Sitting up ( with some help!)-'Living with SMA Type 1

Dosing 3 Spinraza - Anxiety with Living with SMA Type1

Just an update on Lizzy and issues we were dealing with.

Just want to step back a bit and discuss the last several months. Lizzy has had issues where just walking out of the room she has to have coughs before I walk out to even go into the other room for a second. She has been using getting coughs as a way to calm herself down. Its gotten so bad where her and I barely leave the house. Its been all summer and most of last summer.

We knew Lizzy had some Anxiety issues but, not to the point of it causing her blood pressure to get high. She would break out in patches several times a day right before the anxiety hits. We tried to get her on something to help that was non addictive. The local NP put her on a med that is for allergies but would calm her down a little. but its effects had warn off.  I tried Calm-EZ all natural for years but its effect did not work anymore either. It has made life hard for her and us. My health is not the best right now because, her and I do not leave the house very much blaming it on allergies for her. NOPE..... its anxiety. I feel so bad she has been having these issues and her quality of living had gotten worse by this not being addressed. We did not know how really bad it was.

The good news is that she is on a very light anxiety med and small dose blood pressure pill. She was given the meds yesterday. Going home from Madison this time was the best in two years. No coughs she was calm. Usually, we would have to take both cough machines with us because I would have to cough her almost the whole trip. Not  yesterday! We had Lizzy back!! She was sucking on  prime stick beef jerky flipping it with her tongue. No Anxiety!! She was laughing at her brother and making jokes again. We were so happy! That is 3 1/2 hour trip and NO COUGHS and barely any suction. It was so great!! Anxiety in kids needs to be addressed! She told us that the reason she wanted coughs all the time is because, she felt her throat close up and thought the cough would help. It breaks my heart she had to suffer this long with this issue. No one should have to go through these issues. I sat and cried my eyes out last night over this had how this has affected her life. Not even the health caregivers were concerned about this issue.

Her Blood work was perfect, her diet was perfect, her Echo was normal and her kidneys normal from scans on her kidneys.  We spent two full days at Madison having injection done , testing and clinic visits. Very long days.... and very stressful not knowing what was going on!
Spinraza is making her so much stronger and causing contractures too!

I just want others to know Anxiety can cause other medical issues if not addressed. Strokes, heart attacks etc.  Do not feel bad if you or your child has it ! Just get diagnosed and treated.Some parents think these anxiety issues are ANS related issues but, Lizzy never has had an "ANS Storm" .Not that others do NOT have "ANS Storms" I am not saying that by no means.
Lizzy has now for two days only had coughs during her treatments and very little suction. Life is good!!

Lizzy's quality of life improved 100% in one day with the new meds. I do believe in miracles because, I live with one!