The Tan Man

The Tan Man

Welcome to Thankful 4 Tanner

Hello all! And thank you for visiting our blog about our family and precious baby Tanner. Here you will always find up to date information about Tanner. I know sometimes it's hard to get ahold of us when you are wondering how Tanner is doing. So here we will post information we recieve at his doctor's appointments. We will always post Tanner's biweekly weight checks and overall growth. We'll post all of his accomplishments that seem to be coming daily. He's always trying something new. Thanks again for visiting and caring about our precious gift from God.

Monday, March 14, 2011

Some updates

Tanner had an appointment with his new neurologist last Monday. I LOVE her!!!!! She just came from Dupont and 90% of her patients followed her to CHOP so that tells me something right there. If you're not familiar with our on going Neurology saga I'll fill you in quick. Tanner saw the same neurologist since he was born. Every time we saw him he asked which syndrome Tanner had and what kind of seizure meds he was taking (even though he was the one who prescribed them). Needless to say it left me feeling uneasy. Tanner's last 4 hour EEG was last April and was cut short after an hour because so many seizures were documented. For months I tried to get answers as to what part of the brain these seizures were coming from, what kind of seizures they were and if they were damaging. After a few months of hearing "I'm not sure"....."I'll get back to you" I just gave up. I focused my energies on getting Tanner a new neurologist instead. CHOP has policy that they won't just switch you because you're unhappy. I called multiple times and Tanner's pediatrician tried with no luck. Since we moved to a new county I thought I would give it one last try with the excuse that the drive is too far and we are closer to a different satellite office that his neurologist doesn't travel to. IT WORKED!!!!! So, his new neurologist pulled up the results from that EEG last April and told me the seizures were coming from the two furthest back portions of the brain, they are generalized seizures and that they are damaging considering the amount of them he's having a day. She said we will do everything possible to make them go away. We're starting bright and early at 7:30am tomorrow with an EEG. From there we are going to either start the kenogenic diet, change his formula or add a different medication to the Keppra he already takes. Tanner is already on so many medicines so I'm really considering the kenogenic diet. Right now he's on pediasure which has a very high sugar content which is said to trigger seizures. I'd like to try a different formula to see if that makes a difference before we go into the strict diet. Seizure medicines often come with side effects that I would like to avoid so that's my last resort. So, first step is the EEG and we'll go from there.
I'm worried we may possibly be seeing some regression in Tanner's development. For the last week he is refusing to sit up. He's been so great with sitting and we worked so hard to get him to sit. I'm not sure if this could be related to the seizures or not. He's also been throwing up with just about every feed. If it's not regression due to the seizures I'm wondering if there's something going on with his belly that's making him uncomfortable sitting and also causing the spitting up. I brought up these concerns to his pediatrician at his appointment today so she gave a small boost to his Prilosec dose to see if reflux is the culprit. I guess we'll see if that helps within a few days. Tanner was 16 pounds 12 ounces at that appointment today so he's still gaining:)
This weekend we're heading to Altoona for my niece's 4th birthday party. It's always great to see my sister and the rest of the family. I can't wait. We get back Sunday and then Monday morning Tanner is getting his mini button. I can't wait!!!!!! This dangling little tube is a bugger. It always opens and leaks. Good riddens peg tube. Don't the door hit on the way out:)
I just installed Tanner's new car seat too. He's not totally grown out of the infant seat but we have to bend his legs because they hit the actual car seat. Weight wise he's not out grown it but length..yes! He looks like such a big boy:)

Here's Tanner in the bath tub. He's learned to splash and loves splashing himself. I love this picture because it looks like me when I'm doing the Thriller dance. LOL!!!

The brothers:)

Next weekend the 26th we are having a WHS get together at our place. I treasure these get togethers. I will have tons of pictures of beautiful, smiling children. Much love:)


Kisses4Kaylee said...

Although I cannot speak with certainty because I have not yet taken Kaylee for her 24 hr EEG, I can tell you that her breakthrough seizures seem to have stopped with the addition of Topomax...and that is just with the beginning dose of 1 ML 1x/day. We will be gradually increasing it and then begin decreasing the Keppra dose. I am hoping that it does the trick and keeps seizures under control; of course, until we go back for another overnight EEG, we really will not know for sure. I really wish you luck on this front~ I know how hard it is and how scary it can feel to not be 100% confident in the choice you make for your child's health. I alos know that you are doing really well with the oral feeding, so I do understand if changing to the Keto diet worries you. I am not sure if it is coincidence, but I told Mark that since adding the Topomax, Kaylee has been eating up a storm. She is also on Prevacid, and she has not spit up at all in the last week...slowly gaining maybe there is some sort of correlation...I don't know.

GREAT news about the neuro switch~ I know how unhappy you have been with the old one for some time. It almost sounds like negligence on his part that he never got back to you with Tanner's results,and I would report him to CHOP main (or at least post his name on the WHS site so that other local moms don't seek him out).

LOVE the new pictures~ he DOES look so big in his new seat! What kind did you get? I cannot wait to hold him in a couple of weeks...miss you guys like crazy!!

Kristen said...

I CAN'T WAIT EITHER!!!!!!!!!! Seriously - I am counting down the days on my calendar! Love ya!
Hey... what is the formula we were talking about last night? I might see if I can get a script for a switch to try.

Hannah said...

I am so glad you were able to switch to the neurologist you can trust. It sounds like you have a good plan with some options, which is great to have.

I hope we are able to make it next weekend, you would love to see you and Tanner. I will keep you posted.

JKilpatty said...

So fun to see updates, Jess and good luck with the new neurologist!!
Don't forget to update your profile, too... change it from fiance to wife!!