Hello Everyone

[CatherineInIreland]

Hi

I was searching the internet for information about infantile eplilepsy and came across this forum so I registered so that I might find out as much as possible.

I have 3 grandsons and the youngest who is 5 months old was taken into hospital yesterday to try to find out what is causing his seizures.

They started a few weeks ago and all along we thought it was just cramps. But then out of the blue a week or so ago, he stopped smiling totally. Up until then he had been a total chuckle bear, he smiled nearly constantly and rarely cried. But that stopped suddenly and now he hasn't smiled even once since.

My mum became a little suspicious that the seizures were not just cramps and actually privately mentioned epilepsy to me. My daughter-in-law was very worried about her baby too obviously and 2 days ago she and my son took the baby to their GP. She did urine tests and so on and gave him anti-biotics and told them to come back in a couple of days if he was not better.

They took the baby back to the GP yesterday and she sent them straight to hospital where a paedatrician saw him. He was admitted yesterday simply for observation.

Once in the ward, a nurse observed him taking one of the seizures and suggested to my d-i-l that she film him to show the doctor. Then in the middle of the next seizure my d-i-l was just about to film him when the dr. came in and saw the baby mid-seizure. He immediately arranged for him to have a scan and told my d-i-l his concern was epilepsy.

What happens is that the baby takes about 4 or 5 seizures in a row maybe 3 or 4 times a day. His little arms become rigid straight out in front of him and his legs and feet curly up into a foetal position and he lets out a screeching sound. This lasts about 5-10 seconds and he relaxes for a little and then another one kicks in very quickly.

After each bout he goes into a kind of dream world for maybe an hour and doesn't seem to see or react to anything. Yes, he will blink if you put your hand very close to his eyes, but other than that he just lies there in a daze.

He has gone from being the happiest little soul to almost another baby.

So, back to the hospital. The dr. arranged the scan and said he wanted him to have an eeg urgently. This can't be done locally and he has to go to Dublin (about 4 hours away). (I'm in Ireland by the way, hence the log on name). So, they did the scan and it was clear. They have the urgent appointment for the eeg for Monday morning and he will be taken with his mum by ambulance to Dublin.

I feel so sad for them and their wee baby. I can hardly see to type just now coz of the tears in my eyes. Sorry for such a long post but I wanted to get all the info I know so far into it, and as I said, I want to gather as much information as I can.

Thanks for reading.

Catherine

[Nakamova]

Hi Catherine, welcome to CWE!

I hope your grandson gets a good diagnosis soon. It's scary to see a loved one with seizures, and not know what the next step is. There are folks here at CWE who have children or grandchildren with epilepsy, and can relate. Feel free to ask questions, and search on the site for info specific topics, as well as vent and chat as needed.

Best,
Nakamova

[CatherineInIreland]

Hi Nakamova

Thanks for the welcome.

Yes, I see lots of threads I want to read in more detail.

I suppose once he is properly diagnosed then I can start looking in earnest. It's the not knowing and waiting that is the horrible thing.

Until today I never even knew babies took epilepsy. And now I read threads here and see many young children have it. But I see a lot of positive input too and that is reassuring.

I will be back tomorrow to read more as we have guests arriving any minute ~ the last thing I feel like tbh but it was arranged before all this so I have to put my best foot forward.

Catherine

[McGill]

Greetings from Canada, Catherine.

Was your youngest grandson suffering from seizures before they were noticed and were there any pre-existing dispositions to seizures on either side of your grandson's family? One never knows WHY they occur. It's a mystery, for sure!

Here's a link I found for you to hopefully answer some of your questions. http://www.hopkinsmedicine.org/neuro...le_spasms.html

[CatherineInIreland]

Hi McGill

No, they just sort of started out of the blue recently. We had all thought it was wind or cramps, you know how some babies can suffer terribly with them? We thought of collic. But it was his 'dream like state' and then the little screams which weren't ordinary noises that made everyone notice more.

One of my husbands teenage nephews developed epilepsy a year or so ago but prior to that, we are not aware of anyone having it in either our own family (the baby's dad's side) nor in the baby's mum's side.

I guess we will see what happens on Monday after the eeg.

I will update.

Catherine

PS Forgive my not doing any more replies following this post. Guests due so will have to switch off for tonight. Be back tomorrow.

[McGill]

Catherine, I read the link above. It mentioned the "jack knife-like" movements you described. Also, what you mentioned about your nephew seems to confrm what I said about a predisposition to seizures. However, as you say, the EEG results will be the definitive answer.

Seizures can be idiopathic (of no known origin), especially if there's no known history of them on either side of the family.

It never hurts to go armed with information to the dr. so that you can ask questions about any situation intelligently. By doing that, you're taking a pro-active role in any medical issue. Good luck!

[CatherineInIreland]

Thanks for the reply McGill.

They've put the baby on Epilim (simple partial?). He's getting it twice a day (still in hospital) and they have a board to note the times and duration of seizures.

He spent a fairly ok day yesterday and drank his bottle (a new formula suggested by the hospital) and he slept well. He even had one little smile and we thought things were getting better.

However today he had a seizure that lasted for a full 10 minutes and then took 2 futher ones.

He is being taken to hospital in Dublin on Wednesday when they will do the EEG.

From the tiny bit I have read, I really think he has epilepsy but I guess we will wait and see.

Thanks for your input.

Catherine

[McGill]

If a pattern of seizure activity can be established, that will be useful for the drs. & nurses, especially as your nephew gets older. Keeping a journal of his seizure activity will help immensely!

[CatherineInIreland]

It's grandson not nephew :-)

But yes, I assume a full activy report will help.

The baby is very up and down now. He's fine for a while and we think it's ok and then he took a 10 minute sezuire today.

Very disturbing but hopefully after the eeg we will see a way,.

[BuckeyeFan]

As a grandpa, my heart goes out to you. It must be very hard on you right now. Those little ones are so special.

To help you through this, try to focus your energy supporting your son and d-i-l. That might help you and will definitely help them.

Best wishes for you and feel free to stop in here anytime.

[CatherineInIreland]

Thank you BuckeyeFan.

Yes, that is what we are trying to do here. The whole family are rowing in to help. My mum spent all afternoon nursing the baby to give d-i-l & son a break and to get ready for tomorrow. She is fabulous with babies and is a very soothing person to hold the baby. Plus my other son and his fiance are helping lots with the child minding of the babys 2 older brothers. And the babys other grandparents, along with myself & my husband, are helping with the baby and the babysitting too. So it is good for us all to pull together.

The baby will go to Dublin in the morning and his eeg is at 3.30. The drs. here told them that he would most likely be kept there for a day or two. I guess that means we will know more after the eeg but we are still rather in the dark about what happens next.

The medication doesn't seem to have kicked in yet ~ he's had 3 seizures today so far.

I really need to get time to read more here but it is rather hectic as you will understand so getting any time on the net is limited.

Thanks again.

Catherine

[Meetz1064]

and how do you do, Catherine? We haven't "met" yet. I'm Meetz, and it's nice to make your acquaintance!

So, it does sound as if your little wee one does have E, and from the brief descriptions, the rigidness, the strange sounds he makes, etc--he may very well have tonic clonic seizures (aka grand mal seizures).

Do keep in mind that the first med he tries is not the end all, be all--and the dosage is only a recommended dosage as well. There are other things to consider, too, even at his young age.

You spoke of putting him on a different formula. What's different about it? Is that when the longer seizures started?? Consider this: Some E patients (like me, and several others on this board) are LITERALLY allergic to gluten, dairy, soy and/ corn. We can't handle them, or their derivatives, and having those things CAN set us off into seizures. It IS something to consider. Quite often, when you see a reference to the GARD diet, that's what is being referred to.

Consider having your grandson tested for allergies against those things--even for celiac disease. It is a distinct possibility.

I wish you and your family luck with the EEG. Please make sure that it's not some silly little 20 minute thing. At least 24 hours, long enough to get plenty of activity going on that they can thoroughly capture all of the seizures going on.

Stay calm and reassuring around him.....it will be OK. And we'll be here for ya, no matter what.

Take care!

Meetz

[CatherineInIreland]

Hi Meetz. Nice to meetz you :-)

Thanks for all that info.

The different formula they put him on was to deal with his reflux. He had been on Gaviscon but this obviates the use of Gaviscon. He actually seems to be dealing with it better than the previous formula.

I rang my son to pass on the info you gave here so we will have the baby tested those allergies. The baby's mum, my d-i-l, has relapsing/remitting MS and she deals with that mostly through diet and avoiding all gluten. So at least she could handle any diet the baby might need relatively easily as she is so aware of the contents of all foods and mainly only eats fresh fruit & veg herself and mostly avoids packet/pre-prepared foods.

I don't know how quickly they tell the parents the results of the eeg but I assume it is fairly quickly. My son says the length of the seizures have shortened somewhat today so maybe the medication is kicking in?

I'll update about the eeg as soon as we hear.

And thanks once again for all that valuable info.

Catherine

[rhiz]

good evening catherine
i hope you find all the information you need to support your family further here
and good luck for the eeg results too!

[Meetz1064]

be all surprising if he DOES have a gluten sensitivity, given your DIL's diet...but still, do have him checked. Quite often, a blood test can tell you if there's a sensitivity. Sometimes, a biopsy has to be done......

[BuckeyeFan]

Will say a prayer for him in the morning. That should be close to his test time in Ireland.

[CatherineInIreland]

Thank you all.

D-i-l just rang and got a quick update as on mobile/cell phone. Will get more info later but basically this is what happened.

Baby had his eeg which confirms the seizures. Consultant wants him to stay in Dublin hospital for a week but bed was not available today so he is down for urgent admittance in Dublin which will probably be Monday next. They intend to keep him there for about a week for more tests including an mri. The mri can be done locally but the specialists dealing with this are in the Dublin hospital so they want the baby there as the consultants know exactly what they are looking for. He is being readmitted to our local hospital tonight.

My d-i-l asked if the seizures would interfere with his development and they said that because he was caught so early (1 week to 10 days after the first one), that the outlook is good.

That's really all I have so far but will have more when I see them.

Thanks again for all your help and support.

Catherine

[Meetz1064]

That's really great to know that you could get the answer so quickly! It has to bring you SOME relief! Just take it all one step at a time, and everything will work out.

One of the supermoderators here, Dutch Mom, has a young son (10 years) who has a severe form of childhood E, called Lennox-Gastaut. He's on the ketogenic diet. It's different from the others--far more strict, but could be worth looking into, depending on what they find. Why don't you PM (private message) her? She's got some really good contacts/websites she can point you towards, also, I believe.

Private messages are easy if you haven't figured them out already. Click on the "Quick Links" in the upper right corner, Scroll down to the Miscellaneous section. Click on Private Messages. Fill in the name of the person (DutchMom, Meetz1064, or whomever), put a title, and write away.

Take care!

Meetz

[CatherineInIreland]

Thanks Meetz.

Yes, it is great to be having things done so quickly. Once we have all the info it will make it easier to do our bit.

I'll send a message to DutchMom as you suggest ~ providing I manage the instructions on how to do it here. :-) I am very much into using food as an aid to helping conditions so would be interested in what she has found.

Thanks again for all your help.

[BuckeyeFan]

This is positive news. The sooner you know what you are dealing with, the sooner you can start to fight back. Unfortunately, many of our members here searched for months and even years before finally being diagnosed correctly.

Our prayers continue.