The Follow Up

First of all, I want to thank all of you so very much for your prayers and support to us since we've been on this diagnosis path. It has been truly the biggest encouragement to me to experience the love and care of our bothers and sisters in Jesus. THANK YOU! You all are the greatest!

We had our follow up with the neurologist today to talk over the results of Kate's EEG and MRI. Praise the Lord, the MRI results were completely normal. So there is nothing wrong with the structure of her brain that would be causing these problems. As long as there is nothing weird on the blood work results (they aren't in yet as we just had them redrawn yesterday, and I am pretty sure they are going to be normal) then Kate's diagnosis is Epilepsy. The neurologist was unable to pinpoint exactly what kind of seizure Kate has been having from looking at the EEG. She said Kate's entire brain was showing seizure activity which would be considered a generalized seizure. However, it appeared at certain points on the EEG strip that the seizure was beginning on the left side of her brain (which would indicate partial seizures.) But, because the seizure activity then spread so rapidly it was impossible to tell if they are true partial or general seizures. The medication that she has been placed on is to treat both kinds so it doesn't really matter what they are.

The medicine is working really well since Kate has been on it twice a day and she is on the smallest dosage right now, which is great! The game plan from here is that she will follow up with the neurologist every so often and have EEGs intermittently to make sure she really is seizure free. David and I need to keep an eye on her here at home and if we notice seizure activity returning we will call the doctor and increase her medication dose. If we get to a place were, we, the doctor, and the EEGs indicate that she has been seizure free for 2 years then we can begin to taper off her medication and see if perhaps she has grown our of the epilepsy. It is a possibility (and certainly our prayer!) that Kate could grow out of this.

I am just so grateful to the Lord for providing a diagnosis and working treatment plan for us so quickly! You never want your child to be having seizures, but it really appears that we are in the best position we could be given the situation! God is very merciful.

Thank you again for all of your prayers!

The MRI

*If you are squemish or really tender hearted, be warned*

Thank you for praying for Kate's MRI today and for checking in tonight! The procedure went pretty well. We (Marilyn so kindly went with Kate and I) got down to Presbyterian at 7 this morning (I had been awake since 3:45 though because I got up to go to the bathroom then and couldn't fall back to sleep. Why does stress keep us up?)

We got checked in and after the anesthesiologist came and talked us through the procedure Kate had to take some Versed to get her calm and "loopy" so they could take her back and start her IV (she was also going to be given laughing gas before her IV was started.) She was SUCH a good girl and took the whole syringe of medicine with out any fight or spitting it out. I held her, all wrapped in blankets to get her warm so her veins would plump, in a little room for about 40 minutes while the medicine took affect. It was so funny because after awhile she started yelling out random words like, "Nigh nigh!" or "Ba" (bath.) Then, it was time to hand her off to the anesthesiologist who was going to take her into the MRI room and start her IV and they'd do the procedure. It was pretty hard to hand her off and not be able to stay with her. I'm almost never away from her and when I am I know she's with people I know and trust. In hindsight I kind of wish I'd pressed to be able to stay with her until her IV was in.

After about an hour and a half it was time to go to the recovery area and pick her up. When I walked in a nurse was holding Kate and she was crying really hard and her little face looked so distorted! Her eyes weren't open all the way and looked puffy. She still had her IV in her hand and it was making her so mad and she was desperately thirsty. She GULPED a cup of water once I told them what she was asking for. I got really upset as I held her and she thrashed around and cried. I could see that they had stuck her at least 4 times trying to get an IV started! That was really hard for me to take. I know she was sedated while it was happening and she won't remember any of it, but it was so tough for me to see as a mom. We got discharged shortly after we got her back and after some lunch at home she has been doing really well all day.

The only thing that happened that I am super upset about is that Kate was supposed to get labs drawn while her IV was being started and she was sedated. Well, as I was pulling in to the driveway on our way home from the hospital I got a call that her blood had gotten diluted with IV fluid and was not going to be useable. I have to take her back and have them redrawn. I am completely sad about this! I can not stand the thought of her having to be stuck again and with no sedation. I am so anxious that since the anesthesiologist had to stick her 4 times that the lab tech won't be able to get a vein. I am trying to surrender it all to Jesus. I know He is caring for my baby more then I do, but it's really hard for me. So if you could please be praying for my heart to be at rest and for the blood draw to go really smoothly when we do go back. Thank you so much!

Kate is in bed now and I am ready for some much need relaxing with Dave. Thanks again for checking in!

A Diagnosis

Thank you to all of you who have asked about, commented, and prayed for Kate since my last post. We saw a pediatric neurologist on August 31st and while Kate's exam looked normal in the office (as in she was using both sides of her body appropriately with equal strength and things like that) the doctor wanted her to have an EEG and an MRI and blood work done.

We had the EEG performed last Wednesday (September 8th.) I had requested prayers for Kate to have an "episode" while having the EEG performed. We didn't see any sort of startle or episode during the test and I felt pretty discouraged after it was over. It felt like such a lot to go through only to have it be useless. But then, this Wednesday, the nurse from the neurologist's office called and said that the EEG did show seizure activity even though Kate showed no visible signs of a seizure at the time. Right now it looks like she has some form of Epilepsy (a broader term for many different types of seizures that have no other underlying cause.) The doctor wanted her started on medication right away to get the seizure activity under control.

We started Kate on the anti seizure drug called Topamax (topiramate) last night and already this morning I have noticed that she hasn't "startled" once or had a seizure. She does seem a little "off" but she is also a bit sleep deprived right now so it's hard to say if that's the medicine talking or just being tired. We were told that she probably will be more tired and possibly have a loss of appetite as she adjusts to taking the medicine.

I don't have many more details beyond that right now because I've only been able to speak with the doctor's nurse as of right now. We won't see the doctor again until September 28th after Kate's MRI is performed next Wednesday the 22nd. She will have anesthesia for the MRI since she's too young to lay still for the test and her blood work will all be drawn while she is under sedation (I'm very glad for that!) Please pray for us for that whole experience! She can't eat or drink anything before the test because of the anesthesia, and if you know Kate, that is a hard thing to accomplish! Thankfully, the MRI will be done at 8am so she won't have to be deprived too long:)

Thanks for your continued prayers!