Follow by Email

Thursday, November 20, 2014

At Last, No More Phenobarbital!

Continuing from my post last month, Levi's issues were caused by cutting his back molars.  It's hard to comprehend that kind of consistent suffering could have such a simple cause, but Levi doesn't eat by mouth or chew on toys, so it takes him much longer to cut teeth.  On top of that, pain decreases the body's tolerance for seizures.  As soon as he started feeling better, he got an ear infection that the first antibiotic, amoxicillin, didn't touch it, so he's on a round of Ceftin instead.  It seems to be working well.

One week ago Levi took his last dose of phenobarbital.  He's been on this med since he was three weeks old.  The plan was to wean him off after a year, but that didn't happen.  He'll be four in a couple weeks.  Our neurologist warned us that the last step in weaning this drug is the hardest.  Basically, he is in withdrawal, even though we have weaned very slowly over the past year or more.  He is irritable and has a hard time sleeping.  He's been staying up until midnight or 1, and remaining awake the majority of the day.  It's sad, because we can see how tired he is, but he's just unable to stay asleep.  It's all worth it, though.  Phenobarb impairs learning, and each step down we have taken has brought more clarity and understanding to Levi.  We see him doing more.  He's actually able to hold his head up most of the time now, and can even sit alone on a chair or couch for a period of time before sliding over.  This drug also hinders the liver from absorbing other meds effectively.  The hope is that this has been the cause of his need for high doses of other meds, and that we can begin weaning others as they are better absorbed.

Please continue to pray for Levi.  We appreciate all your prayers and support!!

Levi ready to go to school.



Our grand babies Charlie, Roni, and Carson.



Levi sitting on his own in the doctor's office.



Daddy and Levi dressed up for Halloween.



Wednesday, October 8, 2014

Not Sure What's Going On...

Over the last couple months Levi has not been feeling well.  He is fussy, constantly frowning, and those precious smiles we had gotten so used to are rare.  He's been cutting his back molars, and teething has always been hard for him, but I wouldn't think it would cause this much consistent pain.  For the last five weeks, he's missed all but 2 days of school.

As usual, my mind runs nonstop wondering what is going on and how we can fix it.  He has been to the pediatric dentist three times, but other than cutting teeth, his mouth looks good, although now his cheeks are swollen.  We took him to the ER once, which showed a slight ear infection, and had an EEG performed, which showed that the majority of his jerking episodes are not seizures, but instead a startle reflex.  Great news!  He's been to the pediatrician twice and received a clean bill of health.  The orthopedist gave him another round of botox injections to relax the muscles in his arms and legs.  The dietitian decreased the fat in  his diet.  So far none of these treatments have taken care of the problem.  The formula change just happened yesterday, so it's too early to tell if that will have an impact on the gas and tummy pains he's been having.

To top it off, Levi's insurance changed this month and he's had to switch to a new pediatrician.  She is at Cardinal Glennon, so I feel fairly confident that she must be a good doctor, but she doesn't know Levi.  I'm debating whether or not to make an appointment.

We know he's teething.  It's obvious, and the dentist confirmed it.  I guess I'm just afraid we're treating symptoms without getting to the underlying cause.  Teething seems to simple, but hopefully that's all that's going on and Levi will be feeling better once they pop through.  Prayers for his healing and relief of pain are greatly appreciated!!


Sunday, September 7, 2014

OLDER Pictures

Thank you for indulging my trip down memory lane.  These pictures are taken before Levi was born (for the most part), when Tommy and Miranda were younger.  



























My 30th birthday party :)


My Uncle Delbert, who has since passed away.


Tommy's graduation.


Here comes Kylynne.
















I just love this picture!  It reminds me of Jesus and Levi.














Baby Tommy :)