Piper has been on the diet for 17 days and we have not seen any significant progress. We have been praying that this diet would start working because she is now averaging 200-300 seizures a day. This is affecting her mood, development and personality even more than before. We are truly at a place where we feel hopeless.
This weekend we went out of town for Justin's boss's 40th birthday. We had a good time but it was extremely stressful because piper basically cried and screamed for hours at a time the whole weekend. We had to call the neurologist and he told us to measure her blood sugar. We had to stop at cvs on the way home from sc to buy a monitor and prick her to check her levels. She was borderline low blood sugar but by the time we got home she had low blood sugar. The doctor said all we can do is give her one ounce of pedialite. The problem is pedialite has dextrose which is a big no- no for the diet because it can make her body come out of ketosis which may cause an increase in seizures.We just have to deal with hours of screaming she does most of the day. We are going to Emory tomorrow so they can do more testing.
The past two weeks have been really rough for us. I was approached by someone I don't know who had heard our story. They were trying to be nice by telling me they were proud of me for not having an abortion because most people who find out their child is "retarded" would not keep the baby. Let me just say my response wasn't very nice. For the first time I was bombarded by the inevitable, ignorance. I tried to explain more about the situation but it was pointless. We know Piper is different and will have challenges but I just wasn't ready to hear such hurtful words. Unfortunately, this is only the beginning of hearing rude things that will be said about her throughout her life.
Our pediatrician referred us to a case worker in the early intervention program because of how much she has regressed developmentally. They are coming by on Friday to do an evaluation and form a plan for her. The problem is if the seizures continue she will be unable to learn new things. Right now she is so tired that she only has play time for a few minutes a day.
We spend most of our time at home. I was trying to get out and take her places but she is so unhappy and having so many seizures that the stress is just not worth it. As you can probably tell we are at the end of our rope. The bitterness and anger is setting in and I have tried for 2 months to resist these feelings. Things are just not getting better. Justin and I have trouble getting excited or hopeful about anything. This is such a hard situation and gets harder every day.