Advice Please: 4 month old having seizures

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hi
my nearly 4 month DS has just been discharged from hospital after suffering from a series of seizures.

He basically started having a twitch in his left eye, followed by both eyes rolling to the left for about 30-60 seconds. We were told by our doctor to go home and monitor over the next 24 hours.

However, the seizures at one point were coming ever 10 minutes for about 2 hours. In total he had about 20 of them. We were advised to go to A&E if they continued.

We went to the A&E and his seizures changed slightly and in addition to the eye twitching & rolling, his mouth started drooping on the right side and he may have jerked his left arm.

He was given anti seizure medication and after about 4 hours there were no more seizures.

We stayed in hospital and had a CT scan and an EEG which both came back within the normal range.

We have an appointment scheduled at GOSH in two weeks time with a pediatric neurologist.

There is no history of epilepsy on either side and our other DS has never had a seizure.

Has anyone experienced these types of seizures? If so please could you share with me your experience. We are so scared for our little boy.

How scarey for you.

2 friends of mine dc had seizures after their imunisations.I think it was up to a week afterwards.They haven't had any more and are healthy children.

Has he had any imunisations recently ?

I wish you all the best.

Thanks so much for responding. No immunisations recently. The last ones were about 5 weeks ago. So probably not related. In fact he is due for more next week.

Thanks, I'll ask about infantile spasms and do some reading my self. Do you have any good suggestions for resources ... sometimes there is too much information and it is quite overwhelming.

He didn't have a temperature.

We think they may do another EEG as we live overseas and I think they want to do some of the tests again.

We are scheduled for an MRI and then a couple of days later an appointment with the pediatric neurologist.

He's currently on Phenytoin and hasn't had any obvious seizures since.

Hi sorry to hear this has happened to your little one. I found the Epilepsy Action and National Society for Epilepsy (NSE) websites were very clear and informative, and will talk about the different types of seizures, although I agree that there is sometimes a lot to take in. The NSE forum can be good although not as fast-moving as mumsnet (so don't expect immediate responses).

The people at GOSH are good but in my experience it is a long day as they will want to send you for lots of tests before the specialist talks to you. Hope the MRI goes well.

Thinking of you

I think the phenytoin is making his tummy sore. He is usually quite a settled boy and he has been crying a lot more since and seems to be in pain, I am putting it down to wind as well.

Riven Was your DD on it? and how did she react to it? How long did they keep her on it? They told us that it was a short term fix until they could figure out a different medication. I have read there are quite a few side affects. What was your experience?

HFD thanks for your response, I will take a look at the websites you suggested. I find that I can put my son's symptoms exactly to any one particular type of epilepsy although I am currently convinced it is infantile spasms, yesterday I thought it was benign myclonic.

I am finding the waiting really hard as I am desperately worried for DS2. I also shouted at DS1 which is awful, he's just trying to get my attention, he's only 2.5.

Second Riven in getting another EEG in a bit. Then another if nec.

It took 3 EEGs to pick up on DSs epileptic activity (well, 4 really....No. 3 was a bit vague) despite his massive brain damage (that's what clouded the issue - his 'normal' EEG is so abnormal, it took a while to root out the epileptic activity).

DS had infantile spasms at 5 months. They have a very particular physical presentation in most (not all) cases and DS was quite typical so it was easy to spot. They have a particular signature on EEG too though DSs 1st EEG at that time didn't show it, it was present by the second, 2 weeks later. If you have a look on youtube and search infantile spasms, there are some good (if thats the right word) videos to look at - just to be aware.

I hope things go well for you x

PS - try not to google too much, 'specially about IS - it's all doom and gloom in those scientific papers.

I almost drove myself mad trying to absorb it all.

Hello HB
Our thoughts go out to you- epilepsy is the most horrible, hateful pile of crap ever. I sincerely hope it is not infantile spasms it seems the shittiest of the lot. Our story so far is more positive. My DGS had a traumatic birth and needed rescusitation. some brain damage but not too bad, enough to cause cerebral palsy though. He fitted big time at birth from the lack of oxygen/swelling to the brain and also metabolic imbalance. Then nothing.
6 months later started eye rolling and going limp but for a few seconds only. When this progressed to 10 minute intervals we went to A&E. There v. v. anaemic baby. but they said not the cause (started on iron). absenses continued few weeks then went away, but returned a couple of months later, and stayed around 8 weeks. This time eyes rolled back, blank expression but nothing else (not limp). Almost always to sensory stimulation eg, loud noises, pain, tiredness,touching his FEET! He had around 60 a day lasting only a couple of seconds, sounds awful (it was) but added up less than 2 minutes a day. Eventually slowly stopped to noise, then progressed to tiredness and eventually stopped altogether. We think his brain was still oversensitive and when it matured he could cope with the stimulus. He did look as though he was 'zoning' out at the time and came back when he could cope - like me with a glass of wine! He is now 20 mo old and has not had anything for many months - touch wood!!!. We are always watching him and terrified they will come back, but are reassured about their sensory link as he's slightly more robust now. Believe me the epilepsy was a hundred times worse than the CP.
I'm keeping my fingers crossed you will have a good outcome on this as we have spoken to another mum who's little one outgrew the same as us.
PS All DGS's EEGs were normal.

Thank you for all your responses.

It really is a roller coaster waiting for our appointment, a week seems like such a long time away. Yesterday I found it particularly tough as it was the first time I spoke to my family about the seizures properly. Talking about it makes it even more real. They had so many questions which I didn't know the answers to, it was frustrating.

feelingbetter thanks for your message, I am sorry to hear about your son. I've looked at the uTube videos and it gives some "good" images of the spasms. How is your DS now? is it managed? how did it develop?

Riven thanks for the reassurance that we are doing the right thing. I am so uncertain about everything at the moment.

beammeupscotty thanks for sharing your story. It gives me some hope that there is a possibility that he'll grow out of it. Your observation about the brain stimulation seems to make sense. What medication is your DGS on for the seizures? I am worried about what the drugs are doing to my little baby.

The next few days will be busy with trying to organise the logistics of the flights and hotel in London and also for someone to look after DS1 whilst this is all going on.

Hello again
Had to work all weekend so only able to read up today.
My DGS was never medicated although the paeds reg on the kids ward when he was first admitted (6 mo) via A&E said he would have done if he had seen him initially, but would now wait and see.
On the second bout of vacant episodes they also decided not to medicate. Thandfully they did peter out, although his disability consultant said that if they started up again she would medicate as it would interfere with his physical progress, sitting etc.
They did stop completely when his iron levels were normal although we were told not the cause - but I wonder if it made his irritated brain a little more sensitive? DGS is a rubbish eater and still below the charted line!! so we have always added vitamins and particularly fish oils from the earliest possible time. Probably didnt help but at least felt as though we were doing something positive.
When DGS started to outgrow them he would, for eg. hear the dog bark, go still and look as though he was waiting for an absense, then looked confused when it didnt come, and just carry on. I sincerely hope you will have a positive outcome as many children do outgrow epilepsy though not always sadly
xxx

hello beammeupscotty

Thanks again for your message. When we see the specialist I will ask about vitamin supplements. At the moment I am terrified to give anything new to him.

Every time he does something new I think is that a seizure or just normal development. He seems "normal" enough to us, he's just started to roll about a bit this week, which he seems thrilled about.

Do you have any suggestions of questions I may want to think about for the specialist?

Hi HB
Identify completely with the 'watching like a hawk' and 'was that normal?!'

Thank God our experience at the time was relatively minimal, although the episodes (I believe they were called petit mal fits) carried on for several months altogether, so I hope the other mums on this thread have more detailed ideas?.

We found it helpful to video the eye rolling but if your DS is on phenytoin thats not an option. Take a notebook of all the episodes he had, how long they lasted, what form they took etc so they have the clearest picture possible. My SIL had a whole page of the times of the eye rolling for just one day, and we caught it on video!

If they dont have notes on his birth and any untoward incidents make sure you provide them.

Ask about infantile spasms by all means but there are very many manifestations of epilepsy, some more treatable than others, so dont expect the neurologist to make a diagnosis unless something definite shows on the MRI or the next EEG. If nothing obvious it will be the dreaded 'wait and see' when all you want them to say is 'he will grow out of it'!!!

They told us they may go away, stay the same, or get worse. duh Also be prepared, as all the SN mums know the doctors NEVER say anything very positive in case they are sued! Expect to feel distraught, anxious and alone - and if the news is good, its a bonus. Its about 9 months since DGS had his last one and its almost at a point of NOT being the last thing I think about at night and the first in the morning. My DD cant even bear to read any posts on epilepsy on MN.

Keeping fingers x for you all.

Oh and prayer, I know it sounds trite but I truly believe DGS has a guardian angel.

Hi
Thanks, we've been fortunate with the advice we have received so far and were able to catch the seizures on video prior to going to the emergency room.

When we took DS to the doctor the first time he wasn't showing any signs, and in fact the doctor said to us we had a perfectly healthy looking boy. We were back there two hours with video evidence then 10 hours later were at A&E being administered diazapan ... then later phenytoin.

We have all his medical records ... he's only 4 months so it is literally his birth record, immunisations so far and then the stuff from his hospital stay.

I suppose if nothing shows on any of the tests then it is potentially "good news" ...

I am pretty sure I saw a very brief eye roll today ... so I am wondering if he has got used to the phenytoin already, or if his condition is just getting worse.

I can't believe we have to wait another week before we will be able to see someone. It seems like such a long time. At least now we have the flights and hotel booked and we have arranged for a friend to look after DS1 whilst we meet the specialist. I am finding the waiting so hard.

I hope that my DS also has a guardian angel.

He had another seizure as I was putting him to bed. It was brief (8 seconds) but longer than the one this afternoon. It seems the medication isn't working as well as it was. I think he has grown a bit so perhaps he needs more.

Our doctor is away at the moment as his father is dying, we don't have the contact details for the neurologist who prescribed the medication because it was through the local system here and they don't give out the phone numbers.

We feel so helpless.

I'm really sorry HB, I know what your going through. my mum is Beammeupscotty, and told me about your thread. otherwise I usually stay clear (too many memories)
if possile, ring the the paed ward and ask for advise, and/or admitting.
stay positive x

Oh Sneezecake, I am so sorry to drag you back here, I really don't want you to re-live anything so painful.

Thank you so much for your support.

I finally remembered that the neurologist gave us his mobile phone number when we were at the hospital and we called him this morning. He told us to up the dose of phenytoin as it was a very very low dosage for his weight. He thinks that because DS has put on weight he needs a slightly higher dose.

We haven't noticed any more seizures since the one he had before he went to sleep last night.

Only 2 more days and then we are on a plane to the UK.

I

at least its being controlled by the phenytoin, when ds did it when he was born neither phenytoin or phenabarbitone controlled them and had to be sedated for two weeks.

hope the next 2 days goes quickly for you

I can't even begin to imagine how terrifying that must have been for you. Your mum mentioned that he may have grown out of the epilepsy now.

DS1 is a very good distraction, he keeps us all very busy, plus packing for the trip. I am trying not to think about the general anesthetic that DS2 needs to have on Monday when they do the MRI. It will mean that hopefully they will have more information when we see the specialist on Wednesday.

Hello again
I think it is a positive sign for you that the phenytoin is working at a low dosage and that your LO is progressing so well developmentally. Sorry he did a bit of the eye rolling nastiness, that must have been devastating for you all and something that you could do without with all the packing, journey etc. and not even a nice time at the end of it!
Funnily enough it is less stressful, all the testing (even the MRI) as you get caught up in the moment and are busy a lot of the time and have nurses and doctors, who are knowledgeable, to talk to. They're a bit like a security blanket. But its the quiet time at home when you're watching for any flicker that is awful.
Sneezy and I just got through it (sort of!) by looking no further ahead than the next hour or two, and not the following days.
Again we wish you the best for the coming weeks and a safe journey.
xx

yes all being well, touch wood ds hasn't had any since july 25th 09. but i dont want to jinx anything!
we still have his cp to deal with, but since the fitting stopped that seems manageable.
will be thinking of you its a whole shitty process but a means to an end, the GA is only for a really short time and he will be monitored throughout. try not to worry. I think I read somewhere that when it starts so young they have a greater chance of out growing it.

scotty & sneezy thanks for your messages. I will post next week to let you know how it went. I'm glad that your LO seizures have ceased . I am glad that his CP is manageable.

It all seems slightly surreal, I think you are probably right about it all being slightly less stressful when we are "in the moment" so to speak at the hospital, etc. When we were in the ICU last week the little girl in the bed opposite ours died. It was awful, so so sad, but it gave us some perspective.

Thanks again.

We met the specialist today and sadly we have been told that our little boy has Tuberous Sclerosis.

We are in shock. Not really sure what it all means.