Monthly Archives: November 2012

ECI evaluation today

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Today we had our first evaluation with ECI (early childhood intervention). They are a state program that provides therapy to babies and kids with certain diagnoses. Babies with a diagnosis of Infantile Spasms are automatically accepted. Basically they came to our home, asked a lot of questions, played with Z and asked a lot more questions. Then, basically they grade him in certain categories. Like I mentioned before, I was certainly in denial about his development. If it weren’t so wonderful seeing how much progress he has made in such a short amount of time, I’m sue I’d be in tears at his “grades”. He is really, really behind. Plus they want his hearing checked. He can definitely hear some things, but not others. They don’t know if it’s his hearing, remnants of his recent ear infection, or a neurological condition. So now we get to go to an ENT, and certainly not the one we saw before who didn’t do anything. I’m trying to stay positive, because he is spasm free, and in the short time since then, he has made great progress. It’s just hard to hear out loud how far he is from where he needs to be. But I know he can get there, and we’ll get him the help he needs.

Again with the online reading… ugh

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I was watching an episode of Life in the ER on Discovery Health channel.  The show has nothing to do with seizures, but one of the docs said something that stuck with me.  He said “Prepare for the worst but hope for the best.”

So, even though Z has been doing well so far on the wean, I decided to lookup something that the APRN and resident had mentioned the other day.  I’ve always known there is a good chance Z will go on to have other seizures as he gets older.   But, I thought they were the more manageable type. But at our clinic visit, Lennox-Gasaut was brought up.  I remember reading briefly about it, and that it’s not good. But decided to read up about it.  It’s very hard to treat, has terrible seizures (the kind where you just drop) and can become drug resistant.  It usually begins around age 4.


http://www.ninds.nih.gov/disorders/lennoxgastautsyndrome/lennoxgastautsyndrome.htm

So, now on top of praying that Z gets through the wean, I’m praying he never ever gets Lennox-Gastaut.  Ugh.  Sweet baby Z has been through too much already.

About two out of ten children will develop Lennox-Gastaut syndrome after having West syndrome (infantile spasms).

http://www.epilepsy.org.uk/info/syndromes/lennox-gastaut-syndrome

♥ our doc!

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I decided to email our neurologist with a couple smiley pics and the video of baby Z rolling over.  I didn’t want to bother her but I wanted to share some good news.

A few minutes later (on a Saturday morning), I got a short but sweet response that confirms we have the right doc!  I love that I can call or email her when we have questions or problems, but it means a lot that she responds to a quick video of my 8 month old rolling over for the first time, and in all caps with 3 exclamation points, and then thanks me for sharing.  🙂

YAY ZANE!!!

Thanks for sharing!

Concerned… but…

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If you remember, there were a few days that Z was previously inconsolable on ACTH.  But, then, it was as if the medicine miraculously did what it needed to do, and then he was fine again. He started smiling, interacting, gaining milestones.  It was amazing.

Then comes yesterday, the day I had been dreading: the wean.  Z only went down 10 units on his meds, so I was nervous but at the same time, not really expecting anything to happen at this point.  But last night he was up a lot, inconsolable at times.  I couldn’t help but worry that somehow whatever had been done at the high dose was coming undone. No one seems to really understand how or why the medicine works, so I don’t know if that could even happen like that.  But it’s where your mind goes when you’re deliriously tired and afraid.

But then we both finally got a little sleep and are both feeling better.  And then…
Z rolled over from back to front for the first time ever.  And then… he did it a second time.  Yay!!!!!!!!!! Go baby Z!  It seems like such a small thing to most.  But, to me, it’s huge.  HUGE.  It brings tears to my eyes.  (Well, to be honest, it brings tears streaming down my face.) I so totally needed to see that this morning! 😉

Baby Z is an AMAZING boy!  I love that little guy!

Making Progress

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We had a visit with our neuro today, and then had another EEG.  Unfortunately they had to schedule the visit before the EEG, so I haven’t gotten confirmation that the EEG is still “normal”.  But, his progress leads me to believe it is.

image

The APRN (advanced practice registered nurse) who is very knowledgeable with IS, saw Z and was telling the resident how great baby Z was progressing.  He said, “you should have seen him a month ago before starting the ACTH.  He was more like a 1 or 2 month old.”  Sad, but true.  But, now, look at him, holding up his head.  They mentioned he’s probably at a 4 month old’s level, which is a lot of progress for a little guy to make in 4 weeks.  I know he’s got a long way to go, but he’s just doing so well!  I know it’s strange to be celebrating an 8 month old holding up his head, or smiling, but that just shows you how bad it had gotten.  😦

The resident was from the adult neuro dept, but was on a pedi rotation, so wasn’t very familiar with babies and IS.  You could tell he didn’t quite know what questions to ask or how to interact with little ones.  But, in talking to him, he realized he knew more than he thought he knew about baby Z.  He is a friend of the resident who first saw the video I just happened on a whim to send to my friend who is the adult neuro nurse, and he saw the video when she had shown the attending (who is now our wonderful neuro).

 

We started the weaning process from ACTH this afternoon.  So, I just can’t help but do everything I can to help/hope that the meds did what they needed to do permanently.  I feel like I’m crossing my fingers and toes, knocking on wood, and of course, praying like mad.  He has hardly had any side effects, so I wish he could stay on it forever.  But, unfortunately that’s not how it works.

 

I asked some other moms what happened after they weaned their little ones off ACTH, and these are some of the responses I got:

“My sons returned 2 weeks after wean. Our neuro chose to try Vigabatrin next instead of repeating ACTH. We still don’t have control at max dose, just a reduction. Checking into candidacy for surgery and may add oral steroids to see if it will knock them out. Going for our weekly EEG in the morning to see what we’re going to do.”

“Atticus started ACTH June 15. By June 26 we could no longer visibly see any spasms. Sept 3 was his last injection. Sept 10 his EEG came back normal. I am happy to report that Atticus is still spasm FREE!!!!’ That’s over 4 months now. Don’t give up hope. When one door closes, another always opens. Praying ACTH worked for you xo”

“My son took 30 units twice a day for 2 weeks, then tapered to 20, 10, 10 once a day, 10 every other day. The whole thing took 4 weeks. He was seizure free after the first dose. He’s been off it for 1 month now and has a normal EEG. An EEG during the taper showed no hyps but did contain a slow wave- that’s now normalized. It seems like there’s many different dosing schedules that all are considered potentially helpful. How are your baby’s brain waves right now?”

“My daughter was on ACTH and was seizure free for a little while but they came back and we tried the diet and Meds was seizure free again. But they came back and the Nero noticed that they are just on one side so we did the surgery was seizure free for over a year but came back and did the diet again seizure free but they came back so now we r on 4 different Meds talking about the diet again”

“We did ACTH for one month and are now on prednisone for 3 months and weaning. EEG was normal after one month of ACTH and we go back for an 8 hour EEG nov 19th. If there are any spikes we are not trying ACTH again and moving to sabril.”

“My son, Tripp was diagnosed with IS at 4 months. We are in our fourth week with the ACTH injections and have seen no more signs of the IS. Unfortunately, he has started having other seizures, we have seen three different kinds. They told us Wednesday that is was Epileptic Encephalopathy and his prognosis was not good. He also has a diagnosis of Optic Nerve Hypoplasia, but they were unable to find a symptomatic cause for the IS. Has anyone else been diagnosed with other seizure disorders?”

“Update on Billy.. seizure free for 4 months, started up again suddenly 5 weeks ago, keppra been upped & upped & upped, hes on his maximum dose for his weight/age now and he still having clusters throughout the day. I dont know why ? :(”

“Have any of you had your child’s IS start really early? My son was a little shy of turning 3 months when diagnosed, so hasn’t really met any developmental milestones…not even holding his head up and he’s over 6 months now. He doesn’t interact with me, smile, or even move a whole lot. Still trying to get control of the spasms with Vigabatrin and finally got an admit date for the keto diet on Oct. 29th. I know he’ll be delayed and I can deal with that, its just that I feel like I’ve lost my baby completely. For him to not even look at me much, show recognition of me in his face, or smile at me tears my heart to pieces daily. Anyone else’s child been like this?”

Then, other moms have come back years later with posts/pictures like these:

“I so clearly remember diagnosis day and being told my baby girl would never walk……she was running, laughing and having so much fun looking for leaves. Never give up hope, our babies are so strong!”

“5 yrs old healthy as a horse my little miracle man:) keep the faith moms n dads-you will get through this! Love and prayers to all of you!”

“My little boy was diagnosed with IS in April this year and to date is doing well! He is 6 months seizure free after success with ACTH! I just wondered is anyone else’s little ones very restless sleepers with IS! We’re getting up to him a few times each night! He wakes himself up wriggling around the cot to the point his pj bottoms came off in his sleeping bag and then he squeals the house down!! Maybe he’s just a terrible sleeper but just curious!!”

“Hi, just a positive story to share, my son (currently 3years 3months old) was diagnosed with infantile spasms at 7months old, got treated with two courses of ACTH Injections, then onto Epilem, and then onto Lamotrigine, Joel has been SEIZURE FREE as two years now, and is currently going thro the ‘weaning’ process to bring him OFF the medication, there is always the risk they may come back, but we can only think positive, he has been left with some brain damage, which has led to learning difficulties and global development delay and current screening for the ASD spectrum, but he’s a happy little boy who is out mixing with ‘normal’ kids at nursery and hopefully he will continue to thrive and grow!! Never give up..there is ALWAYS a chance the child can ‘outgrow’ it!! The picture is Joel now with his big sister ♥ so proud of him!!”

“A year ago today my son was diagnosed with IS. After a long 4 1/2 months we got the seizures stopped and haven’t seen on since. 7 1/2 months later I’m thankful for doing the research I did to find the wonderful doctor in Detroit that got my sons IS to stop when two other doctors couldn’t. I also am thankful for God pointing me in that directions even if it was an 18 hour drive!”

“Me again sorry!! We got results from zacks MRI the other day and whilst he has been having these spasms/ seizures for over 9 months now, he has absolutely NO brain damage 🙂 just thought I’d give some hope to anyone in particular worrying about brain damage. Not to say it can’t happen, but I’m over the moon as I thought for sure with his seizures there would be damage.”

“Michael has been seizure free for over two months now and we are so thankful but also so nervous! Does anyone have any idea of milestones we could be looking forward to in terms of not relapsing. Like how long do they have to go before they are in the clear or where the statistic drops lower… Thank you all for the support!!”

“For those of you who haven’t experienced the “new baby” I just want to let everyone know that it happened over night for us. The last two days we have a “new baby” I’ve never seen him happier in my life!!!! Before this he showed ZERO happiness, no emotion, except for crying, and he’s doing so much more than ever and his progress is 100%. PLEASE STAY STRONG, GUYS! It’ll happen! Pray pray pray!!! I’m praying for all of us in this group.”

 

 

I feel like it’s all over the map.  Some babies relapse.  Some don’t.  Some go on to have other types of seizures.  Some don’t.  Some go on to lead completely normal lives.  Some don’t.  There’s really no telling.  So, I’m praying like mad because I don’t know what else to do.

 

The information superhighway is a blessing and a curse

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We have been thoroughly enjoying our happy little guy. He has made amazing strides at catching up and he’s just a joy to have around. But I know that the wean is coming and I’m terrified. So I’ve been reading online again. Sometimes it’s a blessing having access to so much information. But sometimes it’s just so hard to read, and sometimes there is more information than I (as a loving mom rather than a doctor) need. For instance, I just read a medical study where they followed up with 200 kids age 6 or older who had had IS as babies. 48 had died. DIED. That’s nearly 25%. See. Too much information. I really didn’t need to know that. 😦

http://www.ncbi.nlm.nih.gov/m/pubmed/6259007/

From another medical study…

Despite all the advances in understanding the various treatment options available, infantile spasms still remains an elusive childhood disease that is difficult to treat with the overall prognosis being dismal.

http://www.biomedcentral.com/1471-2431/10/1

Ok.  Ok. Stopping now.  My stomach is turning, so it’s time to stop reading.