Subject: RE: behavior problems (and Hospitals)

Deanna wrote:

>>What's not important, what is, is to be able to accurately describe any and all of the seizure >>symptoms that you see to the doc in an understandable fashion.

The last time Nathan had a seizure we video recorded it with a camcorder. It was awful to do but it answered all the docs questions and eliminated a lot of ambiguity and describing problems we have had in the past.

Just a tip,

Chris

Subject: Going to the Doc

Another tip I would strongly recommend, especially to those with younger kids, although its never to late to start, is to maintain a medical log. This is suggested even for normal kids, logging when they got their shots, chicken pox, ect. Its even more useful for special kids logging, not only seizures, but changes in medication dosages, colds and other common sicknesses, broken bones, checkup (even healthy ones), dental visits and so on. We keep ours on the computer in a table format using Word, however a spiral notebook will work just fine. (It's just harder to do searches)

This proved invaluable when we had to take Nathan to the Mayo clinic in Rochester. We saw so many doctors and they all asked the same questions about Nathan's history is was great just to hand them a printout with all the information and more importantly ACCURATE information, because we were really getting tired of telling the same story over and over and over again. We could answer all their question without hesitation, for example it was "7 weeks and a day" since changing his dose that he had a seizure, instead of "2 or 3 months". Out neurologist even wrote in her report that Nathan's parents where "excellent historians".

Once I get Nathan's log formatted suitable for Email, I can send to anyone who curious or would like to see an example. Especially interesting is our 3 weeks at Mayo, I took a laptop from work and was able to keep it updated as things happened (sort of a diary). Otherwise, you can view it now on my temporary WEB page http://users.aol.com/cpnradke

Later,

Chris

Subject: re: Going to the Doc

Chris,

I love the idea of keeping track of all the doc stuff on a computer. I have a reporter's notebook (full on both sides) tracking my son's early years (pre-diagnosis mostly). When everything seemed to stabilize I got lax...I also have a program called Pediatric Housecall that has an area for tracking this stuff, but I have yet to find the time to actually do it...writing it down is more immediate, but then there's remembering where I put the notebook:-) I do, however, keep a document on the computer called "Ben's Notebook," which I keep updated for his caregivers. I three-hole-punch and keep it in a binder for them. It has all info related to taking care of him such as meals (what the current favorites are), meds, school info, bathing, and the complete list of doctors.

Regards,

Jeanne

Subject: Records

I had to chuckle at the "record" keeping stories. Before we had a firm diagnosis on Kelsey, I started "research notebooks" on possibilities. People joked that most parents keep photo albums of their children, I keep "my research notebooks".

I made such a strong impression on our pediatric neurologist, that she contacted me once to see if I had an article that she was looking for. I guess I went a little over board though. When we finally did get a diagnosis and they put Kelsey on Depakote, they started her off on a half of a capsule (sprinkles). As they were going through the instructions, both the doctor and her assistant (almost at the exact time) cautioned me that a half of a capsule DID not mean that I had to count the individual sprinkles! I've mellowed out since then.

Kathy V.

Subject: records, T.V.

I had to laugh about Kathy V.'s story about meds-I've had a similar experiance with depakote sprinkles-Ellyse's dose is185mg.s= 1 1/2 capsules TID, this has sent more than afew medical professionals into a spin. I assure them that I've got a good eye and don't count sprinkles. Also, on T.V. watching- Ellyse likes to be VERY close, often with her tongue on the screen!I've tried it, minus the tongue thing,and it doesn't do much for me!

Elizabeth