. He said about 2 weeks. I asked him if I could take some "George's Always Active Aloe Vera juice" because I knew some friends had used it and it had a healing effect on their digestive tract. He let me give it a try and ALL my mouth sores were GONE by the third day except a little one on my uvula. I just swished an ounce at a time in my mouth 5-6 times a day and then swallowed. They wouldn't let me take it after my BMT at UAB because they didn't know anything about it, but I always wondered if it would have helped the mucositis in my esophogus. You can get it at most health food stores. It's not slimy or bitter. Just tastes like water.

I appreciate the suggestions! We are +5 now, and this has been Julian's worst day so far. Clinically, he is doing awesome, but he is feeling terrible. Nausea has been the biggest issue by far. We are now doing continuous Zofran, along with Phenergan and Ativan, which are alternated every 3 hours. It makes him really sleepy, but he is so miserable without these meds, that I feel like it is the only option right now. I saw that he has some mouth sores now...they must have just developed. I think he is too sleepy to notice them much so far, and in some ways, that is better, because I don't want him putting his fingers in his mouth. He is not eating at all as of yesterday, but he is on TPN, I am told that all of this is normal, and we are hoping that with two cords with large cell doses, we might see him feeling better within just a week or so. Sogle, I will have to ask the integrative therapies person about the Aloe Vera juice, especially if it is flavorless. He did try the Biotene, but mostly we have done water only. Never tried the club soda either, because I was afraid that it would have a bitter flavor that would make him more nauseous. It is hard to watch my active little boy sleep the day away, waking only to puke, but I am so grateful that this is the first day like this, and I am hopeful that this stage will be short lived!

Jacki -- as long as the med people are not alarmed, I would not be too concerned. I know that is hard and it is difficult to watch, but it is probably harder on you than Julian. For sure he will never remember it. He just needs to get through it. We will be praying for Julian that his numbers come up and beat out these problems as soon as possible. -- dave

Poor little Julian! This is the roughest time, so I am happy that he is sleeping most of the day. The aloe vera juice sounds like a great option for the mouth sores if safe and approved by his doctors. After my husband Sal's SCT, he had only salt water for rinsing (which helped), but something that Julian can safely swallow is obviously best. I hope time flies for you and Julian...and Dave is right: Julian won't remember this. But, as a mom, I know how hard it must be for you to see Julian so miserable. Big cyber hugs to you both!!

Monique