Soren's school has a summer session, and since Soren is 5 going on 6, he was moved up to the next class. This made me a little nervous, since he has been with the same teacher since he was 3. She is awesome and challenging and has been so great for Soren.
But it seems that Soren is adjusting. It took a couple days. I got some notes back saying that Soren was doing some heavy napping. This is his way in a new situation until he feels it out. It's a defense mechanism.
He started in the new class on June 29th. And now, on July 9th, he seems to have adjusted. He went from being attentive 75% to 80% to 90%. That's pretty darn good for our boy!
And he's really seeming to respond to music. His previous teacher noted this when a Marimba band came to perform at the school. Now his current teacher is noting that Soren is responding to music as well. We've been doing some music therapy for the past 4 months or so, so maybe this is waking up some senses.
Anyhow, in the end, while change is scary and sometimes hard, it's also hopefully for the best and helps move things forward.
That's what I'm hoping for my mysteriously musical little boy.
Amy
Thursday, July 09, 2009
Sunday, June 28, 2009
Quick Update
Ah, once again I have been neglect in my blogging duties. I apologize. I've been very busy. Here's a quick update...
1.) Soren is now off the anti-virals after we decided they were not the appropriate mode of treatment.
2.) While on the meds, I did get into the habit of feeding Soren breakfast and a snack, which he chowed down with great abandon. Turns out the poor boy was hungry! In the past month, he's gained almost 2 pounds due to this calorie increase.
3.) I took Soren off avocado. But he ended up having a few seizures anyways, so I brought it back.
4.) I discovered that Trader Joe's Edamame and Egglant Hummus are delicious. Soren thinks so too!
5.) Soren's seizures/spasms have been few and far between.
Soren's still staying off cow's milk and cheese at the moment since we actually think this may have helped decrease the seizures a bit. Actual allergy testing may be in Soren's future.
That's it!
Amy
1.) Soren is now off the anti-virals after we decided they were not the appropriate mode of treatment.
2.) While on the meds, I did get into the habit of feeding Soren breakfast and a snack, which he chowed down with great abandon. Turns out the poor boy was hungry! In the past month, he's gained almost 2 pounds due to this calorie increase.
3.) I took Soren off avocado. But he ended up having a few seizures anyways, so I brought it back.
4.) I discovered that Trader Joe's Edamame and Egglant Hummus are delicious. Soren thinks so too!
5.) Soren's seizures/spasms have been few and far between.
Soren's still staying off cow's milk and cheese at the moment since we actually think this may have helped decrease the seizures a bit. Actual allergy testing may be in Soren's future.
That's it!
Amy
Thursday, May 28, 2009
Making New Habits
We all know it's not easy to make new habits and very hard to break old ones. Which is the struggle I am facing now.
Soren is now on an anti-viral medicine. It is a medicine that is to be given three times a day. I give Soren all his meds in the am and pm. And I don't want to bother his school with the middle dose if it ends up not being permanent.
So I'm doing it. Or I'm trying. But this is very much not in my routine, so I'm struggling.
There are various components to my struggle.
1.) The lunch meds...I do well on the weekends, when I feed him lunch. But then when he's back at school, I forget to give him his afternoon dose when he gets home from school. Ugh.
2.) I'm also supposed to be giving him a multi-vitamin, something I've been incredibly lax about doing. I think I gave it to him one day and then have forgotten since.
3.) Soren is currently on 5 meds (3 anti-seizure, 1 antibiotic, 1 anti-viral) In the morning, I used to just plop the pills in his mouth, give him his bottle, and have him swallow them down. Now there are so many, he's choking! And it's not a big breakfast kinda guy.
4.) Due to the diet changes, I need to make sure that Soren is getting in enough calories, so I need to add more food.
So this is the habit I'm trying to form.
1.) Feed Soren a little breakfast (emphasis on little) just to get the pills down. Some banana and Rice Krispies, maybe some Cream of Wheat (if it's allowed). Just something that will do better and no choking.
2.) Feed Soren a little snack after school. Usually he gets off the bus and I just let him chill in his vision box until dinner. But today, having forgotten his lunch meds at Feeding Therapy, I fed him a snack. Now, mind you, he had CHOWED DOWN at Feeding Therapy.
Well, clearly the boy was hungry, because he then wolfed down the snack, pills and all.
Wish me luck. I am a creature of mainly bad habits but I'm hoping these good ones will stick.
Amy
Soren is now on an anti-viral medicine. It is a medicine that is to be given three times a day. I give Soren all his meds in the am and pm. And I don't want to bother his school with the middle dose if it ends up not being permanent.
So I'm doing it. Or I'm trying. But this is very much not in my routine, so I'm struggling.
There are various components to my struggle.
1.) The lunch meds...I do well on the weekends, when I feed him lunch. But then when he's back at school, I forget to give him his afternoon dose when he gets home from school. Ugh.
2.) I'm also supposed to be giving him a multi-vitamin, something I've been incredibly lax about doing. I think I gave it to him one day and then have forgotten since.
3.) Soren is currently on 5 meds (3 anti-seizure, 1 antibiotic, 1 anti-viral) In the morning, I used to just plop the pills in his mouth, give him his bottle, and have him swallow them down. Now there are so many, he's choking! And it's not a big breakfast kinda guy.
4.) Due to the diet changes, I need to make sure that Soren is getting in enough calories, so I need to add more food.
So this is the habit I'm trying to form.
1.) Feed Soren a little breakfast (emphasis on little) just to get the pills down. Some banana and Rice Krispies, maybe some Cream of Wheat (if it's allowed). Just something that will do better and no choking.
2.) Feed Soren a little snack after school. Usually he gets off the bus and I just let him chill in his vision box until dinner. But today, having forgotten his lunch meds at Feeding Therapy, I fed him a snack. Now, mind you, he had CHOWED DOWN at Feeding Therapy.
Well, clearly the boy was hungry, because he then wolfed down the snack, pills and all.
Wish me luck. I am a creature of mainly bad habits but I'm hoping these good ones will stick.
Amy
Monday, May 18, 2009
Okay, I'm Back!
Sorry I have fallen off posting yet again! Life has been crazy-busy work work (yay!) and illness (boo!). Soren had a stomach bug right after Spring Break, then a week later he had a fever, then that Friday, his fever returned and wouldn't break. Finally I got him into the doctor and discovered that it was an ear infection. Got Soren on the mend, and then Mo got a cold!
The good news through all of that for Soren is that he had very few seizures---something that is very rare in that situation. We are now seeing a neuro-immunologist who has recommended I take Soren off dairy and put him on anti-virals. I did the dairy first and the lack of seizures continues (last one we saw was Mother's Day). I started the anti-virals today, so we'll see if there is any change.
Next I need to remove avocado, which is going to be hard. 1.) Because Soren loves it and 2.) Because I have very little cooking imagination. But we have a great cookbook on delicious and healthy foods for babies. I will delve into it and see if I can widen Soren's repertoire.
I promise to keep you updated on any changes!
Amy
The good news through all of that for Soren is that he had very few seizures---something that is very rare in that situation. We are now seeing a neuro-immunologist who has recommended I take Soren off dairy and put him on anti-virals. I did the dairy first and the lack of seizures continues (last one we saw was Mother's Day). I started the anti-virals today, so we'll see if there is any change.
Next I need to remove avocado, which is going to be hard. 1.) Because Soren loves it and 2.) Because I have very little cooking imagination. But we have a great cookbook on delicious and healthy foods for babies. I will delve into it and see if I can widen Soren's repertoire.
I promise to keep you updated on any changes!
Amy
Wednesday, April 01, 2009
Depakote
We started Soren on Depakote a few weeks back and are getting some really good results. While we weren't thrilled with the thought of having Soren on 3 anti-epileptic drugs again, with the looping Juvenile Spasm Clusters, it was clearly necessary.
Our original plan was to keep him on as low a dose as possible. The theraputic dose for Soren is 2 pills twice a day. There's no way to split these pills, so I started him on one full pill. It immediately cut down the clusters, just giving him one spasm now and again. But within 5 days, the clusters were back, so we brought in the morning dose.
Again, things got better. We went longer without clusters this time. But then they kicked back in, so we went up to a full dose in the evening. That was last Thursday and the clusters are gone again. I've seen one or two spasms, but nothing really bad. I'm hoping that once this is fully in his blood, it might do the trick. If not, I'll go up that last bit.
I'm pleased that this has knocked down the clusters. Hopefully we have regained some seizure control!
Amy
Our original plan was to keep him on as low a dose as possible. The theraputic dose for Soren is 2 pills twice a day. There's no way to split these pills, so I started him on one full pill. It immediately cut down the clusters, just giving him one spasm now and again. But within 5 days, the clusters were back, so we brought in the morning dose.
Again, things got better. We went longer without clusters this time. But then they kicked back in, so we went up to a full dose in the evening. That was last Thursday and the clusters are gone again. I've seen one or two spasms, but nothing really bad. I'm hoping that once this is fully in his blood, it might do the trick. If not, I'll go up that last bit.
I'm pleased that this has knocked down the clusters. Hopefully we have regained some seizure control!
Amy
Saturday, March 07, 2009
Seizure Update
So as I wrote previously, on December 3rd, Soren started having what I thought were Absence seizures. They started the night I started Soren's Zonegran wean, so I knew that the two were not related and continued to wean him.
As the wean progressed, the "Absence" seizures grew in length and frequency. Finally, the weekend of February 21st, Soren started having these seizures in clusters. So I contacted his doctor and got the okay to increase Soren's Lamictal dosage.
However, his doctor was concerned and fit Soren into his very busy schedule to check him out. I knew that the chances of Soren having a cluster in front of Dr. Shields were slim, so I video-taped him seizing and burned it onto a DVD. I'm so glad I did, because sure enough, Soren seized in the waiting room, but was happy as a clam in the exam room.
Turns out these are not Absence at all. They are Epileptic or Juvenile Spasms. Now Soren used to have Infantile Spasms, but since he is no longer an infant, they have a new name. Dr. Shields was clearly bummed about this development because we have been on all the "go to" drugs for Spasms. We discussed bringing him back on Zonegran, but I was confident that it would do nothing.
Instead, we have increased his Clobazam by have a pill in the evening. In a couple days we will add another half to the morning dose. If that doesn't work, we are going to start a drug Soren's never tried called Depakote. I know from other parents of kids with Spasms that the Clobazam/Depakote combination is a good one.
I'm hoping the Clobazam increase does the trick, but we'll see what happens. The good thing is he recovers from these just fine--bouncing right back as if nothing happened.
Amy
As the wean progressed, the "Absence" seizures grew in length and frequency. Finally, the weekend of February 21st, Soren started having these seizures in clusters. So I contacted his doctor and got the okay to increase Soren's Lamictal dosage.
However, his doctor was concerned and fit Soren into his very busy schedule to check him out. I knew that the chances of Soren having a cluster in front of Dr. Shields were slim, so I video-taped him seizing and burned it onto a DVD. I'm so glad I did, because sure enough, Soren seized in the waiting room, but was happy as a clam in the exam room.
Turns out these are not Absence at all. They are Epileptic or Juvenile Spasms. Now Soren used to have Infantile Spasms, but since he is no longer an infant, they have a new name. Dr. Shields was clearly bummed about this development because we have been on all the "go to" drugs for Spasms. We discussed bringing him back on Zonegran, but I was confident that it would do nothing.
Instead, we have increased his Clobazam by have a pill in the evening. In a couple days we will add another half to the morning dose. If that doesn't work, we are going to start a drug Soren's never tried called Depakote. I know from other parents of kids with Spasms that the Clobazam/Depakote combination is a good one.
I'm hoping the Clobazam increase does the trick, but we'll see what happens. The good thing is he recovers from these just fine--bouncing right back as if nothing happened.
Amy
Sunday, March 01, 2009
Little Loops
Hey all,
I know, it has been FOREVER!!! I apologize, but life is busy.
The "little loops" I am speaking of are the Absence loops that Soren has been getting into. They started last weekend (Feb. 20). I noticed it when I was feeding Soren. He had an Absence and recovered. Then he had another. And another. This went on for a solid 3 or 4 minutes. I was actually fearing I was going to have to give him Diastat.
But then, as oddly as they started, they stopped. He was fine, alert, and finished eating as if nothing had happened. He did the same thing on our drive home (we were in Scottsdale). But it passed and all was well.
So I sent an email to Soren's neurologist on Monday and got the okay on Friday to increase his Lamictal by 25 mgs on the evening dose. So we'll see if that has any effect. I'm a little doubtful because the Lamictal doesn't appear to do much, but I could be wrong. I hope I am.
I'll keep you in the loop on the loops.
Amy
I know, it has been FOREVER!!! I apologize, but life is busy.
The "little loops" I am speaking of are the Absence loops that Soren has been getting into. They started last weekend (Feb. 20). I noticed it when I was feeding Soren. He had an Absence and recovered. Then he had another. And another. This went on for a solid 3 or 4 minutes. I was actually fearing I was going to have to give him Diastat.
But then, as oddly as they started, they stopped. He was fine, alert, and finished eating as if nothing had happened. He did the same thing on our drive home (we were in Scottsdale). But it passed and all was well.
So I sent an email to Soren's neurologist on Monday and got the okay on Friday to increase his Lamictal by 25 mgs on the evening dose. So we'll see if that has any effect. I'm a little doubtful because the Lamictal doesn't appear to do much, but I could be wrong. I hope I am.
I'll keep you in the loop on the loops.
Amy
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