maxalon and domperadone (stacey or fionna a question for use)

[Nowhere]

or any one else that can help

As you know miki has motility issues as well as all her othr GI issues, she s on a continuos feed amaing for 45 an hour but have never got there we are fighting fo 30 to 35 with not much success she isnt even comfortable at 10ml kwim any way shehasbeen on domperadone for ages now and it doesnt really help it must help some causewith out it she is an absolute mess, any way her gagging and retching etc has goton so bad and uncontrolable that they have now perscribed maxalon as well to help wth her nausea until and to help try and get her tolerating at least 35 an hour

so my question after all that babbling lol is it common for kids with motility issues to be on both or are they he same sort of drug, im just curiuosthats all.

and a side question stacey how are you finding meganis over the hot weather with not being able to tolerat much per hour, is she getting dehydrated, i havenoticed mikenzee seems to be a bit dehydratd im mixing her pedialite with her feeds but dont know ho she is going to go in the really hot months KWIM i think once weget our aircon inthnewhouseshe wil be okay so justgota hope for no more hot days until then

[reAllytee]

so my question after all that babbling lol is it common for kids with motility issues to be on both or are they he same sort of drug, im just curiuosthats all.

I cant be much help with your questions but yes they are the same types of medication as in they are prescribed for the same issues of nausea etc.

[kiwibird27]

Hi Amy, I know Fionas daughter is on both, Maxalon is to help motility thru the small bowel and the Duodenum , we need to trial this too but her diahorrea is REALLY bad and it may make it worse, Zofran works for Megan so no need for domperadone

Megans hydration rate is 35 mls an hour and she's tolerating 41 mls now so all good, her issues isn't a malabsorption issue so hydration since the fundo isn't a problem.. When she was tolerating less though we would add gastrolyte to her milk and this would help ALOT!!!
She would get 30mls an hour of milk and 5 mls an hour of gastroltye, I would add 5 mls gastrolyte to every 30mls of milk I made up and run it thru like normal. There was an immediate difference and kept us out of hospital, I have even run 10mls an hour of milk and 25 mls an hour of gastrolyte for a few days, anything to avoid a cannular!!!! Megans issue is with tolerating milk usually, other fluids are fine

[bossoflatch]

you know i dont know much about this.. but hugs ..
just wanted to see how it was going ???

[Nowhere]

thanks for the replyes

stacey, thats good to here is helps with the motility of the small bowel that should help with the J feeds, i hope so

[kiwibird27]

Amy.........Forgot to say have u heard of Nutriene formula//Comes ready made in a bottle for children who can't tolerate high volumes of milk, Megan can't have it cause she can't tolerate concentrated feeds but maybe Mikenzee can???? I know it's VERY new in Australia so maybe not in Perth yet???Think I'm spelling it wrong cause I can't google it....Fiona will have to help me out with this one when she logs in next!!!

[kiwibird27]

you know i dont know much about this.. but hugs ..
just wanted to see how it was going ???

Hello, how are u, Megan up to 44 mls an hour of milk, only 2 short of our goal.....VERY excited, still has chronic diahorrea, but who cares!!!!

[bossoflatch]

hey stacy .. :wave:
we are off foods AGAIN !! back to neocate diet.. lucky i know :p

she is so much happier on this stuff than food .. but we need to get these scopes done after food trial .. so what to do :rolleyes:

[kiwibird27]

hey stacy .. :wave:
we are off foods AGAIN !! back to neocate diet.. lucky i know :p

she is so much happier on this stuff than food .. but we need to get these scopes done after food trial .. so what to do :rolleyes:

We wouldn't want our kids to eat anyway....too messy............PLEASE NOTE SARCASM!!!!!

[fiona76]

Hi Mikenzees mum,

Bella on both maxalon and domperidone. Maxalon promotes gastric emptying by helping the stomach to empty into the jejunum. Ask your paed if there is any room to increase the domperidone (it works mostly on small and large bowel). Its a good combination because they both work slightly differently. Bella is also on another motility drug called Cisapride or Prepulsid. It was taken off the market a few years ago because one of the side effects was possible PQ changes on ECG. However, your paed can fill out a special authority script to give this, and you would need an ECG prior to starting. But it is probably the most effective of all the motility drugs. It works on both gastric empting and increasing peristalsis in small and large bowel.

There is also another prokinetic or motility drug, my doctors are trying to get from overseas for Bella called Tegasaride. It was another one that they were worried about ECG changes with (but they only saw this in really old people). So they are trying to get it on the market over here, but taking forever.

And Stacey mentioned the Nutrini formula, which you would be able to get. But you would have to get either your paediatrician or dietician to order it in for you. It has to be ordered in from overseas because we don't make it here. Its a higher calorie formula so you dont have to run as much volume. Unfortunately though, sometimes higher calories can cause more constipation. But you could definitly give it a go.

When are you starting jejunal feeding? Even if its not great, it still should be better tolerated than the gastric feeds. And are you on Movicol? If so, when you start running jejunally, you should be able to run more water with the movicol than you would gastrically and that will help with the dehydration.

Hope this helps!
The whole things a nightmare and a lot of work. Why can't these babies of ours have normal guts???

Fiona :wave::hugs:

[fiona76]

Sorry Amy, forgot to mention that if you are already running jejunally and the wretching is worse than usual, then maybe you need a smaller gastric jejunal tube. Often when you first start running jejunally, they are wretching and trying to vomit. This can happen because the tube is irritating the pylorus (the opening from stomach to jeujnum) and causing the gagging reflex. It can take weeks to get used to it. I know with Bella, we had to change tubes a lot to get the smallest one possible so she could tolerate it. In the end they used a normal gastrostomy tube and threaded through a very tiny jejunal feeding tube through it. It was tolerated the best..

It only has to touch the side of the pylorus and it will cause gagging. So, if you still continue to have problems, I would ask your doctor about trying to get a smaller tube

Fiona

[Nowhere]

thanks for the replyes,

stacey and fionna, the high calorie feeds sounds like a great option however unfortunatly kenzee has majopr issues with high stregth formulas we cant eve get her past normal stregth neocate with out disaster, for some reason her tummy just doesnt cope with it

I will talk to her drs about increasing her domp im not sure if there is room to move or not as she is so tiny she is under 7 kilo and is on 9mg a day because of hr heart they dont want to up it to high i know they was woried when she started on it,

we cant get her on any of the other motility drugs as she has never had normal ecg as it is so they wont give her anything that may afect it,

thanks for the tip about the sixe of the GJ tube i wil be asking them about that when we get it put in, if we are successful with the J feeds they are doin a seperate J tube so that she wont get iratation to her pyloris

If the J feeds dont work we wil be comeing over to sydney to see the drs over there see is they can help her

i hope it works and we wont have to

[littleleos]

just becareful with maxalon...

Im a paed nurse and it has been banned at our hospital.... we have seen some pretty bad side effects... excessive salvation... eyes locked up, jaw locked shut.... lip smacking.. really scary for parents

but if your paed dr had perscribed it... hopefully its an ok dose... there are some crazy GPs out there....