Posted By Posting
Dec 23, 2004
Christine (Jake's Mom)
Jake had the Manometry Motility Test done
Well, Jake had his Manometry test done at Children's Floating on Tuesday, and with this test being the end of the road to find out why Jake is having these problems...we were VERY happy to FINALLY get some answers... Yes, that is right, They were able to find out what is wrong with our little man. Jake has some called Neuropathy, this is a widely used term for Nerve damage. His falls in the catagory if Autonomic Nerve damage, which effects the GI system. Which is why he is has the chronic vomit and diarrhea. At this point we do not have all the details of how serve the nerve damage is. The DR still needs to look at the tracings from the test and measure things. Unfortunately since he had this test after the fundoplication, we will not know if he had this problem prior to the fundoplication or not. Although we do know that by having the fundoplication, there is a good chance a nerve called the Vagus nerve was damaged during the operation, ( this is a long nerve that runs from the brain stem all they way to the bottom of the Large intestine. If this nerve is damaged, some of the problems that Jake is having can be caused by this. But again, they told us there is not way of finding that out. But since he has been worse after the surgery was done, the Drs. are looking at this as where the nerve damage came from. The Drs did tell us once the damage is done, it cannot be fixed. I spoke with his GI at Children's yesterday who was excited that they test was able to give us some answers, and she reassured us that there are meds out there that can be used to make the vomiting and diarrhea better or gone altogether, so that was very encouraging to hear. At this point, we won't know what the next steps are for Jake. We will be going to the GI's either the first week of Jan or second, to discuss what is next. They still want Jake to have the dumping test done,( this is testing his blood surgars over a period of 24 hours or so) but they are going to try to work it where he does not have to stay in the hospital, but that is not for certain. Also Jake will remain on the J-tubes for sometime now. We did talk about starting to wean Jake from them if we did not find a motility problem, but they told us that if there was one, the course is usually J-tube feeds. So for now, he will continue with this, but they want to work on getting him on a higher rate so we can at least try to get off 24 hour feeds. Now for a little information about this test. First I have to say we are so fortunate that Jake was able to have this test done. There are two hospital's in the country that do this test, Floating's in Boston and CHOP (The Children's Hospital of Philadelphia). The waiting list is extremely long, but because we live in Boston, we had to wait 3 months...the longest three months of our lives, especially since Jake has been so sick, with two episodes of pass out from the vomiting. Back in Sept, Dec seemed like years away for us. We got into to town on Tuesday morning at 6am. They than brought back Jake back to OR to insert the Manometry tube. Because Jake had a G-tube, they were able to thread it thru the G-tube whole (the removed the g-tube). They usually place these down the nose. This is a long tube, and at the end of it, there are 5 little sensors. The tube is placed into the stomach, and than with 5 syringes on the outside of the tube, the Dr pushed the syringes in and the 5 sensors where released out of the tube and three where placed in different part of his stomach. (They call it octopus arms, cause that is what they look like when the are released from the tube) One was placed by the pylorus, where the opening of the stomach is from the esophagus, one on the side of the stomach, and one at the bottom pylorus, where the opening into the intestines goes. Than the other two where threading into the small intestines. They were than hooked up to this huge pump machine, and each 5 sensors had there own port on this machine. There was a cylinder of pedilite that is infused into all 5 of these sensors over the next 7 hours, and Jake had to remain in bed the whole time. They were also hooked up to computer that showed all 5 sensors. We were able to see if Jake's stomach and intestines had any contractions. (looked similar to when you are hooked up to a monitor when you are in labor)He went the first three hours with still no food. Around 10:20 am they gave him an IV med called Erythromycin, they use this med as an antibiotic, but it is also effective in helping move food faster thru the stomach. Jake responded this med, his contractions in his stomach so horrible, I know that cry now...The pain he was having was heartbraking for me to watch... after 10 LONG mins, the contractions stopped, and he started to feel better. But the fact he responded to that was a good sign, just not sure if the pain he had was a good thing. They waited 40 more mins, and than gave another med. I am sorry I can't remember the name, but it was a shot that was given in his thigh, this med is to help the small intestine move things thru faster. To be honest, I could not tell by the monitor if he was doing anything. He than was able to finally eat at 12:35pm. He was so hungry, he had not had anything to eat since the night before at 5pm, which I think might have been a couple spoons of soups and I think some ice cream, so he was starving. Jake wanted grilled cheese, chicken strips, French fries, milk and ice cream. He did really good. He had a chicken strip, he ate the middle of the both pieces of the grill cheese, just not the crust, about 4 French fries and two sips of milk, He than had three spoon fulls of ice cream. He only had 15 mins to eat. The nurse told me that when there is food in the stomach, we should see a lot more contractions, cause that is what the stomach normally does, it contracts to brake down the food. Well, for Jake, all 5 sensors were flat lined, which meant he had not contractions at all when food was in his stomac, not even little ones. So in other words, it just sat there. They also measured his belly every hour, and even before he ate, his belly was getting bloated, the nurse said it had to be from just from that small amount of pedilite that was going in. Of course after he ate, his belly got bigger, and stayed that way for quite some time. About 30 mins after he finished eating, Jake started to get uncomfortable. His belly was huge, he felt sick to his stomach and he was in a lot of pain, and just cried, but still no contractions. The worst part there was nothing I could do for him, usually I would vent his g-tube, but during the test I could not. About 3 hours later, the test was coming to an end, and he still had no more contractions in his stomach, but the middle part of the intestine was having contractions, except they were constant. They were high sharp peaks, and they was no spacing between them. Jake was not in pain, in fact, he just laid in bed watching Toy Story 2. The test finished up at 4pm. The nurse removed the end of the tubing from all 5 ports, and pulled the sensors back into the tube itself, she than just pulled it from the stomach. She inserted the g-tube back in, and he screamed murder, he just cried and cried, and was shaking. His knees were pulled up to his chest, and was stiff. The DR wanted Jake to have an x-ray to make sure the g-tube was in place. At this point we were able to vent him, and the food just came right out of the tube. Which meant his lunch never left his stomach. The x-ray was fine and the tube was in the right place. We went back downstairs and that is when the GI came in to tell us there was defiantly a problem. And it now makes sense why Jake is getting so sick. He reassured me that we have made all the right decisions with his care so far, and this is something that we never would have found out unless we did this test. He than said I really want to look further into these, before I can tell his Drs. where my concerns lay, but he wanted us to know that it looks like has nerve damage in the GI area. We are still not sure if it is just his stomach, or intestines or both. We go back in two weeks to see him as well for the final readings. We got home, and about an hour of getting home, Jake got sick, and it was his lunch. It is still so hard to watch him like this, but I feel like a huge weight has been lifted off our shoulders.
Dec 23, 2004
Anonymous
Manometry test
Several other facilities also offer this -- so if you aren't near Philadelphia or Boston, don't worry --> you may be near one of the other offering centers.
Dec 23, 2004
Christine
Not the Antro-duodenal Manometry test
Jake had the Antro-duodenal Motility Study. Our Drs are at Boston's Children's, and they do motility testing, but not this one, The Dr that did this test was the one the one who told us that it was these two hospital that offer this. I am sorry I was not clear as to what Manomerty test, this inculdes just the stomach and first part of the small intestine. I would be courious to know where else. I know many children that struggle with what my son does, and some come as far as FL and CA to either Boston or Philly. So please, if you know of other places that do THIS particular Manomerty test, please inform us.
Dec 24, 2004
Anonymous
other AD Manometry facilities
From a quick google search (I put in pediatric antroduodenal manometry as the search), it appears that some of the other offering centers for this particular test are Johns Hopkins in Maryland, duPont Hospital in Delaware, Medical College of Wisconsin, Long Beach Hosp in California, Cleveland Clinic, Cincinnati Children's, KU Medical in Kansas. I stopped searching after these hit, but I am sure there are more ..... I am not giving advice to anyone -- I am merely suggesting that people search a little for it and then contact the facility to see what they do. I know that people come from all over to Floating for that test; we did, too. And we were told (by them) the same thing: that only they and CHOP do them. However, I wish we had researched other facilities at the time and am only suggesting that others may want to do so if they can. I am glad you had a good experience there and I sincerely wish Jake all the best. I hope things work out for him.
Dec 26, 2004
Christine
Thank you
Thank you for showing that me that., Again this is what they told me, cause our GI's at Boston's Childrens had mentioned they wanted to do it ( long story) but we had waited so long, we would have had to wait longer if we choose Children's to do. When I mentioned that to the nurse she proceded to tell me that Children's did not do this test, it was just them and CHOP..I did think there were more places, but what did I know. When I read your reply, it seemed that being short and rude, and I am sorry I mis read that. We had a wonderful expericen with test, they are not Jake's GI's, it is just this was the only place we were able to get into, and I feel they are a good hospital, so for the test, very happy, and will get the full readings on the 5th. Do you mind me asking if you you had a good experience at Floating or not? I am just curious. And again, thank you for explaining this to me, and we are just happy that we finally have an answer to why Jake got so sick after this fundo.
Dec 26, 2004
Anonymous
I apologize for my first reply being perceived as rude because it was short -- I did not intend it that way; I merely meant that others out there who are not in the Boston/Philadelphia corridor shouldn't feel hopeless about having access to this test. You had no way of knowing that test was offered anywhere else because Floating goes out of their way to tell you that only they and CHOP offer it. My post had nothing to do with you but everything to do with telling others that despite what Floating tells people, there are other options out there. I am not doubting that it is a quality hospital and I am glad you had a good experience with this test. It is even better to finally have an answer to why your son was so sick. We are glad to have gotten a definitive diagnosis from them as well. Many, many people have had excellent experiences there. Unfortunately, we did not. The whole point of this was to let others know that they may have access to this test somewhere else in the event that they are not close to either place. I hope you, and your family, find some relief from this whole thing soon. You, as well as everyone else here, have certainly been thorough enough. Best of luck to you all.
Dec 31, 2004
Anonymous
There are other hospitals that do the testing. Actually, CHOP doesn't have a motility specialist or motility testing equipment. Childrens in pittsburgh, Cincinatti, KU Medical Center, UW Milwaukee I believe are the other major centers. DuPont in Delaware has a newer motility lab but I believe the testing is most accurate when done by one of the more prominent motility specialists like DiLorenzo.
Check with your
doctor first!