And lets just say that mine is telling me that the Ketogenic diet is not working! I have had all I can take of this diet, it is being kicked to the curb. We have been giving her little extra of the diet food here and there to see what would happen and you guessed it everything was fine. So this weekend we decided to give her some thin crust pizza, goldfish and some milk. All where fine no bad results yet. She hasnt been in ketosis for about a week! So I would say the diet is probably NOT what is keeping the seizures away. Which we are all pretty sure its the recently added Depakote.
I have not discussed me giving her extras or anything with the Dr..... which I hear some of you gasping but hey I'm tired of playing the waiting game 3 months here 6 months there. I'm tired of watching my baby girl starve, she is constatnly hungry and I have mentioned this quite often to the Dietician and nothing has been done. So lack of communication in that whole area just made me want to quit.
Not sure what the consequences will be if I do it on by own. Is it something that has to be weaned like a med or what? My biggest things is giving her the sweets which I have NOT done yet. I'll be e-mailing the Neuro here in a minute and let him no what I'm doing. But its time for us to take charge for once. Dont get me wrong I love our Neuro I just hate waiting when I know in my heart that it is not working! I mean I did however follow his request and kept raising her Depakote level until it reached 500mg even though she was seizure free on the 1st pill 125mg. Cant a mom have a say so sometime, you know when enough is enough!
I will however have to wait yet another 2 months before we can even think about taking away another med. Uggggghhhhhh.....I just would love to know how much she could really learn if she was just on 1 med for once in her life!!!!
Sorry to vent but gosh I really needed to get that out...Just a mom looking out for her baby girl!
Ok now own to something funny see pic below:
Ok this was so funny to me may not to some others...But this is pure talent right here! A girl who can suck her thumb and yet pick her nose with that very same hand all at the same time! I about fell over when she started doing this this weekend dont know why she started doing it, its funny but I hate that she is doing it. I mean Caleb in his whole 5.5 years of life has never not once picked his nose. So I guess it was just destiny that I would have one lil picker....LOL! I'm sure some of you parents know what I mean!
3 comments:
Karen- glad to hear you took charge. We, as parents need to have a say in what is happening. We live with the kids, we see first hand what is happening. Some neuros are great and really trust the parents and others just don't. I have done the same thing myself. When the neuro kept refusing to talk about weaning Topamax, I finally began the process on my own. Granted he was on a miniscule dose. I did finally fess up and he was okay with what I did, but I still felt like a sneak for doing it on my own.
Hope the neuro listens to you and I too can't wait to hear what Cam can do with less meds in her! You know I have always commented on the number of drugs she was on. Good luck!
Jen
Yup, I agree wholeheartedly! Take charge! And if your neuro won't let you be part of the team, then you need another neuro. As much as you may like him/her, there's just no excuse for not talking to you about the WHYs of everything, and asking you what YOU think should be done! That's what endeared us to our current ped neuro: our first visit, he asked ME what I wanted to do! So I told him, and we did it!
Now, that's not to say that I don't trust his expertise---I DO (very much so), but I DEMAND to know what's going on with Michaela, and WHY we're doing this, that, or ANYTHING! He's never ONCE given me a problem about all my questions, or poo-pooed me, or fluffed me off. That's what a doctor is for. And now, I can actually keep my hands off of some decisions because I trust him so much. That's a great postition to be in when you deal with so many meds, docs, and facets of this condition.
That being said, I would caution you when it comes to weaning. Like Jen, I've done it too, but NOT with a drug that was "volatile", and the diet caaaaan be sometimes. So far, it seems as though she's not having those problems, and that's good. But I would press the doctor more on things like "Why does she have to be on this med sooo long??" If you don't get a satisfactory answer, then I would ask another neuro! Because I know that there are some meds that REALLY have to be titrated down sllloooooowwwly (like Lamictal), or there are some realy nasty side effects. Just keep that in mind.
And like Jen, I have been very worried about the sheer volume of drugs Cam is on. I was really surprised that Vandy docs (14th best in the country according to Parents mag!) would put her on so many, because it's not something the top docs would do with someone like her. The drugs could be hurting her instead of helping! I sure hope she does better the less she's on!
Glad to see Kelly posted..she hasn't been updating her site and I was getting worried.
Anyway, I don't want you to think that Kelly or I know what's best for Cam. We don't, you do. And I know some kids NEED multiple meds. But she is such a little thing and so many drugs. And drugs can hold some kids back. I just want the best for her...just like you.
Jen
P.S. any chance I can get a new pic for my fridge? Just email me a really good one and I will print. THANKS!
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