Update on Kara

[Kara's Mama]

I am so glad to have this forum back! Things have been crazy with Kara. She has been sick off and on since July with 2 hospitalizations for IV antibiotics. her seizures are starting to slow back down a little but are still pretty bad at the moment. I have a few questions about the keto diet and kidney stones. I was never aware that it was a possiblity it could cause them. But, Kara has 2 stones now (she only had one before the diet because of Topomax) and we went to the nephrologist today. They said that the diet goes against everyway they treat stones. They are starting her on some anti acid meds (not reflux but blood) and we are needing to give hermore water. I am so afraid of loosing the little but we have gained with the diet. Has anyone had problems like these? What did you do for it? Seizure reduction is worth a lot but is it worth possibly loosing a kidney (yes the dr went there today)? Here are a few new pics of Kara.
Rachel
http://i2.photobucket.com/albums/y49/karabethsmommy/Picture007-1.jpg
Yes...This is Kara's morning hair!!!!
http://i2.photobucket.com/albums/y49/karabethsmommy/Picture009.jpg

[Kara's Mama]

http://i2.photobucket.com/albums/y49/karabethsmommy/Picture069.jpg

[just laurie]

I have no wisdom or experience with that, but it is good to see you back and hopefully someone else will know.

Laurie

[mama sue]

I can't help, but wanted to send some support. (((HUGS)))

[RathyKay]

(((Hugs))) I don't have any keto or kidney stone experience. I hope you don't have to choose between the two.

[Tracy Sheppard]

Rachel,
So good to see you back. I have no advise either, just wanted to say hello and welcome back. Hugs to sweet little Kara.
Love
Tracy

[jenna]

hi, Rachel:

So nice to see Kara smiling. welcome back.

[Carly'sMa]

Is there any way to get the nephrologist and the neurologist to speak to each other? You re being put between a rock and a hard place (or kidney stone) especially if you are getting seizure control from keto. Also, get her pediatrician invovled. The docs need to speak with each other and even send you to a neph. who knows about keto. Poor baby - kidney stones are no fun.

It's good tosee you bacik. I hope she improves quickly. The pics are great, especially the one with her smile.

[Denae]

She is starting to get that "big girl" look about her:rolleyes: happens fast doesn't it.

I am so sorry you are being faced with such a tough decision.I hope her docs are able to find something that will not mess with the little bit of control you have. I have learned that even that little bit can be a delicate balance.


((hugs)) and glad to see ya back!

[big sis]

i am really sorry i cant be of any help, and that not many other people caneither...

if it helps any she is adorable;)

[langansmom]

Love the new pix! She has grown up so fast!!

Langan didn't have kidney stones on the diet but did get severely acidotic. We had to come off of keto because of the severe acidosis. We did have a nephrologist b/c of the acidosis issues, and he worked with our neuro to try to come up with a plan to allow Langan to stay on the diet. We actually tried for months- it just wasn't safe for her to be so acidotic and we were not able to control the acidosis on the diet.

I also think it's a good idea for the docs to consult and come up with a plan. After all, they are all part of Kara's team.

I do remember that kidney stones were a risk on the diet. However, we were told after the first few months that there was no longer a need to restrict fluids with keto. The original thinking was that too much water caused the children to come out of ketosis, but once they started using home blood ketone tests they discovered that the urine tests were just inaccurate b/c of the urine being watered down. The ketone level that is important is the level in the brain. Since you can't test that, the blood is the closest thing. So we had a blood monitor sent home with us and were told that Langan could drink as much water as she wanted. It was important to try to combat the acidosis, and I think it is important to combat stones.

Anyway, don't know if your keto center agrees with that philosophy or even if that's still the philosophy at most keto centers but wanted to throw it out there. We did have to measure fluids for the first few months, until they started using blood ketone measurements. We never saw any increase in seizures when we gave unlimited water. We did get relief from constipation, though, another major problem on the diet.

Hope this helps!

(((hugs)))