I think we're starting to get answers...

[Emeric's_mom]

I took Emeric in last night because my pediatrician asked me to bring him in if the episodes were getting more frequent. The ER didn't have a ped neuro on call so the doctor consulted with a regular neurologist who thinks ds is having atonic seizures. He also mentioned West's Syndrome but said since his EEG was normal that's unlikely. They're going to be getting him in earlier with the pediatric neurologist since his symptoms have progressed.

I've been reading online(too much actually ;) ) and I really see a lot of similarities with Emeric to Lennox Gastaut. I do notice more than one seizure type. From him I've seen subtle myoclonic jerks, absence seizures, and atonic seizures. Along with his delays and "autistic like symptoms"(which one site I came across said is common in kids with LGS) I'm wondering if this is what's going on...

I know there are probably other things that could be going on but I also think the description of LGS fits a bit too well.

Those that have kids with LGS would you be able to chime in? Does LGS present itself this early? What are your thoughts?

[langansmom]

Langan doesn't have LGS but I have read a lot about it. My understanding is that it develops later, often after IS. It also has a specific EEG pattern, so I think if there was something there to indicate it then you would not have gotten a normal EEG reading. I'm no neuro, but that's my understanding.

Many kids (and adults for that matter) have several seizure types but don't have LGS. I think the underlying cause of the seizures helps in figuring that out. For example, someone with a lesion in the motor strip might have only motor type seizures while someone with a metabolic disorder or an encepholopathy of some sort might have multiple types.

Glad you're getting answers and getting to the ped neuro faster.

(((hugs)))

[lacyndarella]

Everything I have read about LGS indicates later onset, usually after IS has run the guantlet. Without the hypsarrythmia it isn't IS. But one EEG without hyps doesn't mean the IS isn't there. Jimmie's second EEG did not show hyps. The first did, and so did the third and fourth. Since then the hyps has been gone...I'm hoping it stays gone...but because it was there, it's still IS. If that makes sense.

Lacy

[mpalmer118]

I am not sure, but I think Denae dd, Riley's EEG's were clear at first and she was just recently dx'd with LGS. I don't think that in official dx comes until later when the EEG pattern "fits".

I know it is hard, but for now, until you have seen the ped. neuro, I would pull back on the research a little. There is a lot of scary information and not enough facts yet. I would keep video taping, try to get a couple of examples of all the different seizure types you are seeing, and keep as detailed log as possible.


((((hugs))))

[chloaver]

Hello! I haven't had a chance to welcome you but I finally got caught up on everyones posts today and got a chance to read about your son. First, nice to meet you but sorry you have to be here. :) The beginning of our journey was the hardest for me with having to find answers, figure out our next steps, wondering if I was doing too much or not enough, etc. So I'm sure that is the position you are in right now. We have been dealing with Chloe's needs since birth but just started having to deal with seizures since 2005 and I can honestly say I do truly hate them but you are doing the right thing by reading and researching all that you can. Of course, you have to do that with the knowledge that every kid is so different when it comes to seizures types and medication reactions. Ugh! Just a crazy trip, I know! :rolleyes:

Anyway, we're not dealing with LGS and I don't know much other than what I've read but hopefully you can get some answers from the neuro and get the ball rolling on the next steps. I remember when Chloe had her first seizure and I was totally freaking when none of her doctors wanted to see her immediately or get her tested immediately. It drove me crazy! But I've also learned that waiting for answers and sometimes not always completely getting them seems to be pretty typical(sorry, not trying to be a downer :D )

Good luck and keep us posted!!

[Carly'sMa]

Just wanted to offer a little bit of hope. Even though Emeric is showing autistic like behaviors now, if he is having seizures, then that can interfere with his development. Once the seizures are being treated, I hope that you will see a difference in his development.

Carly had an abnormal EEG as an infant. She went on Phenobarbital and when we got to a therapeutic level, I felt that she started to emerge. We saw eye contact and other things begin to happen.

Luckily, what ever seizure activity she had stopped. We weaned her off of the phenobarb and while she still has delays, she continues to progress.

[Jenelle's Mommy]

Like someone else said here, LGS usually presents later and usually follows Infantile Spasms (West Syndrome). That was the case for my Jenelle - she was considered an "early" LGS diagnosis at age 18 months, but our Neuro has always said she is "atypical" (meaning not following the normal pattern of things) and now that she is older, LGS fits.

As far as I am concerned, I truly believe it is also too soon to diagnose autism. From my understanding, that happens around 4 or 5. My Jenelle has many, many autistic like symptoms and she is not autistic.

No eye contact - she is cortically blind and thus does not make eye contact.
Hands to her head - she has sensory issues, and keeping her hands to her head is her "comfort" zone.
In her own world - she is non-verbal and mentally retarded, but not in her own world, she just does not communicate in our way.

and so on.

As she has progressed, Jenelle also has developed a "social" personality, and she seeks out others. Definitely not typical of autism. When she was 10 months old, we had a 50% chance of autism. I am thankful it has been ruled out.

It is possible to have more than one type of seizures, and not to have a "syndrome". LGS is not necessarily a diagnosis, it is just a name for the types of seizures my daughter is prone to have.

I'm glad you are getting in early. Also try to consider a second opinion.

Keep us posted.

[Emeric's_mom]

Thanks ladies. :) I've been trying to stop worrying and find some peace in knowing that no matter what happens he is still my son and I'll love him the same no matter what!

And I agree it's too early to for sure say autism. Some days he shows a lot of "signs" and other days he doesn't. So I think something else is going on.

[momster]

Hi. I don't post so often anymore, but I've been hanging around here for a long time. All of your children look absolutely beautiful. I want to echo what Deborah said about the seizures and add my own thoughts: Thankfully, we haven't had to deal with the sz issue much, but I know other kids that have seizures, and those seizures definitely impede their develoopment. It may take a while to get them under control, but keep sticking with it.

WHen my son was 9.5 months old, he had no diagnoses, mostly because his (former) pediatrician was in denial). But he couldn't sit up like your son, or even really roll over. At 20 months he was diagnosed with cerebral palsy and global developmental delays. It was so frustrating during those early intervention years. I kept seeing him fall behind. But I am so glad I kept working with him. Today he is in a regular ed classroom, and, in fact, is slated to start his first summer of just plain old typical kids camp. Although the professionals tell me he is at risk for school struggles, as he enters the 4th grade he's pretty much at grade level.

What I'm trying to tell you is what your neurologist has probably told you: kids brains have tremendous plasticity, meaning they can compensate for their issues. Don't assume that just because he is struggling today, that this will be the roadmap forever. It's really important to assume and work towards the best outcome, whatever his diagnosis ends up being.

Good luck,

momster

ps - not knowing is the hardest part! But sometimes time is the only answer......

[Denae]

Your Children are adorable!!

I was reading your other posts about his EEG and the sedation- Riley has almost always been given chloral hydrate before her "routine" EEG's- and they ended up normal.

The last two she has had haven't been sedated. The one done about 3 months ago, then one a little more than a year ago were not sedated. Her neuro does not treat children based on EEG results alone which for Ri was important b/c she was DEFINATLY having seizures but continued to have normal EEG's between seizures. WE had one neuro say no seizures and another say yes (with the same normal EEG's) We even went unmedicated for a while because no one could agree- all that did was make things worse.

Riley never had IS but she does have LGS, she was actually diagnosed more than a year ago when she was being evaluated for the VNS. I didn't know, and never discussed it further, there was a lot going on at the time with her school and the upcoming surgery- I wasn't ready to hear it either.

It wasn't until about a month ago when we went for the results of an EEG that had been done 6 weeks prior to her appointment that I heard him use the words Lennox Gastaut... I suspected it when she started having atonics in October of last year, but couldn't bring myself to ask or even talk about it, even though she had already been dx'd- which was why Dr.P wasn't shocked/ worried (if those are the right words to use) when they started.

For a long time she clinicaly fit the picture for LGS, but the EEG didn't support the diagnosis so Dr.P said she had Intractible Epilepsy with multiple seizure types. - the EEG didn't fit LGS until she was 6 1/2years old.

Ri is not autistic, but has some autistic behaviors; at about the same time she was dx'd as LGS we were told she had PDD (Pervasive Developmental Delay) - which really overtook anything else he may have said at the appointment- he said he told us then that she had LGS- I never heard it though ;Of course at that time I was in total shock and denial about the PDD dx I didn't really see any autistic behaviors, but after it all sank in I realized I do see them, of course her sister is on the autism spectrum and so much of what Sarah does has become "normal" to me that whe I see Ri doing some of the same things it didn't stand out.

As for the seizure types Ri has;

complex partials- these have several differnent "looks" from a blank stare with chewing, or it could be posturing of her right had at her chest, or picking at her clothes with her left hand- it depends on where the seizure starts and how it spreads with these

myoclonics- usually her arms are the only body part involved.

atonics (which are VERY infrequent at this time) - "drop seizure" her whole body collapses to the ground, as if someone jerked her body down

tonic-clonics she gets stiff then jerks, she gets a very pale/ bluish looking depending on how long the seizure lasts.

tonics- These almost always start with a myoclonic jerk of her arms and legs then her arms go up and her whle body gets stiff, she stops breathing, it only lasts about 20 seconds.

Her seizures have changed over the years, she was only having a few seizures a month, and for more than a year they have been several a day.

I hawv learned the hard way, don't ignore that mommy feeling, I am really glad that the neuro on call recognized what you were seeing as well and you didn't get brushed off. The sooner he is seen by the ped neuro the better.

((hugs))

Waiting is always tough no matter how many years you are "in the club"

[lacyndarella]

PDD is on the autism spectrum. It is safe to say a child with PDD is autistic.

[Denae]

It is close but not quite- Ri is to social to actually get the autism dx.. But they are in the same "family"- like you said on the spectrum.

[lacyndarella]

Denae,

Okay. Ri is beautiful, and fun loving, and your little girl! You know best what her situation is. (I wasn't trying to be argumentative - sorry if it sounded that way - hate impersonal email). I was simply stating what I know of PDD. Drew, Liz's son, was diagnosed with PDD, and in his situation, it is definitely autism. He is not socially aware, but he is learning! When I got married he took one look at my bald husband and called him "Turtle, Turtle" and tried to rip David's glasses off his face. But he has improved much even since then. He does the cutest things. Liz told me a story recently: Drew was out with his therapist, and she closed her fingers in the car door. She was crying, and Drew asked her if she was okay (huge...showed empathy). She said, "No, I hurt myself." Drew picked up his cell phone (it's a limited phone with something like five speed dial buttons only) and says, "I'll get help." (Again huge, cus he was acting appropriately). Then he looks at the phone for a minute and says, "Where's the 9?" Hysterical! This is a kid who wondered off all the time and had 9 hour tantrums over not getting a hot dog within 30 seconds as a toddler. He really has come a long way! I imagine PDD is like anything else on the autism spectrum...comes in many varying degrees.

[Jenelle's Mommy]

Thanks ladies. :) I've been trying to stop worrying and find some peace in knowing that no matter what happens he is still my son and I'll love him the same no matter what!

And I agree it's too early to for sure say autism. Some days he shows a lot of "signs" and other days he doesn't. So I think something else is going on.


Something else came to mind... it is also possible to have "atypical" Infantile Spasms as that is what they classified my daughter as having. Everything fit on paper, but the EEG, was not quite what they expected to see. Yes, they saw Hypsarythmia, but there were other unexplainable patterns as well.

Also, Boys are different than girls. I see that you have two girls, so some of the "autistic" type behavior people are pointing out could be simply because he is a boy! My "typical" son used to thrust his tongue forward and I had a sitter convinced he was autistic. We think he may be ADHD (which is on the autism spectrum) but for the most part, a lot of his quirks are simply boy behavior!

Hearing that you had sedation for the EEG, I'm agreeing that it could explain why the EEG was normal. IF they had to sedate him to put on the probes, ask them next time to wrap him in a papoose and a warm blanket. For as active as my Jenelle is, she is an angel when it comes to putting on the electrodes. The key was wrapping her up and she was fine!