Sabril 24-Day Update & Doctor Visit

Today we went to see the {new} neurologist.  It was actually our first clinic visit with the doctor, and even though I’ve gotten to know the medical center pretty well lately, it was still stressful.  The card they had given me was not to her clinic office, but to her teaching office, but I didn’t know that at the time.  So, I found the nearest parking garage, parked and entered the building.  But, I was completely lost and asked someone for directions.  It was a gentleman in regular street clothes, and I didn’t know if he’d be able to help, but it turns out he was a doctor.  He explained that the address was for the teaching office, and that she wouldn’t be seeing patients there.  He told me where to go and even escorted me most of the way.  We were trying to avoid walking in the rain, and we were able to find a way through the maze of connected skywalks.  We chatted on the way and he told me he and his wife are expecting their first in just 2 weeks, so he completely understood trying to keep the little guy dry.

When the elevator doors opened, I saw that there was a regular pediatric clinic to one side and the specialty pediatric clinic to the other.  There wasn’t any doubt which way to go, and I knew all the parents and babies in there were going through their own struggles.  Since it was our first time in the clinic we had to fill out all the usual forms and give them our insurance cards, etc.  Then, I knew we’d have a wait, so I took my time and took Z to change his diaper.  When I finally sat down, a nice lady, her husband and baby girl were sitting next to me.  She was pointing to Z and was telling her baby girl (probably a bit over a year) to look at the baby.  She mentioned waiting a long time to see the doctor, but then mentioned 20 minutes, which I didn’t think was bad at all, especially after spending 4 hours at the ophthalmologist the day before.  But, I was making polite conversation as people do and it turns out she was there to see a neurologist too.  I asked if she was there to see Dr. V, and she didn’t know, just that she was there to see the neurologist.  Well, in the midst of our brief conversation, a nurse came out and called Z, so I stood up to follow.  The “nice” lady I had been talking to stood up and said “oh nuh-uh, she just got here and we were here first to see the neurologist.”  From our conversation, I knew that her appointment was at 1 but hadn’t gotten the chance to tell her ours was at 1 too.  It just appeared to her that we literally walked in and within 5 minutes we were going back to see the doctor.  In actuality, we had been there probably as long as she had been, but we had been in the front office doing paperwork.  Anyway, it was just one of those things, and I told myself that she was dealing with her sick little one and to cut her some slack.  But, at the same time, now I’m thinking I *won’t* be making small talk with anyone in the waiting room!!!

Once we went into the room, a resident came to visit us.  Now, I’m sure that residents have their hands full.  But, it was abundantly clear that she had never heard of Z, never read his file, and that she didn’t know much about his condition.  It was really frustrating.  But, at a teaching hospital, it’s just one of those things you put up with to get the good doctors.  Plus, who knows, maybe someday this resident will go on to help someone else’s baby, and maybe this experience will help her do so.  Still, it’s frustrating.  Plus, she told me that the MRI came back “clean”.  As in, no issues.  What?  Now it’s clean?  But, he’s still having seizures.  Plus, the 1st MRI and EEG, and all subsequent EEG’s have all pointed to that same spot.  How can it be gone?  Well, she must have saw the confusion on my face because she promptly said that she and Dr. V. will be looking at the MRI themselves to see if the radiologist missed anything.

After the run-in with the lady in the waiting room, the incompetent resident, and now a clean MRI, I was feeling very frustrated.  But, then Dr. V came in.  She instantly put me at ease.  She knows baby Z and she knows a lot about his condition.  Her first words were that she agrees with the first reading of the MRI done at Texas Children’s and sees the same focal spot on this MRI.  Well, that makes me feel better that nothing changed (for the worse) but it also makes me even more frustrated that had it been the only MRI we had and if a neurologist hadn’t checked it, that we would have had a “normal” read from that radiologist.  I guess it just emphasizes the need for a team approach and to never question getting a second opinion.

Dr. V stayed in the room with us for a while, talking about baby Z and how he’s doing on the Sabril, how he is developing, how his motor skills are doing, how he did at the eye exam, etc.  I showed her the video of a seizure from the night before, and SHE WATCHED IT!   That in itself is a huge improvement over our first neurologist!  She even showed the resident, saying that it was a good example of a classic infantile spasm, and taking the time to teach the resident.

They don’t have the full report from the MEG test, but the preliminary result is that they saw activity on both sides of the brain.  We’ll see once we get the final report, but if that holds true, that means that he would not be a candidate for surgery, and I’m both happy and upset about that.  I mean, I want a way to fix the problem.  But, brain surgery?  On my baby?  It terrifies me.  TERRIFIES ME!  So, the fact that we will pursue other avenues at this point is fine with me.  But, I do want options, so I do hope we have that option should nothing else work.

Dr. V has decided to keep baby Z on the Sabril for 2 more weeks since he is doing better.  She adjusted his dosage and we’ll see if that controls his seizures any more that it already has.  In two weeks, then we’ll change to either ACTH or the Ketogenic diet.  The ACTH is incredibly expensive.  As in, more expensive than you could possibly imagine.  Plus it has terrible side effects:  Cushings Syndrome (which causes weight gain, hypertension, insulin resistanse, diabetes, etc), Enlargement of the ventricals of the brain, high blood pressure, heart failure, high blood sugar, and that’s not even all of them.

Hopefully the Sabril will start to work better so we don’t have to change.


Sabril 11-day Update

I talked to the neurologist on Monday.  Well, I technically talked to her nurse and her assistant.  But, we adjusted his night-time dosage of Sabril to 10 ml.

Yesterday he had a really good day.  Hardly any seizures!  Plus, I started to see more activity on his right side which had definitely started lacking.  (If you remember, before all this started, he was favoring his right side, and then over time, was hardly using that side.   He had even started slumping to the right in his high chair, as if he didn’t have the strength to hold up that side.  It made sense, since the focal activity is in his left brain.  But, yesterday, all the sudden he started using the right side again.  It’s not like he automatically has all his motion back, but it was a definite improvement!  He even had a {very brief}  smile for his dad.

Today was good too, but not quite as good as yesterday.  He was still using his right side.  But, he did have a few more seizures, although they were still  just the quick ones.

I hope we continue to see improvements!  We’ll see what the EEG says when we do all the testing next week.

Bills… Bills… Bills…

Well, we’ve started getting all the bills now.  The first hospital stay at Texas Children’s was over $20k.    Needless to say, we’re so far past the point of meeting the deductible that now we’re past the out of pocket maximum.  So, from now, for the rest of the year, everything is “free”.  Ha.  Free.  That is, once we actually get it all paid.  Not that I’m complaining.  Really.  I’d do anything for my little guy.  But, it’s just something we hadn’t prepared for, and it’s just one more thing to stress about.

My husband’s company is getting purchase officially later this month.  We just changed insurance this past January and I feel like I just got the hang of all the changes, and now it will be changing again.   They tell us that the new insurance will honor the deductibles we’ve met this year till year end.  We’ll see.  It makes me nervous.  I mean, I know we’ll start over again in January, but I’m really hoping we don’t start over in September and also again in January.  Crossing fingers!

Sabril 7-day Update

Baby Z has been taking the Sabril for one full week now. He did 3 days at 3 ml, 3 days at 5 ml, and then transitioned to 7 ml. So far, it definitely has helped reduce the length of seizures, and even the quantity. However, from what I’ve read, helping isn’t enough. So the fact that he continues to have seizures is still a problem for his development, and will cause him to regress.

re·gress (r -gr s ). v. re·gressed, re·gress·ing, re·gress·es. v.intr. 1. To go back; move backward. 2. To return to a previous, usually worse or less developed state.

We need to STOP these seizures!  I’ll be chatting with the neurologist tomorrow!


Going for a MEG in a couple of weeks.  {MAGNETOENCEPHALOGRAPHY}

It’s basically a bigger, better brain scan combined with EEG.  Then they also do another MRI to compare.  He’ll also have ultrasounds of his heart and major organs.  The doctor wants to rule out Tuberous Sclerosis.  But, it’s also used to map his brain and check if surgery would be an option.

Apparently there are only about 15 of these machines in the country, and people travel long distances to get one.  I hope this testing finally gives us some good results.  I don’t know how much more bad news I can take.

Down to 3 meds… No more Trileptal

We’ve been transitioning off Trileptal all week, and as of today, we’re done.  So, we’re down to 3 meds:  Sabril, Clonazepam, and Keppra.

I’ll check in with the doc next week about the dosage instructions for transitioning off of Clonazepam, and then Keppra.

I’ll check in with her about the dosage of Sabril too.

It’s always somethin…

Yesterday I also mentioned to the neurologist that baby Z had noisy breathing, and asked if that was a side effect of the new medication (Sabril).  She said no, that he was probably coming down with something, and that I should take him to his pediatrician.

I took him this morning and she could hear him, but checked his pulsox, which was 100%, so he wasn’t having trouble getting enough oxygen.  She used the tongue depressor to check his throat, and looked in his ears and nose.  She didn’t find anything, so she sent us for an x-ray of his throat.  When she got the results back from the lab, it said that the x-ray picked up something that was either an infection or something developmental.  She looked down his throat again, and said she doesn’t see an infection, so she referred us to an Ear, Nose and Throat (ENT) doc.

So, we’ll be heading there next week.