Dawson had a visit with the Neuro the other day. Nothing earth shattering....
There is some new kind of testing they are looking at in China with I.S. Kids who have failed ACTH treatment and then the rest of the things she said about that sounded like this to me.............................
adsjfadj jaldsjfa;ldsjkf jal;sdjfal;dsjf jafoijeanf aojeojjoijef lajlieajnieja oiuoaiejaeita......................
Beacuse I have NO IDEA what she was talking about.
Its not like I'm dumb or anything but when she starts talking about the inner workings of the human brain and all the gigantic medical words, Well I start to kinda just zone out HA!!
So pending insurance approval, we are considering this new testing. Its only a blood draw and there is a lab in Florida that will do the testing.
The good news is that Dawson was MUCH better in the Dr's office than he was last time. We asked the nurses to do weight, ears, and blood pressure LAST instead of first thing because last time it freaked him out really badly and made him act like a crazy person for almost 2 hours.
Aren't we smart????
She also wants us to try the Modified Atkins Diet. Certainly not opposed but we are worried how that is going to be because Mr. Dawson has become a VERY VERY picky eater the past few months. And when he does eat..... yep you guessed it... He LOVES his carbs...
Not much of a meat eater, but loves fruit snacks, bananas, fruits, vanilla wafers, cereal bars, etc, etc. None of these things would be allowed on this diet and Im realistically wondering what is this kid going to eat. I tested the waters tonight with some of those vienna sausages ( the kid friendly kind that Gerber makes.) When he would open his mouth to scream that's when I would seize the moment and stuff the food in.......
He got very upset and just refused to eat the stuff ( not that I blame him) and so round one goes to Dawson.
Soooooo. what to do?? what to do??
Please keep us in your prayers. Seizures have been a little on the rough side lately and with some pretty high numbers. The day we saw his neuro he ended up having close to 100 that day... YUK!
We remain very aware of all the wonderful things God is doing in our lives and strive to stay in the center of HIS will during this time. In return, he continues to shower us with an indescribable peace.
Our love to all
Jeff and Allison
About Me
- Dawson
- Dawson was born Sept 4 2007 and was diagnosed as having Infantile Spasms when he was 2 months old. Infantile spasms are a rare seizure disorder. Our story is one of faith and hope. Dawson now has multiple seizure types as well as developmental delays. We are prayerful that we will be able to find a way to stop the seizure monster that lurks in his brain. Your prayers and support mean the world to us.
6 comments:
Thinking of you and praying hard for seizure freedom to come knocking once more.Much love from California.
Dude...how could I not think of that?! To ask for them to do all the stuff that causes a ruckous last! Great idea...I'm stealing it!
((((((hugs))))))))))
...danielle
Hey guys....trying to get caught up!! I would love to find out more about the testing. i totally understand what you mean about some of it sounding like a foreign language. I sometimes think they get paid a bonus for every time they put a confused look on your face. So they are suggesting MAD now? Dawson, don't feel bad I'm a carb junkie too buddy! I swear making decisions stinks& I wish they would hurry up and send the owners manual on these kids soon!! i'm kinda tired of "winging it...hahaha. take care!
Read the update, guys. Hope you are all well!
The testing sounds very interesting! Our Neuro in Houston only speaks in big medical terms too, so I feel like I am constantly saying "could you repeat that?" or "huh?" ;-)
I do not like to hear that Dawson is having more seizures!!!! I just read below where he had a day with no seizures...which is great! We pray for more of those!
If you try the modified Atkins diet is it something you just do at home or do they guide you? That may be a dumb question...I just didn't know if you had to keep up with certain ratios, etc. like the Ketogenic diet.
We are thinking of you all and Dawson! Looking forward to the days where there will be NO seizures to count for Dawson again! Sending lots of love and prayers your way!!!
Okay...just noticed Dawson's basketball video! That is the cutest! He looks great and love how he gets so excited after he makes a basket! Also...I can't believe I missed the blog of him turning 2! ;-( Loved the birthday pictures of him! He has grown up so much. What an amazing little boy he is!
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