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hi everybody...i am looking for some help. my son is one and has had a gtube from the age of 2 months old. he has never gone more than 4 weeks without i spoke to the kimberly clark people and they told me possibly his medication but the last tube lasted 4 days...does anybody have any insight into why this would happen or what would cause this? thank you so much in advance.
sincerely,
michelle
Surgery Acid reflux GERD Tube feeding Zantac Gastroschisis Prevacid Hernia Psyllium Reglan Omeprazole
hi shawntain,
we continue to have to change our son's mic-key approx every 5-6 days...let me reassure you changing the button is not terrible...i don't know if you know but the mic-key extensions are compatible with the mini one...so if you feel they would work better either ask your dr or the infusion company that delivers your supplies to send mic-key extensions instead! i am glad heath is gaining well and you are having better success with the mini one...we are actually on the cusp of having to go to the mini one non-balloon capsule because gavin is just not compatible with the balloon...we were told it isn't exactly common but it does happen...i am happy to see a good post i hope all continues to go well for you!
hi all, we have switched over to the AMT mini and are so happy with it. its smaller size makes tummy time for comfy for our 6 month old heath! i also feel the valve on it works better so there is less leaking when i remove the extension set (before i get the "cap" on it). it seemed a little small and hard to handle at first but now we are used to it.
our guy has also blown through his nissen and is now vomiting 3-4 times a day. it happened pretty fast over the course of maybe two weeks, went from a tiny amount of spit-up to now mouthfuls. but the ped says he is still gaining so not to worry... we just got the tucker sling wedge for him and are hoping that may help somewhat. also trying a tiny bit of psyllium husks per a suggestion on another thread.
thanks for all your support and input! i hope everyone else has good luck with their buttons!
shawntain
why havent they looked into the ent one for you. the mushroom one
hi shawntain,
i know isn't it so hard to weigh the pros and cons of these decisions...i feel like we are kind of stuck with a double edged sword...upon all of our hospitalizations now the staff knows that the doctor leaves the final decisions to us which is wonderful in terms of trusting us so completely but my thought is we are not the doctors...i want someone to tell me which is better and do it...they get paid some big bucks to know the better and hopefully best thing to do for our babies! i hope you have found some solice in making your decision...i have been having a very hard time lately because 2 of my son's doctors are completley at odds and we are trying to figure out which one to follow since they are telling us opposite things to do which is a terrible feeling because it is not as if they are trying to convince me to choose between burger king and mcdonalds we are talking about putting my baby at serious risk...and a friend told me that any decision a loving parent makes for their baby is the right one! the other thing is if you change and are not happy with the mini one you can always change back...that is what we are doing... i hope all is well!
hi jakernick,
gavin actually started with amt mini and the extensions are compatible so hang on to them...thank you so much though...we went the other day to have it changed and they couldn't get the button in...after about 5 min of torturing gavin they stopped...they are going to have to use a foley to dilate the hole...the bottom of the mini one is flat and has no point to it whatsoever so it is a little more difficult to get in and they opted to go with a bigger tube so we can start putting food through it...i really appreciate the chat and discussing what is going on...it has been so helpful for me...if you don't mind me asking why are they talking about changing from the mic-key to the mini one? i look forward to hearing from you...warm regards, michelle
Haven't actually used the AMT mini, but the doctors told us when it was being considered for our daughter, that the Mic-key extension sets could be use with the mini. Not sure if this is true, but might be worth looking into. We have extra extension sets that we no longer use if you need them.
Hi All,
Some great info in this thread.... I'm so sorry to hear about others' issues with the Mic-Key buttons needing t be replaced so often. We've had no problems with ours, but are planning to switch to the Mini One as soon as we work up the nerve to put it in ourselves, since it came in the mail last week. Our 5 month old also takes 15 mg Prevacid daily, and it doesn't seem to hurt the Mic-Key at all.
In playing with the Mini-One we felt that the extension sets were a bit "stiffer" to insert and had less natural play than the Mic-Key. The Mic-Key extension sets seem to spin more or less freely so it makes it easy to put on and take off e.g. when he is sleeping and when he turns in bed at night it turns with him without yanking the stoma. Hope this makes sense... Has anyone with the Mini had issues with the stiffer extension sets? Just trying to convince ourselves that we really want to make the switch, since I think the Mini will make tummy time more fun for him.
Good luck to all!
HI all. I'm new to the group. My daugher is now 11, so her nissen fundo was done 10 years ago. But, I throw this out there. My daughter "tried" to vomit against the fundoplacation so many times and so forcefully that within a few months of the surgery, she had blown right through it. She can now vomit at will.
Jen
we are actually heading up to the dr now to have the system changed to the mini one balloon and if this doesn't work they are going to try the mini one capsule nb which is a non balloon system...he is still not allowed to have anything by mouth so the tube coming out anytime soon is not going to happen unfortunately! he has had the gtube for 9 months so his site is healed up pretty well...i don't know if that is what you meant...i hope your little angel is able to maintain her weight and doesn't need the tube again...thank you for the info i am anxious to see if it works
Our doctors suggested the AMT mini might be an option if the Mickey button doesn't work for your son, as it did not work for our daughter. We ended up having less and less time until it needed replaced, down to once a day. The doctors aren't sure why this was happening, but the said sometimes the AMT mini works for the kids the MicKey button doesn't. Just a thought. Hang in the there.
michelle,
Our daughter also had a nissen funduplication for aspirations and Gerd and let me tell you what.....don't put it off anymore :) she can't BURP but at least now she can EAT!!! She was born with gastroschisis and putting her intestines back was the least of her issues. The acid reflux or GERD was what was causing her to aspirate and not take the food by mouth. You should consider the nissen not as a temporary fix, but as a solution. She went from taking nothing by mouth to almost hitting goal feeds within a month. She had the surgery on April 27th and tube removal on July 7th. If you ask me that was pretty impressive and I would swear my life by Children's Hospital doctors. Even if you don't agree with them, trust them. They know their stuff.
hi marilyn,
it is so nice to communicate with you...you have obviously been through so much...that is amazing about your son tracking you guys it must have felt so good! can i ask...were they born with the issues that they still have or did they develop them along the way. wow 10 years without a seizure that is a beautiful thing! we had a bit of a rough day...gavin is throwing up everywhere...and he is also having a terribly difficult time walking...he is falling all over the place and slamming his head constantly...i took him to the dr and they are also concerned that he may have a hernia and that could be contributing to his difficulty walking. when i spoke to his gi they decided to stop cold turkey with the reglan because of the symptoms he is now showing are considered possible overdose symptoms and they said it could have been from stopping it and starting it again...so we are in for another night of withdrawl symptoms i guess and probably alot of throwing up...are both of your boys dealing with similar issues? like i said before it is so nice to communicate with you...this too is a new feeling of support for me! it is a good feeling! god bless you guys...hopefully everybody got off to bed peacefully!
i will talk to you soon!
michelle
Great to hear back from you so quickly-- somedays this site is a real lifeline to me-- as for the Reglan withdrawal, we did it a bit at a time and actually reduced each dose by a few ccs rather than discontinuing a complete dose. my guys were getting 5cc of Reglan 3X a day 30 min. before mealtime at the time we started taking them off it. My son with the G-tube has a nice BIG tummy now [aged 19] so can do the large meal 3X a day. When he was little his feeding was all day long at a very slow rate so I understand about the tiny tummy problem. We reduced the reglan by about 2cc each dose, waited a few days to see how they would react, and then repeated until they were completely off it. With a little mite maybe even slower is better. So many of these darn medicines seem to do harm along the way. I'd like to get Brandon off of Valproic Acid too since I haven't seen a seizure in over 10 years, but this seems to be a very tricky procedure. Over the years he has also lost his nystagmis [sp?]and focuses his eyes on us and tracks us around the room. What a wonderful step that was !! Where can I find info about the class action suit? Well I'm off to do ROM and things to get everyone ready for bed. Take care and hug your sweetie for me!
Marilyn
hi marilyn,
thank you so much for sharing...the first thing about the reglan is our dr has never been a fan...gavin was put on it during one of his hospitalizations down at a hospital in delaware...during another hospitalization at his hospital here they tried to take him off and he was vomiting constantly so they put him back on but one of the drs in the group kept telling us about this condition td and we recently heard about the fda warnings now so we decided to stop it ourselves because his dr is away for a month...how do you like that? and his nurse called the following night to see how he was doing and i told her i couldn't get him to stop shaking and he was scratching his head so bad that he made it bleed she told me he was going through withdrawls...well gavin also has a heart condition so i started freaking out thinking if his little heart can withstand going through withdrawls so she suggested giving him a dose and we would ween him off...i did and his symptoms subsided immediately...now we are waiting word on how to handle his weening...we went from 4 times a day to 2...they have talked about a nissen...the dr is holding off on it even though every speech and feeding therapist said it needs to be done...he also stopped eating after being intubated during surgery to have a mass removed from his neck...that is why we though it was temporary...unfortunately he just came off 24 hr continuous drip feeds because his little stomach can't handle anything going in quickly so now we do a couple of ounces over the course of the hour...i am thinking it is kimberly clark being cheap about making them from what i am hearing in this economy it seems everybody is trying to sneak by with substandard products but what they don't realise is that they are messing with our babies...and that is not right...gosh it seems like you are a saint...what a mom! those are lucky boys...we also have 2 other kids a girl and a boy...the girl is as healthy as a horse but our 2 yr old son is sick also...he has really bad pulmonary issues along with a heart condition...so these boys are keeping us busy! i really appreciate hearing from you! i wish nothing but the very best for you and your family! it is nice to talk to people who understand! take care and i don't know if this is something you guys are interested but there is a class action lawsuit for patients who were on reglan...check it out!
sincerely,
michelle
First I wanted to warn you all of something my husband just discovered about REGLAN. Both my sons were on it for YEARS and then we heard it can cause neurological side effects. Our older son had really severe shaking episodes so we have discontinued reglan to both guys. SINCE then my older sons tremors have greatly decreased.
Now the tube thing. We have noticed that our Mic-Key balloons seem to last for shorter periods overall lately, but nothing like you are having to deal with.
We find that when our son is on an antibiotic for his frequent UTIs that it seems to somehow attack the balloon.
We have had some success in diluting the pediasure with water 50/50 mixed together in the bag, and feeding only 3X a day at a relatively fast rate.
Our son is much older though, so I'm not sure if this would have worked when he was a toddler.
Maybe its the type of food you are giving him?
Maybe its WHERE the tube is actually placed.
Ive seen them all over the place, but my son's is right near his belly button and that seems to work well.
It sounds like you are doing everything "right" so its really mysterious why you are having so much trouble with the darn balloons.
If you ever get it straightened out, tube feeding can be such a blessing.
Also the swallowing thing-- my older son eats everything by mouth and always has, but developed swallowing problems along the way. We were told it was probably a result of him being intubated during spinal surgery but who knows for sure.
We found our speech pathologist was now doing a therapy with elderly and other patients to teach or reteach swallowing to those having problems. Its called Vital Stim.
It worked wonders with my older son. It sometimes takes awhile and requires recurrent treatment, but our son only seemed to need two 'rounds' at first and then only occasional short rounds from time to time.
It involves electrical impulses being sent to the throat to stomach in some pattern that teaches or reteaches swallowing in the correct order of muscular contraction/relaxation to the best of my understanding. Our son showed NO discomfort of fear during any treatment.
Our younger son does not swallow and has a fundoplification [something to do with the flap that covers the opening to the stomach] that keeps food from coming back up the tube. He can't vomit as a result, but at least he doesn't aspirate anymore.
Hope you find a solution to the leaky balloons soon.
Poor little babies having to go through so much so young.
We will be praying for you
Marilyn
if anybody would have any use for some clothes that have a little hole on the side for the gtube extension...i have some...i have gotten rid of alot but if i could help somebody out i would love to....boys clothes...some 3-6mo, 6-9mo and maybe some 12mo...please let me know or even if you know somebody...thanks michelle
hi bobbiejo,
thank you for sharing...gavin had a peg also but since he started toddling they felt it would be better for him to have the button...i just don't understand in this day and age and all of the amazing medical advances made how they don't have a better system maybe it's something we should all invent! haha wouldn't that be something...well i hope you are feeling well and i really appreciate your warm regards and they are sent back to you!
sincerely,
michelle
Dear Michelle,
I am so sorry that your son Gavin is having such problems with his g-tube. I currently have a PEG that is held in with a bumper, and I have had this first one quite a while because my surgeon is afraid that once he puts in a tube that is held in with a balloon that it will require changing often. I hope that you can find some answers that will help. I will be sure to keep you both in my prayers and thoughts. Many hugs.
Warm regards,
Bobbiejo
hi anne,
first of all...that is crazy and i am so happy that your daughter was at the point where she no longer needed the tube...unfortunately we are not taking anything by mouth...he is at risk for aspirating but no one knows why...this has been going on for over a year now...we actually don't have well water and everything that goes into the tube is made with bottled water or sterile water...and you are so right about kimberly clark...when gavin first got his button...they used a different manufacturer and the button was a mini one not a mick key but for some reason he formed some ulcers from it that started bleeding so they switched to the mick key but now they are talking about trying it again...my question is could there possibly be something with his stomach that is causing this to happen? although prob not...it is prob just a manufacturer defect which is infuriating...i hate changing it as often as we are...there is no way this isn't traumatic for these little guys! as soon as he sees me coming with it he starts to freak out! you are so amazingly sweet to offer the buttons but unfortunately we are using a 14fr 2.2cm. i really super appreciate the offer because our insurance co has been giving us a hard time with replacements because they feel he shouldn't need them changed so often! anne god bless you and your little angel! i am so excited for you guys to be getting on with life without the tube! i hope her health is good otherwise...
sincerely,
michelle
Also, what size Mickey button is it.....I was just about to donate 7 buttons size 14Fr - 0.8cm to the childrens hospital. If they are the size you looking for I'd be happy to donate them...also have farrell valves, feeing bags...extra extensions(both bolus and right angle)
Anne
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