Not a whole lot has changed since we have last seen Dr. Jennings. Vada has put on a good chunk of weight, which has us all a bit concerned. She is over nineteen pounds now and hasn't really grown in length. Currently she is wearing 6 to 9 months in pants but 12 to 18 months in tops because of her upper body and head size. Her weight gain is because of a few different reasons, but they for the most part, they lead back to the ACTH.
The first contributing factor is from what is called Cushing's Syndrome, not to be confused with Cushing's Disease. It is very apparent in her face, neck and abdomen. To control the CS Dr. Jennings is weaning Vada off of the ACTH quicker than planned, by one week. Her original day to be off was November 19th, now it's the 11th. There has been no signs of seizures since she was first placed onto ACTH so it seems like a safe thing to do.
Another side effect of ACTH or any steroid that I have ever been on, is being hungry all of the time. Vada wants to nurse ALL OF THE TIME, especially at night. During the days usually aren't too bad. She wants to nurse every two to four hours which is more common in a new born than at her age. She has however taken to solid foods and that also seems to subside her a bit. She wont take a bottle, which is fine, but I am trying to introduce a 'natural like' sippy cup to her, with water. Shes not too interested in that either, but on that, I will be persistent in constantly reintroducing it. By giving her water I am hoping to cut down on her calorie intake, but first she has to start drinking the water.
It's the night feedings that are the worst. Between the time she falls asleep (about midnight) and all of the times that she wakes up to nurse, her and I do not get much rest. There have been times when she has woke up seven times wanting only to nurse and nothing will calm her but nursing. Usually, its about five times though. Not letting her nurse is really not an option. When she wakes up she is in a decent mood. Tired and kind of out of it, but knowing what it is that she wants. If I try to hold her off from nursing she becomes agitated and her body movements become distorted and tightened, like she is very uncomfortable. It's not quite a tantrum like you may be thinking. It's hard to explain. It'll escalate until I do nurse her. I don't like attempting to hold her off for too long because then I become concerned with her heart issues. In my opinion she has enough stress on her heart as it is. Since the doctors know of her eating/nursing pattern and have never told me to stop what I am doing let alone change anything, I plan on continuing our nightly binge nursing sessions.
To help with her appetite we are trying the drug Topamax. If you follow my blog then this name will probably sound familiar to you. It is something that I brought up a couple of weeks ago. We were going to put her on it because she was having a hard time taking the Keppra. Actually, I was having a hard time getting her to take it. However, I figured out a way that works and we decided against the Topamax because the amount she would be taking would actually be more than if she just stayed on the Keppra. Now, however, the theory is that the Topamax has a side effect of making you sleepy and not hungry. It doesn't sound ideal when you are thinking of having a baby use it, but in our situation it sounds like the right choice. We have to wait until Monday for our pharmacy to get it in because Dr. Jenning's wants us to try the powered form that comes in capsules. He thinks by adding it to some solid food she may have an easier time ingesting it. One can only hope.
Other than the slight shift in medications nothing else was done today! Especially, no lab work! I did make it a point to ask Dr. Jennings again about when he thinks it would be okay to bring Vada back around friends, family and the general population again. Since Justin was with me I thought it would be a good thing for him to hear straight from the doctor.
On a side note..., in the beginning of all of this I had a friend who had already been through this situation with her daughter tell me about the isolation that would take place. I had my doubts in its extremeness, so because of my doubts I feel as if other may have the same ones. It does seem a bit crazy that Vada cant go to church with us or to family functions or even that we cant have anyone here at our house. A little too extreme, maybe. However, after educating myself on the situation, I will keep her away from everyone for as long as I am told to and I wont second guess it because I know how important it is for her health.
Having Justin hear it from Dr. Jennings kind of reaffirmed things for me. Since Justin had yet to meet Dr. Jennings let alone come to one of the neurologist apportionment's, I was nervous that he thought perhaps that I was over reacting..., you know, being overly protective.
Here's the deal, straight from Dr. Jenning's mouth "Not a good idea until after Easter".
Why Easter? Well, Vada has about three more weeks of the ACTH. Then she has to get it out of her immune system before her immune system can start building itself back up. Then, we have to go back to her four month vaccines and slowly start to get her "up to date".
Some of the vaccines she will never be able to get due to their history of breaking down the barrier for seizures or possibly causing them. Getting her "up to date" will obviously take time because there are several missed vaccines as well. Plus, she was already on a slower vaccine schedule due to her heart issues.
IF Vada were to catch a cold it is very possible that she would not be able to fight off whatever she caught and it could be fatal. Since we are now getting into the Winter and cold/flu season waiting until Spring is a safe plan for Vada.
So depending on the weather, how Vada is doing and how the rest of the family is feeling (because we get sick too) we are planning on bringing her back out into the public..., to church on Easter Day.