Jump to content
ACN Latitudes Forums

Starting Steroids


Recommended Posts

My daughter started a steroid burst yesterday. I am hoping things begin to improve, as things have gotten worse lately. I am left feeling so heartbroken because last night we needed police intervention to get her to stay at my sisters for a few days. The last week things have gotten bad here with the rages. In my 40 some years of life I have experienced what it feels like to lose a parent, to lose a brother to cancer, and to witness my grandmothers last breath, but to deal with the pain you feel as you watch your child suffer for years is to know the true meaning of despair. I know deep in my heart she will get better again but what we go through in the process cannot even begin to be put into words.

She has recently chosen the college she will attend this fall. What saddens me the most is not only watching my first born leave home and start her own journey, it is realizing how much of her childhood was lost to this disorder.

I have read all the posts relating to the steroid bursts and I am praying this helps her. Please say a prayer for Katie as I pray for all our children each night.

Link to comment
Share on other sites

Tired Mom- hugs to you and your family. Be patient (which I know is impossible), it can take time to see the effects of the burst. How long is the burst for?

40mg for 5 days. WE have an appt. with Dr. T again on Sunday so hopefully we will be on the right track. He has been so kind to Katie and after only one visit he has her all figured out.

Link to comment
Share on other sites

tired mom,

You did say the Biaxin seemed to help somewhat and she has the myco, right? did it not help enough? can yo continue on that? well, see what doc t says......

 

I totally understand about the kind of pain you put forth for your child, it hits right to the core.....I will pray for you......

 

Faith

Edited by faith
Link to comment
Share on other sites

tired mom,

You did say the Biaxin seemed to help somewhat and she has the myco, right? did it not help enough? can yo continue on that? well, see what doc t says......

 

I totally understand about the kind of pain you put forth for your child, it hits right to the core.....I will pray for you......

 

Faith

Yes the Biaxin worked wonders.We had a very promising month. When the script ran out she seemed fine so I was waiting for our next appt. to see where we are headed. In the meantime things

started to get worse and we started back on the biaxin. I know it may be a die-off but it is very scary.Katie was very high for myco as Dr. T told me her IgM numbers might be the highest he has seen. He feels this may have played a part for a long time.

Link to comment
Share on other sites

Been there - ALOT - and truly understand your pain - no need to explain. Sometimes I think the heartbreak of a backslide is more painful after a period of calm and hope. Sending out hugs and hope - glad you are getting to see Dr T soon.

After about 3 months of almost no agressive, self injurious rages- this weekend brought a flare. Its scarier, once you think you're on the path to healing and have found the key, to then realize there is more to be done but you don't know what.

Link to comment
Share on other sites

I just read this update. I am so glad she was willing to try the burst and hope it gives you a few days of relief. May take up to a week to see the improvement. I hope Dr. T. will get her biaxin restarted again as well. The rages are so hard. We have seen those with DS20. Much better recently. You are both in my thoughts. The setbacks are the most difficult.

 

Ellie

Link to comment
Share on other sites

Tired Mom--My heart goes out to you tonight, prayers for you and Kate.

 

When you have seen Dr T has the issue of trying IVIG now ever come up?

What of Dr. K.? Dr. K is of course doing IVIG, and for some older teens as well it seems it has helped--

I will pray.

Link to comment
Share on other sites

My daughter started a steroid burst yesterday. I am hoping things begin to improve, as things have gotten worse lately. I am left feeling so heartbroken because last night we needed police intervention to get her to stay at my sisters for a few days. The last week things have gotten bad here with the rages. In my 40 some years of life I have experienced what it feels like to lose a parent, to lose a brother to cancer, and to witness my grandmothers last breath, but to deal with the pain you feel as you watch your child suffer for years is to know the true meaning of despair. I know deep in my heart she will get better again but what we go through in the process cannot even begin to be put into words.

She has recently chosen the college she will attend this fall. What saddens me the most is not only watching my first born leave home and start her own journey, it is realizing how much of her childhood was lost to this disorder.

I have read all the posts relating to the steroid bursts and I am praying this helps her. Please say a prayer for Katie as I pray for all our children each night.

 

 

I have just read my sister's post here, and am writing through tears. I have seen firsthand the heartache this family has gone through because of this illness. And, as Katie gets near adulthood, there is less and less "control" any of us have over her decisions. When she is in this distorted state, her perceptions are so twisted, and it is nearly impossible for any of us to get through to her. She didn't find comfort with my family.. she's back home - She's really fighting going to Dr. T on Sunday.. and yet she knows she needs help. But the defiance and the rage and the walking on eggshells through life to keep her from cracking.. it's maddening for everyone. And to top it off, the medical industry should be ashamed of itself for what a poor poor system they have in place for a crisis situation! So you are left to your own devices, you pray and you pray, and you hope that somewhere out there, God hears.

My thoughts are with my beautiful sister, her family, and all of you going through this.. May the road to recovery rise up to meet us all!

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...