It's been a rough few weeks...

This is some of what's been going on -- I wrote to a few of my mommy friends for support and rather than re-write it all again, I thought I would share those posts with you.

Nov 28th

We had our follow up appointment with our neurologist this afternoon. It was our last visit -- he's retiring and I am really sad to see him go. He's helped us so much through this past year with all of the seizures Jack's had. We will see a new doctor at the same office.

Jack has been seizure free since we started him on valproic acid along with tegretol (what he had been taking). His mood was great for a few weeks then the past 2-3 weeks have been really, really difficult. His obsessions have spiraled out of control (all doors must be closed, all lights on, the fan in my bedroom even though the door is closed must be on, his shoes have to be away if we're not going anywhere, if one sleeve is up the other one must be too and so on, so on). Jack has always had "quirks" but they didn't interfere with daily life. It seems like he suddenly has tunnel vision and has a complete meltdown if I tell him no, or wait, or if he knows the shower door is open...add a severe language delay into the mix and it's been, to say the least, a very trying time over here. He gets mad and hits himself, and even started pushing chairs over at the kitchen table if I tell him he can't have another (fill in food item here).

Normally he's so sweet and I have no idea what's CAUSING the behavior...I hate treating something that I don't know the root cause of, you know??

I even took him to the ped to make sure it wasn't his ears, neurosurgery doesn't think it's his shunt, and I am kind of at my wit's end.

Our neuro plan is to increase the vaproic acid slightly over the next two weeks to see if that helps his mood (it's an anti seizure med but is also a mood stabilizer). We have plenty of room to go up with the valproic acid and over the next year he feels we should be able to wean the tegretol out totally and rely on the valproic acid alone for seizure control.

If the valproic acid works in the mood department then we're good to go. If it doesn't he have us an RX for resperdal. Candi, I know you guys use this with Noah. Please, tell me EVERYTHING you know about it.

I am hoping for some normalcy for Jack soon. He's not his happy self. I hate to see him so wired and moody.

Thanks for listening...I'll update on how the increase is going...

Edited to add luckily we do see a neuro-psych Dec. 10th so I hope to get some insight on his OCD-like behaviors and what we can do to help talk him out of the rages and meltdowns.

sigh...

Nov 30th

Due to Jack's recent changes in behavior -- I really wanted him to have a CT scan/neurosurgery visit to rule out anything with his shunt. We are scheduled for a scan in the morning on wed. and an appointment with neurosurgery immediately following. If things get worse until then we were told to head into the ER.

I almost can't take it anymore. This morning he was in a heap on the hardwood floor banging his head over and over. He's been impossible. I hate seeing him this way.

I called his neuro too this morning to see if we can start the rispridal immediately vs. waiting to see how the increase in seizure meds helps as a mood stabilizer.

I don't know if I will have any hair left -- it's been that bad. I am going to call a few pharmacies to find someone who carries the and as soon as I get the okay from neuro I am taking both kids out to the pharmacy.

Thanks so much for listening.

Dec 6th

Wow, yesterday was a tough one! Jack did so well during the CT scan. Normally we have him sedated -- but they didn't have enough time on the schedule to do it under sedation so I said we could try without. He cried a little, but stayed very still. I sang to him (and everyone else in the room, lol) and he did calm down.

We had a lot of time to kill after the scan until we saw the neurosurgeon so we walked around the hospital halls and stopped at Starbucks for a latte and an applejuice (latte for me, juice for Jack, hee hee).

We signed in at the neurosurgeon's office and waited, and waited, and WAITED...Jack was having a full blown meltdown and I wanted to cry too. We were finally seen and the scan revealed a minute change in the size of Jack's ventricles. They were not convinced the outrageous behavior had anything to do with his shunt -- but were more convinced it was his seizure meds. They did a conference call with Jack's neurologist and he stated he didn't want any of the meds changed (I totally agree -- we finally have total seizure control). So we left without any real answers and we'll go for another CT scan in a few weeks to keep an eye on those ventricles.

The respridal has helped A LOT -- he hasn't had any excess sleepiness or anything else undesireable from the new med. It's taken away the 24 hour meltdowns and now when he gets upset it's definitely more in the typical or normal (for Jack) range. It's a temporary measure until we can sucessfully wean him from Tegretol and slowly ramp up his Valproic Acid...and see how his behavior is at that time.

Thanks for all of your thoughts and prayers -- they really, really mean so much!!

His neurologist's last day is next week. He called to check up on us last night and we went over our plan one more time. I thanked him for his help -- and he said to call early next week to let him know how we're doing before he has his last day. Like I said before, I will REALLY miss that man.