Friday, January 22, 2016

Trying to get out of the trenches...

Being optimistic does not come easily for me.  I have shared before that I prefer the cautiously optimist or the more realistic route for my daily approach.  These last couple of weeks I hate to say I have been feeling less hopeful in all areas related to Sonzee, and so I have not wanted to write.
Who wants to read Debbie downer posts on the daily?  I would say maybe if I write it will be make me feel better, but my thoughts are all wonky.  I have tried to start a more positive, inspiring post and I cannot because it is not what I am feeling.  Alas, here I am trying to clear my head with the hope that it will sky rocket me out of the trenches.

This week, similar to the one before has flown by.  There are so many changes that Sonzee has already begun, and so many for her in the near future.  She has finally completed her Topamax wean.  As exciting as this has been, it has not come with some ugly side effects.  Topamax we were told was a "baby drug", and maybe it is compared to the other beasts out there, but let me assure you that watching your child have tremors, the shakes, be extra irritable, possibly be experiencing headaches, and having changes to her seizure activity as a "side effect" or a "weaning effect" is by no means benign.  While I realize these drugs have beneficial properties to them, the side effects are almost as hideous as what they are treating.  I cannot tell you how many ADULTS have reached out to me over the past month to share their experiences while on Topamax and while being weaned from the drug.  ALL of these ADULTS are well beyond 14.8lbs.  ALL of these ADULTS experienced at least one of the side effects that Sonzee has.  It makes me angry and it makes me so sad.  She continues to improve with her cognitive abilities and physical strengthening, so at least that is a cushion, but I CANNOT express how much I am looking forward to another 4-6 weeks from now when the drug is out of her system.

Another addition is the start of her new diet.  Due to the strict nature of the ketogenic diet, Sonzee will no longer be able to take any form of premade liquid medication.  This includes and is not limited to Tylenol, over the counter medications, antibiotics, and her other antiepileptic drug, Keppra.  We have to buy adult versions of all medications due to their limited sugar/carbohydrate content.  I then have to calculate the correct dosage, cut, and crush each pill.  Due to the change from liquid to pill form with her Keppra, we were actually able to wean her a bit from this drug as well.  Usually only one wean of a medication is completed at a time, but in our case this was not planned and with it occurring simultaneously with the Topamax wean I am at a loss as to which drug she is reacting to.  Because she experienced similar symptoms this week as she has throughout the previous weeks, I can semi-confidently say that it is due to the Topamax wean.  


We had our final visit to her immunologist yesterday.  I had been hoping there would actually be some issues with her gamma globulin levels since her white blood count, platelets, and lymphocytes are usually elevated or off.  That to me, would have at least given us a better idea as to why she is constantly getting sick.  Instead, after tracking her labs since November we are now being sent to hematology/oncology to see if they can offer some additional insight.  I am honestly not looking into this too deeply because it could just be "Sonzee", I hope.  However, she has presented with these abnormal levels since her first day of life, it was always attributed to something else.  If I actually think about some of her behaviors it makes me wonder if my gut is saying there really is something else going on.  

My mommy gut has to be misplaced or wrong one of these times....right??

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