Songs for Lexi

Songs for Lexi

off meds

Had our follow up with neurologist 8/13 after trying Sertraline (Zoloft) since 6/6 (2 months). 

 

Bottom line - it's all a huge guessing game - for parents and for the doctors too.  Abundantly clear after our visits with neurologists for Lexi - neither one we saw really bothered to examine her, their mo is to give you one drug to "try" after another as they really don't know which could work or not as every child is different....  It's not their "fault" per se, but as a parent it is distressing to hear your neuro say that he personally wouldn't have prescribed Zoloft (sertraline) for your daughter, but that the other doctor is a good doctor and nothing against them, but here... why don't you try Strattera, I've had some luck with it for focus with mild side effects.  Come back in 2 months. 

 

Autism is not yet a science -- it's a mix of so many factors the "experts" are stumped.  I get advice and guidance and help from a plethora of sources - with social media being what it is today - there are seemingly endless streams of articles, advice, blogs, tips and warnings for me to weed through and process. 

 

Since the Spring - we tried different drugs for her without any great luck...  March we tried Quillivant, April we tried Vivance, April we tried Intuniv, all of those were quickly out of her system and obviously not working for her.... then June we tried Zoloft and she's officially off as of 8/29.

 

Yesterday, I took her to the mall, and she was very sensory, clinging to me as we walked, she hid under a clothing rack and tensed while she hugged the pants at Old Navy while I tried to find a gift - all the while she's getting people's stares and concerned looks toward me as I searched the racks as quickly as I could in order to get out of the store.  Overall during the past 3 seasons and especially lately over the summer she's had an increase in screaming (could it be the detox from Sertraline? could it be the lack of brain balance exercises?  could it be that she's starting puberty and there's an influx of hormones?  would this be happening regardless of what we were "trying" at the moment?  When she starts school - since it's an ABA program - they will approach the increased screaming as a "behavior" that they must work to eradicate - they won't give her what she wants without the absence of the scream - therefore teaching her that quiet gets the wanted item - like Pavlov's dogs - the autistic child "learns" not to scream to get what they want.  But we, as parents, know, beyond a shadow of a doubt, that the scream, the bad behavior, is a cry for help... a method of soothing herself, of trying to communicate something, a gut pain or a dizzy feeling or a jealous feeling since her older sister gets our attention at that moment....  we, as parents, we know that our autistic child has thoughts and feelings like we do - but that the demonstration of those feelings is so convoluted and badly communicated that it takes years to understand the screaming and the hitting and the repeating repeating repeating of the same same same things.  "Mommom, we did the dentist" means something -- I'm still not sure what it means -- but she's trying to tell me something. 

 

What next?

 

There is a strong pull for us to go holistic now.  We tried the drugs.  Now, all signs point toward cleaning her of all toxins, of all processed foods.  The reaction she had to even the slightest medication showed us just how sensitive her system is...  super sensitive.  Food and chemicals that don't affect our other daughter REALLY seem to affect Lexi.   Also, there's stem cell therapy that seems interesting and RPM as a method of communication that seems to cut through what she is actually saying that I want to investigate further.  Our local health food store had some options as well - an employee told me that regular rice contains arsenic -- and suggested I buy their arsenic free rice.  THAT is nuts, right?  I mean, just how crazy can we take the natural route?  Rice? 

 

Sigh.

 

I will blog again when I get focused on our next approach.  Know that this is hard, but very necessary.  Our child is crying for our help and can't talk and it's very hard to have a " " normal life - but we do our best and take breaks and take vacations and take this day by day.  It's what we do. 

 

Pat's 2 cents:

Each day is a challenge, each day is an opportunity for success.  As our fellow special needs parents know, it's all Lorenzo's Oil territory. We are the ones who have to solve this; those of us without science or medical backgrounds, most without formal special needs training, those of us who still have to make a living, develop our relationships and socialize, have to find time and expertise that we don't already have.  What I can tell you is that we'll never stop fighting, and we will never find this situation acceptable.  We may run out of time, but we'll never run out of hope or commitment.  We have seen Alexi make some great strides over the years, but there's a lot more we have to do.

 

Stay tuned.... 

 

 

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