As some of you may remember from my previous posts........our neuro does not think our daughter has LKS. Not sure how she can make that decision after admitting that she has never treated a child with LKS?  I did however manage to convince her to write us a script for the Ann Connolly test.  If my daughter is + what argument's can I make to get the neuro to tx my daughter with steroids and anti seizure meds?

 

I have called other neuro's and to be honest I feel extremely frustrated starting the process all over with yet another neuro. Some of the neuro's that have experiences with LKS kids don't have any appointments anytime soon and charge a ton. Meanwhile the clock is ticking!  I realize I am not telling anyone here anything new...it's just frustrating to tell my daughter's story to every doctor/therapist we meet and get no answers/help.

 

I'd like to share the following with you and wonder what you guys make of this....since all of you have experience with LKS I really value your opinions. Thanks for reading this long e-mail....you have all been so helpful and have taught me so much about LKS.

 

I have a 4.5 year old daughter that at one point functioned as a typical child (until she was 32mths of age).  At 32mths of age she regressed (play, social, language etc).  We implemented therapies/diet/supplements within weeks of her regressing.  Currently, she is making some progress ("slow and steady"-per school) but her language skills have continued to decrease....she now babbles and has not one single word left.  Even when she regressed at 32mths of age she had some words.....but slowly they all have disappeared.  I find this odd considering all of the services she gets (they are pretty intense), including 6 sessions of speech therapy per week.

 

Anyhow....I made a very interesting discovering recently and was wondering if anyone  could explain it to me and/or provide with some sort of guidance/insight.

 

If I present a picture of an item to my daughter for example  "ball" and then say "get ball" while showing her the picture of the ball she can do it.  Doing this she is basically matching the picture with the real item.  If I just say "get ball" she has no idea what I'm saying, unless I provide a visual (point to the ball).  This is a kid who was once speaking in phrases and some sentences.....it's  also VERY apparent that she can not physically produce words and truly seems amazed that we can produce words (she forever is watching our mouths).  She does not have any hearing issues.  She does present like she is on the spectrum.....but I just know there is more to it...I can just feel it.

 

 

Any thoughts are appreciated..........as I'm getting little advice from our doctors/therapists. I feel like most people have given up on her.

 

Thank you