...probable..."Panayiotopoulos syndrome"

We walked away from Hudson's neurology appt feeling very relieved and reassured. We won't have a true diagnosis until his EEG report and pediatric neurological consult are reviewed by his neurologist in Dallas but he is pretty confident he has Panayiotopoulos Syndrome or Early-onset benign partial epilepsy with occipital paroxysms. (If interested in reading more HERE is a good overview and almost EXACTLY what we experienced).     This is a fairly new diagnosis of epilepsy but also a very common form of epilepsy.  It usually presents itself between 3-5 years of age and seizures most commonly happen during sleep.  Of course we have been most concerned when he sleeps but he reassured us he is safe while sleeping.  I asked him if we would know if he had had one in the morning and he said most often we would find his pillow soaked with drool...well, hello...that has happened.  We have always assumed this was due to his cleft.  He explained to us it isn't just drool..but the pillow COVERED, soaked....yes, we have experienced this.

The treatment is generally to do nothing and they grow out of it.  He has kept him on his RX for now and we will discuss exactly what he wants to do when we go back in two weeks.  He also said these seizures can last hours and if he isn't convulsing and his breathing is fine we just watch him....DON'T know how i'll feel about that IF we experience that but hopefully we won't.  He doesn't feel the need to do the MRI next week and we can go ahead with surgery on the 18th.  Of course, this is all subject to change once he reads the reports from KC (which due to a mis communication between dr,'s offices and then a down fax we couldn't get before yesterday..grrr).   The long seizures aren't as dangerous in this type of epilepsy as in others which was also reassuring.  He explained to us typically what to expect if he went into a seizure while awake or after just waking up (as they are usually brought on by sleep) so that also gave us some things to watch for.    Although the article says typically these seizures don't run in families he said current research is showing how this is a very inherited epilepsy.  I think I mentioned how in my research I read how anti-seizure medicines if taken while pregnant can cause cleft palate birth defects which he said is true...so, his birth mom very well could have epilepsy...we will never  know...

Hudson was so upset yesterday before we left when I told him where we were going.  "I don't like dr.'s anymore" he would cry and kept saying "will he lay me down and put things on my head?"...referring to the EEG, again this was SO traumatizing for him.  Well, Dr. Elterman was GREAT with Hudson and had him running in the hallway, throwing balls, etc. (all part of the exam) but Hudson thought he was lots of fun and kept saying "what are we going to do next?"..THANK YOU for instilling his faith back in Dr.s again before the 18th!!!!   Once he got home he went straight to work:

Again, thank you family and friends for all your prayers and thoughts....we have felt very at peace through all of this and know it is because of prayers and His Grace and Mercy!!!