Well, as if seizures weren't enough trouble, it seems Jenelle has some other issues to address concerning her GI Track. Neurologists are only concerned with problems involving the "head up", and sometimes we are so intent on stopping her seizures, we never really address other issues for Jenelle. I'm glad we had our GI Referral today - a lot of issues that are long overdue for our girl were addressed!
As if I don't give out too much information already, to my knowledge this morning, Jenelle hadn't "pooped" since last Saturday, after a fleet enema of course! The doctor felt she was "backed up", so there was nothing to prove there. I first met with a nurse practioner who spent an hour getting Jenelle's extensive history, as well as family history. Because my shoulder is still hurting - I'll cut to the plan of action! We are going to spend the next two days "cleaning out" Jenelle - she will be taking LOTS of Milk of Magnesia, and after that cleans everything out, we'll start a daily prescriptive drug called "Miralax" (which is the one UCLA recommended as being good for the Keto Diet.) So Jenelle needs a new drug to help keep her from being constipated from the drugs she is already taking!
In addition, they want to order an Upper GI Swallow Study to see if Jenelle is aspirating while eating. Jenelle sometimes coughs when taking her bottle, spits up after a meal, and/or appears to choke once in a while, so we think with her low muscle tone, there is a danger of choking and/or pneumonia from aspirating while eating. This of course may mean we're headed for a G-Tube. They also want a study done by an OT to see if she is swallowing properly, and chewing properly. Our own OT has said Jenelle is doing this fine, but it will be good to have a second, more thorough opinion on the matter (especially as it relates to GI issues.)
And finally, they'd like us to take Jenelle off milk completely and put her on Pediasure as they are concerned that she is "failing to thrive." Jenelle lands on the bottom 20th percentile of weight for her age and we've never been concerned before because of her weak muscle tone. I just spoke to UCLA and the dietician was not concerned with Jenelle's weight, and Pediasure is not something Jenelle can take on the Ketogenic Diet. UCLA did say it was OK to give her the Pediasure until we are admitted so as to get Jenelle used to not drinking milk. The good news is that the GI Doctor felt there was nothing in his opinion as urgent that would prevent us from starting the diet. Jenelle on average "poops" every 5 days (imagine the constipation?) and they explained that once we get her pooping regularly, we may actually see a "decrease" in seizures as well, as the constipation can add stress that can lower the seizure threshold - makes sense to me!
By popular request (or rather, by popular demand) I'm attaching a couple of photos of Jenelle's new "pink" AFOs! Yes, Jenelle is really that limber! Thanks for all the prayers and support - we'll keep you posted!
Thursday, March 03, 2005
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My daughter also has epilepsy. She was recently weaned from topamax. While she was on topamax I noticed that she was extremely constipated (she would sometimes go 5 days, also). I didn't know topamax was the cause until she was weaned off of it, because dilantin and keppra had recently been added to her "AED cocktail." She has been off the topamax 1 1/2 mos. and she now has regular b.m.'s. Just wanted to mention this as maybe it is attributing to Jenelle's problem as well.
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