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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
Hello Michelle, & Family,
I would agree with Kimberly Clark that medications can make the balloon degrade soon at times. But 4 day's does not seem right at all.
How do you tell that the Mic-Key is having problems? How much water are you putting into the the balloon? I normally put about 5cc into Nina's balloons. We normally get between 4-8 month's per Mic-Key.
Did Kimberly Clark send you replacement tubes?
Blessings,
Lesley a/k/a NinaBean
I have a 3 month old daughter who had a Mic-key button put in 6 weeks ago. It has had to be replaced 7 times due to the balloon not holding water. We have spoken with Kimberly Clark (they will replace them automatically if it has been less than 30 days). Some of them are only lasting two days. We've been told conflicting things as to the cause. One doctor and the company said that if your child has a very high gastric ph it could cause them to go through buttons more often and have prescribed prevacid. The other doctors are all saying it is a manufacturing problem. Sorry this doesn't help much but your not alone with this problem and all the frustrations.
hi lesley,
thank you so much for responding. unfortunately gavin's tubes are actually coming out enough that i see the top of the balloon. then i check it and everytime it is empty. kimberly clark has been wonderful in sending 2 tubes for every one that i send back but it just seems crazy to me! i also put 5 cc of water and after i take the old button out i always fill it to see what it looks like when it has water in it and now i know why he is screaming when i fill it! it is spraying out with some serious force. well i hope nina is doing well. thank you for your response.
sincerely,
michelle
hi jakernick,
thank you also for your response...it is a bitter sweet thing to find people who are going through the same or similar thing...that is crazy! i was told that they would last 6-8 months. do you change the button yourself? i recently started doing it because the doctor is over an hour away. i hate that it has to be done so frequently. even once a month i could understand because of the meds but every couple of days seems extreme. gavin takes 2 15 mg prevacid tablets along with zantac and reglan so i don't know where that leaves us with his ph level but he has been on all of this medication since he was 3 months old. the dosage has changed a little bit but i was told that is the max he could get at this point...again i am super appreciative for the response like i saiid it is bitter sweet! i hope your daughter is doing well or at least better! i keep hearing conflicting stories and i am really starting to wonder who the heck knows what they are talking about if any of them do...which is scary because our children's lives are in their hands.
thank you again sincerely,
michelle
There's so many factors why g-tube clogged easily. Sometimes continues feeding is better than intermittent. And some meds like omeprazole needs to shakemore because it crystallyzed inside tube. Also what kind water you used, preferably bottled or distilled shd be used for balloon.
hi keanpreston,
you know i wasn't really clear in my initial message...his tubes aren't clogging the balloons are leaking...all of them pretty much in the same spot...i appreciate you responding to the post...after that last post his button lasted 2 days! we have tried different sizes and all but 2 were from different lots...hopefully this one will last a little longer...thank you again for responding we are just at a loss!
My 6 month old daughter had the same problem with the mickey button.....7 tubes in 4 weeks was crazy. Kimberly Clark sent me 7 replacement tubes a day late. The last tube blew a week ago and we drove 2 hours to Pittsburgh to have it replaced at the Children's Hospital. Since our daughter was almost at her goal feeds we opted to have the tube removed that day. Is this an option for you? I would talk to your doctor because we have also heard that well water could be the problem. My question is this.....if it's not a manufacturing issue, why is Kimberly Clark so ready to send out thousands of dollars of buttons for free??
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
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
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 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
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
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
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
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,
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
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.
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.
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
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
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