Just One Month To Go

We just need Cora to stay seizure free for one more month. If she stays seizure free we can get her an EEG and see what her brain is up to. We know that is isn't a guarantee that we can start weaning her off of her meds but we are still looking forward to it. Wish us luck.

Growing and Growing

Cora is standing on her own really well now. And that tooth finally made its way through today. She is a babbling fool and we can now tell when she sees Cowbell or Baron so her language skills are definitely developing.

Her iron levels are now normal and we are anxiously awaiting the okay to take her off the iron supplement.

Here are some recent pics -





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An artcle in Parenting Magazine

I came across this on another mother's page. Her son Charlie was diagnosed with IS in a very similar way to Cora. He is doing really really well.
http://www.parenting.com/article/-/Health/Love-and-Instinct
It is spookily similar to Cora's story and it brought me a lot of comfort.

One month seizure free

Cora has been seizure free for over 30 days. It has been so great having our little girl back to herself. She is getting into everything and trying to stand on her own. She is also getting her fourth tooth. So she has the two middle ones on the bottom and two fangs. It is hilarious.

We also found out that she is anemic. So we have been giving her iron everyday. She hates it! And I don't blame her. I tasted just a tiny bit and it tasted like I had carried gross dirty change in my mouth all day. This is totally unrelated to the IS, just one of those baby things. So we will go at the end of next week to get her tested again and hopefully we can stop giving her iron.

We are just looking forward to the end of September. If she is seizure free then she gets her EEG and her follow up appt. She also has her 12 month Well Child Check. That means vaccines but we like going and seeing Dr Mason. And of course her 1st birthday. I can't believe she is already 10 months old.

Neuro Appointment

Cora had her follow-up neurology appointment today. It went really well. Dr Metrick was thrilled that she has been seizure free for this long (21 days) and is impressed with her continued developmental progress. The plan is to keep her on the Topamax, increasing it to therapeutic doses according to weight and just keep her seizure free. If she remains seizure free for two more months we will do another EEG. If the EEG shows no hypsarrhythmia then our understanding is we will begin to wean her off of the Topamax; if it does we will continue treating in the same manner.

Dr Metrick is also pleased that no tubers were found in her eye exam. She said that the fact that there is no diagnosis is actually a good thing, it gives her better odds for coming out of this unscathed. Not that there really is such a thing as odds with Infantile Spasms. There are so few cases and they vary so dramatically that it is almost impossible to connect the dots or come up with figures. That doesn't sit well with Kris' analytical mind and my control freak tendencies but we feel that if they see some sort of connection to undiagnosable cases (idiopathic) and positive results, that is enough of a statistic for us.

We still live with the fact that we may be raising a developmentally delayed child and that it could develop into other kinds of Epilepsy (one in particular that is just as damaging as IS), but that has moved to the background quite a bit since Cora continues to amaze us with what she learns everyday. And of course how absolutely adorable she is always helps :)

Woo Hoo!

Cora had her eye exam today and they didn't see any tubers. This is hugely relieving! That, I believe, is all the testing we are doing for Tuberous Sclerosis. We know we can't be 100% sure she doesn't have it, but it really looks that way.

Also Cora has been seizure free for a week. She has learned to crawl, pull herself up on the furniture and loves to clap. It has been a really great week for us. We still need to up her Topamax to the therapeutic level for her weight (which is still a very low level) for a couple of weeks. If she is still seizure free we will get another EEG to see what her brainwaves are up to.

It's been a good week.

Cautious Optimism

It appears the minuscule dose of Topamax we are giving Cora is making a difference. She only had one episode of 8 spasms yesterday. We know that some drugs only work for a short period and then for whatever reason stop but this really encourages us that a low dose of Topamax is going to be enough.

As far as side effects go, we haven't really noticed any. She might be a little sleepier, a little fussier, and possibly it is harder to get smiles from her. However she did cut her first tooth this week and it is very likely that what we have seen (or imagined) is related to that. After all we know when one tooth comes in another follows shortly, so she is probably in a good deal of discomfort due to that. And honestly, if this is our child in the pain of teething, then we are really lucky because she is taking it on really well.

We will up the dosage on Thursday and will continue to do so for 3-4 weeks. If at that point her seizures are gone then we will get another EEG. If they aren't then we will consider another drug.

It's a small victory but we will take whatever we can get!