Posted By Posting
Apr 07, 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
Neurontin question--please help!
I posted the other recent posts about antidepressants and neurontin for pain. To make a long story short, nortriptyline and neurontin helped my daughter's pain a lot. She has been on both since February. The GI hoped she would only need it for a few months. The neurontin seemed to make her really emotional, moody, and tired. She had more tantrums and was way more irrational. She also was doing a lot better, so we just weaned her off the neurontin. I took two weeks to wean her because I did it really slow. Everything was fine throughout the whole process but now she has been off of it for about 4 days and last night was a really bad night again. I heard her reflux over and over again around 11pm, then by midnight she was crying in obvious pain and it lasted on and off until 4 am. I had to hold her upright in bed and rock her slowly to try to calm her and she is 3---she only needs this when she is in a lot of pain. She didn't want anything and wouldn't tell me anything--she was really upset because she wanted to sleep. I don't know if it is the withdrawl of the neurontin or not--I don't want to rush her back on it because it does make her so tired and emotional, but I am not sure if it could be anything else. The only other thing I can think of is that we just recently found out she has a mild allergy to milk and soy---I read that some kids tolerate soy oils and some don't. She had regular peanut butter at dinner (6 hours before this started) that contained soy oil---am I in left field to think that this had something to do with it 6 hours later instead of the withdrawl of the neurontin? The two meds worked so dramatically well that it was obvious that there is a neuropathic pain problem. But I heard her reflux and I don't know why---I was told the neurontin doesn't minimize reflux, but if it calms down the gi tract and relaxes it so much that you don't wretch--why wouldn't it minimize reflux? If it doesn't help with the reflux, then maybe a stronger ppi dose??? The reflux episodes are very isolated now to when she eats something wrong, they aren't all the time...so I don't know. They were isolated to when she had milk or soy while on the neurontin. Any thoughts?!
Apr 08, 2005
Anonymous
I'm not sure if this will help but....
I'm sorry she's having problems. I wish I could answer your questions but I can share our experience. With Neurontin, Spencer still refluxes. It does nothing to stop his reflux. Because of the changes in his anatomy, he has no anti-reflux mechanism (LES or fundo) so he is pretty much free to reflux. Neurontin is what makes the difference of being able to eat orally vs vomiting with every meal. As it was explained to me, neuropathic pain (at least in Spencer's case) is where the body perceives something normal (like the stomach expanding for food during a meal) as pain because the nerves have been damaged. When things are bad and before he started Neurontin, he vomited at nearly every meal that was more than a couple of bites. With Neurontin, he still gets stomach aches if he eats more than he's able to handle and he can't tolerate G-tube feeds as a supplement. He gets J-tube feeds. I do know that if Neurontin is stopped, it can't be stopped quickly but don't know what the wean schedule should be like for it either. I wish I could answer your question as to whether the bad night couldl be related to stopping Neurontin or the peanut butter. I would give it a while longer and see if she continues to have nights like this when she hasn't had peanut butter during the day. I hope things get better.
Apr 08, 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 explanation helps
Thank you, your explanation makes sense. I spoke to her GI yesterday and they do think it could be the peanut butter considering Chelsea's history and what they have seen in other kids hwo have soy allergies and have soy oil. We are giving at least the weekend to see how things get better. I was also thinking that a withdrawl effect could go away after a few days. Yesterday she didn't have soy oil and she only woke up once last night lasting only a minute at 4 am. Very different night. We decided that as long as the night isn't the same as Thursday night or worse than that every night, we would try to hang in there without it as long as possible. The goal is to find out if it is the soy or the neurontin. If we start it again, I want to know without a doubt that it is what she needs. Does Spencer have side effects with the med? How long did he have them if he doesn't have them anymore? I decided if she really needs it, we would do it with or without the side effects, but I am wondering if after awhle the body adjusts and they go away...how long though?!
Apr 08, 2005
Anonymous
I'm glad it helped
Spence didn't really have side effects. For the first couple of weeks he was tired but once he got used to the dose, he was fine. He had to adjust to each dose adjustment also but then, he's been fine with the dose.
Jul 01, 2006
kimgbb
Kim
neurontin
My daughter takes neurontin. She is a seevere refluxer and has severe esophegeal spasms. The neurontin has helped with the pain, not completely but it has made a difference.
Check with your
doctor first!