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Lack of Pediatric Psych Options Discussion

Posted by FloydAS on September 10, 2015, at 7:31:13

Bear with me as I explain via rant.

I've previously discussed my history of GAD and potentially depressive symptoms that I'm being treated for via Brintellix (20 mg) after failing treatment with Zoloft. The Brintellix has helped a good bit, so much so that my PRN use of Xanax XR that is prescribed is basically not needed anymore.

Fast forward to the purpose of this post. I have a 9 year old daughter who exhibits similar GAD and separation anxiety symptoms. Her issues are much more pronounced. We put her through a year and a half treatment of Cognitive Behavioral Therapy to deal with her issues that have been completely unsuccessful. I believe she has some form of panic disorder that prevents her from putting any of the tools she learned in CBT to use when she gets into that state.

My daughter was diagnosed at 4 years old with a very rare Primary Immune Deficiency. More recently, she was additionally diagnosed with a rare connective tissue disorder called Ehler's Danlos Syndrome. What this means is that she undergoes significant amounts of medical tests, and suffers from countless numbers of health issues. We have to give her weekly immunoglobulin infusions to deal with her immune deficiency so that she can remain somewhat healthy but that doesn't cover everything.

School-wise she has an unnatural fear of fire drills and lockdown drills and is generally afraid of dying. She hasn't gone through a lockdown drill at school in 3 solid years in a row yet she stresses over this every single night before bed to the point that she nearly gets sick.

We recently had to pull her out of school to deal with ongoing Gastrointestinal issues that would not resolve. She went through an endoscopy and rounds of lab work. Everything came back normal except her liver enzyme levels were slightly elevated. They've been elevated for some time now and are continuing on the up tick. Her immunologist wants to perform further testing to see what's going on here - I am afraid her constant state of stress may be playing a role as the GI doctor says her levels, while elevated, are not yet alarming.

She has also been to see a pediatric psychiatrist - basically the only one in our area. She performed a DNA cheek swab and the results came back indicating that nothing would be compatible with my daughter and the psychiatrist sent us on our way.

My frustration is that there seems to be a significant lack of pediatric mental health options available to kids who obviously need help. My daughter seems to fit this description in my view as it appears to be affecting her schooling and being able to cope with just being "different" than just about everyone else her age that she meets. She has enough challenges as it is and this is compounding the issues.

The only saving grace is that her GI doctor recently prescribed Elavil (Amitriptyline) for off label use to treat her belly issues and headaches and as a side benefit hopefully help her anxiety as well. I have no idea if this is appropriate, safe, and/or good for her from a psych standpoint as he is a GI specialist. The fact that we have nearly zero options for mental health professionals to properly evaluate her condition and provide us assistance is absolutely FRUSTRATING beyond belief.

I'm not necessarily looking for answers. I'm mostly just needing to vent as watching my little girl struggle with so many things is difficult and troubling despite our best efforts to get her the help she needs. I know mental health assistance is lacking across the board, but pediatric assistance appears to be in the worst shape from our experience, at least where we live.

Thanks for listening and allowing me to vent. It helps getting things off my chest.




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