Longtime lurker new poster
 

Thank you Jen (jjbeck) for encouraging me to post a question here. (I actually found BT2 yesterday) I have lurked at BT a long time when I first asked questions about my DD many years ago (she has absence epilepsy). Since then it is my youngest whom has presented us with our "greatest adventure yet"..

Very quickly he was born at 27 wks, had a good preemie course but GI issues started to creep up. Today he is 6 yrs old and has a dx of intestinal dysmotility resulting in the need for 100% G tube feeds and a colostomy. In April of 05 he was dx with epilepsy after several TC seizures and a "positive" EEG. Some myclonic jerks have shown themselves and we still struggle for complete seizure control. His seizure meds are Tegretol and Frisium....Neurontin is used for neuropathic pain (visceral hyperalgesia) and seizure control...Cisipride and Domperidone are for his motility ...Losec for acid control and Senokot for stooling. He is a very small 31lbs but a decent ht of about 41 inches.

Whew..that said my question is...Ethan currently uses his G tube to take all his feeds and medicines....we are switching to a GJ tube that will feed directly into his small intestine (there will be no G port) and I was wondering if anyone knew if this could or might effect how his seizure meds will effect him or how they are absorbed. I have put a call into our neuro but she is currently not available...the tube is likely to be placed within a week...the GI has not changed any of their meds dosing or timing but I just wonder about his seizure meds ?? Any one have any info or ideas about his?

Thank you all so much...i have always found this board very useful and informative...thank you for letting me ask my question.

Karen

proud momma to Kiana 12, Nicholas & Alexander 10 and to Ethan (my ex-27wker now 6 yr old, dx of neuropathic chronic intestinal pseudo-obstruction of small intestine, large colon obstruction at the **** sphincter and visceral hyperalgesia.....loop colostomy,100% G tube fed, continuous feeds...generalized TC seizures....my hero, my boy)

Glad you finally came forward and joined us Karen. I have no advise on G or GJ tubes and meds. I am sure one of the moms will be able to help you. You have found a great group of people here. It is so nice to have it....
Good luck and hope to hear more from you
Tracy

Hello Karen!

I don't have any experience with G or GJ tubes but wanted to welcome you to our wonderful little group. We are looking forward to seeing you around here and back at BT when it comes back to life.

I know there are some moms here who have kids with tubes and seizure meds. Jenelle has a tube (G, I think) and seizures. Hopefully, her mom (Kelly) will be around soon.

(((hugs)))

welcome karen :D

Welcome - unfortunately I can't help as I've only experienced NG and G tubes.

If you can manage to subscribe, then this list can be useful (I found it useful when I first got a g-tube): http://members.iinet.com.au/~scarffa...cache/129.html

xxx
Swift

Hi there!
 

My son Nathan had a G-J tube placed last December because he could not tolerate his feeds (would throw up everything I would have just fed him-even overnight slow feeds). He had the G-J tube for about a month so I have a little experience with meds. Nathan gets Chloral Hydrate at bedtime for sleep. I noticed that it worked a lot quicker when it went into the Jejunum as opposed to the stomach. He would fall asleep with 5 to 10 minutes when it normally takes 30 to 45 minutes.
He also has myoclonic seizures which have been greatly controlled with just Depakote and Klonopin twice a day. The doses for those meds were not changed-but again I think the onset of action was faster with the Klonopin (he'd calm down quicker).
He had a fundoplication in January which was the absolute BEST thing we could have done for him. My son had to be held constantly for his first year and a half or he'd hold his breath and turn blue (due to undiagnosed reflux). He'd do this 10 to 15 times a day. After the fundo, I had a new child. He wouldn't ride in the car without ear-piercing blood curdling screams. Now he is so content in the car-he LOVES it. It is so sad to think he was in so much pain for so long.
After the surgery, we switched back to just a Mic-Key Button G-Tube and he has been doing pretty well. He now gets lots of real food through his tube that I throw into the blender and Pediasure overnight.
A really good site for tube feeding parents is Parent 2 Parent
http://www.parent-2-parent.com/forum...isplay.php?f=8
There are tons of really experienced tube-feeding moms (and a few dads) and lots of the kids have G-J tubes. Hope this helps!

Thank you so much for all your experiences....as far as P-2-P I am all over that site (check out the motility forum;) )...they are very good for info...thank you so much. From the places I have asked this question it seems that the greatest effect is in the absorption and the "quicker" nature of the effects....so i guess my worries are "better" nowhearing that. The neuro did call me back late last night and while she doesn't get much of Ethan's GI stuff was pretty much of the same opinion....she said to just watch carefully as we get started with the new tube. I still wait for our appointment .

Thank you all for the welcome and helpful information.

I am part of that list..thank you. i wish it was a bit busier sometimes but it has been very helpful.