RE: Mood - anyone have this?

April 15, 2007

Does anyone else have the mood swings, crankiness, irritability, in addition

do they get worse during periods of vacations, family gatherings, doing

things you don't want to be doing? How about you older CHARGERS? Any

insight from your minds so I can help get through this? I feel like

's meds are not working anymore and I am nervous. I can't take it

anymore and I don't know how to help him. We are going to the Neurologist

on Tuesday. I am finding the psychiatrists I have been to of no help. Our

Neurologist has been the most help.

We can't go anywhere without him being just in a bad mood. He tends to

scream a lot, like a shreak because he knows it bothers me. The OCD is

getting worse and I am finding it harder and harder to be living a normal

day. It's not his fault, he is probably feeling ill as well. I also find

his behavior is terrible when trying to get him to eat and really don't know

if I should push him like the " experts " are telling me too. He can eat a

full nutrient pudding instead of his tube now, but would rather starve to

death. His point is he wants to eat what everyone else is eating and if he

can't, he doesn't want to eat. I think he is very frustrated with it and I

don't know how to handle that.

He is not like this at school. At school he is a star pupil and a great

easy going kid, according to everyone. I have a totally different kid at

home.

Also, is there any connection between CHARGE and Aspergers? I met someone

who described exactly, but she was talking about her 3 son's with

Aspergers. Any info or knowledge of this would be great.

Debbie Matasker mom to with CHARGE 10 yrs. Old in a couple of weeks!

April 15, 2007

Debbie,

I can relate in some ways to what you are saying.

For us, it made sense to look at difficult behaviors and search for a biological

cause. In most cases, if there is a biological cause, a medication will not

really solve the problem. In some cases it might lesses the severity, or in

other cases it might hide the symptoms, but generally, the traditional

medication is not going to solve the problem.

I was raised by a mother who did not fully believe in medication. This had to

do with her religious upbringing. This attitude has affected me as I have grown

up and ultimately I came to see, that in our case, what I wanted to do was to

try to find the biological cause and treat it with something that would allow it

to heal. I didn't want to add medications that are not natural to the body

system to the mix. In our case, as I think you know, Kendra is on one

medication at a very low dose.

Thankfully, the difficulties she was having were happening at the end of the

1990s. At that time there was a tremendous influence in health coming from the

scientists looking at the brain. In fact, the Nineties had even been identified

as the decade of the brain. One of the amazing discoveries in that decade was

how much the brain and the digestive system (the gut), were connected. Some

even called the gut the second brain.

Many people with many different kinds of conditions from ADHD to MS to

Asperger's to autism and other conditions have been seeking ways to heal what is

causing the difficulties. Many of the difficulties are just as you describe.

Many are connected to the digestive system and its connection to the brain.

Biochemistry is of couse very complex and no two people are exactly

biochemically similar. But there are some similiarities and one can learn from

what others have studied.

In my opinion, everything that we do or think or eat or drink or breathe, can

have an effect on us. In my opinion, circumstances such as you describe can be

the result of a cumulative set of conditions.

What makes sense to me is to try to lessen the number of cumulative factors

causing problems. And then, if possible evaluate if there are approaches that

can be taken to minimize the problem or even heal it. This is the approach we

have taken, and Kendra is making progress. From a child who once spent most of

her time spinning and biting and not sleeping and not communicating, she now is

a very different young lady.

While never had as severe of symptoms as what Kendra had when she was

young, I do feel there are some connections. It worries me you are concerned

the behaviors are worsening.

It worries me, but I have a lot of hope that answers can be found.

In terms of asperger's and an association to CHARGE, I will not comment. But,

in our case, there is undeniable autism that is present along with CHARGE.

Whether the two are originally connected, I don't know. I only know that our

baby with CHARGE, turned in to a child who had severe autism. Thankfully, she

is becoming more like she was prior to the start of these difficulties.

My opinion is that issues with the immune system led in part to these

circumstances.

As for eating, I think this one topic is amazing and can offer you information

that will help. If wants only to eat what the others are eating,

perhaps he knows that in some way it might be better for him. Can all the

others drink some kind of smoothie that has great nutrients that would be good

for him? I say if you can't lick 'em, join 'em. :-) There is a tremendous

amount of information out there that supports the idea that certain nutrients

set off immune and/or autoimmune conditions that can have resulting behavioral

consequences. Additionally, zinc deficiency has been linked in some cases to a

lack of desire to eat. Kendra is treated for a zinc deficiency.

I share frustrations you have mentiioned with some of the doctors you have seen.

For us, seeking advice elsewhere has been beneficial.

I send my prayers and support and hope your way,

wkeedy@...