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6.28.2010

EPILEPTIC ENCEPHALOPATHY

We had an apt with Cole's Neuro last friday. I talked to her about Cole's severe developemental delays...she came back with Epileptic Encephalopathy. We are still learning about it...but from what we read...it is a rare disorder caused by Seizures in young children that severly delay their developement. The Neuro said, Children with this disorder rarely "catch up" to their age group developementally and will always be behind.

Adam & I kind of saw it coming because he is about full year behind...but we also had high hopes that if the seizures stopped, he could possibly catch up. Though...Miracles do happen...I am not going to disapoint my self in thinking that he might. I think we have a longer road ahead of us then we think we do...but, it all works out in the end...right!?!

Cole is getting an EEG done on June 30th. This will be the 1st one since he has started the diet...so it will be interesting to see how the seizures have changed.

6.25.2010

TEETHING & THUMB SUCKING???

DO YOU THINK COLE IS TEETHING...???

















Cole is NOT NOT NOT a good teether....it takes 3 months to get ONE tooth. I thought he was just getting his LAST canine in...but my friend said her little boy got his 2 year old molars in at 18 months. I stuck my finger back there & sure enough they are COMING!!!! and he has started sucking his thumb...hopefully he'll stop when they come in...but as long as he's NOT crying....I DON'T CARE.

For Cole...theething is on a whole nother level. It increases his seizures, makes him cry ALL day & eating is a BUST!!! ...NOT good for a kid on a special diet. Needless to say...we've only had a few times where his ketones have dropped because of it. I still FORCE him to eat it :( but it's better then having more seizures...I *think*!?!

6.22.2010

3.5:1 Ratio Change



We raised Cole's ratio from (3.25g of fat) to (3.5g of fat). I haven't seen a huge differece in a change in his seizures. Although we have noticed he seems to have them more in the morning before/during his first meal...then through out the day he has them here & there. So, his dietician is having him eat all of the 3.5g meals during the day and eat a 3.75g meal before bed to help keep his ketones up. So, we will try that tonight.
We also started giving him B6 and Mag. We started with 100mg of both...but it seemed to increase the seizures, so we lowered both to 50mg. If any of you Keto Mom's give your child the B6 & Mag let me know if the dose seems right...we asked to dr...but they didn't know.