Seeking More Answers

In addition to Ella's behavioral struggles, she has severe eczema, allergies that are barely controlled, fairly frequent UTI's and other irritating "issues" in that area, and incontinence issues that are likely a result of those "issues" (after being completely night and day potty trained for almost 2 years as a toddler she now has multiple day time accidents a week and wears a pull up to bed that she soaks every night with rare exceptions). 

I've constantly wondered and questioned many of our health experts if there isn't something else going on physically or neurologically that would give us an answer to what we've been experiencing. I feel like we are still missing a big piece of this puzzle - and meanwhile she is flailing and failing. 

After speaking anecdotally to several mental health experts (including my own counselor and my precious uncle who retired after a full life of service in mental health) I have requested a referral to a pediatric neurologist. In my uncle's words when you are in this big of a crisis, you "start at the top" and start eliminating the physical and neurological possibilities first. Then, if those are ruled out, you go from there into treating through psychology and psychiatry. 

I have no idea who they will recommend (there are so many listed in DFW - a blessing and a curse because there's no way to wade through them without an inside opinion), where they will be (I told our pediatrician to send us anywhere - I'll drive all over Texas and fly anywhere in the country even in this pandemic if I have to), or how long it will take to actually get in and be seen. 

My dad said yesterday that our daily struggles and our constant search to find answers and help seem to mirror those families whose child has a rare disease and who have to fight for answers. While I could never compare our struggles to the struggles and heartache of a family facing a terminal illness with their child, I very much feel at least some of that desperation. I am fearful of losing my child! She is not even the same person she was two months ago when we thought we finally had answers. I am so afraid that we are losing her - either to completely implode into herself and never be able to come out of this, or to making the not-too-far-away step of trying to harm herself or end her life (or harm someone else in our family). 

It's terrifying and crippling and I just so desperately need someone who can help my child!