Friday was a LONG day...all five of us had appointments scattered between 8 and 4. Add onto that, the gastro bug decided to take a second hit at me. I was NOT feeling well at all.
The morning started with a visit to Austin's local neuro. I use the term local loosely because she is actually from NYC and visits our area twice a month. She is considered Austin's secondary neuro...and that was her choice. She felt that because she had a large caseload and because she was located 3 hours away and because the Boston neuro had been in place longer, that she was comfortable with the secondary status....that is, until Friday. Austin had been on schedule for EEG's brain MRI's and ERGs every six months. We go to Boston to have this all done. Well our insurance decided to deny those visits this time around. I talked to the Boston neuro and because Austin was stable and things were going good, then he (and I) were okay with it. I even relented and said I'd do the next 24 hr EEG here at home. But this was BEFORE we started noticing the recent issues. And I think we handled the unexpected well. We managed to get a quick EEG, even if I am not altogether convinved by the results of it.
As soon as I started updated the neuro about all that has transpired since we last saw her, she freaked. She reminded me how critical it is to maintain control and to react at my intuition and to not let the scheduled six month appts slide. She stated she felt she should take over as primary and that if insurance denies out trip to Boston or even our trip to Beth Israel (her hospital) in NYC, then she can get him in down there on Medicaid. I felt chastised. Jeff was upset by her attitude towards me and that I let the ball drop. He was annoyed. And while I appreciate him wanting to 'protect my feelings'...she actually very right. I am normally 100% on top of everything and I never let the insurance company tell me no. But for a short stretch of summer and fall, I just didn't have the fight in me to deal with it. And I did let it go. Of course at that point I thought everything was great and fine...my intuition wasn't reading far enough ahead.
We decided to proceed with the 24 hour EEG scheduled locally and if there is ANY question about the reading she plans to admit Austin to Beth Israel...even if she has to use Medicaid to get him there. The problem is...I do NOT want to go to NYC with Austin by myself. While I have never really been into the city...just the thought of it scares me. It is such a bigger city than Boston.
Also, I discussed all the TS stuff with her based on the geneticists appt the other day. She was incensed that they would not test Connor. She decided then and there that she would add Connor to her caseload and take over the TS issue. This is a big deal. She takes on VERY few patients because she is only here two days a month and I don't think she has EVER taken on a child without seizures. She is an epileptologist. So it was a good and bad start to my day. She gave me lots to do to prepare for our next appt.
Our next stop was to the pediatrician for Ben and Connor's three year old check up. Ben tips the scales at 35 lbs and 37.5" and Connor, my lightweight, is 31 lbs and 37". You may think, oh that's only 4 lbs, but there is just a density difference between those two. Ben is SOLID and Connor is like puffy air. But the good news is they are healthy, perfect boys. The ped also agreed to take up the issue of TS testing with the insurance company. She will work with the NYC neuro to get everything into place.
Next up was my appt. It was supposed ot be a well visit, but since the GI bug took another hit at me we spent it ruling out other causes. By late saturday I was feeling better.
The last appointment of the day was Jeff's. After the geneticist appt the other day, we scheduled him to talk to his doctor about TS testing. While the dr admitted he didn't know all the specifics of the disease, he whole-heartedly agreed that Jeff should have a full diagnostic screening. I am waiting to hear today on whether pre-approvals were obtained so we can schedule him.
A long day, but a productive day. I feel all the doctor's are on the same level now...we are all working toward the common goal of getting seizures gone, getting Austin's development back...and making sense of the whole TS issue. FINALLY!
Showing posts with label seizures. Show all posts
Showing posts with label seizures. Show all posts
Monday, February 05, 2007
Thursday, January 11, 2007
Intuition
It must be a mother's intuition. On our Infantile Spasms support group, we have a saying that 'if mom thinks something is wrong, it must be". It doesn't matter that the neuro thinks you are crazy, just trust your instincts.
I created panic on Monday when I left the message for Austin's OT that he wasn't ready for school. Then I went into the fact that he seemed off and that I thought an EEG was necessary. So I trudge on, work hard and get the EEG scheduled for Monday.
Well, it's a damn good thing I did. I just got a call from Jeff to tell me he was on his way home with the kids. He said as he was buckling Austin into his carseat he was almost positive that he had a seizure. This is how it happened the last time too. We had weaned Austin from the Vigabatrin in April 05. He had had a normal EEG one month prior. Within a week or so of coming off the Vigabatrin, I told Jeff something was wrong and that Austin was off. I don't know how else to describe it. Sure enough, an EEG showed he was having activity again. There were no clinical seizures at the time so the neuro urged us to leave his meds as they were and watch him. It took 6 months, but the seizures reappeared. We put him back on the Vigabatrin and he has been seizure free for 14 months. In that time we have never increased his meds and he has gained about 10 lbs. I think he is outgrowing he dose he's been on and I think there is more activity on the EEG. Of course we'll have to wait until Monday...well actually later in the week, when the report is released to know for sure.
At least I was on the ball this time and hopefully, we can increase meds and get him back under control. Thank God that Vigabatrin has always worked until now. I just need to hope it'll work again.
I created panic on Monday when I left the message for Austin's OT that he wasn't ready for school. Then I went into the fact that he seemed off and that I thought an EEG was necessary. So I trudge on, work hard and get the EEG scheduled for Monday.
Well, it's a damn good thing I did. I just got a call from Jeff to tell me he was on his way home with the kids. He said as he was buckling Austin into his carseat he was almost positive that he had a seizure. This is how it happened the last time too. We had weaned Austin from the Vigabatrin in April 05. He had had a normal EEG one month prior. Within a week or so of coming off the Vigabatrin, I told Jeff something was wrong and that Austin was off. I don't know how else to describe it. Sure enough, an EEG showed he was having activity again. There were no clinical seizures at the time so the neuro urged us to leave his meds as they were and watch him. It took 6 months, but the seizures reappeared. We put him back on the Vigabatrin and he has been seizure free for 14 months. In that time we have never increased his meds and he has gained about 10 lbs. I think he is outgrowing he dose he's been on and I think there is more activity on the EEG. Of course we'll have to wait until Monday...well actually later in the week, when the report is released to know for sure.
At least I was on the ball this time and hopefully, we can increase meds and get him back under control. Thank God that Vigabatrin has always worked until now. I just need to hope it'll work again.
Intuition
It must be a mother's intuition. On our Infantile Spasms support group, we have a saying that 'if mom thinks something is wrong, it must be". It doesn't matter that the neuro thinks you are crazy, just trust your instincts.
I created panic on Monday when I left the message for Austin's OT that he wasn't ready for school. Then I went into the fact that he seemed off and that I thought an EEG was necessary. So I trudge on, work hard and get the EEG scheduled for Monday.
Well, it's a damn good thing I did. I just got a call from Jeff to tell me he was on his way home with the kids. He said as he was buckling Austin into his carseat he was almost positive that he had a seizure. This is how it happened the last time too. We had weaned Austin from the Vegetarian in April 05. He had had a normal EEG one month prior. Within a week or so of coming off the Vigabatrin, I told Jeff something was wrong and that Austin was off. I don't know how else to describe it. Sure enough, an EEG showed he was having activity again. There were no clinical seizures at the time so the neuro urged us to leave his meds as they were and watch him. It took 6 months, but the seizures reappeared. We put him back on the Vigabatrin and he has been seizure free for 14 months. In that time we have never increased his meds and he has gained about 10 lbs. I think he is outgrowing he dose he's been on and I think there is more activity on the EEG. Of course we'll have to wait until Monday...well actually later in the week, when the report is released to know for sure.
At least I was on the ball this time and hopefully, we can increase meds and get him back under control. Thank God that Vigabatrin has always worked until now. I just need to hope it'll work again.
I created panic on Monday when I left the message for Austin's OT that he wasn't ready for school. Then I went into the fact that he seemed off and that I thought an EEG was necessary. So I trudge on, work hard and get the EEG scheduled for Monday.
Well, it's a damn good thing I did. I just got a call from Jeff to tell me he was on his way home with the kids. He said as he was buckling Austin into his carseat he was almost positive that he had a seizure. This is how it happened the last time too. We had weaned Austin from the Vegetarian in April 05. He had had a normal EEG one month prior. Within a week or so of coming off the Vigabatrin, I told Jeff something was wrong and that Austin was off. I don't know how else to describe it. Sure enough, an EEG showed he was having activity again. There were no clinical seizures at the time so the neuro urged us to leave his meds as they were and watch him. It took 6 months, but the seizures reappeared. We put him back on the Vigabatrin and he has been seizure free for 14 months. In that time we have never increased his meds and he has gained about 10 lbs. I think he is outgrowing he dose he's been on and I think there is more activity on the EEG. Of course we'll have to wait until Monday...well actually later in the week, when the report is released to know for sure.
At least I was on the ball this time and hopefully, we can increase meds and get him back under control. Thank God that Vigabatrin has always worked until now. I just need to hope it'll work again.
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