Cameran had her appt today with the Neuro so heres the latest: We had her blood drawn to check her levels with all the
current meds she is on to see how she is tolerating them - to high to low. If things are ok we will raise probably the Topamax since thats what we are having the most luck with so far minus the feeding issues. We will get the results back in 2 weeks and with that we will decide what comes next. He has given us our options to think on. Her Neuro "Resident" is really pushing the ACTH route but we have decided that is a no go for now and a few of the Dr.'s up there agree. He says one Dr. use to offer ACTH but hasn't done so in 11 years due to the side effects and we are on the same page. Neuro Dr. "C"(our main Neuro) says it would be good to use if things started to get out of control but that there are no guarantees with ACTH and that some patients had no luck with it at all. He says everyone metabolizes meds different so there are no two people the same so therefore no gurantees and no right or wrong way going about the med choice it has to be what we are comfortable with! And we decided its just not the med for her, we are up for the Vig. since her eyes have already been checked and everything is fine there so if something was to come about we would know it was from the med. Right now things are calm she had only 4 seizures today which is wonderful so we are definetly heading in the right direction. They don't want to leave things the way they are so something will be done when we get the labs back. Right now the girl is knocked out after they told us to give her Melatonin to help her sleep at night since she wakes just about every hour during the middle of the night hopefully with this med it means sleep for mom too : ).
Cam she is getting so BIG and grown up looking! Cameran is on a learning curve and is babbling in sentences of course you can't understand it at all but its cute! She is climbing stairs, chairs, stools everything she can hike her leg up on so we are watching her closely! Its just amazing on how much she has started doing since we got back from Florida!!!! She has started looking for hidden objects and exploring toys more and can you believe it she has been sitting still for longer periods.....WOW thought that would never happen as you all know what a wiggle worm she is, its just been a great few weeks!
As for the seizures they have been staying in the 5-10 range so they have definetly gone down in numbers! Her Neuro wanted to put her in the hospital last Wednesday to start the ACTH and we decided to not go with that mainly because of the harsh side effects:Potential side effects include-Hormonal therapy with ACTH or corticosteroids may have significant, potentially fatal, side effects. While weight gain and cushingoid features are among the most common side effects, ACTH or corticosteroids may also produce hypertension, metabolic abnormalities, severe irritability, osteoporosis, sepsis, and congestive heart failure.- (E-mailed from our Dr.)We just don't think she is that bad off to put her in that big of a risk of other things, maybe this would have been good in the beginning of things when she was having 158 seizures a day but not with just having 5-10 a day. We are to discuss what we are going to do, SO TO BE CONTINUED........
Cameran is still taking weekly OT feeding sessions as she refuses to eat sometimes. Its a back and forth ordeal as she eats FANTASTIC on some days trying out table foods, drinking 30 ounces of milk a day and eating lots of snacks. But th
en the next day will be the total opposite and will take no table food, no jar food and maybe about 15 ounces of milk.... It's all so strange. So of course this is making her weight go up and down she is at 21.4 pounds right now but last week she was up to 22.6 atleast we made it past the 18 pound mark as she stayed that weight from 6 months of age to 13 months of age!!!
We are trying different varietys of snacks and different texture foods since she has a sensitivity in that area so far so good you can see her above trying out lots of different things at once! The hard part is trying to open her mouth to atleast try something new.....She is so stubborn! A new thing she is doing is drinking out of a straw, we have tried so many sippy cups and found that she will only take straw cups so we hope to have her off the bottle soon....But she is moving at snails pace on that one.
Camerans new favorite thing to do is playing in the rocks!! She will put a few rocks in her mouth but Some other news is that she has managed to get 3 new teeth -in a 3 week period Poor baby girl it was actually a tooth a week OUCH! She is working on number 4 making it a total of 12 chompers :-)
current meds she is on to see how she is tolerating them - to high to low. If things are ok we will raise probably the Topamax since thats what we are having the most luck with so far minus the feeding issues. We will get the results back in 2 weeks and with that we will decide what comes next. He has given us our options to think on. Her Neuro "Resident" is really pushing the ACTH route but we have decided that is a no go for now and a few of the Dr.'s up there agree. He says one Dr. use to offer ACTH but hasn't done so in 11 years due to the side effects and we are on the same page. Neuro Dr. "C"(our main Neuro) says it would be good to use if things started to get out of control but that there are no guarantees with ACTH and that some patients had no luck with it at all. He says everyone metabolizes meds different so there are no two people the same so therefore no gurantees and no right or wrong way going about the med choice it has to be what we are comfortable with! And we decided its just not the med for her, we are up for the Vig. since her eyes have already been checked and everything is fine there so if something was to come about we would know it was from the med. Right now things are calm she had only 4 seizures today which is wonderful so we are definetly heading in the right direction. They don't want to leave things the way they are so something will be done when we get the labs back. Right now the girl is knocked out after they told us to give her Melatonin to help her sleep at night since she wakes just about every hour during the middle of the night hopefully with this med it means sleep for mom too : ). 
en the next day will be the total opposite and will take no table food, no jar food and maybe about 15 ounces of milk.... It's all so strange. So of course this is making her weight go up and down she is at 21.4 pounds right now but last week she was up to 22.6 atleast we made it past the 18 pound mark as she stayed that weight from 6 months of age to 13 months of age!!! 
We are trying different varietys of snacks and different texture foods since she has a sensitivity in that area so far so good you can see her above trying out lots of different things at once! The hard part is trying to open her mouth to atleast try something new.....She is so stubborn! A new thing she is doing is drinking out of a straw, we have tried so many sippy cups and found that she will only take straw cups so we hope to have her off the bottle soon....But she is moving at snails pace on that one.
2 comments:
Karen,
Please reconsider ACTH or Vigabatrin. As you know, most of the IS group has had their child on ACTH and I don't know of anyone who died from it. If not monitored properly, the potential exists. However, the doctors have you check blood pressure, urine, etc on a daily or very frequent basis.
These 2 drugs have made so many kids seizure free. I think your doctor is using scare tactics. Please get a second opinion. No matter what you decide, I wish you the best.
Erin from the IS group
Karen- I will agree, you need to try something. Granted Cameran is having a lot less sz, but any is still too many.
Glad to hear that Cameran is making a lot of progress developmentally. Now for food issues. Austin was on a tiny dose of Top and had issues so I know what you are going through. Austin also fluctuated daily, some days more than others. Just keep trying different things until you find something that she will eat consistently. Also, the neuro said to make sure to keep him hydrated, ESPECIALLY now that it's getting hot. Remember, Topamax prevents the kids from sweating, therefore they can't regulate their body temp well. Switch her to Pediasure or cream to get more calories in if you have too. Also, use fruit pops etc to keep fluids in. As for drinks, you mention straw cups. The First Years have new containers called Take n Toss. They are inexpensive and designed to be okay if lost. They have straw cups which my kids LOVE. And suprisingly, they don't leak much at all. Good luck,
Jen mom to Austin, Ben & Connor (IS group)
austinbenconnor.blogspot.com
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