Second Fundo failed, what to do next?

[littlebeacon]

Hi

My almost 4.5 year old son has had 2 fundoplications fail and is still vomiting daily and gags and retches all the time. He has severe spastic quad and dystonic CP with all the bells and whistles and is fully gastric tube fed. He currently only has 3 x 200mls of formula which he seems to take ages to digest. The surgeons have mention a pyloroplasty. I am waiting to see the paediactric gastroenterologist as there are lots of different reasons why he is vomiting. Not all GORD issues. just wondering if anyone else has had this recurrent vomiting issue and what successes have you had in fixing it? He is only 12.8kgs so weight is a major issue for him. Thanks :)

[Love My 7 GEMS]

I don't have a lot of time, but wanted to say welcome... glad you found us... sorry you had to!

The first thing I would ask is has your son been completely allergy tested? Has he had any success with ANY formula? Have you ever considered blending his food and giving him 'real' food, instead of canned formula?

I have a 3 year old who has a g-tube and a fundo, and he gagged and retched every single day even after his fundo...until I took him completely off of canned formula, and began making his food from real food that we eat. I am very careful about what I give him, I blend it up in a VitaMix blender, and he is growing, gaining weight and doing very well.

I strongly recommend you look into a blended food diet for your son. It's worked for many people, I don't think it could hurt to try it for your son, too.

Dori

[littlebeacon]

Hi Dori!

Thanks for taking the time to say welcome!!

I was reading something earlier that you wrote about the real food thing. Do you put it down the tube? My son can't eat at all. He likes the idea of food but he cant organise himself to swallow much.

Do you have anything special that you add to the real food to make sure he has enough calories?

We have tried lots of different formulas. We are looking to try Neocate which isn't dairy based to see if there is an intolerance. I am kind of annoyed they didnt think of that before. I asked about it a few times but I was told he was to underweight to try the lower calorie formulas.

My paed still hasnt given me the authorisation number to order the neocate...grrrrr. I really dont want to put him through another surgery if we dont have too as he has orthopaedic surgery in a couple of months too.

I will definitely look into the real food diet, I will be talking with the dietican next week so she what she thinks we could add to it.

Thanks so much.

:)

[littlebeacon]

also what do the medical professionals think about putting real food down the tube? I am sure i was told not to do that Alex first got his tube. Although I do put homemade organic vege juice down it to help his bowels.

:)

[Mother's Heart]

Hey Dori (Paul?) isn't there a website/support forum for folks tube feeding real food instead of formula? That was also my first thought....food allergy.

[Paul from Australia]

Hello and welcome to the forum. Sorry you are here, but there are many caring folk who will be able to assist.

I am very sorry to hear about the second fundo not working. That is extremely frustrating.

I second Dori's suggestion about trying fully blended Vitamix meals.

Regarding the vomiting, this is something that Grant can sometimes do. It is post seizure related.

How quickly is your son fed via the PEG. If there is vomiting because of PEG feeding it can help to feed very, very slowly.

Regarding motility problems with meals going through, there are drugs that can help, but you certainly need to be aware of any negative side effects.

If your precious son is underweight he could possibly have a high calorie addition to his meals. Because we give Vitamix meals to Grant keeping his weight up is a little bit of a challenge, so we add Polyjoule to his meals which keeps his weight spot on.

Best wishes and I hope you can resolve the problem soon.

Paul, Alison and Grant.

[littlebeacon]

Hi there

During the day he has his pump set at 70mls an hour. and during the night its at 46mls. I have tried really slow feeds to but after 3-4hrs he stills seems to overflow.

Its really frustrating. Its 3.45am and have just finished striping is bed and cleaning him up...grrrrr poor wee man.

My son is very underweight. He weighs the same as the average 18mth old and he is 5 in feb!! He is currently on Nutrini Energy which is 1.5kcal/ml and also he has 30mls of calogen which is liquid fat.

Not post seizures that I know of. He is on 6mls of epilim daily and that seems to keep his seizures at bay.

Thanks for you help. I just really dont want him having more surgery than necessary. I have found the Blenderized-Diet site and have signed up.

I am interested to hear from anyone whose child has had the pyloroplasty too and hear how it was afterwards regarding feeding etc...

cheers
:)

[Love My 7 GEMS]

So glad you found the blenderized diet site. As you will see from reading, there is no "right" or "wrong" way to do your child's diet. There are many foods that are high in calories that are good for you... I use 45 G of Walnuts a day in my son's feeding... adds 300 calories just like that! (45 G is essentially a large handful) I add cheese for protein and as a milk product, I have used avocado (though that tends to thicken the food up for the pump a bit)

You can use a bit of oils, olive or other 'healthy' oils, to add calories, and necessary fats, but as with anything there is a balance.

My son gets 99% of his feeds via his tube... he is bolus fed during the day, and pump fed over night. (He does get a higher volume at night, but he used to get his formula feeds at the same rate as your son, and he also was retching every night). My son tolerates approximately 240 ml's per feed of bolus feeding... but we do go slowly. It sometimes takes an hour to get it in him. We usually spend at least 30 minutes though on his bolus feeds. When he was on that amount (actually less) of bolus feeds of his formula, he would throw up (prior to his fundo) or he would gag/retch after the fundo.

Many doctors, dietitians are not in favor of blended food diets... but you know what? It's YOUR child! I firmly believe that doctors are so engrained in the world of canned formula for special needs children, they don't even allow it to be considered. Well, IF your son didn't have special needs, would they ever question you about what you fed your child? NO!

You've already begun giving him some vegetable juice...YEAH! If he tolerates that... he will likely tolerate other 'real' foods.

Since he hasn't been on anything before, you are wise to start off slowly, adding one thing at a time to his formula (put it all in the VitaMix blender together) and see how he does. Eventually back off of all formula... Now... I didn't do that.... I jumped head first into everything...but I had been able to give my son a few things before he needed his g-tube, and I knew somewhat if he had any allergies. We have discovered that my son is sensitive to peanuts, and flax seed, and is allergic to watermelon. Those are his triggers to gagging. (Watermelon he gets a huge rash... no more watermelon!) But by using walnuts, he gets his good fats, good proteins, and he tolerates it very well.

As to how well the food goes in the pump... it does make a difference what pump you use. We use the Zevex Infinity pump. Kangaroo pumps are not good for blenderized food. They don't push the food through, they just drip it...and the food would have to be too thin for that pump to work.

I hope this helps answer some of your questions. I am a huge fan of blenderized food, as you can tell. It doesn't work for EVERYONE... but I firmly believe that our bodies were made to eat real food, and that it will be of benefit to just about everyone who tries it.

Dori

[lacyndarella]

My son "eats" orally, so I do not have any real advice. I say that because he doesn't really eat; he only drinks carnation breakfasts and plays with the occassional pretzle, chip, french fry, or cheerio. He simply has no appetite for food. But he does very well with drinking, so we are not even discussing a feeding tube at this point. I just wanted to welcome you and let you know that you have come to the right place.

[littlebeacon]

Thanks Dori and Lacyandrella

I actually breastfed my son (god knows how, but I did!!haha) for 11 months and we had no vomiting issues then. It wasnt until he started getting sick with the next winter colds and he couldnt co-ordinate his sucking, swallowing, and breathing all at the same time that we had problems so to me it makes sense that the formula is an issue.

I absolutely think its worth a shot before he gets more surgery.

So Dori do you mix up the food then put it through the pump. Not syringed in? I have some big hanging bottles that go with my pump. We have a Nutricia pump.

I hope the dietican is supportive. I'm not sure she will though!!!lol

:)

[Donna Thomson]

Hi,
I am so sorry that you are having such a terrible time with your son's digestive problems. Here is our experience: My son Nicholas had an open fundo at the age of two years. He is now 21. Prior to his fundo, he spat up around thirty times a day. Just had no valve at the base of his esophagus to keep things down. So it was very positional. The real troubles started after the fundo. He began not to tolerate feeds. He would retch and vomit out the tube almost constantly. Trying to keep feeds down was next to impossible. Eventually, he would begin not to tolerate even water, even 5ml water. Then I would take him to ER for admission. IV fluids, then clear fluids then brat diet then home. A few weeks later, it would start all over. All digestive tests normal. In desperation, I started reading ped. gastro med. journals and I believed from reading that he had intestinal pseudo obstruction. I phoned the author of one study, Dr. Carlo Di Lorenzo who was doing research into post fundo retching syndrome. We were about to move from Canada to London, UK and he recommended seeing Dr. Peter Milla at Great Ormond St. which we did. Dr. Milla had invented the test electrogastrogrophy (I think that's the name) and finally, we got a diagnosis. Nicholas has a section of his upper intestine that is so dysmotile that the fundo just served to put a cap on the volcano so to speak. If the problem is below the fundo, he said, it's bad to cap it. His advice: treat very agressively the constipation and add domperidone to push the stomach contents through more quickly from above. We now use golytyly (or cleanprep as it's called inthe UK) about 120 ml per day for constipation and domperidone to speed up stomach emptying. Nick did eventually grow out of the worst of the symptoms of vomiting and he tolerates his feeds quite nicely now.
I wish you the best of luck. PS Dr. Milla said that if dysmotility can be diagnosed in the intestine that is the cause of reflux (common in CP), he advised bypassing the stomach and going for a J tube with no fundo.

Don't know if any of this info is any use, but we sure endured a firestorm of pain and suffering with vomiting between the ages of 2 and about 8.

Good luck and prayers, Donna

[littlebeacon]

Thanks for that donna

It all makes sense. I am going to ask about a j tube too. the surgeons aren't keen for a gj-tube but a j one might do the trick. They say because alex extends so much he will keep flicking the gj one out but they have never mentioned the j-tube just the pyloroplasty.

They have also mentioned teh domperidone too but his last barium swallow showed he was emptying fine but it was only for a few minutes. And reflux has never shown up in any testing either. I just tell them to come and see the state of my carpet. That is a pretty good way to tell he vomits all the time!!hehe

We used to have lots of constipation issues but i give him an Microlax enema every few days and that helps. Lately though he has had a very stinky runny bum so no enema required. I am waiting for the lab results but i dont think he is sick. He has as happy as larry.

Thanks again everyone. All of your ideas and stories are so helpful.

[MikesMom]

Hi:
My son Mike has had two fundos. They didn't work, but I'm pretty sure that the pyloroplasty combined with the g-tube (with peptamin) helped a lot. Does your son have an official diagnosis of gastroparesis? That's probably why the fundos aren't working - because he's not digesting as fast as you're putting food in. The peptamin (started at 1.0 - 1 calorie per ml) is "pre-digested" so it's supposed to be easier for the gut to process.

We ended up looking at it like trying to cap a volcano. The food has to go somewhere and since it couldn't go down, it had to come up. Kids with cp are also pretty notorious for having failed fundos. It's all muscle after all - even on the insides.

I'm pretty sure that the pyloroplasty helped with the digestion, but there's possibly risk in the procedure that I didn't understand when it was done - acid from the duodenum (below the stomach leading into the upper intestine) is supposedly the main culprit for a condition called Barrett's Esophagus. If your son has uncontrolled reflux and has had it for a long time, hopefully he is on a proton pump inhibitor (Nexium, Prevacid etc) to neutralize the acid so it doesn't cause permanent damage to his esophagus. Mike now has Barrett's so he's in a pre-cancerous state that requires regular monitoring.

All that being said, once Mike started gaining weight (he was 59lbs at 14 years old), his congitive ability increased as did his ability to digest food. We said good-bye to the g-tube a few years ago. Mike still has to work hard to maintain his weight (can't seem to get past 100lbs) - he still takes supplements, but he's a much happier, healthier guy.

Hope this helped. If you have any further questions - please feel free to ask.

Jeanette

[littlebeacon]

That helps heaps thanks Jeanette.

We have never seen a gastroenterologist before. They have only just got a paed one at our main hospital this year. We are in New Zealand. So we are waiting to see him. Maybe he can shed some light. I am not sure what goes on in there. Sometimes he vomits and isn't bothered but like this morning when he was vomiting he was screaming and it seemed really painful. When he was smaller it was definitely a reflux thing as his esophagus was so raw it took about a month before he was all healed up. He isnt on any meds for it at the mo but was on losec/omeprazole.

Does your son do any standing? I have heard the pyloroplasty can cause problems if they are fed then stand up. Does that make any sense? Does it change the way they need to be fed?

I have just used a weight converter and alex currently weighs 28lbs.

Thanks heaps!

[MikesMom]

Hi:
I think that if Alex is vomiting you should be considering a proton pump inhibitor. In our experience what we saw when Mike was vomiting was only the tip of the iceberg in what he was actually refluxing. Acid can be incredibly caustic on the esophagus which can explain the screaming. That being said, Mike never complained about pain at all. When the gastro scoped him he described Mike's esophagus as "raw hamburger" - he said that Mike had hundreds of ulcers and he didn't have a measurement that could adequately describe the damage that the acid was doing. He also couldn't understand how his physical exam of Mike prior to the scope had produced no pain reaction (pressing on the sternum). It was a real lesson for the doctor about not treating kids with cp like "just any old kid".

It seemed to take Mike a long time for his body to adjust to the pyloroplasty. There was some problems with "dumping" for a while - he would end up sick feeling and really hot. I've read that it's a really awful feeling. Eventually his body figured out how to cope and things just got better and better after that. I was told that it can take up to a year for the body to adjust to a change like that. It didn't take that long with Mike but it shouldn't be underestimated. It's not a huge surgery, but it does make a permanent change. It may be dumping syndrome that you've read about where there are problems with standing up after eating. Mike doesn't stand but does take all of his meals sitting. We could never tube feed Mike during the night because of the reflux, so all of his feeds were done during the day.

We also had a surgeon try to convince us to do a stomach bypass. I got a second opinion from Canada's largest children's hospital as well as an opinion from adult medicine. They both said that they didn't recommend it and I'm very glad that we didn't go ahead (although it's hard when the surgeon is really insistant that he knows best!).

Mike will always take a proton pump inhibitor. He's had 2 fundos, so another one is not an option (as told to me by all 3 surgeons!).

Finally, it really really helped a lot when we also got the constipation under control.

Jeanette

[Paul from Australia]

The way that we give Grant the Vitamixed meals is via the syringe at a rate of 1 syringe full every 6 minutes. However given that your son is very sensitive with vomiting, you might need to slow the rate down considerably.

We have found that the meals have to be watered down a bit so that the meal can go through the PEG. We can't use the pump because even when the meal is watered down, it is too thick for the pump. But that is only our experience and other Vitamixed children via the PEG may well be fed via the pump.

Best wishes and we pray that you dear son does not need further surgery.

Paul, Alison and Grant

[littlebeacon]

Thanks guys.

Just got word from the paed that we are going to try Neocate Advance prior to seeing the gatroenterologist so that should be here by the end of the week. His runny bum has come back clear from the lab so I suspect its an intolerance of some sort. And today he seems to be coming down with a cold so his vomiting will no doubt increase. Glad my night carer is working tonight!!hehe

[alizesmom]

I don't think I can add much to the advice given. We are just starting to transition to a blenderized diet with Ciara after her second fundo in July. You may want to check into an allery component with the formula. Welcome. Karen

[littlebeacon]

Thanks Alizesmom

We are switching to the Neocate Advance which is non dairy so we can see if he has a dairy allergy, while I look more into the blenderized diet. And thanks for the welcome! I hope the transition goes well for you guys.

I have a friend who is also interested in switching too so it will be good to do it together.

:)

[JoD]

My has had one findo and it has partially undone. He had his surgery and the gtube placed when he was 18 months old. He was the king of puke! His story is much like Jeanette explains. We finally went against the advice of his doctors and gave up bolus feeds. Although he would through up every feeding he always took the next one with gusto. He stopped eating orally, all together a couple of weeks after surgery. We went against the GI and Surgeons advice and stopped bolus feeds. He was fed overnight very slowy. We would start at 8 pm and go a good 12 plus hours. We were lucky to get over 30cc/hour. During the day we encouraged him to taste things. It took3 years to get him back to eating orally.
Joanne

[littlebeacon]

Hi JoD

wow that is awesome that you got the oral feeding back!!! I would love to do that. Alex has major sensory issues though and is super unco-ordinated with his oramotor skills but he does like to taste things sometimes and occassionally eats some ice cream or a wee corn crisp, one that will disolve a bit on his tongue.

With him having a nasty cold he is on 20mls/hr on continuous. so will see how long i can do that for.

Everyones advice and personal stories are so good to hear. :)

[Tracy Sheppard]

I have no advice for you, but did want to say Welcome. It is a great group of people here. I will be praying for your little sweetie. Again, Welcome.
Tracy

[littlebeacon]

Thanks Tracy!!

I just had a quick look at your photos on Megans caringbridge page and had to comment on the one with her and her brothers!!! Its just gorgeous!! I have two older sons too who absolutely adore Alex. Its so precious. I must figure out how to put pics on here so i can show my boy off too!!hehe

:)

[Donna Thomson]

Hi again,
Nick's stomach emptying tests came back normal too. It wasn't till we got to London and they did the electrogastrosophy test (or whatever it's exactly called) that we found out why the tests were normal. The first third of the feed would dump too quickly and the second 2/3 was delayed causing the retching. The total time was normal so the regular stomach emptying test was normal. They found a section of the intestine near the top that was extremely dysmotile so sometimes, Nick even vomited what looked like stool. He always had what looked like diarrhea but he would be constipated much higher up causing terrible pain. It was an awful time for our family, but thank God, we got through it. Nick is able to eat a bit now too. It's too much work to eat all that he needs for nutrition but today he had some spaghetti and garlic bread. He did seem to grow out of the worst of it, that's for sure. Good luck, you can see that we have been through a lot of the awful hell that you are going through and we deeply sympathize.

xoDonna

[littlebeacon]

Thanks heaps Donna. Sorry your journey has been such a tough one! Here's hoping Liverpool do alot of winning for a long while!! :)

The delayed drainage makes sense because test only showed the first teeny part of the barium going through. He is currently on 30mls continual and he vomited about half a cup this morning so its obviously just pooling there.

All of these ideas will be great to take to the gastro guy.

Another question too Donna, I have a friend who has a 14yr old son with spastic quad Cp due to a mito disorder and she has talked about him vomiting up what she describes as coffee grinds which is apparently bowel related. I will pass on to her about your sons experiences and see of that could help her son.

Thanks heaps :)

[Donna Thomson]

!!!!! Oh dear. Coffee grinds is blood. That is very serious and is positively indicative of a bleed somewhere below. Nicholas had a gastro bleed and it's coffee grounds that came up. This is very easy to verify, but any GP would know that coffee grounds in vomit is blood. This should be checked immediately. Nicholas had a "mallory weiss tear" in his esophagus from vomiting so much and coffee grounds came out of his g tube with the retching. Good luck, Donna xo

[fireweed]

hi. i am so sorry your son and your family are going through this. i really thought donna's thoughts were very informative, as were the other ideas about food intolerance.

have the docs said anything about the effect of the dystonia on the fundo, and on the gagging?

i have a few ideas swimming around in my head, but only from my own experience and from the experiences that other parents and people with dystonia have shared with me. dystonia is so individual - and it may have little to do with the issue you are facing. i was just curious if the GI surgeons seem to be really familiar with dystonia and have thought about any role it might be playing?

fireweed

[littlebeacon]

Hi Fireweed

Sorry for my ignorance but what does GI stand for? Alex's dystonia has never been mentioned. They really havent looked into it much. They have always just said its reflux but I dont think thats solely the case. When he was smaller and was refluxing he would scream and scream when he vomited but since the first fundo the pain doesnt seem to be the same. He is sometimes uncomfortable during the vomit but the second its over he is grinning like a Cheshire cat. He always looks so relieved once he has been sick. Sometimes he is all 'rumbly' and I can tell he will be sick sometime soon and as soon as its done he is all relaxed again. He has never shown as refluxing on the barium swallows he has had. All they have really said is that he is just the type that the fundo's don't always work.

Alex's is usually labels as spastic quad but he has lots of random (but very cute) arm movements, he bashes his face alot and his tone isnt always super stuff, its sometimes not so bad. His physio was commenting on it a while back saying he wasnt your 'classic' spastic quad.

And Christchurch has only just recently had a paediatric Gastroenterologist so things have never really been properly investigated. So all of these ideas have been great.

and as far as food intolerances go i was always told alex was too underweight to risk trying any other formula. And I think to some point i have gotten so used to him gagging and vomiting i stopped questioning it.

I would be really keen to hear your ideas fireweed. They are all possibilities. The dystonic component of alex is something i have really never looked in too so your advice will be greatly appreciated!!

Thanks heaps :)

[fireweed]

little beacon,

I have some thoughts for you, but they are very general, about how dystonia has affected my guys GI problems (gastrointestinal? hope I got that right!)

And about how dystonia can affect the GI tract in general. But my biggest suggestion is that you need help from docs who understand dystonia. And from moms whose kids have dystonia and have had, or considered fundos. (we never did it, and it was only briefly considered.) I have heard a little bit about it - that there are some special issues with fundos when dystonia is involved, but I don't know enough to speak about it. :-( I just think it can cause some special issues. Because of spasms straining against the fundo and stuff - but I really think you need to talk to moms who know firsthand about this.

There are some great GI forums online - maybe someone here can help you find one? And I would definitely go ask there to find moms whose kids have dystonia.

Also, Can you consider - seeing if a neuro who treats dystonia is in your country, or visits your country at speciality clinics periodically? That person might be able to get help for you, by phone consult or by visit, from a GI doc who understands dystonia. Or the neuro themselves might be able to help set your GI docs on the right path? Maybe post here, the Braintalk GI forum, the Braintalk Dystonia forum, and the WeMove.org forums to find docs near you, and to find moms who have dealt specifically with similar GI issues related to dystonia?

I know the idea of travelling for medical care is very hard. I too live in a very remote place from a lot of docs. (very remote.) Travelling is very very hard. But I had to do, what I had to do. I just did. Things have gotten easier though since he was diagnosed with dystonia almost ten years ago.

We don't have money - so I got donated tickets, stayed in free or low cost housing for families on medical trips, etc. It was not easy, and my heart goes out to you if you have to consider it. But it was the most helpful thing we ever did. we're travelling now for medical care, but when I was taking a break to check this forum - which I haven't done in weeks, I saw your note and had to respond.

I am going to send you a personal message about my son's experience with GI and dystonia. I'm not sure it will help you, because dystonia, like spasticity, is very individual. Where it causes the worst problems is individual from person to person, even though the underlying mechanism is the same. But it helps us all to understand each other's stories, and how dystonia works, and then we can start to put the pieces together for our own child or ourselves, and see what can be figured out. (especially with the involvement of docs who have seen other kids with dystonia and the same problems before.)

So check your personal messages, okay? And try to stay strong. I remember the screaming and vomiting so much...like yesterday (shudder). But I do believe you might at least find new insight by looking at his problems through the lens of dystonia, and maybe even new treatment ideas.

For the first few years we kept treating primarily the symptoms caused by the dystonia - leg pain, these stomach and/or feeding problems, etc. That worked for some things, but other things haven't been so easy to treat for us. For some problems, it became clear, that what we really needed to do was to pay attention to the dystonia itself, or we would be chasing shadows forever. (that's what I mean by dystonia being so individual - your toughest to control issue might be stomach - whereas ours has been my guys legs, and peeing.)

So that is my best suggestion to you. Stay strong. There is lots of hope for our kids that answers can be found.

And it can only help to see if different foods help calm air in his stomach, irritation, reflux, and therefore any exaggerated dystonic responses your guy is having too! I won't be around for about a week - but I will try to check in later, okay? hugs to you on your journey - you are not alone.

[littlebeacon]

Thanks fireweed

I have sent you a PM also!! :)