Update on Diet (sorry, long)

ALF222 · July 2012

Many of you know J has a severe form of epilepsy and we were starting the Ketogenic Diet as a treatment option. It's a high fat, low carb diet that has been shown to help about 50% of kids with seizures.

We started the diet on schedule in a hospital two hours from our house (the only hospital in our HMO that specializes in it). She was predominantly eating formula, but we were adding in some solids like avocado and chicken baby food. Things were going fine and we almost went home Wednesday night. Unfortunately, her blood work from Thursday morning showed that her chemistry was all out of whack and the one medicine that would have solved the problem, she just wouldn?t take. We tried all day and even gave her fluids by IV, but when they drew her blood that evening, her condition had gotten worse. So, we were taken by ambulance to the pediatric ICU (luckily, it is 10 minutes from our house). She was stabilizing there quite well on IV fluids, when she had a giant seizure Saturday afternoon. She had two IVs fail and despite poking at her for hours (which was torture for us and her), they just couldn?t get another one started, so they ended up putting a feeding tube in late Saturday night so we could at least get some fluid in her since she wouldn't eat or drink.

We decided on Monday to discontinue the diet for now. With so many complications and her refusal to take medicine, it just may not be the right time for her. We can try again in a few years, when she will predictably eat and drink. She is on new medication that seems to be controlling her seizures a little better. The next week or two will be telling, as we usually have a few quiet weeks after a big seizure. She was discharged last Thursday and we have all just been recovering at home ? she slept 13 hours straight the first night we were home!

In all of this, I decided that something had to give for me personally and it was pumping. I have a big freezer stash, so I?m hopeful we can make it to her first birthday, but if not, I?m ok with that, too. I'm down to pumping every two days just for comfort and am pretty sure I'll be done done this week. I?m a little sad (especially that I now have to go back to eating healthy), but feel good that she got BM until now.

So, a bit of a bummer but we tried it and now we know that it?s not the right time for the diet. Crossing our fingers her new meds help and we can stay out of hospitals for a while!

Ms5586 · July 2012

((BIGGEST HUGS I CAN GIVE))

Alf, what a tough road you and J are taking. I'm sorry that you had so many setbacks, and that the diet didn't work out like you had hoped. I'm so glad J is home.

I also stopped pumping (though my decision was so much more selfish than yours), I hope you all can rest and relax, and FX that she stays calm for a few weeks!

GVSU-04 · July 2012

I'm sorry the diet isn't working out. I can't imagine going through all that. You are one strong mama and J is one strong baby! I hope the new medicine works. I'll be thinking about you guys.

linzica · July 2012

hugs. I'm praying for you guys.

missbrightside10 · July 2012

Thank you for updating us. I am so incredibly sorry that you are going through this! You are such a strong mom, J is lucky! I wish I had advice but I will continue to keep you in my thoughts and prayers.

T&HLove · July 2012

I'm sorry that it was not the right time for the diet, but glad that you now know that. I'm so happy to hear that the new medicine seems to be having an effect on her. You are amazing to have pumped through all what your family has been through and I don't blame you one bit for being done. You are a much stronger mama than I, because just pumping alone would break my sanity. Beautiful J is in my thoughts often

solsburyhill · July 2012

(((Sweet little J)))

My heart goes out to you for having to endure watching your little girl go through this. I pray for J often and for you too. She is blessed to have you for a Momma. You take such good care of her. I really hope the new meds do their job!

shelley1002 · July 2012

That's a lot. Glad you are all home. Hugs and vibes that the meds work and you stay out of the hospital for a long time.

jen4ny · July 2012

I hope the medication works for your sweet little girl. T&Ps for you and your family. You are an amazing mom for your daughter.

rebecca9725 · July 2012

You are such a strong Mama. I can't even imagine what you have been through. I'm sorry the diet isn't working. I hope that her new meds help. Keeping you guys in my T&Ps!

PrincessPeach13 · July 2012

I've been thinking of you and Julia lately and wondering how she was doing.

I'm so sorry for what she has to go through and how painful this must be for you to see.

I'm sending lots of prayers and healing thoughts to you all!

becasmeca · July 2012

You are an amazing woman! From the deepest part of my mommy heart I bow to you!! Pp said it best, you take such amazing care of your little lady!

It sounds like you are following her physical cues and your intuition which is all you can do! The diet may not have agreed with her system now-- but who knows? Maybe 2-3 years it will respond quickly after her systems have developed a bit more

My family and I will keep you ladies in our prayers! Goodness gracious mama! I hope you both can keep up the 13 hour sleep pattern

Want a personalized experience?

Update on Diet (sorry, long)

Re: Update on Diet (sorry, long)

Choose Another Board

Search Boards