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Help,,,need advice
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xavierjadenmom posted:
My 7 yr old just had his 3rd seizure for the 3rd night straight, after having gone 2 months without one.,, ,,,that had not happened since he started having seizures a year ago. I have no idea why he are having them so frequently. I've been keeping a journal and I've noticed a patterned, he tends to go at least 2 to 2 1/2 months without one and then BAM!! there they go again,, but he would have one and then maybe another the next week,, not 3 in a row. Each time he has a med increase because he started off on a extremely low dose ,, now up to 600 mg of Carbatrol a day.

I would really like some advice on what my next step should be,,, EP is so confusing just when you get back to a sense of normalcy seizures come and slap you back down again.
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Bruce78640 responded:
One of the things I found out a few years ago, while attending a seizure and epilepsy education program, is that as a child becomes older, their body size and body mass is going to increase, which might mean the dosage amount of medication may need to be increased, as well, in order to maintain seizure control. Plus, the medication is more likely to go through a child's body more quickly, which can be the reason why a child is prescribed to take a higher dosage amount of medication, and or take the medication more frequently per day. Instead of a child taking their medication only once a day or twice a day, the doctor may prescribe the child to take their medication 3 or more times per day.

Has the doctor explained anything to you about the Ketogenic Diet ? If they have, or if they have not, here's a link to a section on one website, which has a collection of links to several other sites for more information about the 'Ketogenic Diet'.

communityforum.epilepsysupportgroup.com/index.php?topic=10.msg152#msg152
 
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xavierjadenmom responded:
Thanks Bruce, that is what the neuro said ,, that he is growing rapidly so his dosage needs to be continually adjusted. I did forget to mention to him that I started given him Allegra for his allergies,, I'm not sure if that have anything to do with the seizure threshold but I asked his Pedi and a Pharmacist before giving it to him and they both told me that it wouldn't interact with his Carbatrol.

I myself asked him about the Ketogenic diet and also about eliminating some of the gluten in his diet and see if any of it would help, he said that the Ketogenic Diet have be known to be successful for some kids with really hard to control seizures and have exushted all meds and even had a few surgeries and are still having seizures,, and then said that my son wouldn't be a good candidate for such a strict diet because his seizures are so infrequent and far inbetween usually afew every couple of months, so the dosage changes are the way to go.

Bruce if you or anyone else think that my neuro is on a good path with my son let me know or should I be pressing the issue of diet anymore. I have notice that he is trying to treat him with one med instead of lots of add on's since he have no side effects he said he may not have reached a theraputic range for him.
 
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dancer86442 responded:
Hello Mom,

I think your DR has it RITE. The ketogenic diet is recommended for children w/ uncontrolled diets. If you have done any "homework" on this diet, then you know it has it's drawbacks & may not be the solution for your son. WebMD has a great article & it's only 2 yrs old. Use WebMD search or the link posted by Bruce in "weblinks" to refresh your memory. I think it's great that the DR is sticking to a mono-therapy regimen. I say "Stay on the med merrygoround." Therapeutic range mite be reached next dose. Ya won't know till ya try it. I do hope if another increase is necessary that your son will respond & have no more seizures. HUGS!

God Bless

Love Candi & family
 
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JoAustralia responded:
Hi,

Just a quick one before I go to work.

Have you insisted on blood work to determine to blood levels of the meds in your son?

Have a great day!! it's 530am in Oz.
 
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xavierjadenmom responded:
Hi Jo,, well I am wondering if should also be pushing to have another blood test done too just to ease my mind. He has had two done,, last one being 6mnths ago and the level of med in his system was low like a 6, the Neuro said when I asked him this time if we should have a blood test done again, that one isn't needed because at the time of the last increase he was still very low,, and that his range before thinking of changing his meds or where he probably couldn't tolerate any more would be between a range of 10 to 12 so there's shouldn't be any concerns of this increase affecting him,, especially since he have been on it for a year without side effects and the last two blood test being normal.

Now of course I am still going to monitor my son closely starting tomorrow when I do the increase from 600 a day to 800 just to see if he start a rash,, or fever,,, ticks ,, etc. But do you think I should have insisted on a blood test??? that is a question I had be toiling with for a few day's now.
 
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JoAustralia responded:
I would leave a blood test for 6 weeks now after the increase in meds to 800mg.

If the neuro doesn't agree to it ask your PCP. Either one of them should write a referral for the blood test with a request from you over the phone. If they do not then make an appointment and DEMAND a referral for a blood test.

I am an advocate for making demands of General Practitioners and Specialists after my son nearly died in 2004 prior to having brain surgery. I had taken him to the GP (PCP) twice in 2 weeks as he was suffering vomiting, very bad headache and continuous sleeping. The GP said it is virus. In the 3rd week I took him back again and demanded a referral for a brain scan. She said she would give me a referral to a paediatrician. I argued that it would take weeks to get in and that the first thing he would do, given my history, is a brain scan. I said I was not leaving her office without a brain scan referral. She relented and gave me one. I made the appt straight away. Luckily they had a cancellation within the hour so we went straight to the hospital. After the scan, Jonathan could not keep his eyes open and was put in a bed. A Dr came out and said he had found something and was waiting for the paediatiation to come over from the next hospital to look at the scans (the same one we would have been referred to!). Naturally I was devastated and went out to start making phone calls to his Dad, my work and parents. When the Dr arrived he showed us the scans and said Jonathan's brain is full of brain fluid due to a blockage and he thought it might be a Pineal tumor. I told him that it's a Cavernoma - I just knew, you know. I'm in tears, then he starts saying Jonathan has to go to Melbourne and I cry even harder, I mean der! they cant do brain surgery in our little town!! Then he says he has to go straight away as he is nearly in a coma and they have already called the air ambulance!!! OMG!!! A mother's worst nightmare... Anyway Jonathan and I were flown to Royal Childrens Hospital and his brain was drained of the fluid that day then two days later another operation to put a hole in his third ventricle to allow his brain fluid to drain that way (they could not reach the blockage as it was too deep). The blockage was a cavermona which had bleed.

Anyhow this is a far cry from your son's situation, I was just letting you know why I am extremely firm about what I expect from the medical professionals who are treating me AND whom I am paying to do so.

Oh by the way, the GP I had taken my son to rang me in Melbourne to apologise and said she had learned a lot from me and will listen to parents intuition more closely in the future. Obviously she had some feedback from where we had the scan.

Keep In Touch!! Better go eat some tea now.
 
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dancer86442 responded:
Hi Mom,

I agree w/ Jo. Give his new dose time to build up in his system. If, your DR is doing blood every 6 mths after that then everything should be A-OK. When you do get his blood levels, please, note that in his journal. I know it's in his charts. But, it won't hurt to have it in the journal. The journal will be easy to find (hospital "lost" my daughter's records for 4 yrs) & (hopefully) used, seen & read YRS from now.

I agree w/ Jo about DEMANDING tests, also. Follow your "gut instinct." If ya think/know something ain't rite w/ you or your child, push for whatever YOU think needs to be done. You are the BEST advocate. Keep on learning.

God Bless

Love Candi & family
 
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supergrangran replied to JoAustralia's response:
Are you the Jo from Australia with Cavernomas? Candi said to try and contact you if i have the right person,

Christine
 
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dancer86442 replied to supergrangran's response:
Christine, I guess I didn't word my reply rite. Jo Quit our group. I just thought you mite be interested in reading some of her Posts/Info. I will contact her & ask if it's OK to give you her email addy. Or you can post your addy in your Profile (If you haven't done your Profile yet, please do. ) & I will pass it along to her. OK? She is, also, a member of Facebook. So, you mite be able to message her.

Love Candi


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