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Something Is Wrong w My Baby and I don't Know What to Do... Please help.

Posted by on Jun. 26, 2013 at 1:16 PM
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I cannot go into details because I am at work and I don't want to fall apart.  I have always thought my wonderfully, energetic, highly intelligent daughter was slightly different.  Different is fine, ok, good even.  But when does it change from slightly different to needing a diagnosis so I can help her be happy and succeed?  Well its been a long time coming, and today... the time came.  My daughter's differences are significantly impairing her quality of life... interaction with others, following directions, what appears as not minding and even lying.  These are high level observations you could make if you didnt know her.  If you knew her more you might say shes too smart for her age and it makes you have higher expectations, which isnt fair.  She has a hard time listening and not following directions.... because she cannot help but say what she feels she needs to say... even if she knows a punishment will result.  She has completely irrational fears that lead to constant nightmares and too much caution in most things.  She lies but honestly believes shes not lying.  Im not sure she knows the difference.  She has no empathy or sympathy for others... at least not always.  She always feels alone and hates it.  These don't even scratch the surface.  

I feel like my baby is suffering and its my fault.

I need to help her but I don't know where to start?  Im guessing finding "the best" or "the best that is feasible" is ideal?  Her pediatrician is new to us... Im not sure thats the best places to start.  I hate to just pick someone from our BCBS directory.  Do I expect to have her tested?  If so is this out of pocket normally? Psychologist? Psychiatrist?  

-Drowning in Kansas City

in love  blowing bubbles  baby boy 
Wife to Jared, Mother to Olivia Grace 10/11/2007  &   Blaine Alexander 01/13/2012

by on Jun. 26, 2013 at 1:16 PM
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by on Jun. 26, 2013 at 1:20 PM

BTW shes 5.  

by on Jun. 26, 2013 at 4:18 PM

 Hmmm...  at 5 it's hard to really get a handle on things still. 

What caused you to finally crumble today?  Can you describe the event? 

Was she in K last year, or will she be in K this year?  What about Pre-K?  What observations ahve other adults in her life made? 

Most of the time, your first stop will be to the pediatrician.  You'll tell them what's going on and they'll refer you.  Do you have a PPO or HMO?  This makes a difference as to whether you HAVE to follow the pedi's recomendation or not. 

And, yes, most of the time diagnostic testing for this type of thing is out-of-pocket, at least in my experience.  Some insurances will cover it, but most of the time you'll have to file the paperwork with them yourself, because most practitioners will not bill insurance for the initial testing due to the fact that most will not cover it.  When I had DS's done it cost about $1,600 out of pocket.  (It was worth every penny!) 

LadybugsMonkeys Char
by on Jul. 4, 2013 at 1:48 PM
Sorry it took so long for me to reply, we are camping and I have spotty phone service. Right now I am sitting on a fallen down tree on one of their trails about 15 foot off the ground so I can send!

Depending on your insurance if they cover testing. You can call the member services and or some have a nurse line that you can talk to. You said your pediatrician is new to you, do you have a family doctor that know you and your daughter?

Get a referal if your insurance requires it, to a developmental pediatrician. That is a wonderful starting point. I took my sons to our family doctor (PCP) she gave us the referal to the developmental ped. When you set up the appointment make sure they book you for a bigger time slot so you have time to talk and explain what is going on with you daughter. The little 10-15 minute will not work the doctor is in a rush and not fully listening.

We was lucky that our insurance covered all the testing so far.

I am not a doctor, nor do I play one on at times I have been asked why I am not. I have read all the medial books and books on disorders that I can get my hands on from the library. But to me it sounds like anxiety could be a big factor. Maybe ADHD but again she is 5.

Was she in kindergarten or pre-k? Pre-school?

Our developmental ped. wanted other adults to also fill out the checklists. Sports coaches or Sunday school teachers works as well. We just had the boys cub scout/boy scout leaders and the Backwood Rangers post master fill out the forms with what they have seen. They haven't been in 4-H very long to have their leaders fill them out. I was at a loss trying to find other non-family members to fill out forms when they that young. (They are 10 & 12 now)

If she is in school you can also request testing to see if she should have an IEP or 504 plan. Then you can take their test results to your doctor and they can refer you to the right doctors.

I will check back in later I'm going to climb out of this tree and get my kids ready for our trip to my brothers and watching fireworks with everyone....wish me luck! Have a happy 4th of July!
LadybugsMonkeys Char
by on Jul. 4, 2013 at 1:50 PM
Sorry if there is any typos or misspellings I'm mobile and don't have spell check. :-)
by on Aug. 19, 2013 at 4:22 PM

Hello, have you looked at sensory processing disorder? I have a 5 year old who is also different. She has a lot of fears and behaviors that didn't seem to make any sense to me until I started looking at them in the context of spd. Check out this site:

My 9 year old has dyspraxia, and I highly suspect that my 5 year old does too, sensory processing disfunction can also go along with dyspraxia. I know you posted this awhile ago, have you found anything out?

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