They told us they would be in early yesterday to do PLEX #4. However, they didn't start until around 2p. I ended up having seven seizures yesterday. It's getting so frustrating because obviously we want to see improvement, yet my seizures have almost tripled since I've been under the care of these docs.
At a "research" hospital, you'd guess they would try new things and think outside of the box, but we're not really seeing it. This was a precious encouragement that we received from a dear friend today:
However, as it is written:
“What no eye has seen,
what no ear has heard,
and what no human mind has conceived”—
the things God has prepared for those who love him—
what no ear has heard,
and what no human mind has conceived”—
the things God has prepared for those who love him—
1 Corinthians 2:9
So, we are praying that they will begin to think outside of the box of anything they could conceive and the Lord will bring it to them!
Sorry if it's graphic, but here is a pic of some of the extra fun we're having. Not only are my arms covered in bruises from all of the blood draws, but here is a new bruise that we found yesterday. They are giving me a blood thinner due to being in bed for the last three weeks and this is apparently one of the fun side effects.
On another note, they knew how much I wanted to see Miss P, but couldn't while in the Critical Care ICU. So, they have moved me to the stroke unit so that I still have the care, but kids are allowed on this floor. Hopefully, this means we get some extra hugs from our girl tomorrow. I pray that if she does see any of the PLEX process it would not scare her, but create a loving heart and desire for her to go serve others and love on others that might also be in pain.
Moving on to the details of the day, I have had five seizures in about nine hours. One of Mom's friends came up today for a few hours to allow B to get some work done. It was a special time and we are so grateful for the continued support from everyone!
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Howdy- B now taking over.....
Yes, it has been a crazy couple of days. Princess is so incredibly worn out and frustrated from all of these seizures. The doctors are a little stumped, and as of today proposing that instead of tomorrow being the last exchange (number 5) we will most likely move on with 7 exchanges. We are very hesitant to do this with the recent trend and results that we are seeing. Additionally, Princess' heart rate is consistently up around 120 bpm just sitting in bed. Standing her heart rate is at 161 bpm and even got as high as 174 bpm last night. So while we are very concerned, the docs don't seem to have any answers in regard to what is going on. So please pray for our communication tomorrow.
Princess and I have been up for the last few hours trying to analyze our data on her seizures and trying to decipher what is in her numbers as to her seizures. For this month she is trending towards 5 seizures per day on average, a number we haven't seen since 2008 when we were first diagnosed.
So thanks for your continued prayers and support!
Specific Prayer Requests:
- Princess' heart rate at resting would drop to 75 bpm
- Princess' blood levels. specifically fibrinogen, would be well above 125 so that we can move forward with PLEX if that is what the Lord wants us to do tomorrow.
- Effective communication with all the docs involved and that we would be blessed with an extended period of time to communicate.
- That Princess and I could logically and effectively present the data to the docs and they might discern what will be the best course of action for Princess going forward.
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I commented the other day with the question as to whether or not the seizures could be related to heavy metal toxicity. Since the doctors aren't thinking outside of the box, I thought it wouldn't hurt to send another suggestion. Have you ever considered progesterone therapy with bioidentical progesterone cream? It is amazing stuff and has been really helpful in women with autoimmune diseases (which as you know affect woment 80% more than men - one reason being estrogen dominance). Estrogen, which we are bombarded with due to all the chemicals in our environment that have estrogenic affects in our body, has a stimulating affect on the immune system whereas progesterone has a calming affect on it. Using bioidentical progesterone cream helps to lessen the estrogen dominance by bringing the right ratio of progesterone to estrogen back into balance. It might be something to consider. This is about its connection with lupus, but the general point about the immune system could potentially apply to you too http://www.progesteronetherapy.com/lupus-symptoms.html#axzz2fGA8ucRk. I have found this woman's entire site to be extremely helpful http://www.progesteronetherapy.com/#axzz2fGA8ucRk - what separates her from other doctors is that she recommends very high doses of progesterone, but women who have followed her advice have seen remarkable improvements from a lot of different things. Progesterone, in its bioidentical form, is not toxic so it's okay to use a high dose (although most doctors don't know the science). You migth have to find an alternative/holistic doctor. You just have to find a doctor willing to prescribe it or to order her cream online (I just tried to buy some and it's currently out of stock unfortunately. My doctor prescribes mine to a compounding pharmacy). Progesterone levels are extremely high during pregnancy, especially the 3rd trimester, which could also explain why you had less seizures and felt better during pregnancy. Progesterone is also involved with gene expression - I think I read once that you had a gene that they felt like could be partially responsible for your seizures. Progesterone might help to turn "off" that gene and also help in that way. It might give you some relief! I hate to hear how your suffering and how the doctors haven't been able to help. I am praying for a cure for you - I've been following your blog now for years! I think I originally found it through a girl's blog that I went to college with (Megan Lechler). Emily Jones (Birmingham, AL)
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