Vada's EEG came back pretty normal, slower than typical, but free of Hypsarrhythmia, a sub-clinical brain pattern that is often found in patients who have IS/Ws. Vada first couple EEGs, which were done almost a year ago, had the Hypsarrhythmia. The fact that her most recent EEG showed no Hypsarrhythmia is a good thing. It means she is free of the sub-clinical symptoms and now we have to treat the clinical or the physical signs of the seizures-- what we are seeing in the videos below.
Our plan is to increase the doses of her current maintenance medications. The concern that I had originally had with the DTaP being the cause of all of this has been addressed and I have been told that we can not directly blame the DTaP vaccine for the seizures reappearing. It is possible that the vaccine may have lowered her threshold to fight off the seizures but it is only a possibility. The type of seizures that Vada has, often times comes back or even changes into other forms of epilepsy and that is more of our reality. Either way, I can not dwell on the "what if's" and I refuse to be consumed in my guilt over the choice that I made to agree to vaccinate. While I didn't fully feel comfortable with this particular vaccine I did believe that I was doing what was in her best interest. I will continue to do what I think is right for my children-- like getting into it with a Resident doctor in the ED...oh, yes I did! (Don't mess with this mom or my intelligent posse who is feeding me with all of the correct information!)
We have to do some lab work in the morning, once it comes back we will change her doses and we should be released to go home. We will keep in direct contact with the Neurologist here and will continue to monitor Vada closely. Hopefully, this can be fixed. I am hopeful even though it does seem like we are grasping on this one.
I plan on taking a quick thirty minute detour to the Arch with Vada-- before heading out. Were not going to go in or up the arch, just walk around and take it all in. I cant bring her to St.L, for her very first time and not take her to the Arch. It would be wrong! Hopefully, we will be released when it is still light out!
I have thought a lot about Jacey, the little girl that I met while pregnant with V and her family. (This was the family that I wrote My Great Story about. Which btw, I have almost finished my rewrite of that story.) I would love to see them while we are here but I don't know when Vada will be released and I don't want to give short notice or put anyone on the spot. Since V is now transferred here for her Neurological treatment I know that there will be plenty of opportunities in the near future for us to get together again and I look forward to it!
Vada and I will be meeting up with another very special person tomorrow and I cant wait to tell you all about our visit but I will leave that for another post!!!...
Our plan is to increase the doses of her current maintenance medications. The concern that I had originally had with the DTaP being the cause of all of this has been addressed and I have been told that we can not directly blame the DTaP vaccine for the seizures reappearing. It is possible that the vaccine may have lowered her threshold to fight off the seizures but it is only a possibility. The type of seizures that Vada has, often times comes back or even changes into other forms of epilepsy and that is more of our reality. Either way, I can not dwell on the "what if's" and I refuse to be consumed in my guilt over the choice that I made to agree to vaccinate. While I didn't fully feel comfortable with this particular vaccine I did believe that I was doing what was in her best interest. I will continue to do what I think is right for my children-- like getting into it with a Resident doctor in the ED...oh, yes I did! (Don't mess with this mom or my intelligent posse who is feeding me with all of the correct information!)
We have to do some lab work in the morning, once it comes back we will change her doses and we should be released to go home. We will keep in direct contact with the Neurologist here and will continue to monitor Vada closely. Hopefully, this can be fixed. I am hopeful even though it does seem like we are grasping on this one.
I plan on taking a quick thirty minute detour to the Arch with Vada-- before heading out. Were not going to go in or up the arch, just walk around and take it all in. I cant bring her to St.L, for her very first time and not take her to the Arch. It would be wrong! Hopefully, we will be released when it is still light out!
I have thought a lot about Jacey, the little girl that I met while pregnant with V and her family. (This was the family that I wrote My Great Story about. Which btw, I have almost finished my rewrite of that story.) I would love to see them while we are here but I don't know when Vada will be released and I don't want to give short notice or put anyone on the spot. Since V is now transferred here for her Neurological treatment I know that there will be plenty of opportunities in the near future for us to get together again and I look forward to it!
Vada and I will be meeting up with another very special person tomorrow and I cant wait to tell you all about our visit but I will leave that for another post!!!...
4 comments:
for some reason I lost track of you blog. I just found out that you were back in the hospital and have been praying for little Vada. Thinking of you guys
Thank you Shannon!
Oh Tara - my heart is in my throat. You must be absolutely terrified. Sweet Vada does not deserve this. Oh how I hate those institutional looking hospital cribs (although Vada appears to be enjoying herself!) Please know that I am praying so hard for your precious little girl and for your family.
Sending my thoughts and prayers to your little beauty. I just found your blog through Annie at The House that Jade Built and LOVE IT even though I wish the first posts I read showed little Vada doing something more fun than being in the hospital. She is such a sweetie and I love your writing. I look forward to following her for a long while to come!
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