I just wanted to share that since Daphne has had her return of seizures, Dr. Steinberg and Teresa have been extremely helpful.

I've been keeping in touch with Teresa, and talked to Dr. Steinberg twice.  In the last few days, Daphne's been confusing us by not having seizures for two days, and then having three yesterday.

They have told us that if the seizures don't come under control soon, they may want to see Daphne in CA early (she's supposed to go out in Sept), and observe/ do studies to see what's going on.

I finally feel like someone is paying attention... actually looking into what might be causing seizures etc. instead of randomly prescribing meds.  Dr. Steinberg has also reviewed Daphne's EEG, and thinks that there is nothing that resembles infantile spasms (Daphne never did have the typical infantile spasms EEG)

BTW - Daphne's original neuro still insists that Daphne's seizures have nothing to do with Moyamoya.  Geesh!

Jenny

Jenny-

Daphne definatly has the best helping her. I agree Dr. Steinberg and Teresa are absolutly wonderful and i know it is so nice dealing with doctors that know what they are talking about and doing. I pray that Daphne's seizures get under control soon and i will definaly keep her in my thoughts. Take care!

Christy

Jenny-
I'm also thinking of Daphne and hoping that you get the answers you need to help her.  Teresa and Dr. Steinberg are wonderful!  Teresa was asking me if I knew Daphne's story when I was there in April and I told her I did.  She teared up just mentioning her!  Daphne has touched their lives just as much as they have touched hers and yours.
Thinking of your family always,
Chelsie

Hi Jenny...
...reading your post...thinking about my Cara who goes through few days without seizures/TIA...then has two or three a day for few days then goes away.  She is due at her neurologist first week in August.  Cara has had both the EEG and the 24 hour EEG...will probably have them again to compare to the ones almost a year ago.  Slight increase in her Trileptal medication helps a bit but still not without those spells so right before we left for vacation I read one of the posts (which I am trying to find)..it mentioned something else that sounded like what Cara could have...and that various of other problems could cause it...so will find it and ask her neurologist if those items were a possiblity).   Keep me post and I will do the same.   :) CarasMOM

Amen, Jenny!  Teresa and Dr. S are definitely in a class of their own!  So glad to hear they'll be keeping a close eye on Daphne, and I'll be anxious to hear an update.

Hugs from out west,
Jill

Jenny,

Please know that Daphne is in our thoughts, heats, and prayers...  Daphne and Cara's situations have really touched my heart...

I'm fairly new to this site, and MM in general.  I wish I could've had time to visit this site prior to my surgery; however, when I was finally diagnosed with MM (by my third opinion), I had less than 48 hours to get to my neurosurgeon for my double bypass surgery.  Nonetheless, this site is a wealth of information and plays a big part in my recovery.

It's great to hear that you have seeked other opinions and have moved on from Daphne's "original" neuro.... In my case, it looks like if I didn't get my third opinion in time, things would be different now.

Take care..and keep us informed on her progress..

Hugs from Hawaii,
SFH  :)

Jenny,
      I sure hope Daphne keeps doing better. Dr. S will straighten her out I have no doubt. We are praying for her and your family. Life can really be something else can't it. Keep the faith.
                            Nancy