Seizure attacks as early as 4 months old. Please, help us.

[Fait]

I have a daughter who is turning 7 months old this August 9, 2012 and she started having seizures when she was 4 months old.. Hope people will take time to read what I will be posting.

May 6, 2012 when she first had her seizure. We were just doing the normal day to day living at home when she started her first seizure. We thought, the reason for the seizure is because it was too cold in our room because we lowered the temperature of the room from 22°C to 21°C, after an hour, we saw our daughter seizing, since we don't have any back ground of it, we wrapped her with blanket and I ran outside so that she will feel warm. When she was in my arms, I thought we will lose her already because her eyes were twitching very bad and her whole body was jerking. Her first episode of seizure probably lasted for 15-20 minutes, then we rushed her to the nearest medical center, while on the way to the center, her seizure stopped. So we spoke to a general practitioner doctor and we were told that it was NORMAL for babies to have seizure, coz the baby might be having a fever. So, we thought it was just a sudden raise of temperature, resulting to FEBRILE CONVULSION but unfortunately, she doesn't have any fever that time. So we went back home and lived normally like nothing happened. Baby was normal, responding, playful and happy. So, we thought it won't happen again. Come May 12, she had her vaccine around 1PM then we visited a friend. Around 6pm, on our way home, while walking inside the mall, we saw her jerking again and we rushed her back to the medical center where she had her vaccination (good thing it was only 3 mins away) when the Pedia saw the condition, he gave my daughter an oxygen right away and a suppository but unfortunately that didn't fix my daughter, so we rushed her to the nearest hospital by ambulance and there my daughter seized for over 45 minutes. She was admitted for 2 days but the doctor wasn't able to give me a definite answer/diagnosis. I was just told that it can happen to anyone, etc. She was given phenobarbitone to stop the seizure. After discharge, she was having medications of phenobarbitone, 15mg 3.75ml (twice a day). Everything went well for that 2 weeks until we ran out of medications already since the meds given to us were good for 2 weeks only, we thought everything will be fine already. Her last doze of meds was given on a Thurs night (May 31st) then she didn't take any phenobarbitone the whole Friday, but come Saturday night, around 11:30PM, she had a seizure again that lasted for 5-10 minutes and this was June 2, 2012. We manage her seizure by using diazepam suppository only and just wait for seizure to go away. So, we went back to the hospital and ordered for new batch of phenobarbitone since it's obvious that she still needs it. After getting it the following day and administering it to my daughter, there was a follow up seizure again on June 6,2012. We thought that the pheno has not been running into her system yet that's why seizure occured again. We never missed giving her the meds, every 9AM and 9PM. Even she's taking the meds, she is still having sudden jerks and eye twitches. Her 5th episode of seizure started again on June 26, 2012 and the date keeps going on... July 1, July 23, July29, July 31 and her most recent August 2, 2012. Her latest seizure was the scariest. It happened TWICE but it's not her regular seizure. The first one was around 630pm, my wife noticed that our daughter was like chewing something then she started to be restless and saliva is coming out from her mouth, so I tried to side her and while doing it, she just threw up a lot of saliva and it was all over me then she started crying. It made me relieved because it means that she's back to reality. Another attack happened again and this was very alamring for us since it was not a normal seizure then her mouth turned blue and my wife told me that our daughter stopped breathing for few seconds because she heard her exhaling very deep. It was like she was holding her breath then exhaling.. Then she cried for few seconds and fell asleep. We rushed her to the ER but no pedia neuor available and we were just informed that seizure can cause difficulty of breathing and may turn blue sometimes. We don't have any oxygen and suction machine at home, what if these things happen again? We are now very scare for our child.

Additional to these, when my daughter was discharged first time around May 14, we had an EEG and MRI tests for her but all results came normal. We brought her to a Pedia Neuro this time and the doctor requested for another EEG but still normal, on the third request, the EEG showed something that there were WAVE SPIKES on her right occipital which I don't know the meaning of it. We haven't spoke to his doctor yet about this result since he is on a vacation leave this Ramadan. We will have her checked on Aug 12 or 19th. I have a video posted on youtube but I am not yet allowed to post links here. Hope admins can make an exception to my case.


Thanks,
Fait


PS: Sorry for the long post.

 

[Starburst]

Hello Fait,
First of all, what country are you in? From your post, it seems like you may be located in the Middle East. I am originally from the U.S. but currently live in an Arab country. My son started having convulsions when he was just a few days old. He is still having seizures nearly a year later. I am still new to the world of seizures and epilepsy, but a few things I may be able to advise you on:

1. Make sure to find a good doctor as soon as possible. If you live in a smaller town, you may need to travel to a bigger city and go to the best hospital you can afford. If you cannot find a pediatric neurologist, at least try to find an experienced neurologist who has experience treating children. I say this from personal experience living in a city in which the standard of medical care is not as good as it should be. We must travel several hours to see a qualified doctor.

2. It seems odd that the doctors left you without enough phenobarbitone to continue treating your daughter. My son has been taking this medication every single day of his life for the last year. Obviously, you must follow your doctor's advice, but this is a medication that usually should be taken continuously and not suddenly stopped. Stopping the medication suddenly may be the cause of additional seizures. In the country we live in, there is a shortage of this medication. We try to buy as much as we can whenever it is available so we do not suddenly run out.

3. Make sure you know how to perform infant CPR in the event of an emergency. When my son was younger, he used to stop breathing during sleep. I used to cup my hands around his face and blow fresh air into the area of his mouth/nose. Try not to leave your daughter alone as long as she is having this problem. In our case, the doctor said we should place our son on his side when he is having a seizure.

4. It can be hard to treat seizures. You must be persistent and try to find a doctor who is compassionate and available to answer your questions. You should feel comfortable contacting the doctor whenever necessary to ask whatever questions you may have. This is important because you will probably have a lot of concerns and questions in the coming weeks and months. The choices for medication for infants are limited throughout the first year. Now that my son is almost a year old, we may be switching medications soon.

Hope this helps a bit. I am sure others will provide you with additional thoughts and information.

 

[Fait]

Hi um-adam. Thank you for your time reading my earlier post.

Currently, we are living here in UAE, Dubai. I don't know if doctors here are very well trained when it comes to these matters. The doctor who is checking my daughter right works for a government hospital in Dubai, their specialty are for children and pregnant women. I hope he has a lot of experience in this case already.

Regards to your advise.

1. I do not know YET if the current doctor we are seeing is best at this case but I believe they are 3 in the Pedia Neuro team. I am hoping to speak to all 3 of them if necessary.

2. The first time she was discharged from the hospital, the pedia doctor only gave us 2 weeks supply of Phenobarbitone and told us to come back after 2 weeks, unfortunately you were right, the abrupt stoppage of pheno caused my daughter to have seizure again. Right now, we bought 3 months supply of pheno since we don't like to run out of this anymore.

3. This would be a big problem. I have no idea how to perform infant CPR. This was thought to me years back when I was still studying but I haven't done it with anyone. Hope you can enlighten me on this.

4. I agree with you, our doctors should be available at all times if we need to speak to them since we become very helpless if seizure is attacking our child.

How's your son doing now? I hope he overcomes his seizure attacks soon so that he can be normal as other kids too. Good thing you noticed right away that your son stopped breathing during his sleep. If that happens to us, my wife and I wouldn't know what to do.

Thanks,
Fait

 

[jimj]

My daughter started having seizures at 9 months (at still has them now that she's 3). I've seen all the types you listed and my daughter has quit breathing on us before, but thankfully not for very long. It's not uncommon for her O2 to stay low for about 5 minutes when she has a seizure, so we now keep oxygen on hand to assist her if her O2 goes two low.

My daughter always sleeps with a pulse oximeter on her. She rarely seizes at night, but if she does her pulse alarms on the low O2 and/or high heart rate. It's also helpful to be able to be able to use the pulseOx to check her O2 levels when she seizes during the day. However our first neuro told us that it isn't really bad when her face or fingers start turning blue. The extremities lose their O2 first, the body saves the oxygen for the organs that really need it (like the brain). She said to check the gums, if the gums start losing their color that's when you need to worry.

I hope you can find a good pediatric neurologist. 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 there's a chance your little girl has Dravet Syndrome (like my daughter does). But please don't go google Dravet Syndrome (DS for short, pronounced "Druhvay") 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.

And like I said above there's only a chance your daughter has DS. She probably doesn't have it, but it may be worth asking your neuro about it. I think there's a chance your girl has DS because of these risk factors:

-3% to 8% of patients with their first seizure before age 1 year have DS
-Your daughter has already had a status epilepticus event. A small study (I still can't post links) found an 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

Since there's a chance your daughter has DS I would avoid Trileptal. It's one of a handful of drugs that's contraindicated for DS (i.e. it makes DS worse).

You may want to consider dietary therapy like the Ketogenic Diet. 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.

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. You may also ask if it's possible to get her SCN1a gene tested. Most cases of DS are caused by a mutated SCN1a gene.

 

[Fait]

@jimj:
Hi. Thanks for sharing your experience here. Good idea about the oxygen pulse oximeter. I hope there's an availability here in Dubai so that I can provide one for my daughter.

Your daughter has this condition for almost 3 years already. Is it affecting her development or she is just on same stage with other kids?

Where you able to put your daughter to Ketogenic Diet even at a young age?

Thanks,
Fait

 

[jimj]

@jimj:
Your daughter has this condition for almost 3 years already. Is it affecting her development or she is just on same stage with other kids?
Where you able to put your daughter to Ketogenic Diet even at a young age?
Thanks,
Fait

Thankfully my daughter hasn't had any delays yet (and we hope she never does). Asides from having about one seizure per week she does have mild ataxia, which basically means she's clumsy and falls down more than she should. Still runs and plays like other kids, just falls more.

We have never done the Ketogenic Diet, but will be starting soon a variant of it called the Low Glycemic Index Treatment (LGIT). The Ketogenic Diet (KD) is the gold standard in dietary treatment and is the one most commonly available. If any of the dietary treatments are available to you most likely it's the KD you'll have access to. I don't know how early you can start the KD. Even if you can't start it yet it'd be worth asking your neuro about it to find out if and when it's an option.

 

[Fait]

@jimj:
Thank you for suggesting the KD. I will ask our ped neuro about this.

Currently, my daughter had an attack again last Aug 9 and 330AM this morning (Aug 11), we rushed her to the hospital coz she is burning at the same time. I believe this is a febrile seizure. This is the first time she had a seizure with fever. My wife and I do not know what to do, should we cold compress her or what...

We also found out earlier that she has pneumonia. I don't know how she got it, doctor explained earlier that aspiration might have caused it. Not sure how true is that.

 

[jimj]

Fevers can be a seizure trigger. We were just told to alternate Tylenol and Ibuprofen every four hours to try to bring a seizure down and keep it down. I doubt a cold compress would keep a fever from starting a seizure, but I'd go with whatever your local medical team advises.

1. How frequently is your daughter seizing?
2. Are you still using phenobarbitone?
3. Do you have a rescue med to stop her seizures? Do you have to use it or do they stop on their own?

 

[Fait]

@jimj:
That's what I heard too, that high fever can cause convulsions. We are giving her paracetamol every 4 hours to maintain her fever. About the cold compress, I think it's for her body temp to cool down. Because when nurses gave my daughter a bath, from 40c, it dropped to 36C but of course, she is still sick.. I think it's just their way for the heat to come out.

For your questions:
1. She seizes once a week, sometimes once every 3 weeks, but sometimes every other day. Her last seizures lately are every 2 days.

3. Yes. Still giving her phenobarbitone, twice daily. But we will be reducing it gradually. After 10 days, we will lower it to 4ml, then after 5 days, to 3ml and so forth... The doctors increased her depakine.

3. We have a diazepam (suppository) for her seizure. We were advised to use it if my daughter is seizing already for 5 mins. But for the past 3 months, everytime she seizes, we give it right away.

 

[jimj]

So you using diazepam every other day? I think that may be frequently enough to risk getting benzodiazepine withdrawal syndrome. I know of another epilepsy parent that ran into benzodiazepine withdrawal syndrome after giving diazepam 17 times in a month. My favorite rescue med is intranasal midazolam (it's supposed to be even better buccally, but we haven't tried it in the cheek yet). For us it's more effective than diazepam, has less negative side effects than diazepam, is easier to administer and is MUCH cheaper too. I don't know if less likely to cause benzodiazepine withdrawal syndrome though. I do know of parents that have used midazolam twice a week for years without problems.

Have you tried waiting five minutes to see if her seizures will stop on their own? Not an easy choice to make, rescue meds are supposed to be more effective the quicker you use them, but I suspect diazepam overuse may cause problems for you too.

Depakine (variant of the Depakote we use) has been pretty effective for us. I hope you can gain better seizure control soon.

As usual, don't make any treatment changes based on my amateur advice. Just some food for thought you may want to discuss with your neuro.

 

[jimj]

Just noticed in my diazepam notes that its half life is 48 hours, so it probably takes about a week to get out of her system. AFAIK if you're using it more than once a week you'll be building up a load of diazepam in her. Midazolam's half life is 3 hours, so that may make midazolam less likely to cause benzodiazepine withdrawal syndrome.

The one benefit to diazepam is its long half life which should (in theory) provide protection for much longer than midazolam.

 

[epileric]

Just noticed in my diazepam notes that its half life is 48 hours, so it probably takes about a week to get out of her system. AFAIK if you're using it more than once a week you'll be building up a load of diazepam in her. Midazolam's half life is 3 hours, so that may make midazolam less likely to cause benzodiazepine withdrawal syndrome.

A half life of 48 hours is only 2 days, not half a week.

Also, you have to remember that even though someone keeps taking a drug your body keeps breaking it down & constantly expels what was previously taken (how long ago depending on the half-life) at the same time so you do not build up a load but simply maintain a specific level.

 

[Fait]

@jimj:
Yes. Everytime she has a seizure attack, we use diazepam right away. There are times she gets her seizure after 2 days. Here are the dates my daughter had seizure and was given diazepam to control it. Check the intervals.

June 2
June 6
June 26
July 1
July 23
July 29
July 31
Aug 2
Aug 9
Aug 11

We haven't tried waiting for 5 mins before giving the diazepam. True, it's a very hard choice. Because, even after giving the diazepam. Her seizure still lasts for 5-6 mins, 8-10 mins the most.

I have no idea too about benzodiazepine withdrawal. I will research on that now.

 

[jimj]

A half life of 48 hours is only 2 days, not half a week.

Also, you have to remember that even though someone keeps taking a drug your body keeps breaking it down & constantly expels what was previously taken (how long ago depending on the half-life) at the same time so you do not build up a load but simply maintain a specific level.

Yes, 48 hours = 2 days. Therefore after this many days this is how much diazepam you'll have left in you:
2 days: 50%
4 days: 25%
8 days: 12.5%

Of course none of these numbers are exact, everyone's going to have a little different rate of drug elimination. 48 hours is a nice even number to work with though. So my thinking was if you assume that 48 hours is the correct half life you'll still have some diazepam (12.5%) in you even after 8 days. Therefore I rounded that down to a week to eliminate (most of) the diazepam.

Additionally when I've used diazepam with my daughter I could see its side effects for 4 days, so I just assumed that there was still some in her even after 4 days (just not enough to have obvious side effects).

I don't follow your logic for not building up a load. I'm pretty sure if you use diazepam every day you're going to end up with a very high amount of it in your body and suffer some serious consequences. I.e. your intake rate of the drug is greater than the elimination rate. By my math even taking diazepam once a week long term is going to cause problems. Of course arithmetic isn't my strong suite, it's very possible there's a flaw in my math (or logic).

 

[jimj]

@jimj:
Yes. Everytime she has a seizure attack, we use diazepam right away. There are times she gets her seizure after 2 days. Here are the dates my daughter had seizure and was given diazepam to control it. Check the intervals.

We haven't tried waiting for 5 mins before giving the diazepam. True, it's a very hard choice. Because, even after giving the diazepam. Her seizure still lasts for 5-6 mins, 8-10 mins the most.

My neuro said not to use diazepam more than once every 24 hours. She never gave advice for long term use (she correctly assumed I'd call if my daughter was seizing ever other day). Just eyeballing it, it looks like you're averaging about once a week. I don't know if that's going to be a problem.

I tried explaining my logic in the previous post. My logic could be wrong, but for me personally I wouldn't feel comfortable given diazepam once a week (or more) long term (months).

If your only other option is daily seizures maybe weekly diazepam is ok. Hopefully you're neuro can better help guide you through these difficult decisions. Obviously the best option is to find the best treatment to prevent her from having so many seizures so you rarely have to use a rescue drug. In the meantime you may want to ask your neuro about midazolam.

I'm no doctor, don't trust anything I write.

 

[epileric]

Oh- I thought if 48 hours was a half life it'd be gone by 96 hours. You may be right, do you have any citation or cite that explains that? I always thought it was half the time.

When you say build up a load it implies to me that none is being excreted whereas because we're constantly breaking down & excreting we maintain a specific level in our blood.

Either way I just realized that this is not relevant to Faits daughter because she does not take the drug on a daily schedule, only when is needed to help control seizures.

 

[jimj]

Either way I just realized that this is not relevant to Faits daughter because she does not take the drug on a daily schedule, only when is needed to help control seizures.

Yup, the best option is to not need diazepam in the first place.

 

[epileric]

Yup, the best option is to not need diazepam in the first place.

lol, true but some of us do.

 

[donnajane]

Hi, my son was first rushed to the ED with a cluster of seizures when he was around 7 1/2 months old, he's now 19 months old. He had been having them for awhile before hand but our GP told me he was just doing them for attention. Lukcily he had a few small ones while I was at another my own GP appointment and she saw them and said no their is definetly something happening. He has had 5 EEG's 4 normal and only the 5th showed slowing on the back right of his brain. They have noticed with 2 of his EEG's his eyes roll back but his brain waves appeared to alter very little. Nureo said all the footage we showed him showed several different types of siezures but he was not sure what was really happening and said he would keep looking but hoped he would outgrow it. (We had a Nureo from the hospital but he told it was just Shudder Syndrome and didn't wan't to look into it anymore despite my sons condition getting worse, he said go back through the ED and they will get me if needed, his secretaty gave me the name of a private Paedeatric Nureologist and he has been amazing.) At 18months old my son had an MRI and Lumbar puncture. HIs MRI showed inflamation of his Putamen which his Nureologist said was very unusual so asked for the disc of his MRI to be sent over and he was going to dicsuss it was a group of other Paedatric Nureologist. We see the Nureologist this Thursday so hopefully we will find out more then. We have an appoinment with the Metabolic Unit at the Childrens Hospital to go over his Lumbar Puncture results and how/if they relate to his MRI.
He is currently on Tegretol suspension 2.5ml in morning and 7.5ml at night I think it has had some affect although he still does some "interesting" things.
Keep searching for answers. I know for me this forum has been amazing and helped me so much.
Donnajane

 

[Starburst]

Hi Fait,
Hope you and your wife find relief for your daughter soon. There are some websites that explain infant CPR, but it is best to take a class so that you are familiar with the procedure. Regarding all the questions you have, you might want to write them down and discuss them in detail with your doctor. I usually forget my questions if I do not write them down. For example, you might want to ask if it is okay to use diazepam so frequently. As I said before, it is so important to have a doctor who is an open communicator. We are really fortunate to have a doctor who encourages us to e-mail him with any questions or concerns. This has saved us a lot of time and distress as we live far away from his office. It is good that you live in such a big city. Hopefully this means better access to good health care for your daughter. My son is still having seizures and has just switched medications. I have another son who was just diagnosed with epilepsy as well, so it has been a difficult year.