Seizures

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Seizures

Posted 1 year ago by Carol-Anne

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Carol-Anne said 1 year ago

Hi

I was wondering if someone could tell me how often there child is having seizures. Harry had his first at 5 months and has had quite alot since. He has just turned one and is getting them on a weekly basis. They started out very brief but lately he is having clusters of 3 or 4 lasting 30 to 60 seconds in the space of ten to fifteen minutes. The day before his first birthday he had seven in a day and they were vacant seizures but his lips went blue too. they seem to be changing all the time. He has had a few major ones which have lasted up to three hours and was difficult for the doctors to stop. i just wondered if this is typical WHS or i need to push his doctors to be changing his meds. Also he seems to have the major seizures when he cuts a tooth. dont fancy going through that for every one.

Thanks for any responses
xxx
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Elijahsmommy said 1 year ago

Elijah had Seizures when he was in the NIU at primary children’s. They sent him home with Phenobarbarbital which worked really well , But as he is vast approaching 5 months and has almost doubled in size he is showing sine of seizures again. His seizures last about 30 seconds and he has mutable seizures throw out the day, clusters seizures are common as well 2 or 3 in arrow only a few seconds apart.
Because Elijah’s seizures have been so manageable in the past, I’m certain there is something are pediatrician can do to manage his current seizures. I hope what we are experiencing will help as you try to find something to help Harry with his seizures as well.
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coclaire1978 said 1 year ago

My son Sam had his first big seizure at 14 months and then after would have clusters... every 15 minutes or so, then would get more often lasting 30-60 seconds as well. He was diagnosed with Myoclonc and Atonic seizures. He was started on phenobarbital which controlled the myoclonic seizures and depakote helped for a while with the Atonic seizures. He was on both for along while and the depakote stopped working and we added the keppra and weaned him off the depakote and the medications have helped. He's had a few febrile seizures since then.

A year and half ago, he had G-tube placed and now that we can make sure he's getting proper nutrition that has really helped controll his seizures.
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Corinne said 1 year ago

Ana's seizures have always been febrile, so if we have controlled hee fever we can stay seizure free. Just when we thought we were winning she had a 2 hour+ seizure on Monday we are still in the hospital and it appears she has some kind of virus that has infected her brain. Ana has taken Keppra and phenobarb but neither seemed to have any effect on the length of the seizures or their frequency.
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Laurie said 1 year ago

Kaylee is 15 months, and we just had a 48-hour EEG to track seizure activity. They did see that she was having some mild breakthrough seizures, but it wasn't til we got home that we noticed her having more distinct myoclonic episodes. Gratefully, we have never seen them last more than a few seconds-- 10 at most. I hope I do not jinx her by saying that we have not yet needed to use Diastat. That said, I do not think her current medications are working-- she is on maximum levels of Keppra and Topomax. They considered adding Phenobarbital to her cocktail, but he said that her episodes were so brief and inconsistent that the medication posed greater potential for concern than the seizures themselves. She is getting a feeding tube put in on the 17th...I hope that getting the proper nutrition will also help control the breakthroughs. The one thing I have come to realize is that medications work differently for all of our kids...and from what I can see, many kids need constant adjustment or change before finding the perfect solution. It's true...none of our children is exactly the same.
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wendyr said 1 year ago

Jordan is 17 yrs old and has had multiple seizures. She started having seizures at 9 months. They started off as focal and got progressively worse. We used phenobarbital when she was young that seemed to work except for when she got a virus. If she got a virus she would have 2-3 hr seizures. We tried many different seizure meds with no luck. Except for Depakene(Valproic Acid) so we switched her to get her off phenobarbital. As she has gotten older they have decreased. We tried taking her off medication because she didn't have a seizure for a long time, but she got sick and couldn't eat then she had a big seizure. We would give her valium rectally to control the seizure and they gave her 3 doses before I could stop them and she had to be bagged for 2 hours. Due to the the seizure and being bagged her pituitary gland got messed up and her sodium level was not regulating correctly. She now has to have a limited amount of water to keep her sodium level at a certain level. She is currently on Depakene and that has controlled them well. If she has the breakthrough seizure we use valium rectally, but only 2 doses then we would use an IV seizure med.

Jordan got a tracheal diversion for respiratory issues and a feeding tube and that helped the seizures, because she wasn't getting sick. The key to Jordan is keep her healthy and she doesn't have seizures.
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Carol-Anne said 1 year ago

Thanks for the responses these have really helped. I'll discuss this with his paediatrician next week.
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Ross said 4 months ago

Hi All, and thanks for sharing.

I realise this is an old thread but I thought I'd chip in with our own recent experiences, for what they’re worth.

Mia has had momentary 'absences' from around the age of 6 months. I hesitate to call them seizures (although they have been diagnosed as such) as they are very subtle and only ever last a couple of seconds. We spoke with Mia's neurologist and the decision was made not to medicate at that time. Then in October last year, at around 9 months old, she had her first major seizure. You can read a full account over on the blog (http://www.wolfhirschhorn.org/2011/10/mia-rose/mias-first-seizure/) but, in summary, it was a prolonged complex-partial seizure and she was put on Keppra (Levetiracetam) with emergency buccal Epistatus (Midazolam) for us to have at home.

Mia was then seizure free for 2 months but had another similar episode (http://www.wolfhirschhorn.org/2011/12/mia-rose/just-when-you-least-expect-it/) just before Christmas. This time it took Midazolam and rectal Diazepam to bring her out of it. In hospital she tested positive for respiratory syncytial virus (RSV), which would tie in with what others have said about increasing propensity to seizures with concurrent viral infection. Her Keppra dose was upped to the maximum for her weight (~11lb) but no other meds introduced.

Just over a week after being discharged Mia had her third, and most recent, seizure following a notable increase in the number of absences she had been having. This was also her most severe to date and it took multiple dozes of Midazolam, Diazepam, Lorazepam, and finally Phenytoin over the course of an hour to bring her out of seizure. Needless to say her tiny system was pretty traumatised by such an onslaught of benzos, but she is now back to her usual self and we have added Nitrazepam (as yet unused, and long may it stay that way!) to our arsenal – to be administered if and when we feel Mia's seizure risk may be increased for whatever reason.

Carol-Anne, I'd be interested to hear if you got Harry's meds changed and, if so, whether it has had a positive impact on controlling his seizures. I really hope so.
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Carol-Anne said 3 months ago

Hi Ross,Glad to hear Mia is doing better now. We went through a very similar experience with Harry. We were in hospital on a weekly basis for six months. A couple of times in Intensive care. They have tried him on several different meds and he is now on Sodium Valproate and a high level of Lamotragine. these r a new combo which r for absence seizures. We have not been in hospital since they increased his meds. He is still having seizures about every two weeks but we r managing these with his Buccal Midazolam.
The last year has been pretty tough learning to cope with the seizures but we finally feel that we have turned a corner. It's really hard to watch our little ones go through it. We hope you find the right meds for Mia and We look forward to hearing how she gets on. She is so cute!
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Ross said 3 months ago

Hi Carol-Anne,

So happy to hear you have turned a corner with regards to Harry's meds and seizures.

We have had another couple of hospital admissions this past week or so and have added regular Nitrazepam to Mia's daily Keppra. So far, so good - but it's still early days.

Mia's doc has said our next step would be to introduce Sodium Valproate, so I'm glad to hear Harry is tolerating that OK.

I hear you on how tough it is to watch our kids go through this but Mia has thus far amazed us with how she bounces back so quickly. We joke that it takes more out of us than it does her!

Thanks again,

Ross
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MeandMine_A said 3 months ago

Hi, my daughter is now 12 yrs old and had seizures from about age 3yrs-6yrs, she is completely seizure free now and not on any medication. She began with Tegretol which had her completely uncoordinated and ended up being switched to Topamax. I, against DR orders began to ween her off of the medication when it seemed like she no longer needed them. Please don't try this, I did and we were fine but I'm not sure what symptoms your children are experiencing.
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Carol-Anne said 3 months ago

Hi Ross. Our Peadiatrician said that finding the right meds would be like climbing a ladder and he was right. Sorry to hear that little Mia has been in hospital again. I can sympathise and it's not easy. Hang In there bud. It's not that it gets easier every time our little ones take a seizure but we as parents I think learn to deal with them better. Keep us updated on how she gets on.