January 29, 2009

Updates

Our horrible weekend was only two weeks ago but it's already been pushed to the back of our minds. The boys just finished their antibiotics yesterday and are finally back to normal. They were feeling better 2-3 days after the "weekend from he**" but it took them a while to get their appetites and energy back up.

I spoke to Jake's geneticist a couple days after he had his seizure and I'd thought some of you may want to know what she said (not her words exactly, but my interpretation of them). Basically, cord compression itself does not cause seizures. BUT, one of the possible side affects of cord compression is hydrocephalus, and hydrocephalus may cause seizures. Dr. Jones said this is why it is important for people with achondroplasia to have a baseline MRI, looking not only at the foramen magnum opening, but also measuring the size of the ventricles and CSF flow. The ventricles are "pockets" in the brain that collect CSF (cerebral spinal fluid, AKA "water"). Enlarged or dilated ventricles are an indication of hydrocephalus.
After describing Jake's symptoms and what happened before, during, and after the seizure, the geneticist was very confident that he did in fact have a febrile seizure and no further testing was needed.

Also worth mentioning, febrile seizures are NOT neurologically triggered and tend to run in families. Come to find out, David had a couple seizures when he was a young child. It is unclear whether he had a fever when they occurred (after all, it was soooo long ago :) but his mom said he was treated with medications. They don't treat febrile seizures with anti seizure meds nowadays but according to the geneticist, back then they did. So it is very possible that they were febrile seizures.

So this is what I've learned from our experience. I'm sure there is much more, but it is complicated and I don't want to give out any wrong or misinterpreted information. Follow the links for more info. Tonya also has a wealth of info on her blog with more of what I wrote about as it relates specifically to achondroplasia. And let me tell you, this girl knows her stuff!

Other updates in the Drake household (no, I'm not pregnant): David had his two painful wisdom teeth pulled today, we got Jake's MRI results and he doesn't need any surgical intervention for now (more details in another post), and January is almost over which means there is another 3 day weekend to look forward to in February. Hopefully this one will be different from the last one.

These photos were taken within the last week, showing how fully recovered the boys are:



My middle name is "trouble"





8 comments:

Emily said...

So glad to hear everyone is feeling better! And although it must have been terrifying, I'm glad to hear the details on the seizure. Scary stuff, but so important for us to be on the lookout for!

Melisa said...

What a scarey time. So happy to know that he is OK. I agree with you that Tonya's blog is the BEST...so much useful factual information.

Tiffany said...

I'm glad that you're doing better, but that's a lot to go through.We haven't had an MRI and I'm starting to second guess that.

Destini said...

I'm so glad the kiddos are back to normal! Jakey is so cute when he is being ornery! And the picture of them "reading" a book together is priceless!

Caden and Mommy said...

Jane!
Thanks for the info about the seizures ... good info to have! I am glad everyone is on the road to recovery!
Trisha

Mike said...

Great pics! Jakey's getting so much bigger! I love the shot of him climbing into the open drawer... good thing it's not big enough to close with him in it! About baseline MRI's - EXACTLY. That's why I think Dr. Tiller is an idiot... Good for you!

Tonya said...

I am glad the doctor said it is as nothing more serious!!!

Also GREAT NEWS about no surgery!! You have to love the "for now" approach, but when your tettering on the edge, for now is a blessing!! I am glad Jakey is doing so well!!! I am behind in commenting, so forgive me!!

Anthea said...

Mejane, I somehow missed this post...glad to hear the kids are better. I love the pics of the boys...just gorgeous!