Baby with status epilepticus

[DanaC]

A Happy New Year to all of you! I wish you lots of health for this year.

I didn't have any more news and was so busy, I can's seem to even start any of the books I ordered.

Ana is ok, at least wrt seizures, she did take twice antibiotics in the last 5 weeks. The last appointment with the neurologist brought nothing new except the news that her level of Depakine in blood is still below the lower limit, even if her dose is now almost tripled. I don't know what to think about it, I'm anyhow affraid she's taking this medicine for no protection...

We're doing even more changes with our diet and we did reduce our diary intake (which was huge) and limit to just a bit of products based on goat/sheep milk. There's still the creche where they eat the same cheese spread and other unhealthy and certainly not organic type of food. We start with some vitamin supliments as well. As for the homeophatic treatment, we're still in doubt and keep the medicines in their boxes...

We talked about Silvia Toth Centrum (thank you, Dutch mom for telling us about it, I had a post about it, but now I see it's not here, I probably did someting wrong), he said he doesn't believe it's for us, we wait and see for the next appointment which is in 3 month and if we still want then he will give us a reference. We went with a huge list of questions, actually my husband because me, as informed as I go there, the moment I want to start talking, I do more crying than words... He was not happy about what he considers lack of trust, but he said it's obvious we're very worried, he doesn't have a solution for us, but he'll think and talk it over with the pediatriation which we see on 19th. That's about it... counting days without big problems and hoping with every new information that we're closer to making her, all of us, healthier.

Sometimes I'm affraid i'm doing wrong by hoping too much. All this information, every new bit shows about something that you're doing wrong and you change it and there's hope: I'll find it, I'll find it all and me and my familiy will always be healthy and never get cancer. But what if you do it all, and it still doesn't work? And what is all, because maybe you just can't comprehend all...

Sorry I'm off topic, it's just so unbelievable how wrong we leave and yet to find the right path takes so much time and effort... why and how did it became so hard?

Once again all the best to all of you and your families, to everybody. Have a happy 2009!

 

[Bernard]

I hope 2009 brings you much success with your efforts.

... Ana is ok, at least wrt seizures, ...

:mrt:

... her level of Depakine in blood is still below the lower limit, even if her dose is now almost tripled.

Did the neuro offer any explanation for this? Is it possible there is a problem with metabolism of the drug in the liver? I know that Dilantin needs protein to bind to or it just gets flushed. I wonder if its the same with sodium valproate.

... We're doing even more changes with our diet and we did reduce our diary intake (which was huge) and limit to just a bit of products based on goat/sheep milk. ... We start with some vitamin supliments as well. ...

:mrt:

... We went with a huge list of questions, actually my husband because me, as informed as I go there, the moment I want to start talking, I do more crying than words... He was not happy about what he considers lack of trust, but he said it's obvious we're very worried, he doesn't have a solution for us, but he'll think and talk it over with the pediatriation which we see on 19th.

Some doctors prefer to have patients who don't ask questions or participate in their own best interests. Sometimes it's an ego thing and with others it just laziness (don't want to work that hard). :twocents:

... But what if you do it all, and it still doesn't work?

Better to have tried and failed than to have done nothing at all. You may end up with the same result, but at least you will know that you did all you could.

 

[DanaC]

Thank you, Bernard, that's again something I didn't know. He only says that her liver is metabolizing the medicine quite fast, which only means she has good liver functions :|

And of course the level in brain is the one that counts, and that one cannot be measured. Somehow, I don't know how can it be reassuring that the result says now 37, instead of 31 (when their statistics want 40-200); last time, 2 weeks after the measurement, she had status epilepticus and the level was 20. He hopes this time it's oscilating in a higher range. He doesn't want to increase the dose, since she's considered to be almost under control, with big interval between seizures. I agree, however her seizures should be considered of much importance/ risk, I should say, since each time it happens her life is in danger. I'm not saying I would have want him to increase the dose, I'm simply affraid the medicine it's for nothing and WE can only take care that the trigger doesn't come up again. But what is it, and can we, that's still to find out...

We're still waiting for the results of some metabolic testing, I don't know what they're testing, if there can be something related, when we've asked the pediatrician said he doesn't know, they only send Ana's history and the guys at the lab decide what's needed to be tested, they're the specialists. This time we WILL get a print out of the lab results. I made a note and ask next time; thank you.

 

[DanaC]

Again, just to give some update. We're 10 weeks withot a seizure; I so wish they were 100, I know I shouldn't want to lose this precious time, but I look at the calendar and dream for the day that number will get bigger and bigger...

We had all results to all tests, vitamins levels ok, normal state of the imune system, no indication there's something not in order, and from the metabolic testing they received a note that says that there is no evidence there could be any metabolic disorder that could be linked with seizures (we looked through the files ourselves, they really didn't send any specifics about what they have looked into, only their conclusion). We're now the paranoic parents which don't trust the doctors! We'll see a pediatric specialized in imunology, and that's the last think they can do for us to feel safer!

I only hope the changes we're making will influence in a good way and with a bit of luck she'll be seizures free.

By the way, thanks for the recommendation for the book on excitoxins! I also read the book "Cancer the complete recovery guide"; i know the title might freak out some of you, but I still recommend it to everybody, as a guide to how to leave a healthier life.

 

[Bernard]

... We're 10 weeks withot a seizure; ... We had all results to all tests, vitamins levels ok, normal state of the imune system, no indication there's something not in order, and from the metabolic testing they received a note that says that there is no evidence there could be any metabolic disorder ...

Awesome! :mrt:

 

[LivingFruity]

10 weeks is amazing!!! I'm sure the number will continue to grow :clap: