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

[KarenB]

Oh, Fait, so sorry to hear about your baby girl.

You need to get the best medical care as quickly as possible, as these are severe seizures your daughter is having. We were in Asia when our son started having seizures, and finally got on a plane and took him to Bangkok where there's an excellent international hospital. Now we live in Bangkok.

She needs to be on a medication all the time for the seizures, not just when she's having them.

And yes, babies can start the Ketogenic diet. In Dubai, it's my understanding that the City Hospital (Dubai Healthcare City) will administer the Ketogenic diet for children with seizures, but it's done through their Dietetics department, not the neurology (that's how they do it here in Bangkok too). If you're in Dubai, their number is (971) 4 435 9999 and email is info@thecityhospital.com

Hope this helps, and my prayers are with your little baby.

 

[KarenB]

Also, even better, but a little more travel for you is the Tawan Hospital - Johns Hopkins in Al Ain.

 

[KarenB]

Also, one more thing, some children with a low seizure threshhold are sensitive to cold and heat. That's why they get seizures when they get fevers, but also some children (esp. those with Dravet, but also our son, who I don't think has Dravet) will have seizures triggered if the room is too cold, or if there is a cold wind, or if they take a bath or go swimming -- it seems like temperature change causes this.

It seems like your baby girl is affected by both the cold AC and also having a fever.

For this reason, we keep the room where our son is no cooler than 25 C. And we're careful when he takes a bath that the water is warm but not hot -- body temperature. And we try to only take him outside the house in the morning or evening, when the temperature is cooler.

 

[Fait]

@donnajane: Thank you for sharing. If there were some abnormalities found on your son's eeg, I don't think he can make up these interesting things, right? Hope you can find better answers for it and hope our kids overcomes it.

@um-adam: I have researched about infant CPR and basing from what I read and on the videos, I think I can manage this if really needed. I just don't know when if I can give it when it is happening to my daughter already. I have studied nursing so I have a keen knowledge but I know things change if your patient is your daughter. Good suggestion writing down the questions, because my wife and I tend to forget things too if I am already asking questions with the ped neur. Does your family have history of epilepsy? I am sorry to hear that 2 of your child has them. I am sure they can both overcome it and live well.

@KarenB: Hi, thank you for taking time posting here. Have you been to Dubai as well? Right now, we are visiting the ped neuro in Latifa general hospital (former al wasl) and they are the one specializing for children and pregnant women and I believe they are under dubai healthcare too. I will try to contact the number you gave me and inquire about the Ketogenic diet for my daughter. Hope she is already capable of taking it.

About the room temperature, 25C here in Dubai is very hot already inside the room. So, we always put it at 22-23C always. My wife and I are thinking of that too that too, if the room is too warm, it causes her eye to twitch more often and that goes the same when AC temp is a bit cold. I feel you, everytime we bath our daughter, I always pray that she won't have her seizures.

 

[Fait]

After my daughter's last attack (Aug 11) - She's been doing well, no eye twitches and sudden jerks not until yesterday only but very minimal only. I am not sure if this is because that there were still medications running to her system right now.

Currently, these are the meds she is taking
Klavox (antibiotic for her pneumonia) - 5ml BID
Pheno (gradually decreasing per ml every 5 days) - 4ml BID
Depakine - 75mg in the AM, 100mg in the evening

Hope depakine is the right drug already.

 

[cazzy]

hi fait...my daughters seizias were very much like your daughters,i first notice them when she was 6weeks scared life out of me...each time i took her to hospital she be ok..she was 5yrs when dr's diagnosed it as all the test kept coming back normal...
in the end she went to a place called national young person eplepsy(st piers)which is part of great ormond street hospital and incidently many children from dubia are treated there...she spent 3 days monitored,and they saw the spikes..treatment started and everything controlled now...

 

[KarenB]

Depakene is good for controlling seizures, but can cause liver issues, esp. in very young children, so make sure your doctor orders a metabolic profile (this is a blood test that includes liver enzymes) every 2 or 3 months.

 

[Fait]

@cazzy: That's good to hear that st piers was able to control and manage your daughter's condition. I wish we can visit that place as well. Btw, is this in the US?

 

[Fait]

@KarenB: Hi, thank for suggesting that. I will consult our pedia right away about metabolic test. Hope these meds doesn't affect my daughter's liver. That will be a different problem.

 

[cazzy]

it international place fait...if you check out there web site it may help you on what sort of things that should be done and how children should be treated...it times like these i grateful i live under the n.h.s...

 

[jimj]

Depakene is good for controlling seizures, but can cause liver issues, esp. in very young children, so make sure your doctor orders a metabolic profile (this is a blood test that includes liver enzymes) every 2 or 3 months.

Good advice. We tested regularly initially, but we now don't routinely test. Carnitine (aka L-Carnitine or Carnitor or Levocarnitine) is also commonly prescribed to help protect the liver when you're using Depakene. My daughter takes 500 mg/day (2.5 ml BID) of Carnitine. Another thing to ask your neuro about.

 

[Fait]

@jimj: Thanks. We have a scheduled appointment this coming Tuesday. Will be asking the ped neur about those.

BTW, even under depakene, do your kids still have jerking problems?

 

[jimj]

Rescue protocol

Another thing we have that has been very helpful for my daughter is a "rescue protocol letter" written by my neurologist. It's a numbered list of how to stop my daughter's seizure. Step 1 we perform at home, if that doesn't stop it then steps 2-5 are followed by the ER department. Very useful, especially when we're traveling and have to go to a new ER. That way the ER doc doesn't even have to think, he just follows the steps in the letter. I've found most ER docs are not seizure experts and are happy to pass the responsibility for stopping her seizure to the letter/neurologist. Basically our letter says:
1. Give midazolam at home
2. ER can give more midazolam (IV or intramuscularly if IV can't be started quickly)
3. Additional doses of more benzodazepines
4. Depacon (IV form of valproic acid)
5. fosphenytoin

The real letter includes more details, like amount of each drug to give. I also have the number to my daughter's neurologist department, so they're on call neuro can help if the local ER doc is having trouble and needs advice.

 

[jimj]

@jimj: Thanks. We have a scheduled appointment this coming Tuesday. Will be asking the ped neur about those.

BTW, even under depakene, do your kids still have jerking problems?

My daughter has had twitches while sleeping, but they never showed up on an EEG as seizures. We basically never treated those and they've pretty much gone away on their own. If you are having myoclonic seizures (jerks) then I know Ethosuximide (Zarontin) and high-dose piracetam (Nootropyl) are both reported to be good treatments. I haven't have any personal experience with either of them. I know families that have eliminated myoclonic seizures with the Ketogenic Diet as well. I'm probably the biggest proponent of the Ketogenic Diet that's never used it.

 

[Fait]

Another thing we have that has been very helpful for my daughter is a "rescue protocol letter" written by my neurologist. It's a numbered list of how to stop my daughter's seizure. Step 1 we perform at home, if that doesn't stop it then steps 2-5 are followed by the ER department. Very useful, especially when we're traveling and have to go to a new ER. That way the ER doc doesn't even have to think, he just follows the steps in the letter. I've found most ER docs are not seizure experts and are happy to pass the responsibility for stopping her seizure to the letter/neurologist. Basically our letter says:
1. Give midazolam at home
2. ER can give more midazolam (IV or intramuscularly if IV can't be started quickly)
3. Additional doses of more benzodazepines
4. Depacon (IV form of valproic acid)
5. fosphenytoin

The real letter includes more details, like amount of each drug to give. I also have the number to my daughter's neurologist department, so they're on call neuro can help if the local ER doc is having trouble and needs advice.

Amazing suggestion. I will ask our doctor to write one for us too for emergency purposes. This will be a great help for the new ER staffs who will look at my daughter in case of emergency.

 

[Fait]

My daughter has had twitches while sleeping, but they never showed up on an EEG as seizures. We basically never treated those and they've pretty much gone away on their own. If you are having myoclonic seizures (jerks) then I know Ethosuximide (Zarontin) and high-dose piracetam (Nootropyl) are both reported to be good treatments. I haven't have any personal experience with either of them. I know families that have eliminated myoclonic seizures with the Ketogenic Diet as well. I'm probably the biggest proponent of the Ketogenic Diet that's never used it.

@jimj: I have been reading a lot about that diet. I will surely ask the doctor for it. I just hope there's a formula milk or anything that my daughter can take for it. Coz right now, the only food my daughter is taking is cerelac and her daily milk. I don't know how can they introduce the ketogenic diet.

 

[jimj]

@jimj: I have been reading a lot about that diet. I will surely ask the doctor for it. I just hope there's a formula milk or anything that my daughter can take for it. Coz right now, the only food my daughter is taking is cerelac and her daily milk. I don't know how can they introduce the ketogenic diet.

I can't post links, but searching for "ketogenic diet formula" finds an epilepsy.com page that states "Using a formula-only ketogenic diet for infants and gastrostomy-tube fed children may lead to better compliance and possibly even improved efficacy." So it sounds like infant keto formula is available (in the US anyway). It may also be expensive, I know ketocal isn't cheap.

 

[KarenB]

I'm almost sure there is a formula -- it may be Ketocal.

You can order Ketocal online, but you have to first have a nutritionist certified in Ketogenic diet fax in a letter to to the company.

I think the best place to initiate the Ketogenic diet is the Tawan Hospital in Al Ain, because they are part of Johns Hopkins -- which is considered most expert in the diet, and also help you order the formula you would need for your baby. It's a little bit of travel - but I think worth it.

To start the diet, your baby would stay in the hospital about 3 days, so they can monitor everything as she goes into ketosis, and they will also train the parents (and nannies) in what to do at home.

If you want more info on the diet, there are two good websites -- the Charlie Foundation and Matthew's Friends. This has a lot of information that would be helpful to you and also parents forums. The Charlie Foundation forum has a nutritionist from Johns Hopkins, I think, that has 18 years of experience in the diet - she can answer some of the questions you might have.

 

[Fait]

I already spoke to my daughter's doctor about ketogenic diet. We were told that this diet will be the last approach if ever. She saw my daughter's jerkings and eye twitching and we were told that those are not acceptable especially throughout the day.

For now, the medical approach given to my daughter was to increase the depakine from 75mg to 100mg in the AM and PM for 4 days then increase to 125mg afterwards. If this approach doesn't remove the jerkings, the dr told us that he might add another medications and needs to undergo metabolic tests, etc..

Hope these tests will gives us answer. If not, I might be forced to bring back home our daughter to Philippines, doctors there might have a better chance finding the problem than here in UAE.

 

[KarenB]

Did she say WHY the Ketogenic Diet would be the last approach??

Too many doctors wait until a child has gone through 3 or 4 or 5 medications before even thinking about initiating the diet. In the meantime, some of these children suffer brain damage (which happened to our son), and developmental delay, along with the horrible side effects of the medications.

Johns Hopkins Hospital has moved the Ketogenic Diet to frontline treatment for Infantile Spasms -- their study on this is in the September, 2008, issue of Epilepsia.