New Tuesday Activity

An old friend of mine had invited me to go for a walk/jog around Lake Miramar.  Kaylee and I were happy to oblige.  As it turns out, she couldn't make it, so Kay and I had a nice walk/jog on our own.  We rescheduled with my friend for next Tuesday, but I think we will make it a regular thing.  We can go straight from physical therapy to the lake.  

It is a beautiful 5 mile walk.  

This is the point where I started to run.  I had planned to run at the 3 mile marker, but there was no 3 mile marker, so this had to do.

This last and only straight away before you reached the parking lot. Has a beautiful view of San Diego.  You can see all the way to the beach on a clear day, which is about 16 miles away.

Kaylee slept through the whole ride and woke up at the end.  I ended up having to walk a bit during that last stretch.  I really need some arch supports for my flat feet.  Mark says it's because I'm old

A few more things regarding Kaylee.  As it turns out, we are holding off on the orthotics for now.  Yay!  One less thing to fight her on.  Her new meds are going well so far, but we haven't completely taken her off the Topamax, so we won't know for sure until a month or so from now.

I will be starting a parent training speech therapy class that is funded through the regional center beginning on Monday night.  It's a nine week course, so I'm hoping it will be helpful in working with Kay.  That in combination with scaling off of the Topamax (which can cause issues with speech), we are hoping to get Kaylee really talking in no time.  She is probably at about a 12 month level for speech, so it's not too bad.  She says about eight words consistently, including Mama & Dadda.  So we'll see how that goes.

Trip to Dr. Neuro

This was another easy appointment.  We've had a lot of appointments, but thank goodness they have been easy!  Kay got a clean bill of health from Dr. Neuro.  We are still scheduling her repeat MRI, since it's been a while since she had one (last time was when she was 5 weeks old).  He said he would like to see her pick up in the development department, but otherwise is satisfied with her progress.  He thinks with continued therapy that things will pick up.  He definitely recommended adding speech therapy to her regime.  

We have also decided to switch AED meds.  We are going to scale off the Topamax and try Trileptal. The Topamax has worked great, but the doc and I feel pretty confident that she has beaten the IS, FINALLY!  Yay!! We believe that the Topamax may be effecting her speech, since her cognitive skills are fantastic, but she just doesn't talk much.  She says less than 10 words at 18 months.  The only way to see if it's seizure or drug related is to switch things up.  We are also hopeful that she will finally grow some hair too (hair loss is another Topamax side effect).  Not that her baldy little head isn't cute, but it's sad when she wants to put bows in and brush her non-existent hair.  She rests all my ponytail bands and barrettes on top of her head and does a kind of "TA-DA".  It's cute ;)  So, hi ho, hi ho, it's off to the drug store we go this afternoon.  Hoping we don't get any static from the insurance company with the new drug, like we did with the Keppra.  Doc said he has had good luck with insurance companies and Trileptal, so we shouldn't have a problem.  So we begin our three week scale down today.  Here's the schedule:

Week 1- 3 pills at each dose time, 90mg per day

Week 2- 2 pills at each dose time, 60mg per day.

Week 3- 1 pill at each dose time, 30mg per day.

All the while she will be going up on the Trileptal.  So fingers crossed everyone!  The Trileptal seems to have pretty much the same side effects as the Keppra, which were minimal, so we are hopeful it will work.

On a side note about Dr. Neuro...we got Javi's EEG scheduled to get him checked out.  He will have a few hour, sleep deprived EEG in March.

We're home!

It appears the new dosage worked very well. We tried to force an event with drug deprivation, but nothing of any real significance occurred. There were a couple blips here and there, but nothing like she was having for the last few days. Isn't that Murphy's Law?! This is a time when we really like Murphy! We are hopeful that the Topamax will continue to work. Dr. Neuro raised her dose one more time, just to make sure and said he wants to see us back in December. At that time, we are going to schedule a repeat MRI just to make sure there aren't any tubers putting pressure on the right cortex where he found some slowing in her brain waves.

Her focus appears to be just in the left frontal lobe, so that was excellent new to hear that it is isolated to one area of the brain. He is still suspicious of TSC, but is anxious to find out what Dr. Genes will say at the end of the month. He wants my sister and I to get tested.

I am completely exhausted. I still plan on going to the RDI conference tomorrow morning. We have respite care coming in for eight hours a day to help Mark out. I'll only be away overnight. Well, I'd better get some rest and get to packing for my next trip! Thanks everyone for all your well wishes, prayers and phone calls. I know I haven't been able to get back to everyone, but I promise I will when I get home from my trip.

Update, Dr. Neuro

We talked with Dr. Neuro about Kaylee's seizures, he gave us a few
different treatment options.

1. Increase her Topamax to the max dose slowly and see if it curbs the seizures and spasms.

2. See the dietician to begin the Ketogenic Diet.

3. Vigabatrin

Dr. Neuro said he doesn't need to do a repeat vEEG to confirm. He said if it looks like spasms, it's spasms. He said he didn't want to waste time testing, he wanted to move straight to treatment. Given that her other seizures had kicked up in frequency as well, he felt that we
needed to move quickly. He said he was confident that I knew what to look for.  Also, it doesn't really change the course of treatment, since we are not going to use ACTH again.  She didn't do well on ACTH and it didn't work well on her either.

It wasn't the answer I was hoping for at all. I wanted him to stand up and say, no, you are probably wrong, there is nothing to worry about. Our Dr. Neuro puts a lot of stock in a mother's intuition. He thinks that more doctor's need to listen to that instinct.

We have not made any firm decisions on treatment yet, but we are leaning toward diet and Topamax. For the time being, the increased dose of Topamax has kept the seizures at bay. She has been very wakeful at night, so we are not yet certain if that is from seizures or from increased meds. The doctor said we need more time to see which one it is.

It's very disappointing.  We really thought we had the IS beat.  We were pretty knew we may never be free of the Complex Partial's, since she had occasional seizures with TSC.  I guess we just feel blessed that we were free of the IS since the end of April 08.  One year ago almost to the day is when the IS began and we have come a long way since that bumpy road.  October is our favorite month, but these last couple haven't been so great.  We are hoping we won't be celebrating another one of Mark's birthdays at Children's Hospital.  As nice is the hospital is, it's not a good place to party :)  Kaylee has plans to dress as the "littlest angel" for Halloween, so we are hoping to be able to do the typical dressing up and trick or treating this year.  It will be her first, since she was on ACTH and in misery last year.  She had swelled up so much, we couldn't zip up her costume.

Calling on all prayers to see us through this rough time.  Hoping for a speedy cessation of the spasms and are next course of treatment will work with minimal side effects.

Return of the Spasms?

Well, we have had a few more of the complex partial seizures than normal. She may have 3-4 a month, but this week, she's had seven in the last four days. I spoke with Dr. Neuro today and he decided to up her dosage of Topamax. He said that if we didn't see a reduction in her seizures by Monday, that he wanted to move up her vEEG and possibly change her meds. We discussed putting her back on Keppra, since we had great luck with it before the onset of the IS. We were so confident that the spasms were not going to return, but two hours later, I took some video of Kaylee.

I just stared at her, completely frozen when it first began, even though the camera was right in front of me. I was in such shock and disbelief, that I guess it just didn't process right away. She was making these movements for a good two minutes before I started filming and they occurred every two to ten seconds. The whole top half of her body would stiffen up. Please comment and tell me what you think. I will be calling the doctor tomorrow.




I'm trying not to get too upset about it yet, because I have only caught it once. She's definitely been making some weird movements lately, but we have been so busy this week, I haven't had a chance to just stare at her to see a pattern. My gut tells me that this isn't good, but I want to see a pattern before I start to worry. We know that even if it is, ACTH is not an option for us. It didn't agree with her the first time, so we will definitely be headed toward Vig. I actually already have the referral letter to a doctor in Mexico just in case the Topamax didn't curb the spasms when the ACTH didn't work the first time around. We'll see what happens tomorrow. Please pray that I am wrong...

Neuro logic?

Today's appointment was frustrating to say the least. We walked in to a very busy waiting room, so we knew that we were in for a rushed appointment, which is the last thing you want when you wait almost two months for an appointment.

We were seen in a timely fashion, as usual and our doctor was very pleasant as usual. He is a nice doc and has an excellent bedside manner, however, on this particular appointment, I have to question his logic.

I reported that Kaylee has been making some strange new movements, but we haven't seen her make the exact same movements each time that we have noticed. They are similar. She gets a blank stare on her face then kind of holds her hands up. She does this about 4-5 times a month, so it's not all that often. However, she is on Topamax.

We also reported that we were unsure whether or not she was having seizures at night, since she hasn't sleep in our room in months.

We reported her results of her OT and PT evals and the EI's reports. She is currentlyfunctioning at about an 8-9 month level overall. She is going on 13 months now.

He basically told us that because she was making progress he wasn't concerned. I asked why he wasn't concerned, since as of our last appointment she was only about a month or two behind. He said that since cognitively she seemed on track, that he wasn't concerned with the fine and gross motor being off.

He also seemed very fixated on the diagnosis of TSC, even though I had brought up that she doesn't show any other symptoms of TSC. Our family shows some symptoms, but nothing conclusive. She has completed the genetic testing which was also inconclusive.

I challege the diagnosis because I just don't get a strong gut feeling that it's right. My gut has been right so far, so I tend to listen to it.

I am concerned about a 13 month old baby that just began crawling two weeks ago. Kay is not standing on her own or walking. I know that the walking deadline is 18 months, but I'm not going to burry my head in the sand until then. Sorry, I made the mistake of listening to a
doctor tell me my baby was ok once already and Javi turned out to have Autism. Fortunately, Kay already receives a lot of services that Javi missed out on with out a diagnosis, but that is exactly my point, how far behind would she be without them? Would he be more interested in
getting to the root of the problem then?

We are in the works for a repeat vEEG, but I pretty much had to push for a repeat. He increased her meds for the time being.

I know that it may not change the treatment plan, but something tells me something is a miss. I think it's time for a second opinion.

Shanna Grimes
(Sent from my iPhone)

Neuro Appointment

Kay had her neuro follow up yesterday.  Pretty good news all around.  We increased our dosage of Topamax a little to try to counteract the spasms she has been having lately.  We are hoping the new dose will eliminate any of the break through spasms she was having which is was only one cluster of 3-4 spasms like every few days for the last few weeks and one cluster of twenty a couple of days ago, which is a dramatic reduction from before the Topamax days.  We are going to give it about three weeks on the new dose before moving to the big guns, Vigabatrin.

The best news of all, is that he has "high hopes" for Kay's development.  He said he has every reason to believe that she will be developmentally normal, which is big news in our family.  We do still have a small gap to fill with her development because of the ACTH, but she gains new skills almost everyday.  Yesterday she even managed a four syllable AH-GOO-BA-GA.  I guess she told us!  She had a lot to say, but to anyone who knows, Kay, that is no surprise.  She is always putting her two sense in.  

We are going to delay her repeat EEG for at least a couple months to see where she is at and whether or not she is going to need Vigabatrin.  It's scary to think that she may be crawling by the time we have our next EEG!  Good luck trying to keep her down.

Tomorrow we go for our well check with the pedi doc, although we already know that Kay is down to a svelte 16.4 lbs, compared to her previous weight check with Dr. Neuro at a whoppin' 17.8 lbs just three months ago, just before she finished the ACTH.  She is still our little chunky cheeks though!