Still no answers...

Well yesterday's trip to Emory didn't tell me anything new. I am no closer to knowing anything more than I did the day before yesterday. It's so frustrating. I have worked so hard to help Baby Girl and I feel like they are just running me in circles. I almost wonder if anyone really knows or will ever know what is wrong.

One doctor in Children's diagnosed her with PTS (post traumatic stress) and medicated her for it. The meds made it way worse. It was like throwing gas on a fire(if you can imagine). Then another specialist said it was ODD (Oppositional Defiant Disorder). Then her psychologist diagnosed her with RADD (Reactive Attachment Disorder) with possible autism (which landed us at Marcus). Then Marcus refered us to Emory Neuro Development for possible FAS (Fetal alcohol  syndrome).

Emory striked out every one of the diagnoses the specialists above gave us. We spent the whole day there and saw 6 doctors while we were there. Here is what they said (so far)...

She scored a 5 on the FAS test and she had to score a 10 to be diagnosed with that. So thankfully she DOESN'T have FAS.

 Then they said she was to young for RAD or ODD. Even though she has almost every sign of RADD and does have every single one of the signs of ODD.

Next they striked autism off the list. The reasons why ...

1. She occasionally does show feelings toward others. Most of the time (95% of the time) she shows no feelings of any kind (not to pain or to joy). Most of her feelings are expressed through screaming fits that last from minutes to hours in which you almost never know what she's screaming about, because she won't talk.

 2. She can talk, even though she seldom does. Sometimes she goes weeks without speaking a single word.

 So what do I think? I don't really know what to think. I almost wonder if these doctors even know what they think. Seriously.

I am no closer to knowing today than I did a year ago. I'm frustrated...very ,very, very frustrated. It's been a year of going here and there to get her help.Everyone that meets her knows that it's an extreme case. She is like no other kid that anyone has ever met. What she does here, she does everywhere we go. Every home care nurse has seen it(which is why some have left us), every one of her specialist doctors have seen it, the hospital and staff at Scottish Rite have seen it(even hospitalized her for it), and we live with it every single day. But the question is this.... What is it? It's far from normal.

The problem is this. There is no blood test for the condtions above. Only pamplets with questions you answer about your kid and  the doctor scores and uses that to diagnose. I must have filled out over 20 of those now and some of the pamplets are several pages long. Each came back with one diagnoses or another. But then no two doctors can seem to agree. My question for them was this...
How can a three year old child have ODD, RAD, FAS, PTS, and ASD? Each one of those by itself is huge and life impacting. Their answer was, "They can't" and "She don't". Next question I asked was "Well what do you think she has?". They couldn't answer me. They said they were going to meet with all the other doctors there at Emory Neuro and put their heads together and that I will get a call back with a meeting date within the next month.

Their recommendation for now is to put her in a medically fragile daycare during the day ,start home bound Pre k asap, and seek more therapy for her. Well sir she can't be at both places at the same time. Do you want her in school or in a daycare? Then who is going to cover the special needs daycare bill? I don't think pushing her off on someone is the solution. Why put her in a daycare when she is so medically fragile and weak?  Not to mention the attachment issues. She's a child that can't handle even small changes...not even simple things like moving a toy in her room or changing her bed sheets (It could send her into a panic mode that might last for hours). She won't ever make it in a daycare setting . Also, the closest daycare like that is almost an hour from me. So who is going to transport her both ways (I can't)? She will require nursing during transporting (who will cover that?).

So pray for us, especially her. I just want some answers..



Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6