Savanna is struggling again

[sugarsue]

Savanna is really struggling now but I'm not sure why. Maybe from the new seizure meds. Maybe because she stopped her yeast meds. But probably starting since she was seizure free, she's been slipping back into her poor, impulsive behavior. She says she feels awful since she stopped having seizures and feels like she is going crazy and she says she acts bad because of her medicine. She'll grab Sierra's pencil and throw it out of the bus window. She will kick Sierra in the stomach if she comes near to tell her something. She will grab things and whine or screech instead of talking. It's kind of been like the old days again.

I let the nurse at the neurologist know all this today and will talk to them again next week. I have no idea if it is true or just what she has heard me worry about. I try not to let her hear any of my concerns or worries but who knows. We are going on a little vacation on Sunday for 3 nights to the beach so we won't hear anything until after that.

Today I met with Dr. Berger, the FL doctor who is helping us. He has another slew of tests to do on her. He mentioned Mitochondrial disorders which has me all freaked out. But he seems to be in the zone about her and I trust him. If anyone can figure it out it seems like it will be him. If she does not improve within a week or two we will start her on the yeast meds again. On a good note, her test results from 1 month ago are much improved regarding her yeast and various other things so his protocol seems to be working! If anyone can figure her out I believe he can do it.

Thanks for listening. I'm worried tonight.

Susan

[amelia1]

Ahh Susan. (((Hugs))) I hope you find something that works for Savanna and soon!

[Laura H1]

awww, Susan... I've been thinking about you alot and been meaning to post... i'm just so pooped out with Christian's stuff that I actually try not to get on this board... I try to stick with PNO and keep it light lately...

BIG HUGE HUGS!!!

I just know you are in the right hands with Dr. Berger... although we have seen Dr. P... I'm really feeling like just a number to him... in my gut, I'm feeling his interests really are in traveling and promoting his research amongst his colleagues and getting their accolades... especially after talking with our current pedi... he respects Dr. P, but couldn't help but mention his self-promotion... it made me cringe... then he went down the list of things Dr. P is doing with us and said that is Dr. P's MO (motiv operandi - spelling???)... and by-the-way, I didn't provide the list, ugggh... in other words Dr. P does a set number of things and is usually done with his patients... which is where I feel we are at...

the GOOD news for us is that our pedi AGREES with what Dr. P has done already... and our pedi is more on board with helping Chris now that he is about to enter kindergarten... (side note: why do so many pedi's IGNORE our kids issues until school-age????)... he so agrees with the environmental changes and dietary changes we are doing... he and his wife just switched to stainless steel drinking containers and invested in a blendtech, lol!

I got side-tracked... what I'm getting at is I'm going to get in with Dr. Berger too... I too suspect Mito issues with Christian... his behavior is CRAZY! we walk on eggshells around him...

hang in there... I do believe Dr. B is gonna be your answer...
more big huge hugs...
Laura

p.s. wishing I could be more of a support to you... and I soooooo miss Charlotte... dh has his heart in our business though, and moving back is unlikely... sniff, sniff....

[NancyR]

Susan, I'm so sorry!! I remember growing up my brother had seizures and had to take liquid medicine till he was a teen... He hated the flavor (peppermint - which he detests to this day) - my mom went thru heck giving it to him daily for years (similar to Marion's post), it gave him tummy aches, on and on... it did pay off for him over the long run and he's doing great today. But, it was a long hard road getting there! My mom really suffered from worrying for many years, she's so proud of him today.

Boy do I wish they had a pill for us parents in regards to worrying! I'd be on an IV line!! The worrying is the absolute worst part for me, I always wish I had a crystal ball to show me ten or twenty years forward to put things into perspective.

Right there with you hanging on!! Hope things fall into place for both of you! You have so much of my respect, as a single parent!!

Many hugs! Nancy + Leela 3/02

[jeninnc]

I am really sorry Susan. I hope whatever is going on with her resolves quickly. I know the mito stuff is scary, but I do know there is lots of research going on with it now, so hopefully you can find answers.

[sugarsue]

Hi! We were away since Sunday morning. We went to Myrtle Beach for a little vacation and had a fantastic time. Now it's back to the old grind and trying to figure things out. Thanks for your post and your update. Very interesting about Dr. P and so glad you will be hooking up with Dr. B. I too wish you were still here so we could support each other! Oh well. Maybe some day and until then remotely.

Hang in there with Christian. I'm glad your Pedi is being supportive and agrees with the protocol so far. I have a name of someone in Charlotte who may be a good doctor and support here in addition to Dr. B. Still trying to research that.

Susan

[sugarsue]

Thanks everybody!

I really appreciate your support. We went on a vacation last Sunday to Myrtle Beach and had a really good time. Savanna kept it together for the most part and was able to participate and have fun. Now that we are back I can assess what is happening again and go from there. I'm not sure when we will do all the blood work and we see the neuro on the 27 or something like that.

Susan