Update from EEG and new neuro

[Guest guest]

Sorry this has taken sooo long. I had to recoup from that sleep

depreived EEG and poor had eizures until Thursday.

Today she is now throwing up so who knows what this week will

be like!

Anyway the good stuff first. She did have a seizure during the

EEG. (first time ever) and she also seized for the doctor (again

first time ever)!That made this mom very happy. It helped clear

what some of the What type of seizure it is versues what I was

calling them.

The doc spent two hours with us discusing her history and

reading info from veegs to what type of blood work she has had

done.

Wants blood work for fragile x, angelman, and rett syndrome to

rule them out. She meets dx criteria for all, but only one to two

symptoms and not what seems to be the most important ones.

He added pervasive development disorder-active to her dx and

is sending us to another group of doctors to have her tested for

autism, but doesn't thin she aspergers. Just another high

functioning version of it.

We were able to explain our desires (no meds) for her and just

diet. He undrstood. We have permission to wean the pheno.

She is only on 30 mg and this is how we would wean (I

personally thought interesting, since I have never heard anyone

doing it this way) 15mg one day 30 the next/alternating for the

1st month; 15mg a day for a month; then 15mg one day none the

next for the 3rd month.

We meet with np and dietician on Nov 9th to learn how they do

things and go over 's history. I'm not sure the MCT oil is

really doing anything. At first it seemed to do something but now

she is sick and how will I really know? Still struggling to get

those fluids in her. She just doesn't want to drink anything.

Thanks for all the help and taking the time to read!

~

[Guest guest]

Be careful about being overly ketotic.

Bill

mdcherry0917 wrote:

>

> Sorry this has taken sooo long. I had to recoup from that sleep

> depreived EEG and poor had eizures until Thursday.

> Today she is now throwing up so who knows what this week will

> be like!

>

> Anyway the good stuff first. She did have a seizure during the

> EEG. (first time ever) and she also seized for the doctor (again

> first time ever)!That made this mom very happy. It helped clear

> what some of the What type of seizure it is versues what I was

> calling them.

>

> The doc spent two hours with us discusing her history and

> reading info from veegs to what type of blood work she has had

> done.

>

> Wants blood work for fragile x, angelman, and rett syndrome to

> rule them out. She meets dx criteria for all, but only one to two

> symptoms and not what seems to be the most important ones.

>

> He added pervasive development disorder-active to her dx and

> is sending us to another group of doctors to have her tested for

> autism, but doesn't thin she aspergers. Just another high

> functioning version of it.

>

> We were able to explain our desires (no meds) for her and just

> diet. He undrstood. We have permission to wean the pheno.

> She is only on 30 mg and this is how we would wean (I

> personally thought interesting, since I have never heard anyone

> doing it this way) 15mg one day 30 the next/alternating for the

> 1st month; 15mg a day for a month; then 15mg one day none the

> next for the 3rd month.

>

> We meet with np and dietician on Nov 9th to learn how they do

> things and go over 's history. I'm not sure the MCT oil is

> really doing anything. At first it seemed to do something but now

> she is sick and how will I really know? Still struggling to get

> those fluids in her. She just doesn't want to drink anything.

>

> Thanks for all the help and taking the time to read!

> ~

>

>

>

>

>

>