Holly was admitted in to the hospital on thursday morning with a severe migraine.  We spent the night in the ER the day before were they did a CT Scan and a spinal tap.  Once we were transferred to Austin Dell Childrens Hospital she developed a severe spinal headache on top of the migraine.  She has had 4 tia's since tuesday.  MRI looked good, they just completed an EEG.  I think we finally got rid of the spinal headache but more things have come up.  yesterday when she got up in the morning, her blood pressure dropped to 61/35 and her heartrate down to 52.  Since then she has been on IV Fluid.  Endocronology will be in today to go over some results and also to see if we can figure out why her heart rate dropped instead of rising.  This morning she has been vomiting.  Pain right now is more on the right side of her head.  Not sure what to expect at this point, Doc's said we aren't going home until the headache is gone and we have a plan of action for future. 

Does anyone else have pain over their surgery sites at times?  Or feel like your ears burn at times? 

Hi Hillary -

SO sorry to hear about Holly. You are on my heart and in my prayers.  I will ask Kate about the headaches when she gets back.  She is in Oklahoma.  Y'all hang in there and I will talk with you soon.

Hugs,  [smiley=hug.gif]

Cass in Dallas  [smiley=cowboy.gif]

Gosh Hillary, I'm sorry to hear about all of this.  Have you talked with Dr. Steinberg/Teresa about it?  It sounds very concerning, and it seems that you should have their input.  Hopefully you're getting good info, with doctors who are familiar with what she's been through.  Will keep you guys in my prayers.

[smiley=hug.gif] Jill

Thanks Jill,

We have not been in touch with them at this point.  Her neurosurgeon and neurologist form Texas are involved in her care here.  We are fortunate to have an attending doctor here that worked with Dr. Steinberg at the same time that Holly had her surgeries there, also one of her night nurses also worked at Packard for 5 years and says she thinks she remembers us when Holly had her surgeries.  We'll see what tomorrow brings, we have a few good hours and few bad hours throughout each day.  Right now they are not any closer to solving the problem.  She has however rested well for the last few hours.  I will update more tomorrow.

Sending more LOVE and good solutions!
Glad you have a great medical staff.
Happy Mother's Day to you and Linda
Hugs all around.
La and JB too

I'm so sorry to hear this. It all sounds very frightneing. It sounds like you have some good people working with your daughter. I hope they can come up with why this is happening and stop it from happneing again. I wish I had somethign I oculd add that would help but I really never got much input from Kathleen after her surgeries becuase the strokes left her pretty nonnverbal for quite a while. Please keep us posted. Try to have a nice Mother's Day! ((((((HUGS)))) to you both and many prayers for a quick recovery.
Mary Grace

Jill,

Holly's neurosurgeon from Texas is going to call Dr. Scott and Dr. Steinberg sometime tomorrow to get their input on things. 

Does anyone else with Moyamoya take Topomax as a migraine prevention med?

Hang in there Hillary, I hope Holly feels better soon. Luca was on Topomax right after her surgery, more as a precautionary measure, and hasn't used it for quite some time. I can't really give much feedback on it's effectiveness because she was so young.

Stay strong
Mark (Luca's Dad)

Destin is on 100mg a day of Topomax.  I can't really say how much it's helped or not.  She is still getting migraines...several a week.  We just met with a team at Tampa General Hospital that deals with pain management and migraines.  They added Bystolic to see if that helps.  she is also now taking a slew of vitamins: Vitamin B2, Magnesium and Co-Q 10.  she's only been taking them a week so again we can't tell how much it's working.

Holly has not been pain free since last tuesday at lunch... its sad to see her suffer like this :(

Please send Holly hugs from Philly!   [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

-Shari

Continued HUGS and LOVE

Now, I can handle my migraines with an acetaminophen if I catch it soon enough. Still end up with that 'stupid' feeling. So I feel stupid a lot!
When I was young I had them and they were incredibly painful. Had to lay in a dark room all day. So I'm onto how that pain is for me.
Hope it get's resolved soon.

Looks like we are possibly going home tomorrow.  We are just waiting to see that all of the doctors are in agreement.  Still have the migraine...but I think over the worst of it.  We'll see what tonight brings.

Scratch that...I think tomorrow is out.  Bad day, back on IV fluids..lots of throwing up tonight.

Maybe tomorrow will be a better day.

I'm so sorry to hear that. Many prayers that she will turn a corner and be home very soon.
Mary Grace