Infant epilepsy

[Ateens]

Hi. My 2 month daughter was diagnosed with epilepsy 5 days after her 2 nd month vaccination. She was presented with mixed seizures. She will seize in daytime naps or immediately after waking up or in state of extreme drowsiness. was on maintenance dose of phinobarb for a month which had controlled gtc but she was still having this soft seizure in which her hands would outstretch and eyes fixates. After a month these soft seizures converted to full tonic and spasms. Same time keppra was also started. It’s been 1 month since keppra was added a total of two months of medication my daughter is still seizing everyday. Once last two weeks gtc have also returned. 6 hours eeg done twice with no significant findings. Another 24 hour one is scheduled in 2 weeks time. MRI is also due in 2 weeks. I feel helpless. It’s painful to see your infant seizing every single day multiple times. We are always scared when she sleeps whether she will have a nice sleep or she will wake up in fit.


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[Porkette]

Hi Ateens,

Welcome to CWE! I'm sorry to hear that you daughter is having seizures, I'm wondering if she's having myoclonic seizures which are seizures a person has when the first wake up or when they go to sleep. I was having this type of seizure until my Dr. put me on vimpat and then that type of seizure stopped. It's up to you but you may want to ask for the Dr. to do a sleep study on your child along with an e.e.g. at the same time, this will show if she is having seizures in her sleep. I had them 1-2 hrs. before I would wake up but I didn't even realize I had the seizures other than feeling more sleepy than usual.
Whatever you do keep track of your daughters seizures get a calendar and write down what time the seizure happened along with the type of seizure she had by doing this the Dr. may be able to see a pattern in the seizures as to what time of day/night they happen and what days of the month. Also take note if there's a low pressure in the weather because that can trigger seizures for some people. I wish you and your daughter the best of luck and May God Bless You and your family.

Sue

 

[Nakamova]

Hi Ateens, welcome to CWE.

Unfortunately, treating seizures can sometimes involve a lot of trial and error to find a med that will be the right fit. If the keppra isn't working (and it sounds like it isn't) don't be shy about asking her docs to try something else. And it might not hurt to get a second opinion from another, pediatric epileptologist.

The vaccine may well have been a trigger for the seizures, but not the underlying primary cause. Given the timing of her seizure onset there may be a genetic component. Has your daughter had her DNA tested? Sometimes the results can point to a specific epilepsy syndrome and/or treatment.

Finally, I realize how painful it must be to witness your daughter's seizures. It may be a small comfort to know that she doesn't experience any pain during a gtc. The one blessing of them is that we aren't "there" while the seizure is occurring.

:hugs:

 

[masterjen]

Hi Ateens and welcome to CWE,
I, too, encourage you to seek the input of a pediatric epileptologist, preferably one that is based out of a children's hospital so if needed you will have access to other specialists should your daughter require this. As Nakamova mentioned, often epilepsy present from such a young age can have a genetic factor involved such as inheritance of epilepsy itself, a metabolic syndrome or mitochondrial disease. With regards to the latter two, the earlier the diagnosis and resultant intervention/treatment the better therefore I encourage you to ask for a referral to a geneticist if the pediatrician and/or pediatric epileptologist suspect anything syndrome related might be going on.

 

[Ateens]

Hi Ateens,



Welcome to CWE! I'm sorry to hear that you daughter is having seizures, I'm wondering if she's having myoclonic seizures which are seizures a person has when the first wake up or when they go to sleep. I was having this type of seizure until my Dr. put me on vimpat and then that type of seizure stopped. It's up to you but you may want to ask for the Dr. to do a sleep study on your child along with an e.e.g. at the same time, this will show if she is having seizures in her sleep. I had them 1-2 hrs. before I would wake up but I didn't even realize I had the seizures other than feeling more sleepy than usual.

Whatever you do keep track of your daughters seizures get a calendar and write down what time the seizure happened along with the type of seizure she had by doing this the Dr. may be able to see a pattern in the seizures as to what time of day/night they happen and what days of the month. Also take note if there's a low pressure in the weather because that can trigger seizures for some people. I wish you and your daughter the best of luck and May God Bless You and your family.



Sue

Thanks Sue. The information you provided is really useful. She started with gtc which were controlled by phinobarb to some extent . Because after about a month of starting medication she is now having tonic followed by myclonic jerks. This month she is also having occasional gtc. Yesterday she had one tonic and myclonic jerks in doctor’s office. To which he said it’s spasm and it could be different type of epilepsy. He wants to do 48 hour eeg to understand better and choose medicine accordingly. So I can request him to do sleep study as well along with eeg. Thanks for pointing this out because we observed her sleep was not normal she would be uncomfortable mist of the nights and daytime naps as well. but did not know a sleep study can also be done. Can you point more in this direction please so that I have enough knowledge before I talk to her doctor about it



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[Ateens]

Hi Ateens, welcome to CWE.

Unfortunately, treating seizures can sometimes involve a lot of trial and error to find a med that will be the right fit. If the keppra isn't working (and it sounds like it isn't) don't be shy about asking her docs to try something else. And it might not hurt to get a second opinion from another, pediatric epileptologist.

The vaccine may well have been a trigger for the seizures, but not the underlying primary cause. Given the timing of her seizure onset there may be a genetic component. Has your daughter had her DNA tested? Sometimes the results can point to a specific epilepsy syndrome and/or treatment.

Finally, I realize how painful it must be to witness your daughter's seizures. It may be a small comfort to know that she doesn't experience any pain during a gtc. The one blessing of them is that we aren't "there" while the seizure is occurring.

:hugs:

Hi Nakamova,

Thanks fir your reply. I agree with you totally. No dna test not done yet. I wanted to explore “genetic factor “ angle more but I don’t have enough knowledge to move ahead in this direction. And her doctors do not discuss freely and openly with us. Feels like they at their own pace which is pretty slow for our expectation. Till now (2 months)they were taking it as benign infantile epilepsy. We are waiting for mri and 24hr eeg. If there is still no finding then we plan to go back to our home country where there are better options avlb for diagnosis and treatment.


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[Porkette]

Hi Ateens,

It has been proven that in some cases sleep disorders can cause seizures for some people. When I had my sleep study done my neuro did an e.e.g. and e.k.g. all at the same time. You need to ask the neuro to do a sleep study along with these tests also on your child also make sure it's all on camera so the Dr. can study the case better. I had to stay up all night the day before I went into the hospital, I was admitted overnight and the tests were done, the next day my neuro told me what they found in my tests and how she saw seizures happening 1 and 2 hrs. before I woke up. What was weird is I didn't feel like I had any seizures except I felt more tired.
Another thing you can do if you want to is cold water therapy, I was in a medical study a few yrs. ago and the Dr. had me take my temperature 3 times a day at the same time each day or anytime I felt a seizure was going to happen. Then I had to write down the time and what my temp. was. I did this for about 2 wks. and then I was told that any time I felt a seizure coming on to put a cold washcloth on my face and the back of my neck along with keeping track of my temperature. When they got all the paperwork the Drs. doing the medical study found my temperature would always be a couple of degrees higher right before a seizure but when the cold washcloth was put on me it calmed the neurons down in my brain and stopped a few seizures. You may want to try that if you are interested and let the Dr. know what you find. out. I wish you the best of luck and as everyone else has mentioned have your child see an Epileptologist. I've gotten more help and been on the least amount of meds since I started seeing one compared to when I was seeing a neuro. Wishing you and your family the best of luck and May God Bless All of You!

Sue

 

[Ateens]

Hi Ateens,



It has been proven that in some cases sleep disorders can cause seizures for some people. When I had my sleep study done my neuro did an e.e.g. and e.k.g. all at the same time. You need to ask the neuro to do a sleep study along with these tests also on your child also make sure it's all on camera so the Dr. can study the case better. I had to stay up all night the day before I went into the hospital, I was admitted overnight and the tests were done, the next day my neuro told me what they found in my tests and how she saw seizures happening 1 and 2 hrs. before I woke up. What was weird is I didn't feel like I had any seizures except I felt more tired.

Another thing you can do if you want to is cold water therapy, I was in a medical study a few yrs. ago and the Dr. had me take my temperature 3 times a day at the same time each day or anytime I felt a seizure was going to happen. Then I had to write down the time and what my temp. was. I did this for about 2 wks. and then I was told that any time I felt a seizure coming on to put a cold washcloth on my face and the back of my neck along with keeping track of my temperature. When they got all the paperwork the Drs. doing the medical study found my temperature would always be a couple of degrees higher right before a seizure but when the cold washcloth was put on me it calmed the neurons down in my brain and stopped a few seizures. You may want to try that if you are interested and let the Dr. know what you find. out. I wish you the best of luck and as everyone else has mentioned have your child see an Epileptologist. I've gotten more help and been on the least amount of meds since I started seeing one compared to when I was seeing a neuro. Wishing you and your family the best of luck and May God Bless All of You!



Sue

Thanks Sue,

I will talk to the doctor and try to get all theses tests added. This temperature strategy seems to be interesting as we have noticed our daughter’s head (top and back )to be hot most of the times. Her forehead is generally normal to the touch and when I try to capture temp it’s generally 36.5. Recently I was also putting coconut oil on her head as it’s considered cooling with a hope at the back of my mind that it will help her with seizures. Although I can not be sure if it did or not.

One thing I did not make clear before is that 2 months ago when she was started on phinobarb she was uncomfortable coming out of sleep in most of her day time naps so her seizure (although soft ones) frequency was 4-5 or may be more in a day. Now it’s 1-2 few occasions 0 or 3.


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[Andrew]

Vitamin B6

Hi Ateens,

If it hasn't already been mentioned ask your daughter's specialist about vitamin B6.

I have an extremely rare condition known as PNPO Deficiency. This has been confirmed via a genetic test.

My story (early days) can be found here: http://www.coping-with-epilepsy.com/forums/f23/40-years-vitamin-b6-11674/

I was two weeks old when I had my first seizure. My seizures are drug resistant. I've now been prescribed vitamin B6 for just over 47 years.

Some additional information regarding vitamins and seizures can be found here:

http://onlinelibrary.wiley.com/doi/10.1111/dmcn.12346/pdf

http://www.schn.health.nsw.gov.au/_policies/pdf/2016-9019.pdf

"Vitamin-Responsive Epileptic Encephalopathies in Children"

https://www.hindawi.com/journals/ert/2013/510529/

"Neonatal Vitamin-responsive Epileptic Encephalopathies"

http://cgmj.cgu.edu.tw/3301/330101.pdf

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT

 

[Ateens]

Hi Ateens and welcome to CWE,

I, too, encourage you to seek the input of a pediatric epileptologist, preferably one that is based out of a children's hospital so if needed you will have access to other specialists should your daughter require this. As Nakamova mentioned, often epilepsy present from such a young age can have a genetic factor involved such as inheritance of epilepsy itself, a metabolic syndrome or mitochondrial disease. With regards to the latter two, the earlier the diagnosis and resultant intervention/treatment the better therefore I encourage you to ask for a referral to a geneticist if the pediatrician and/or pediatric epileptologist suspect anything syndrome related might be going on.

Thanks Masterjen for the advice. My daughters dr is a paediatric neurologist with eeg and epilepsy as area of interest. He is a specialist at the private wing of one of countries leading govt medical college and a professor as well. I am sure he must have understood by now what’s going on with my daughters case. But the problem is he won’t discuss it openly with us. I understand treatment takes time for such problems and diagnosis is always not possible but still I feel enough is not being done and also not efficiently for problem identification and instead standard procedure is being followed to keep her in AED for two years and then see.

 

[Ateens]

Hi Ateens,



If it hasn't already been mentioned ask your daughter's specialist about vitamin B6.



I have an extremely rare condition known as PNPO Deficiency. This has been confirmed via a genetic test.







I was two weeks old when I had my first seizure. My seizures are drug resistant. I've now been prescribed vitamin B6 for just over 47 years.







B]**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT[/B]

Thanks Andrew for sharing your story. Like your case I am very hopeful that someday soon my daughter will also be seizure free.
Yes she was given increasing dose of vitamin b6 for 3 weeks with no results. Pyridoxal 5-phosphate 25 mg once a day for one week. Then 25 mg twice a day for second week and then 25 mg three times a day for third week. From 17 till 30 jan she was on 4 medicines still seizing everyday. Phinobarb 20 mg twice keppra Pyridoxal 5-phosphate omeprezol. Was it enough vitamin b6 to show significant result or we should try again with increased dose.


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[Nakamova]

I am sure he must have understood by now what’s going on with my daughters case. But the problem is he won’t discuss it openly with us.

That's a pretty big problem! He works for you, not the other way around. I hope you can convince him to be more forthcoming. Part of being a good doctor is being a good communicator.

 

[Ateens]

Hi Ateens,



It has been proven that in some cases sleep disorders can cause seizures for some people. When I had my sleep study done my neuro did an e.e.g. and e.k.g. all at the same time. You need to ask the neuro to do a sleep study along with these tests also on your child also make sure it's all on camera so the Dr. can study the case better. I had to stay up all night the day before I went into the hospital, I was admitted overnight and the tests were done, the next day my neuro told me what they found in my tests and how she saw seizures happening 1 and 2 hrs. before I woke up. What was weird is I didn't feel like I had any seizures except I felt more tired.

Another thing you can do if you want to is cold water therapy, I was in a medical study a few yrs. ago and the Dr. had me take my temperature 3 times a day at the same time each day or anytime I felt a seizure was going to happen. Then I had to write down the time and what my temp. was. I did this for about 2 wks. and then I was told that any time I felt a seizure coming on to put a cold washcloth on my face and the back of my neck along with keeping track of my temperature. When they got all the paperwork the Drs. doing the medical study found my temperature would always be a couple of degrees higher right before a seizure but when the cold washcloth was put on me it calmed the neurons down in my brain and stopped a few seizures. You may want to try that if you are interested and let the Dr. know what you find. out. I wish you the best of luck and as everyone else has mentioned have your child see an Epileptologist. I've gotten more help and been on the least amount of meds since I started seeing one compared to when I was seeing a neuro. Wishing you and your family the best of luck and May God Bless All of You!



Sue

Hi Sue,

You mean eeg, ekg and sleep study all at the same time possible if hospital has the facility and doctor refers for.


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