Hello, and Thank Goodness for this site.
Our son was born at 28 weeks. He was diagnosed with severe reflux. His lungs and heart were damaged from the amount of formula he aspirated. He had a fundoplication at 5mos with a g-tube placement for venting only as he always fed by mouth. He had 3 esophageal dilitations. His g-tube was removed at 3yrs. He is now 5yrs. and suffering from SEVERE 24/7 nausea. We have tried EVERY med under the sun. Docs in NM, where we live, think he is suffering from a motility disorder. They say the nausea is coming from his intestine(s) as all stomach meds are ineffective. Our son is extremely medicalized from all his time in the hospital over the years--at times docs worried he was Autistic--he is not Autistic but, medicalized. Our NM docs want us to go to Ohio to see motility specialists. Is anyone out there suffering from these symptoms with a relatable story? We feel so isolated...so wary...so tired...and this is nothing compared to what our Sweetsie suffers each day--constant nausea. It is desperate, desperate. Anyone with any info...PLEASE, please contact us. Thank you, ali

Oh good, you found us! :D

I PMed some friends who will have some words of encouragement I am sure when they get the messages they will check in. Just wanted to send you some ((hugs)) from all of us at infant reflux disease. It is so heartbreaking watch our little ones suffer and I know about just wanting someone to be able to fix them and how frustrating it is when they can't. So, are you considering Ohio then? Which hospital? Columbus?

And what about emptying problems?

We are considering Columbus (Children's Hospital of Columbus Dr. Dilorenzo.) The tests will be quite invasive. Our Hugo has trouble with anesthesia. He also has trouble with IVs. We've had him anesthetized for a blood test once. He has violent reactions to general anesthesia, Chloral Hydrate, Versaid, etc. Sedation is almost impossible. IVs and blood tests are as well. It is so frustratingly COMPLICATED. I can't imagine Hugo with another NG tube for 48 hrs + fasting, etc. which is what one of the motility tests entails. He will be beginning Kinder in August and has just began to interact. Ugh, the thought of more hospitals. At the the same time crippling nausea is no way to live. If only there was an answer...He also has BPD, asthma, and suffers pnuemonia three times a year. Thank you so for writing me back and enlisting others... thankful, ali

Hugo's gastric emptying scans are always inconclusive...a bit slow, each one. ali

Wow, about the sedation problems! Oh my goodness, I am interested then if it is Columbus, I have heard wonderful things about them and actually considered taking Eli out if we couldnt get the people we wanted at UCLA. Is the pneumonia caused by reflux or a weakened system caused by the reflux, Eli has had problems with both.

What do they use if they cant use what you listed? Has he had any procedures for the emptying? Is it something else besides DGE they are thinking it is? That is what I took from that if the intestines are causing problems with nausea. He has been tested for DGE and treated for it correct? When you have the fundo without a pyloroplasty and you have DGE it can have the same type of symptoms. It is a big no no, but I am sure you and the Drs are aware of that. In fact GIs will/or should always check for emptying problems before fundo because a fundo will make emptying problems very serious!

He had a delayed gastric emptying scan/result before the fundo...is that DGE? This was back in 2000 before his fundo in 2000 as well. His latest emptying scan was inconclusive with a bit of a delay. We have to use general anesthesia if it is imparative. However, his recovery is...horrific to say the least. They usually end up inducing a Morphine-coma...it sucks. love, ali

wow, that does suck. Ya, the gastric emptying scan. It can be serious, and it sounds like it could be that he is having emptying problems and with the fundo it cant come out (that is why they dont do fundos on kids with emptying problems unless a pyloroplasty is done) so it is sitting in there rotting and not emptying fast enough and nauseating him. That is just one theory though, but its a good one. Has he tried any emptying meds?

I would like to say hi and welcome to the board. I am sorry that your little one is having so many issues right now. I have four children all with reflux,three have had fundos done to correct it. My oldest child is 12 and has had severe problems since his first fundo with swallowing and emptying issues.

He requried a second fundo done because his wrapped slipped causing food to lodge in his esophagus requiring many trips to the hospital to have food retrivals. He had his fundo dialated many times but this never helped and actually made him worse at times. He has done much better with the second fundo with the swallowing issue. He has had less things get stuck and has only had minal number of food retrivals in the last four years. He still has major motility issues though and they just seem to continue to get worse as time goes on. He is on a drug for motility that is not approved in this country yet it is domperdione.(he is in a study with this med) I have not seen it do major changes but has made some improvements.

As for seeing Dr Delorenzo that would be great he is one of the top three motility specialist in the country. Justin had seen him on several occassions before he went to Ohio,he was at Childrens in Pittsuburgh prior to that. He is very good and has some great ideas and protocal on motility issues. If you are going to see him set up your appointment soon always a waiting list to see him.

I was wondering what kind of studies your son has had already? And if you need anyother questions answered please ask me and I will try to answer them. I do wish you luck.


Melanie

Hugo has been on Reglan, Erythromicin, Phenergan, Zofran, Prozac, Prevacid, Pepcid, Zantac, Tums, Mylanta Gas, Gas X, Beano--with every meal, Propulsid--before the ban, etc. He is H-plilori (sp?) positive but is negative for ulcer on endoscopy. So glad Dr. Dilorenzo is so well known...spoke with them today. Hugo had his panel-presentation, will have our schedule tomorrow. I pray for answers but fear the testing. I used to be so strong...no more. I cannot imagine four babes in need of fundos--goodness, what your nights must be like...I will think of you tonight if I am up, Melba. Erin, wouldn't drugs like Phenergan and Zofran work if the food was sitting in his tummy? Have you experienced this type of constant nausea. Thank you for answering me...Thank you so much. love, ali

I am not sure. Eli was always nauseated, even to the point of not being able to ride in the car! But, nothing, I think like your going through :D Keep your chin up! Your in my thoughts and I am hopeful that your trip to Ohio will give more info, please keep us informed!

Erin,
Did Eli ever find relief from his nausea with drugs like Phenergan or Zofran? Hugo is sick in the car as well, although cannot vomit from the fundo. They only time he finds relief is if he is sleeping. They think the prob is in the brain, although his brain MRI was negative. Thought Prozac or Zoloft would help regulate the seratonin therefore clueing in the nerves with digestion but to no avail. Thank you so much. I'm off to bed. Sleep well. Thanks, ali

Ali,the zofran and the phenergan never worked for Justin to help ease the nausea. Dr Delorenzo placed Jusitn on evalvil for pain,zelnorm for motility,and periactin for appetiate increase. For him the meds never really helped to take away all symptoms but did help some.

The testing that was done by Dr Delorenzo was upperendoscopy and motility studies of his esophagus. Both test came back negative but they concluded he had problems with motility in his esophagus due to the food getting stuck. Justin also went to DuPont Childrens hosptial in Delaware to see another motility specialist for second opion. There they did motility study of his esophagus,stomach,and small intestine. We did find out that he has dimotility problems in his stomach and small intestine.

At that time the docs decided to keep him on all the same meds because there was nothing else to be done at that time. From what we have learned from these docs is that there are other med options that they use so I do hope that Dr Delorenzo can help you. Keep us posted.


Melanie.

Erin,I was wondering what meds the docs have tried to help with the nausea. As I mentioned in the previous post there are other meds out there that may help. I am sorry that all these kids have to deal with all of this. I just hate the roller coaster ride,wish it would stop and let me off.

Sorry that I have not bee around that much has been really crazy here with so many other things going on. Justin broke his foot so dealing with that and his fustrations because gi wise he is doing well right now. He is limited because of the boot on his foot and has it on for another 4weeks plus. I also have three bipolar children with two unstable so been busy. I do hope things are going better at your house.

I apprieciate the pm about this message,if I am not around feel free to do it any time. If I can help then it is worth it.

Melanie.

Thanks Melanie,

We used phenegren but it didnt seem to help, I just think it was the reflux/DGE and so that is why the phenegren didn't help, especially since he is fine since surgery. Wow, you have alot going on at your house Melanie!

And, Ali, wow, about them thinking it may be the brain and all the meds that have been tried, zoloft and prozac, wow. And, again, no the phenegren never made a difference for Eli, probably because he threw it up! Our docs said it would just basically knock him out so he couldnt throw up but he vomited in his sleep as well. Let us know when you get an appointment for Ohio! We wil all be curious.

Melanie and Erin,
Thanks for your replies. Spoke with DiLorenzo's team today. They will see us the week of Sept 5. I hope our NM docs will put Hugo on Zelnorm right away in interim just to see if it might help. Would LOVE to find something that provides relief w/o more hideous tests--I'm kidding myself I'm sure. Sounds like your kiddos' nausea stems from intestines as well...so curious. The only time Hugo has relief is when he sleeps. The theory is that the part of the brain that controls digestion is not working and/or the nerves in stomach and intestines are shot. That's why they prescribe SSRI's like Prozac. Some kids get relief from more seratonin. Wish it worked for us. But when sleeping neuro-transmitters ( the ones in question) stop firing. Sleep is golden. Hope you guys are having a good day...we are having a pretty good one--a lot of nausea but am able to distract him at times with play. Thanks again. love, ali

oh, poor little one! I couldnt imagine living with being nauseated all the time.... :shock: I hope you guys get the help you need, and soon! Put the date on the calendar for us so we can remember, if you would, please?

How does one access the calendar? thanks, ali

ok, on the boards index at the top, where it says welcome to the message boards, below it in blue is a link to the calendar, gallery, and chat I believe. Click on calendar, and it should direct you from there.

Ali,

I noticed that you posted on the calendar for tomorrow. Was that the date you were trying for, or was it supposed to be the week of Sept. 5? If it's a date other than the one that you're posting on, you need to move on to the next screen and type in the date.

Hello & Welcome !!
Sorry for being so delayed in welcoming you. My son is also 5 years old & has had the Nissen performed 4 times. His last one was just several weeks ago. As for the constant nausea and the fact that you have tried all the meds available, has anyone touched on the fact that perhaps he has developed adhesions from the surgery and they could possibly be disrupting the nerves thus creating the nausea ? My son 2 years after his 3rd surgery was experiencing very terrible pains in his chest; he had every test re-done to see what was wrong no one could find a reason for the terrible pain in his chest. When they decided to go back in and re-do the Nissen they found adhesions that were stretched from the esophagus all the way to the spleen & liver. Some people are more prone to adhesions then others. Perhaps your son is one of them. Just a different perspective being the other girls covered the other possibilities. As for the motility studies I sympathize for your son to have to have those. Noah had those preformed and it was a very difficult thing. Also, I really could feel your anguish about the Dr.s feeling your son was Autistic as we were told the same thing with our son. He was even placed on Seroquel for his possible Autism (which did help his pain a lot & he slept very well) any how I like the term over medicalized. I do hope your son finds relief soon. I know first hand how trying this can be.

Oh Dear, I will check the calendar and re-do. Thank you! :oops:

And to Raising Angels, Thank you so much for your story. I am very interested in this adhesions issue. Hugo is African American and develops keloid tissue quite easily. No one has ever mentioned adhesions to us. Does removing them improve the symptoms? How do they know if a kid has adhesions--I assume with surgery? How is Noah now after so many fundos? Thank you so much for writing to me... love, ali

Erin, I think I have successfully screwed up the calendar. I went to Sept and added my entry but it is not there. And the old-incorrect entry is still showing.Ugh. love, ali :oops:

LOL, Ali, we have all done that! It seems the thing to do around here! Dont worry about it, it can be taken care of.

Erin's right, Ali. Lots of people get confused with putting the right date in. You don't need to go to the Sept. calendar to make it work. Just go in the same way that you have, and after typing in all of your info., go to the next screen via the top. I hope that makes sense. I'll go in and delete the 2 entries about today. Let me know if you need more help with the calendar and what you'd like it to say.

Okay, Ali. I went in and deleted one of the Hugo posts that was on the calendar for today. If you give me the correct date, I can go in and transfer the remaining post from today's calendar to the Sept. one.

Oh, cool Janette! I thought Roni was the only who could access so IMed her, I guess I should tell her nevermind, Janettes taking care of it! :wink:

LOL Erin. Way back when she asked all of the moderators if we'd mind helping her with that function, but most of us were afraid to try accessing the calendar b/c of the same issues that Ali just had. Everyone was afraid of totally screwing up the calendar. I haven't done that yet, but one of these times... :lol:

Yeah, that calendar is pretty intimidating, glad you dont fear it :lol:

Thanks Guys...for the calendar help. love, ali

Thanks Guys...for the calendar help. love, ali
No problem, Ali, but I still need the new date so that I can transfer it over for you.

Ali.
It took us a long time to get taken serious. Noah went through so many tests and poking and proding. All which turned up very little except that his wrap was herniating (which doesn't always require re-operation) It really wasn't until we meet a good surgeon who suggested it. He was in Pittsburg, I will try and dig up his email address for you. I emailed him & he emailed me back his sthoughts on Noahs current problems. One of the 1st things he mentioned was adhesions and the fact that there is really no way of knowing until getting in there. The California surgeon who preformed the surgery couldn't believe the amount of adhesions he had found. They were spider-webbed every where as i mentioned.

Thanks Janette,
We will go to Ohio on Sep. 6

and to RaisingAngels,
Thank you for all your info. I'm curious as to how Noah was diagnosed with gastro paresis...what is the treatment? love, ali

Another question real quick: Does anyone's gerdling(s) experience stomach bloat? Hugo's stomach is ALWAYS distended...even with anti-gas. Could he possibly need his gtube again for venting?...can venting alleviate nausea? anyone dealt with this? thanks! love, ali :?:

Thanks Janette,
We will go to Ohio on Sep. 6i
Okay, it's fixed now, Ali, but is there a special appt. that you'll want us to remember on that day?

Ali,when Justin is bloated we know that his stomach is not emptying very well. We do vent his stomach when he is like this sometimes it does help and sometimes it doesnt. I was wondering if you use a bag when venting and if so is there food content that comes out? I know for Justin the bloating come from the food not digesting and sitting in his stomach so the gas drops do nothing for this only the venting which helps remove the food. I do hope that this helps some. If you have any more questions just ask and if can answer will do so.


Melanie.

yes, we have some gas bloat, not as bad now as right after surgery, that could definitely be adding to the nausea and would indicate his tummy not emptying. I know that the tube helps with this.

Thanks Erin and Melanie! I was hoping not to have to have Hugo's tube put back in as he has been w/o it now for 2 1/2 years...but if it would help--we'll do anything. Any of your little ones embarrassed by their tubes? love, ali

Ali,my son is 12yrs old and had his tube placed at 7yrs old. In the begining he didnt want anyone to see it but now he could care less. I think that the younger they are the easier it is. I know this because my other son had his tube in from 2yrs to almost 5yrs and it never bothered him from the start to show it to everyone. I do hope things start to improve for you soon.

Melanie.

Can Hugo burp ? Is he able to pass gas ? Does Mylanta help if you give it to him before meals ? Noah has has his tube on & off since he was 3 years old. He will go to Primary School in August with it and he doesn't seem to mind.

Hugo can and does burp but ONLY from above the fundo/nissen. I do give him Mylanta at times and Beano with every meal...I actually think the Beano has made 1% difference for the better...we'll take it! love, ali

PS to Becky, Thank you for helping me get Hugo's pic loaded! xxoo

Okay he is just too cute !!!!!! I want to kiss him !!!!!

Oh, he is a cutie!!!

Thank you! He's puckering up in this pic. His dreads are gone now though as it is hot in NM and he wanted a "big Boy" haircut. love, ali