Posted By Posting
Feb 18, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Calling parents of kids who have taken Neurontin
Hi, I posted the last post about anti-depressants being used for GI problems, and posted that the nortryptoline has helped my daughter a lot. It hasn't taken away everything and the GI suggested adding neurontin. I have it here but haven't started it yet. I am trying to decide how badly she needs another medication. While I recognize that she still has trouble, I wonder if it is bad enough to warrant another med that in my mind is a heavy medication. On the other hand, I don't want to wait for her to get bad enough to make it painfully obvious that she needs it either. I am so tired of watching her go from suffering to relief back to suffering again. The GI said he would try it and go off of it if it doesn't work or if she has side effects, but he said ultimately it is my decision and he will support us either way. It is a hard decision in my mind. We have had problems with many reflux meds in the past so it freaks me out a little to try another medication whose side effects are listed as slurred speech, dizziness, drowsiness, uneven gait, blurred vision, emotional changes, etc.. The one mom I got to ask said her son didn't have problems....hopefully this is the case for everyone else. So, my two questions for all of you are: 1. What specific symptoms and problems did your child take neurontin for? 2. Did they experience any side effects, and if so what were they and how long did they take to go away? Thanks for calming the nerves of a mom who is feeling really paranoid right now!!!!! Carla
Feb 20, 2005
Anonymous
Our experience
1. What specific symptoms and problems did your child take neurontin for? My son started taking Neurontin after being seen by the Pain Service. He had pain when he ate which caused vomiting. He had his stomach enlarged using his transverse colon so his stomach is one huge anastamosis. The pain doctor felt that the nerves healed in such a way that when he ate and his stomach distended, he perceived that as pain which caused the vomiting. After adjusting his dose a bit, he is doing much better with only rare vomiting. 2. Did they experience any side effects, and if so what were they and how long did they take to go away? When he first started taking Neurontin, he was more tired than usual. That happened each time the dose was increased too. Now after about 3 years or so on it, he has no problems at all.
Feb 20, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
question for the anonymous poster
Thanks for answering my questions. I have a question, but have to explain the basis for my question first. I read about pain in an article and it explained that after a common minor injury, inflammation starts. The nerves in the injured area sends pain signals to the brain. The brain then sends the message to the somatic muscles telling them to cramp or spasm. So you rest, take anti inflmmatories, scar tissue forms and it heals. Then it went on to say that for an unknown reason, in cases of chronic pain, even after scar tissue forms and it heals, the nerves in that area continue to send pain signals to the brain, and the brain responds the same way by sending messages to cramp and spasm. In essence, this is what I got the GI saying is what is going on with my daughter and the purpose of the medicine is to quiet the nerve signals, and relax the gi tract (in conjunction with the nortriptyline) so that after some time it may hopefully function normally without the meds. Does this sound like what your son's doctor was saying the medicine would do (and has done) for him??
Feb 21, 2005
Beth Anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Visceral hypersensitivity = chronic gut pain
Carla, We have had a few PAGER kids taking neurontin for chronic pain and nausea. I know several of the kids got relief from their nausea from it. I do remember things being a bit rough at the beginning but I no longer remember any of the specifics. You might be able to learn more from the gastroparesis support organization. They probably see this much more often than we do at PAGER. They are listed on the links page. I have talked to the director about some of the new treatments using an electrical pacemaker to improve gastric contractions just like cardiologists use for improving heart contractions. You also might have some luck looking up the various terms that different doctors use to describe the chronic pain your kid seems to be experiencing. The one that I hear the most at medical conferences is "visceral hypersensitivity" but there are several other terms floating around out there. Yes - doctorspeak has regional and preofessional differences just like English. Try reflex sympathetic dystrophy syndrome. (This may not be the exact term.)If I remember any of the other terms, I'll post them. (Right now, I'm low on caffeine and they aren't clicking.) Beth Anderson
Feb 22, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
To Beth
Thanks Beth for the information. I looked up visceral hypersensitivity and it only came up in articles about Iriitable Bowel Syndrome. Can one exist without the other or do they go hand in hand?? I assume, based on the name, that the gatroparesis org. is about delayed emptying. Chelsea used to have some level of delayed emptying, but has dumping now. I don't know if they can alternate or not, because now that she is on nortriptyline and neurontin, I eliminated all soy and milk from her diet, and she is on a strict diet to minimize dumping, I am not seeing it anymore (as of the last week or two--I know that can change). Do you think info from this site could still be helpful? Also, I looked up reflex sympathetic distrophy syndrome and when I read the symptoms, it didn't sound like Chelsea. If you remember any other terms, let me know. I appreciate it! Thanks again, Carla
Feb 21, 2005
Anonymous
That is very similar to what we were told
That explanation is very similar to what my son's pain doctor explained to us. To put it very basically, the chronic pain he has is due to nerves that are misfiring. Neurontin will calm the nerves. Interestingly enough, he told me that most of the GI/motility kids he sees need their largest Neurontin dose at bedtime. My son's dose at bedtime is double his daytime dosing and it definitely works better for him that way. I definitely think that is what Neurontin has done for him. He used to vomit with essentially every meal and couldn't tolerate G-tube feeds. Well....he still can't tolerate G-tube feeds (he has a GJ) but he is able to eat without vomiting. He doesn't eat what a typical teenage boy eats (nowhere near!). If he overeats he'll have pain as his stomach distends but it is tons better than it had been.
Feb 21, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
That makes sense----Are you Spencer's Mom??
Thanks for the response....you sound like Spencer's mom. His story is one I would never forget! So far the neurontin seems to be working, it has been a few days. no side effects yet either (at least that we can see). How long has he been on it?
Feb 22, 2005
Anonymous
Yep, its me
Yep, I'm Spencer's mom! He's been on Neurontin for about 3 yrs or so now. The only side effect he ever had was being a bit tired when he first started taking it or when the dose was increased. I'm glad it seems to be working so far. I know we were told not to expect to see an improvement for about 3-4 weeks so its really exciting to hear that you're seeing results quickly!
Feb 22, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
To Spencer's Mom
Hi, I am only seeing her sleep better at night, but the tiredness doesn't seem to effect her during the day. Do you think it's possible that it could work so quickly? I wonder if it is a coincidence because she came down with a bad cold the day we started it, and has been on cold medicine and asthma meds. We had eliminated milk and cheese from her diet and saw improvements, and around the same time we started the med, I took out yogurt and soy too because she seemed to be bothered by it. I am wondering if this may be the difference. I am going to wait a week or so, and try either the yogurt or the soy again to find out. I suppose it could be a combination of it all. I guess only time will tell!!!
Feb 23, 2005
Anonymous
well....
It could be a combination of things. Its good that she isn't tired during the day. I was glad we started Spencer on it during the summer because he was very tired. However, he adjusted well and was back to normal in about a month. Good luck and let me know how it goes
Feb 23, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
could be dosing
It dawned on me that maybe their dosing is different. She is only on one ml twice a day and she is only 2. They said to increase to two ml a day after 7 days but I am not going to because this dose is effective. I think that Chelsea's problem is mild, especially when compared to Spencers. I imagine he needed a high dose. She is pretty moody and tantrum prone lately but because there are a few possible reasons for this, I don't want to jump to the meds being the cause just yet. What is more likely to me is that we are expecting a new baby in 8 weeks and she is aware of it and the fact that she is 2 going on 3---probably very normal developmentally!!!! I will let you know how it goes, thanks for the help.....
Feb 26, 2005
Anonymous
I don't know
I don't know if the dosing is related to the extent of the problem or the child's size or how they react to the med quite honestly. He takes the capsules and his dose is 400 mg AM, 400 mg PM, and 800 mg bedtime. The pain doctor he sees says that his GI kids do better with a larger dose at bedtime. I don't blame you for not increasing the dose if you are seeing improvement on the dose she's currently getting.
Check with your
doctor first!