4-month old just diagnosed

[hollyg]

My 4-month old was just diagnosed with epilepsy this past Tuesday. He had his first seizure on Saturday, but it was so fast I wasn't sure. Then it happened again on Sunday, at which time I took him to the ER, where he was later admitted for several days. He had an EEG, and MRI and a lumbar puncture, plus countless needle sticks for blood and 3 IV's (because they had a hard time finding his little veins.)

He's on medication right now (trileptal), but it doesn't seem to be helping. In fact, the seizures are worse and more often. The neurologists tell us it will take some time to find the right dose and even then, it will be changing as he continues to grow. I trust our team, but at the same time, I feel like we need to get this at least somewhat under control. Right now, even on the trileptal, he's having seizures about every 2 hours, for about 2-3 minutes, with 2-4 "aftershocks" which last about 4-7 seconds each.

I'm just finding it really difficult to see my beautiful little guy having these seizures over and over again, and worse. I mean, to see this and not be able to do anything at all is just totally brutal.

Does anyone else have an infant or have you been through this, and what medication worked for your little one? Do you have any tips for dealing with this or most importantly, how to help him?

Right now he's an infant who is too little to even sit, much less stand or walk, but are the seizures going to be even worse once he does? (Meaning, is he going to start falling over?)

Ugh. I have so many questions. But, I just have to do something to help my little guy. He does not deserve to be going through this at such a young age. Sweet baby.

Any advice, suggestions, or resources are very welcome. Thanks!

[julie wishes]

Hi Holly, welcome. I'm so sorry. It must be an awful helpless feeling when you feel you are unable to help your little one. Or to have to go through this at all. There are many parents on here that hopefully will answer your post soon. I hope you are having frequent visits with your baby's neurologist until the dosage is perfected. If not, make sure he is aware of the increase in seizure activity. Also journal everything. As a side note, have there been any changes in his diet? At four months some parents initiate solid foods? Or change to formula??? Document all those changes in his journal as well.

You are such a good mommy reaching out and trying to learn more like this. You have found a wonderful place in CWE. It has changed my life. I hope you get what you need as well and quickly We are all here for you. Remember to take care of yourself too so you are good and strong for your little guy.

[RiffRaffMama]

Oh I feel for you so much.
I wasn't diagnosed as epileptic til I was 25 but I did have febrile convulsions as a baby so I imagine my parents went through a similar situation.
I pray for your and your baby's sake that he gets over it as rapidly as he developed it. But if he doesn't then know you are far from alone. It's incredibly common to have epilepsy and alhought it's unfortunate, it's not the end of the world either.
They will most likely find a medication to control your son's seizures. No one finds a cure but most of us find some level of control. I'm not trying to create false hope but I want you to know you will find some degree of hope, satisfaction and help. Have faith. Be glad it's not 200 years ago!! You will find the way out for your baby.
Best wishes.
Tracy. Xx

[Nakamova]

Hi hollyg, welcome to CWE!

I'm not a parent of a child with epilepsy, but we have many members who are and will hopefully check in with advice and support.

It's definitely too soon to have a real sense of what course your son's seizures will take, and how well they'll respond to medication. Generally, for any age, epilepsy meds can involve a lot of "trial-and-error". If you think the Trileptal isn't helping and/or is making things worse, don't hesitate to let his docs know, and to ask about other meds to try. If you aren't happy with the response you get, don't be shy about obtaining a second or third opinion. Don't worry about being "pushy" -- it's important that you feel comfortable with his doctors and that you are all on the same page with his treatment.

Was there any obvious cause for your little guy's seizures, or did they just come out of nowhere? For the majority of folks with epilepsy, there is no known primary trigger, but sometimes there can be secondary triggers that play a role -- things like dietary sensitivities, or fever or infection. If you can identity (and avoid) any secondary triggers, that's a real plus.

Best,
Nakamova

[Carsonsmom]

I know exactly how you feel. My son will be 7 months old in couple days. He had his first seizure last month, when he was 5 1/2 months old. He was in the hospital for a week, and sent home with Keppra (240mg, 3 times a day, he weighs 19.5 lbs), he hasn't have another seizure since. Keep my fingers crossed.

[donnajane]

Welcome. My little man is 18months old and was first admitted to hospital around 7 months old although they now think he may have been having events quite a bit earlier. My son was put on Tegretol around 6 weeks ago but Nureo isn't quite sure if it will help. We think it is a bit but not totally. He recently had an MRI and they have found an inflamed part in his brain and are now just waiting for his Lumbar puncture and blood test results to decide how they can help him.
My sons events have altered as he aged. He was developing basically normally until his events became so frequent, for awhile he was hacing over 150 very short a couple of seconds each a day, that I felt they actually stopped him having time to "develop" so for awhile he was listed as developmentally delayed in some areas 6months other 3months. Now his events have altered and although at time more intense are only a few a day and his development seems to have caught up in a lot of areas. He didn't crawl till over 11 1/2 months but now is walking and has been for a couple of months.
I know how helpless you feel with a baby who can't tell you whats happening so you are doing the best thing and being their voice. I know from my little man that it can be a long road to get answers but keep looking if you feel things are still not right keep going. I know my sons Nureo was quite shocked and confused with what was on his MRI but he is now looking into what is causing it so he can help my son more.
This forum has helped me so many times, with support and advice from people who are going through or been through the same thing.
Take Care.
donnajane.

[KarenB]

I encourage you to look into the Ketogenic Diet for Seizures immediately. Most neurologists don't mention it until a child has failed 4 or 5 meds, but Johns Hopkins just completed study where they used the Ketogenic Diet as first line of treatment for infants with seizures with very good results. For babies, the diet can be given via a formula (Ketocal). Our son (age is on the Ketogenic diet after failing 5 medications, and is doing well. He went for 11 months with no seizures, and then got really sick and started having them again, but not so often or severe.

[KarenB]

For more info on the Ketogenic diet, go to Charlie Foundation website. The forum on this site has a nutritionist (Beth) who has worked with the diet at Johns Hopkins for 18 years, and she can provide lots of useful info.

[jimj]

My 4-month old was just diagnosed with epilepsy this past Tuesday....He's on medication right now (trileptal), but it doesn't seem to be helping. In fact, the seizures are worse and more often....Does anyone else have an infant or have you been through this, and what medication worked for your little one? Do you have any tips for dealing with this or most importantly, how to help him?

Your probably already know this, but you should never make any changes in your epilepsy treatment with your neurologist's approval. I.e. don't make any changes by just blindly following my armchair neurologist advice.

Based on the little info you've posted I'd say there's a chance your little guy has Dravet Syndrome (like my daughter does). But please don't go google Dravet Syndrome (DS) and get depressed at what you find. Almost everything you read online talks all of the horrible things that will certainly happen to a child with DS, but that's no longer the case. Like autism DS is a spectrum disorder. Some people you'd never know have DS, while others do face a lot of challenges.

I think there's a chance your baby has DS because:

1. 3% to 8% of patients with their first seizure before age 1 year have DS
2. Trileptal appears to be making the seizures worse. Trileptal is one of a handful of drugs that's contraindicated for DS (i.e. it makes DS worse).

Has he had status epilepticus yet? Association between age at status epilepticus and Dravet syndrome:

• Status epilepticus at > 18 months: 1/47 (2%) have Dravet
• Status epilepticus at < 18 months: 8/25 (32%) have Dravet
• Status epilepticus at < 12 months: 7/15 (47%) have Dravet
• Status epilepticus at < 6 months: 0/3 (0%) have Dravet

So if your little guy was my little guy this is what I'd tell my neurologist I wanted to do ASAP (in order of importance):

1. Stop the Trileptal
2. I agree with KarenB, start the Ketogenic Diet (assuming you can use dietary treatment on a baby that young)
3. Get the SCN1a gene tested. Most cases of DS are caused by a mutated SCN1a gene

If DS is suspected and you can't initiate a dietary therapy then Topiramate and Depakote are two of the most commonly used/effective DS drugs.

AFAIK every anti-epileptic drug (antiepileptic drug) has negative side effects. I'm fortunate that my daughter has a milder case of Dravet. Asides from seizures, most (if not all) of her negative side effects have come not from DS itself but instead the anti-epileptic drugs we've given her. We've endured ataxia, insomnia, hyperactivity, aggressive/violent behavior, no appetite (eating), muted disposition (i.e. she was a zombie), lethargy, and sleepiness all because of anti-epileptic drugs.

I'm not anti-drug, but I think some neuros underestimate the impact of anti-epileptic drug negative side-effects. For us the right amounts of stiripentol and Depakote have given us decent seizure control (average one seizure every week or two) with almost no side effects. It took us a long time to find the right drugs/doses though. If I had it to do over again I would try dietary treatments first. While the diets aren't easy to implement, they have (AFAIK) no major negative side effects. My wife and I are currently considering adding LGIT to try to get even better seizure control.

My daughter started having seizures at 9 months. Like I alluded to above, I don't think anyone can predict your baby's future. I got pretty down when I read about how my daughter was going to mentally and physically delayed, but at the ripe old age of 3 she's still doing great. I know it's easier said than done, but try not to assume the worse is certain to happen.