Aaron was in Denver for training all week and I took Lauren to her regular every 2 month neurology appt expecting the usual...updates, and prescription refills, needless to say the prescriptions were forgotten because what I heard clouded everything else. So here I go with the explanation, Lauren started having seizures this past November/December and around the same time I noticed that she was also getting a lot of facial acne and her hair was getting dirty only a day after washing it, but I didn't think anything about it only that it was from the new seizure medication. Then I took her into the pediatrition for her normal 5 yr old check up and the doctor noticed other signs that she was possibly in precocious puberty. She consulted with Taylor's endocrinologist at CHLA and he said based on Lauren's pathology that it would be highly likely based on all the signs that she is indeed starting puberty at AGE FIVE!! Wow, nothing like having to remember to put deodorant on your 5 year old.... But it will be a blessing to us in the long run, since hopefully it will keep her small since she will do all her growing early and since she is so tiny now it will be a blessing.
So back to the neurologist... I updated her on all this and the fact that Lauren's seizures have recently returned and she has been having these "spells" of laughing for no reason, sometimes they last 1 minute or 30 minutes and then sometimes she will cry for 2 hours. After hearing all of this she immediately indicated that we need to get an MRI done (sedated) and an inpatient EEG within the next 4-6 wks. She said the laughing or gelastic seizures, precocious puberty and not responding well to her seizures medication can be a sign of a Hypothalamic Hamartoma (a tumor pressing on her hypothalmus). WOW, not what I was expecting to hear. So this is where we are now heading up the steep slope again waiting for all the testing to be pre-approved by insurance and scheduled. We are optimistic that this is not the case but only the MRI will confirm that. Worse case scenario, it's large which means surgery- if a surgeon would even touch her, best case scenario - we find a medication that will at least control the seizures. She has been having increased seizure activity this week, they come in clusters, last 5-10 seconds, sometimes 5 in a row. We are at the thereputic limit on her Keppra which means we will have to start another in combination :0(
I will keep you posted, keep our sweet Lauren in your thoughts!
Taylor's wants to be a make-up artist, what do you think, a little heavy on the bronzer?
Nothing like swimming in your clothes
2 comments:
Tell Taylor, her grandpa thinks she has many better talents to pursue other than cosmetology.
Lauren is definitely in all our thoughts and always will be. You are much to be commended for looking on the brighter side of some disturbing news. She may remain smaller and easier to transport and handle. I hope medication may diminish the crying if it is due to pain. Bless you all, and keep us informed. Your blog is greatly appreciated.
Grandpa Wykoff
Sharon - You and your family are in my prayers, I hope everything goes well with all the testing.
Kristi
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