Minnesota

October 27, 2004

I am new to the group. I have been trying to read and figure out who is who by

reading the mails from the past few weeks. I am still working on figuring out

who is who.

My son (Jaxs) is 5 y/o. He has had epilepsy since he was 4.5 months

old. Since that time he has failed 26 drug/combination therapies and hte

ketogenic diet. We are once again on the diet since July of this year in

addition to klonopin, diamox, b-6, calcium and the sugar free multi vitamin.

Jaxs has a beautiful sister Sidnee who will be 9 in December.

He is doing great this time with some breakthru seizures. In fact, we just got

out of the hospital again. This time was for 30 seizures in a 48 hour time

period. Ketones were large and there has been no other explanation. Earlier

this month we were in for a week for severe constipation. No answers this time.

The reason we quit the diet last time (period of 1 year 3 months) was that he

was not tolerating the diet very well and was constantly breaking the diet. So,

we were constantly fasting. We are in a different house with a lock on the

fridge door and all other foods locked behind a door in cupboards with locks.

The reason I say he is doing great is that he went to over two weeks with no

seizures at all. Not even the small little ones that used to plaugue him all

day long. He is clear and understands so much more. He is getting our world

and loving now.

I honestly think that his calories are too high. But, I am not the doctor. His

ketones are always high, but not super high. On the urine stick he is slightly

above 80, but no quite 140 ( the next level available). I am thinking of

lowering his calories since I can not get into the doc to re-assess and I know

more than the dietician at this point. She is fairly new and just started

adminsitering the diet. I was asking her questions at the hospital that she

could not answer. things that I remembered from the first time on the diet.

My question is: Is there anyone who live in Minnesota or another state that is

happy with the medical team and support services? We live in California. The

school district willnot make special provisions for the diet (tried and failed

miserablly, long story) so we are home schooling right now, but I would like to

go back to a school setting as he loves other kids so much. The regional center

told me that anyone can administer the diet, even an idiot. And, the medical is

just not supported here. I found out that the ped told one of Jaxs nurses that

I just need to realize that he is never going to be normal and that there is

nothing I or anyone else can to do help him. So, I want to move. I was

thinking about Minnesota.

I know that this must seem extreme. There are reasons. I am recently divorced

and I have 100% sole physical and legal custody of both children. In the

divorce I also was awarded the house and all the bills that accompany the house.

So, living in California is quite expensive. I am looking for a place that will

accept Jaxs with his epilepsy (keto diet and drugs) mild to moderate

retardation, sensory issues, autistic like characteristics and speech delays. I

want a place where all my spare time is not going into fighting the system for

every service, but going to enjoy the children in their childhood. I would like

to sell my home here in California and move to a state where the cost of living

and the pace of living will not kill the spirit of a family. Dad is no help and

can not be relied upon. Not only am I home schooling Jaxs, but I also work out

of the house to make all the ends meet at the end of the month. I want to not

have to work out of the house at the expense of my children.

Any suggestions are welcome. I do not know of another area in California where

the housing is affordable with a decent school district and regional center.

Thank you for reading.

Jenn

Mom-mom to age 5 and Sidnee (very typical and girly) almost 9 y/o

October 30, 2004

Jenn-

I am sorry to know Jaxs has had to go through so much. I do not know

anything about Minnesota. I am in northern Virginia and go to J

Hopkins. The schools here are very accomodating, but the cost of

living is high (home prices.) I hope you will get some better

replies that you need. Has Jaxs seen a chiropractor? has had

good results from his. The diet works some but not 100% for .

Good luck to you and your children -Staci

> I am new to the group. I have been trying to read and figure out

who is who by reading the mails from the past few weeks. I am still

working on figuring out who is who.

>

> My son (Jaxs) is 5 y/o. He has had epilepsy since he was

4.5 months old. Since that time he has failed 26 drug/combination

therapies and hte ketogenic diet. We are once again on the diet

since July of this year in addition to klonopin, diamox, b-6, calcium

and the sugar free multi vitamin. Jaxs has a beautiful sister Sidnee

who will be 9 in December.

>

> He is doing great this time with some breakthru seizures. In fact,

we just got out of the hospital again. This time was for 30 seizures

in a 48 hour time period. Ketones were large and there has been no

other explanation. Earlier this month we were in for a week for

severe constipation. No answers this time. The reason we quit the

diet last time (period of 1 year 3 months) was that he was not

tolerating the diet very well and was constantly breaking the diet.

So, we were constantly fasting. We are in a different house with a

lock on the fridge door and all other foods locked behind a door in

cupboards with locks. The reason I say he is doing great is that he

went to over two weeks with no seizures at all. Not even the small

little ones that used to plaugue him all day long. He is clear and

understands so much more. He is getting our world and loving now.

>

> I honestly think that his calories are too high. But, I am not the

doctor. His ketones are always high, but not super high. On the

urine stick he is slightly above 80, but no quite 140 ( the next

level available). I am thinking of lowering his calories since I can

not get into the doc to re-assess and I know more than the dietician

at this point. She is fairly new and just started adminsitering the

diet. I was asking her questions at the hospital that she could not

answer. things that I remembered from the first time on the diet.

>

> My question is: Is there anyone who live in Minnesota or another

state that is happy with the medical team and support services? We

live in California. The school district willnot make special

provisions for the diet (tried and failed miserablly, long story) so

we are home schooling right now, but I would like to go back to a

school setting as he loves other kids so much. The regional center

told me that anyone can administer the diet, even an idiot. And, the

medical is just not supported here. I found out that the ped told

one of Jaxs nurses that I just need to realize that he is never going

to be normal and that there is nothing I or anyone else can to do

help him. So, I want to move. I was thinking about Minnesota.

>

> I know that this must seem extreme. There are reasons. I am

recently divorced and I have 100% sole physical and legal custody of

both children. In the divorce I also was awarded the house and all

the bills that accompany the house. So, living in California is

quite expensive. I am looking for a place that will accept Jaxs with

his epilepsy (keto diet and drugs) mild to moderate retardation,

sensory issues, autistic like characteristics and speech delays. I

want a place where all my spare time is not going into fighting the

system for every service, but going to enjoy the children in their

childhood. I would like to sell my home here in California and move

to a state where the cost of living and the pace of living will not

kill the spirit of a family. Dad is no help and can not be relied

upon. Not only am I home schooling Jaxs, but I also work out of the

house to make all the ends meet at the end of the month. I want to

not have to work out of the house at the expense of my children.

>

> Any suggestions are welcome. I do not know of another area in

California where the housing is affordable with a decent school

district and regional center.

>

> Thank you for reading.

>

> Jenn

> Mom-mom to age 5 and Sidnee (very typical and girly) almost

9 y/o

>

October 31, 2004

Staci and

Thank you for replying. I have not seen a chiropractor. What would the

chiropractor be doing that makes a difference? The diet is working if I could

just keep him from cheating. I have already drilled a hole in the fridge

handles and put a key lock on the doors, moved all of the food out of the

kitchen into the laundry room behind a locked door. Still he manages to find

something. Yesterday it was dog food. Last week he added toothpaste and cat

food. Jaxs is so seeking and hyper that I am just having a real tough time as

one person keeping him on track. Preparing the meals are not an issue. He

loves the food, he just wants an unlimited supply.

California is just so outrageous in services vs. budget and living costs!!! I

was looking at Minnesota for a few reasons.

1. I am using the Son-Rise teaching program with Jaxs instead of the

traditional public schools. He regress over two years while in the classroom

and only have severe handicapped classes for placement. The topper was in March

when he had a seizure at the school. The school nurse was present and responded

by making him safe and watching. Someone called me and I was rushing to the

school. I called at about 14 minutes after the first phone call just to check

on him. Come to find out that he was still seizing. 911 had not been called.

So, I asked the school nurse to give the Diastat which was in her desk drawer.

She refused. After I arrived he was still seizing. I gave the Diastat and then

911 arrived. I was so pissed to say the least. I did not return him to school.

Supposedly CA law prohibits anyone but a school nurse from administering the

Diastat which is why the licensed RN refused to give the med. The remarkable

thing is that Jaxs is back to a 3 year old level since being home schooled on

the Son-Rise program. THE ENTIRE STATE OF MINNESOTA ALREADY ENDORSES THE ENTIRE

SON-RISE PROGRAM. Basically I will not have to fight the school district every

year for an education that is working.

2. I have spoken with the Minnesota EFA and asked about docs and placed to

live. The EFA recommended some docs and Jaxs has an appt in Jan 2005 for an

initial evaluation. They are located in St , MN. Has anyone heard about

this group of docs? We are already on SSI, so most services would transfer, but

they are apparently called different things. He would qualify for

Minnesota-Care and related services. Medi-cal will not cover anything outside

of the state of Ca. So far, the docs here are not helping him, they just added

another drug. Phenobarbital again. He is on so many drugs now and the keto

diet. Urugh......

3. My ex-husband who does not help one bit, unless his mother (who he lives

with) nags him. She is so embarrassed that she is on him constantly. It is

really frustrating having a reluctant father who does not want to be with his

kids trying to help because his mother told him he had too. It is just another

problem for me to deal with. All the docs are asking who is that guy? when he

shows up at the hospital and yells at the docs for doing nothing. I explain

that is Jaxs father and they are surprised because none of them have seen him in

5 years.

4. I have no family support since my son is not perfect and not easy to watch.

He may have a seizure, etc. My family all live within a hour of us and no one

will watch my kids. So, what do I have to lose. If they were not in the area,

then maybe the regional center can not keep telling me to call my family. I

would not have to hear stupid excuses as to why no one can help.

5. I have over the years spoken with many parents of special needs kids from

the school district we reside in. The five families that I polled have children

that have now graduated from the local school system either by graduating from

high school or aging out. I asked them, If they had it to do all over again,

would they fight the same fight? All five families said that they would have

moved out of the district and fought with another district. Unfortunately, the

districts in California that they are willing to fight with are even more

expensive to live in than the area I currently live in. So, I think that I have

decided to fight a winning battle. My daughter is losing out on so much because

mom is having to fight so hard for her brother.

6. After the divorce, I was awarded the house and the kids 100%. So, I also

got the 2 mortgages and all the related bills. I can make ends meet if I could

get child care. I have a job that I created from my home and can earn good

money, but no one will watch Jaxs. So, I am frustrated. If I could buy a

cheaper house with a lower payment. (by rolling the equity in this house over

to the new house) then I would have to work less. Be less frustrated since

there is no childcare and I need to work. I can not buy another house since the

housing has doubled since this house was purchased two years ago. I was

surprised when a realtor friend told me that the house I own on 1-acre could be

listed for more than $500,000. Land in California is just outrageous. Most

houses are build on .15 acres, so a house on a full acre is a rarity. Rent in

our area is about the same amount as my current mortgages, so why sell and

re-buy here in California. There are hotter areas of California that are more

reasonable, but heat is a huge issue with Jaxs. another reason for looking at

Minnesota where it is colder.

I have honed in on the Twin Cities. I have done searches and the houses are

about a third of the costs as a used house in my area. I have talked with the

EFA in MN and he has had some great suggestions as to areas to look at within

the area. In fact, the MN Epilepsy Nurse said that we were the fourth family

from Ca to move/show interest in moving to her state.

I just think that if I am fighting less and working less, then I can be a better

mom to both of my children, not just my son. I am so disappointed in my ex.

Sidnee, my 9 year old daughter is so rejected by her dad and I just want to

provide for her what I am fighting for Jaxs. I do not think all will go smooth

with no problems, but I am starting to think that maybe there would be less crap

overall.

Can anyone tell me about the Twin Cities area of MN, other than " it is cold! " ?

Thank you for listening. I am very frustrated. This in only the tip of the

iceberg. I just want a better quality life for the kids and me.

I appreciate your responses and support.

Jenn

mom-mom to Jaxs, 5 y/o medically refractory epilepsy and other dx's and Sidnee,

almost 9 y/o and beautiful.

Re: Minnesota