Wednesday, December 16, 2015


I am a "reasons" person.  I like to know "the why".  I like to be able to give credit where credit is due.  Unfortunately, in many situations there is not always one specific clear-cut answer to answer "why".  Sometimes things are the way they are just because.  I personally find this completely unsatisfactory, I suppose that places me among the ranks of most two year olds; well, at least mine.

About 6 months ago we were told to increase Sonzee's medications.  When a doctor tells you to increase medications because it will help your child stop having seizures part of you believes them and the other part knows this will not help.  In this specific instance, both Sam and I myself were against the increase.  For those of you on a medical journey of your own I bet you can attest to the fact that even though you may voice your disagreement, it can fall on deaf ears.  Call it what you will, but there is a sense of fear in the system you are supposed to trust.  If you do not do as you are told at any moment your parenting can be called into question, and I am not talking about from other parents.  There is always a shadow looming over you that if you don't do what you are told, then you do not have your child's best interest at heart, and then boom your child and his/her siblings could be taken away.  So as you can guess we obliged.

We decided to slowly increase one of her medications in baby steps.  We had a follow up appointment about 3 weeks after the initial discussion and we told our doctor that we had slowly increased one of the medications, but we had not increased the other, as we must have misunderstood the directions.  We left the appointment with directions to increase the medication.  So, we did.

A week after that appointment I emailed our neurologist at the time and told her as nicely as I could that we were going to decrease one of her medications as the side effects were outweighing any possible benefit that we still were waiting to see.  She agreed with what I had written and we began to lower the medication.  We switched to an epilepsy specialist at the time and were given the green light to begin giving her CBD oil.  Due to this decision, we were to hold off on weaning or playing with any of her medications.  

Since we have increased her medication she has not grown.  Not her head circumference, nor her weight, nor her length has changed at all in the positive directions.  She has been tired and cranky and her muscle tone has gotten weaker.  We have tried everything to get her to gain weight.  She has her own nutritionist to help us with her solids and I have done what I can to produce the best breast-milk, yet it has not seemed to make a difference.  Our baby now has "Failure To Thrive" written next to her long list of already sad diagnoses.  Our decision now is Gtube or NGtube.  When I try to place the blame of course it falls to the medication.  It is easy to blame the medication when I paint the picture in the manner I just did.  But, is it really the medication?  Am I really being impartial and unbiased?  Or am I am simply trying to point the finger to try to make sense of a situation I have yet to make sense of myself?

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