update on Skylar

Sadly we are still not much further in the quest for skylars diagnosis....but I have found out a few things that we are persuing. Still waiting to see the hematologist...im so tired of waiting! Rheumatology next month and on the search for another neurologist! Her current one is just not taking her case seriously and I don't know why! She even had a bad setback recently, missing several days of school, skin turn yellowish then blown splotches.....and we know she is now having seizures weekly......she cant just take any meds for the seizures due to the possibility that something is going on with her liver. So right now, she is having seizures without any meds to stop them....she has peti mal (absence) seizures. Same seizures she had when she was little. We are looking into something called migralepsy syndrome. This is a neurological disorder that is pretty much epilepsy and migraines combined....one cause the other.  another VERY interesting thing happened yesterday. Sky was in another school play(small part) and I happened to meet a mom who had a child in the play also. Well, we were talking about and she mentioned her son becoming sick in april of this year. As she began to talk about her son and all his symptoms, I nearly hit the floor....It was like she was reading from skylars medical records or her facebook page! A friend was with me and we both looked at eachother and said "SKYLAR" What are the odds that 2 kids have the same symptoms that started about 1 month apart....he is not on the same school campus as skylar(his older sister is) but still.....the odds right??  Well, her son is ALSO seeing the SAME neurologist as skylar and he sent her son to another specialist for further testing.....he was diagnosed with pseudotumor cerebri. So needless to say, I am contacting her neuro and DEMANDING answers as to why he is blowing off skylar yet helping the other child. Then will demand we be sent to the same specialist. The specialist has the capability to do better MRI testing, its a better more thorough machine they have that can see more layers...which is how they saw the scaring on his brain!  
 
Thanks ladies for your continued thoughts and prayers for skylar, it has now been 8 months since she became sick.
 
Oh, here is a quick pic of her from lastnight, this was her serious pose for the camera! LOL
 

Thanks for the update Sarah, will continue to pray for Skylar - she is on our list for Saturday prayer group! HUGSSSSSSSSSSSSSSSS    

Thank you Jenny!!! 

you are very welcome Sarah!! BIGG GIANT HUGSSSSSSSSSS - take care of yourself, your family needs you to be healthy!

Prayers coming for Skylar

I am not sure if this will help or not, but I have full time care of a multihandicapped girl.
She was born normally, but due to a virus, ended up, part celebal part stroke and empiliptic.
As she can not speak, it is hard to know how she handles meds etc. She is on tegretol for seizures but is still seizuring . I have been using magnesium oil on her and this has helped a lot, also helps relax her muscles and sleeps better.

Hope you get an answer soon!!! Hugs

Magnesium oil.....I will have to look into that! Thank you and prayers to your precious girl!

sorry to hear that you are still not further forward, hope you get the treatment
required soon.

I sure hope you can find real answers soon. That is awesome though that you found another mom "kindred spirit" who knows what you're going through. Hopefully her experience will help you and Skylar get answers.  

Thoughts and prayers are coming your way...Blessings for you both.