Can we explain this?

I have wanted answers to Grant's severe behaviors for so long. You would think in 2016 when a Grant's psychiatrist proposed catatonia as a reasonable explanation to the lack of eating, self-injury, etc...I would have been in full agreement. I was on board at that time. In the last 6 months, I have shared a different story with anyone that listens. I worried his psych was looking through a narrow lens and I was trying to look at him as a full person. Yes, through her viewpt..yes, ..this might be catatonia.

It was not at that particular time that I fought this concept. I fully complied and gave him the Valium she felt he needed, but he got worse. He didn't start eating again and we ended up in the ER with an NG feeding tube and an application to Kennedy Krieger. The local hospital told us they would not take him and (as you know) we patiently waited while my son became more aggressive and healthier as the feeding tube helped him re-gain his lost weight.

Once he was home (after the ER visit), I demanded he be taken off of Valium, which is a class of Benzodiazepines. These meds are used as a first response to catatonia, but are also addictive and my son is only 9. I insist he be taken off of them explaining that Grant is not catatonic, but severely malnourished. Prove me wrong. Let's take him off the meds.

As you know, I wait for 1 year and 3 months for the only help I am aware of (KKI) and now he is in the hospital with a full team. This team is actually not any larger than it has been in the past, but here he has full cooperation amongst different fields. I am typically the one piecing parts together. OT, speech, psych, behaviorists, feeding therapists, pediatricians, and so forth. Trust me, this is not an easy task to take on. I spend more time talking to professionals about my child than I get to spend with him.

The beauty of a hospital setting is the collaboration and I am forever grateful. So now here is the "but". But, it is killing me that the word "catatonia" is once again gracing someone's lips about my son.

I got a call a week ago. They want to put him back on Ativan and that is fine. He has responded favorably to this med, but when she said why (catatonia) I was a little taken back. She asked loads of questions and we talked for a while. Everything I told her further confirmed to her that this is a strong possibility of what is happening.

And while I realize you maybe confused by my writing. What I am trying to say is that I am still struggling with it. Each day that passes; I am verging on tears thinking about what this is and if it explains the last 2 years.

If it does, than for the first time in my life I do feel some guilt. Or maybe it's anger? Or is it disappointment? I don't know. I don't always know what I am feeling. It does not matter what others think or say; I will feel responsible if this is what it is. I will feel defeated that I didn't recognize something that might be obvious now.

I peer back in this musings. I know you are reading, but I feel like I am talking to myself. I have seen some notes that point straight to catatonia. Like blaring signs that this could be exactly what all of this.

And then my other side that is quietly wondering...are we sure? How do we know? If so, what does it all mean? And don't ask me to clarify what catatonia is today. I mean, not because of my emotional state, but rather I don't think I completely "get it". I am waiting to hear from the dr so I can understand if this is something they can test for or how will know for sure? Because just giving him Ativan does not solve the riddle to me whether or not he is or was or could be catatonic again. See, I don't even know if it comes or goes. I am not sure, but I can tell you I don't like what I am reading on my Google research. Hopefully someone will get back to me soon.