Re: feeling horrible/ unexplained blood in urine

[Guest guest]

- thanks for the reply. I guess I was hoping it was an isolated seizure,

partly why we haven't given him the Trileptal these last 2 weeks. Mostly I

really want to be able to have a serious face to face conversation with a

neurologist first, but we weren't able to get in until Dec 7th. Josh goes to

Stanfords Lucille Packard. Since the seizure on Oct 30th, Josh has also started

to have alot of blood in his urine which after several appointments, ultrasounds

and tests, is unexplained. We just have to keep monitoring it. Frustrating.

Also why we can't go ketogenic now. This, after 8 years of near perfect health.

His excema is also out of control. I wish I could do something to make it

better, but I have faith it is indeed going to be OK eventually. It feels good

to hear your always bounces back. Best to all of you.

Sent from my iPad

Our son never had seizures until age 4 and has had them ever since. He is

medicated for them..and they are controlled. It doesnt mean they are not

healthy..because they can live a good life with seizure awareness and

management. If you have spikes in your EEG and your doctor prescribed

medication...I don't understand why you choose not to give it. But there is

hope... Seizures are a part of life with many of these kids...don't be

sad...try to be proactive, it is worse to see them having a complete grand mal

seizure that won't stop... We've been living with this for 9 years now...

is on Zonnegran....Keppra didnt work, Topomax didnt work, and other's I can't

remember.. I hate to hear your saddness... because its going to be ok. Many

of the families on this post can attest to that. Seizures are very

serious....so make sure you take the medicine or research other options such as

the Ketogenic diet.

Roxanne... had his first big seizure in his sleeep too..that is when they

have the highest tendency to seize. We always have to call 911 for Dan...he

has respiratory problems... but he always has bounced back even from the worst

seizure..

Best of luck to you... Hasselberger,

The higher the hill, the harder the struggle, the greater the story of your

testimony. Maybe it seems like your " climb " will never end, and the pain will

never stop...but keep believing...keep trying... keep your faith focused....

Your story will be told...and your reward greater than gold.

Hasselberger November 2010

________________________________

To: " polymicrogyria " <polymicrogyria >

Cc: polymicrogyria groups <polymicrogyria >

Sent: Wed, December 1, 2010 8:21:31 PM

Subject: Re: feeling horrible ..

Hi Roxanne,

My son also just experienced his first seizure a few weeks ago, so I can really

relate. He is 8. Up until now, we felt so fortunate he had been so healthy.

What lead up to your daughters seizure? Anything different? Our Dr has now

prescribed anti seizure meds but we haven't started them. He had and EEG with

many spikes.. I've been so sad and lost with this lately. I'm here if you

ever need someone to talk to, don't hesitate!

- in CA

Sent from my iPad

my daughter just had her first seizure in her sleep .. I also had to use

her valium for the first time her seizure lasted 10 minutes gave her the

valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go

through that ..... can't stop tearing up : (

-Roxanne

**serinity 4 yrs**