Seizure Update

A few days ago V and I took another trip to the St. Louis Children's Hospital/Washington University to meet with her neurologists/epitologist. It had been around six months since our last seizure scare and visit to the doc's but this trip wasn't due to any scare, luckily, this visit was just a check up. In fact,  I had no concerns what so ever. It was nice!

There's not much to say really, which is a great thing to finally be able to say! Vada's last known and proven seizure was around the time she started the ACTH injections, which was around a year and a half ago. Since that time there have been many questionable moments, movements, and behaviors but thus far we(I) have been wrong and her seizures have been controlled. Again, another great thing to be able to say!

What this all means is that this coming August/September of 2012, will be her Vada's two year anniversary of being seizure free! A monumental moment to celebrate! It also means tapering time, something else to celebrate but also something that has a dropped another heavy anchor into the very pit of my stomach-- even my heart is bogged down with overwhelming concerns. I keep telling myself that this too is progress and progress, no matter how difficult to endure, is good.

Currently, Vada is on three medications to help keep her seizures under control. She is on Levetiracetam (Keppra), Valporic Acid and L-Carnitine (to offset ill side effects caused by the Valporic Acid. The first step is to taper or wean her off of the Keppa and both of her doctors agree that it is time. However, they both said that if i'm not ready then we can wait. I used the inallagy of a child not wanting to have a bandage removed because they know that it may hurt, therefore, usually, its done quickly.  I then told Vada's doctors that I will never be fully ready to take this chance (I am just fine being in this comfort zone--thank you very much!), so like the bandage situation we just have to do it. Quickly, however, is not how her weaning will be done. I have been given a schedule that will slowly, over ten weeks, take her off of the Keppra.

After those ten weeks Vada will remain on the other two medications until we return for another check up in or around July 2012. If everything goes well, we will then begin to wean the remaining anti-seizure medications and by Aug./Sept. (her two year anniversary of being seizure free), she could be completely off of all seizure associated medications!

I have to keep telling myself, "one day at a time" and "slow and steady" but things are going beyond well. I pray that they continue to be so. Our lives have settled down considerably and things feel "normal". Its been nice. I don't want to go back to where we've been, I want us to keep moving forward but I guess even if we do have setbacks, that's exactly what we will do anyway..., move forward.

This Is Your Life

Here's the deal. I quit taking the Pristiq already. I started taking it on the 18th and took it on the 19th-23rd. The 23rd being my last day.

Did it not help?
No, it did I was actually feeling a lot better. So much so that I am now scared to start feeling the way I was before I began the medication. Truthfully I don't want to ever feel that way again.

So why did I stop taking it? Because I am confused.

Vada was doing alright with the bottle in the beginning. On the 16th I attempted all "day" to give Vada breast milk in a bottle. I didn't nurse her once and she didn't eat once. I have been told by several..., several people that eventually a baby will get hungry enough and take the bottle. However, this is my baby, and im weak. So, by "bed time" I was nursing her and I nursed her all night. I knew that in the morning I would try again and that this was quite possibly the last time to be close like this with her so I really embraced the nursing and her.

On the 17th (Friday), I began again and the very first bottle she took! I took it as a sign. It was time. I was saddened and relieved because she had done so well and soon I would be feeling well.

On the 18th I took my first pill and she was still doing alright. I was pretty out of it from the medication (which for me is typical for the first three days). Half way through the day we were out of the hand suppressed breast milk and we switched to formula and she stopped taking the bottle.

On the 19th (Sunday), she started to take the bottle with the formula and all seemed well. I was beginning to be more alert, but I was still very tired.

Things over all seemed to be progressing nicely. It was a slow process. There were times that she wouldn't drink at all and others where she would. I was and still am concerned with the amount that she is eating. As of right now she is taking maybe six ounces of formula with in a twenty four hour time period. Justin thinks that she will do better, I think that she is not doing well enough now, as it is.

Anyway, this last Thursday Vada and I went to Peoria to meet once again with the neurologist. Vada unfortunately had to make two trips to the lab that day for blood work. Each time after the draws were done I would pick her up and she would immediately stop crying and start searching. She would pull at my shirt, say "ma-ma" and would rub her head right where she was used to finding her comfort. It broke my heart.

Ever since she has regressed with the bottle and I have stopped taking the medication. I want to nurse her so badly. I want her to eat and be healthy and find the comfort when and where she needs it. I want her to have energy again and to be awake and play more.

But..., I want to feel good too. Not just feel good with her and while I am nursing but over all with everything. I want to be me still. I want the girls to have their mom and my husband to have his wife. The one that jokes and laughs and does really stupid bouncing dances when I get excited (dont ask). I want them to be happy too. I want a clean house and the energy to clean it. I want to find joy in all o the things that I once enjoyed doing. I don't want to be this blob of a person that I am when I am not on the Pristiq.

Now I am right back where I was. Only its almost worse than before. (not the depression part, just the decision making part) Tomorrow is the day that I can start to breast feed again. (I called a pharmacist and found out the half life of the medication.) So the choice is mine. If I start to breast feed her again. If I do start then I will probably ruin any progress that I have made with the bottle, not that we have made much progress anyway and I would be nursing her which would be great. Or, I can continue to bottle feed her and get back on the Pristiq. Either way the time is now to choose because I am going to dry completely and then the option is no longer an option. Justin says that he supports what ever I choose and I believe him, but I know that he wants me back the way that I used to be too. Who could blame him. He deserves to be happy too.

Am I making too big of a deal out of this? Is it that obvious and I am just over thinking things?

There may be other factors to consider in this mess. Vada has been sleeping a lot. It could be because she is not "eating" enough, or it could be her heart, or it could even be the Valporic Acid that she is taking. (VA can effect the liver and make the Pneumonia levels increase, causing sleepiness along with other serious side effects.-We are waiting for the lab results from Thursday to let us know if everything is okay.) She is not "eating" nearly enough, at least I don't think that she is. She hasn't ate solids in over a month now and she's not taking in an comparable amount to what Jasmine and Kiliegh were eating at ten months. But then, is it really fair to compare her to them? We have no idea what she would normally "eat" anyway. She has been through so much lately with medications that this may be her normal. We have been told that infants who have Down syndrome are typically smaller than babies their age who do not have Ds. She has lost weight lately, maybe she is just getting down to her "normal" size and this is her normal eating pattern? I almost feel like that is wishful thinking.

There's one more thing. Is there really any "safe" medication out there that wont be secreted through the breast milk? There are a lot of "what if's" with that single question.

I just don't know what to do. I feel like my brain and my heart are in a battle and I don't know which side to take.

I wish that life really did come with instructions. I wish that we were given a book at birth called "This is Your life". Each day we would open the book up and like an daily affirmation it would tell us what to do. Although..., that may make for a pretty boring life and I wouldn't want to see my future all of the time so maybe it could be something like a magic eight ball. Yeah, that would be perfect. Shake it up. Ask it my question and get a clear answer. I have so many questions right now and I really need answers.

Hopefully, tomorrow I will have a better "feeling". I plan on calling Peoria first thing in the morning for the results of all of the labs that were done on Thursday. My doctor who prescribes the antidepressants is gone for over a month on her own personal medical leave so I am going to call my family doctor and try to get in right away to see her. Originally she is the one who gave me the Pristiq, so I am slightly hopeful that she will have another idea for me. Who knows, maybe I can do both.