News from the doc

[stacey]

Hi everyone

I went to see the neuro today and brought up about the blood tests with tegretol and he gave me the paperwork to get one done for xavier.

However, he also elaborated. Now first up I'd like to apologise for any offense taken by this but I also want to enlighten people to what the doc thinks.

Now what he said is that the only reason why so many people get blood tests with meds is because in America the doctors are so scared of litigation that they do tests every two weeks and he more or less implied that it has been proven to be a waste of time. He mentioned a couple of reasons to check blood and one of them was to keep a check on medicine levels.

So he also told me about a med known for tuberose sclerosis complex called saverol or something like it but he had informed me that the side effects can be permanent vision loss. I expressed my dislike for such a medicine and he said it was the last resort.

Xavier has had a dosage increase of tiagabine to 2 tabs a night to stop the nocturnal seizures but I'm a little concerned that he had a big fit which for the moment is 1 1/2 mins to 2 mins long. The other thing that has only happened since the increase is stuttering. Xavier has NEVER had trouble with speaking clearly before and now he struggles with words like train and Gemma.


The doc said to give it until he has had his blood test and then if things aren't getting better to get in contact with him. That gives xavier until next week.

Thanks for reading.

 

[Nakamova]

Hi Stacey --

Sounds like you're keeping an eye on things. I hope things improve for Xavier with the medication.

As far as blood tests go -- I think most neurologists like to test once a year, no more often than that. But it probably varies quite a bit, and with children, whose metabolisms can change dramatically, it might make sense to test more often.

 

[Fedup]

stacey

Did he tell you about the damage these different medications can do to say your liver. I do not know about America but in Ireland litigation really is not a problem and even if you tried you would lose and that includes being 110% in the right, so I do not agree with him about the blood tests.

I think Nakamova said it best about children, whose metabolisms can change dramatically, it might make sense to test more often.

Sorry stacey, its just what I think

 

[Cint]

Now what he said is that the only reason why so many people get blood tests with meds is because in America the doctors are so scared of litigation that they do tests every two weeks and he more or less implied that it has been proven to be a waste of time. He mentioned a couple of reasons to check blood and one of them was to keep a check on medicine levels.

I had my blood tests done every three months when I was taking Tegretol, Dilantin, Felbatol. When I took Trileptol, I had a blood test done every so often because Trileptol effected my sodium level and I eventually had to stop taking the drug. But now I'm taking Keppra and Topomax and haven't had any blood work done for a long time. And sometimes, the medications can become toxic so the levels do need to be checked. Here is more info:

http://www.epilepsy.com/EPILEPSY/MEDICINE_BLOODTESTING

What do the blood tests measure?

These tests include measurements of electrolyte levels (chemicals in the blood such as sodium and potassium), liver and kidney function tests, blood-cell counts, and monitoring of antiepileptic drug levels.

Once a person begins taking medication, how often does he or she require blood tests?

The frequency of testing varies considerably from doctor to doctor and even country to country. In the United States, blood tests are often done routinely several weeks or months after a new drug is started. The timing of later tests depends on the patient's medical history, the drug and, most importantly, the doctor's opinion on the necessity for testing.

What does the therapeutic range of blood levels refer to?

The so-called therapeutic range of blood levels for antiepileptic drugs is the range of levels at which most patients have good seizure control and few or no adverse effects. The lower and upper limits of this range can vary between different laboratories and doctors.

 

[stacey]

Hi

Thanks for the info guys I'm going to wait and see what happens after this blood test and how he is affected.

Maybe I have been right this whole time with regards to the tegretol not working I have believed for a while that it has been like that buy I also had to deal with the jeopardy and the effects on xavier.

I hope you are all well

 

[stacey]

The tegretol I was talking about,sorry my autocorrect !!

 

[donnajane]

Thanks for the info Stacey. I am not sure if the Tegretol is working for my little man either. I think it is helping but he still has trouble with balance after waking most days, including afternoon naps. His Nureo's call it a siezure fog as he thinks he is having events while he sleeps. Not 100% sure on that but do know that he is very active overnight and every night we hear these strange cries and his arms will spasm just briefly and he stretches a lot. It happens every night and lots of times. We are seeing his Paed on Thurs and I am going to ask her advice. He is not booked in to see his Nureologist until Feb next year after his next MRI to check what is happening with the lesion in his brain but if Paed thinks we should will email Nuro and see what he thinks if we need to come and see him.
I just can't wait till our little man is older so he can tell us what is happening with him.
Thanks again for the info.
Donna

 

[stacey]

Hi

Yeah I found that the keppra, tegretol cr , epilim and topamax all weren't very good at all for xavier, that's not to say that they wouldn't work for someone else but unfortunately not for my little man. He had two t/c s today and 6 absence that were noticed today. I am very concerned and unhappy for xavier and I'm thinking this may either be from a dose decrease of keppra or a dose increase of tiagabine.

The poor thing gets so knocked by the t/c's that he almost loses all leg strength and falls. His seizures haven't been this bad for a while. I think nagging the neuro might be in order.

Hugs all

 

[donnajane]

Sorry to hear he had such a bad day. Hope tomorrow is better.
Hugs.

 

[donnajane]

Stacey which state are you from. I am in Vic.

 

[stacey]

Hi Donna Jane

I'm from Perth.I haven't been to vic.are you in contact with the epilepsy association? I have a contact in Perth but I'm not sure what's over east.

 

[donnajane]

I am in Vic. No haven't contacted Epilepsy asociation. This might sound silly but as no one can say for sure he has Epilepsy I am just keeping searching through boards like this. I know sounds stupid when I write it down. I know I really should liook into it. I keep saying I will put it off until he's had his next MRI in Jan so we will know if his lesian has grown/changed but thats not really a good reason.
Has the contact you have made been good?

 

[stacey]

Hi Donna Jane

The contact I have made is awesome he is the kind of person who does everything he can to help others.

I find that being well informed is the best way because then you know some info and you don't get as afraid of signs if you know what they mean.

I hope you have been well

 

[KarenB]

Lots of reasons to do blood testing with children:

1) To see if meds are at therapeutic levels (altho some epileptologists don't worry about this as long as the drug is working. but in kids, you sometimes run risk of getting into toxic levels, even when the dose seems ok).

2) Liver enzymes -- esp. important with drugs like Depakote (Valproic Acid) that can ruin liver. When Jon was on Depakote, he had a metabolic profile done every couple months (and yes, the enzymes went right on up to dangerous levels, so had to get weaned off after 6 months)

3) Electrolytes -- drugs like Topamax and Zonegran can cause acidosis, so electrolyte check necessary. Some nutritionists who work with the Ketogenic diet will have a child's electrolytes checked every WEEK if they start on Topamax or Zonegran -- until the child has been on the med for awhile. Usually have to work with some buffering like Potassium Cytrate or baking soda.

4) Our doctor checks blood levels about once a year for things like calcium, vitamin levels, and all that sort of thing. That may be because Jon is also on the Ketogenic diet, but I think that AEDs can deplete calcium and certain vitamins.

5) CBC -- a number of AEDs can cause issues with blood platelets and other disorders of that nature. Jon usually has a CBC about every 2 or 3 months

 

[stacey]

Hi

Thanks karenb that was very informative, he had his blood test on friday and the results are being sent to his neuro and his paed so hopefully that will help.

I will keep pushing for the blood tests just because I'd rather be told its a waste of time then miss a problem.

I hope you are well