Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Still Stressing About My Son

  • Please log in to reply
9 replies to this topic

#1 barefut


    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 27 March 2007 - 08:24 PM

Not sleeping much and right now feels like knives stabbing me all over my torso - probably gas :rolleyes:

I'm tense and I'm getting those shakes/tremors we were just talking about and sharp chest pains and flutters. I know its all lack of sleep and stress. Plus I haven't eaten in awhile.

I still have not heard anything regarding my son's last blood test, (anti-streptolysin - O Titer) which will tell us if he had an untreated strep infection. It should have been back today the nurses agreed.

I am convinced that he did not have rheumatic fever but he is still not out of the woods regarding bacterial endocarditis which can also be caused by other microorganisms like the mold in the attic which has its entry in my son's bedroom ceiling.

I keep a heppa air filter running in there when he sleeps in there, which is rare. We've been sleeping Japanese style on our "nests" on the living room floor for a couple of years now.

I FINALLY got an appt with son's regular doctor tomorrow morning. I am compiling my questions and he will get a lot of them. Then doctor will be gone - again for who knows how long.

My son is now having night sweats which is one of the symptoms of endo. and in the past week he has started snoring but doesn't have any congestion. He's also started napping in the afternoons which isn't like him. (another symptom)

Well, I'm going to go try sleep again - got 4 hours lastnight. Today was not fun. Got a second wind about 6pm and also can't turn my brain off at night.

Sorry to keep posting about my son's condition - unrelated to sclero - but you guys are my people.

Thanks for your good wishes.
Love, Barefut

#2 Heidi


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 573 posts

Posted 28 March 2007 - 01:28 AM

Hi Barefut,

I am so sorry to hear you still don't have any answers and your son seems to be showing new symptoms. I am sure you what you have described for yourself is from the stress of worrying about him. It is so frustrating to have to wait for tests and not know......sometimes our minds can't help but envision the worse! Please try to relax and EAT a little something! You can't help your son if you allow yourself to get sicker.

I do hope you hear some results today.....and keep us posted. You are in my thoughts!!

Warm wishes,

#3 nan


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 28 March 2007 - 04:40 AM

I am so sorry that this stress continues. Hopefully the results will be back today. Easier said than done, but you have to take care of yourself. I hate it when my son is sick and he is 14. It is exhausting. Hang in there and my thoughts are with you and your littlest angel.

#4 Gi Gi

Gi Gi

    Senior Bronze Member

  • Members
  • PipPipPip
  • 34 posts

Posted 28 March 2007 - 05:05 AM

Hi Barefut,

Thank you very much for taking the time out of your nightmare to fill us in. I can only imagine how you must be feeling.

Please know you are in my thoughts and I wish a positive outcome for all of this.
Your Friend,

Gi Gi

#5 LisaBulman


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 28 March 2007 - 07:00 AM

Hi Barefut,
I am so sorry that you have not heard anything yet and are totally stressed out. Hopefully you have gotten some much needed sleep and will have some answers soon. It is so hard not to stress, but please try.

Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#6 Margaret


    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 998 posts
  • Location:Pennsylvania

Posted 28 March 2007 - 08:07 AM

Hi Barefut ,

Been thinking of you and your son, too. Hope it turns out OK and the antibiotics kick in soon. Sounds like he may need them changed or something.

Do take care of yourself so you can help your son. Believe me, I know the effects of many sleepless nights worrying over kids!!!

#7 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 28 March 2007 - 11:49 AM

Hey Barefut!

I am so sorry that you are dealing with all of this. Just wanted you to know I'm thinking about you.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#8 emmie


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 321 posts

Posted 28 March 2007 - 05:23 PM


Please let us know about your little guy. And you must take care of yourself....chicken broth, toast, etc. some nourishment so you don't get light headed. You have to be able to pick him up and be steady.

We care.

xoxo emmie

#9 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 29 March 2007 - 12:57 PM

Barefut, I'm with everyone else...my heart goes out to you.
I surely hope you have been able to get some sleep, although I know it's easier said than done when you have all of this going on. However, it's so important for you to rest and keep yourself nourished, if at all possible... your little guy needs his mama taking care of herself. too.
If you can step back for a second.. what helps you relax the best?
I'm sending a load of cyber hugs your way...
Take care and all of us will be waiting to hear both of you are doing better.
Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#10 barefut


    Platinum Member

  • Topic Starter
  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 29 March 2007 - 06:11 PM

Thanks so much everyone!

My son's doctor was reassuring again. He said the ASO titer preliminary test results were negative but we're still waiting on the final results - whatever that means - he didn't explain.

He's the type who talks purposely so you can't get a word in to ask a question or tell him anything. I tried 3-4 times to say something but he would raise his voice a bit and keep on talking - maddening! I think he saw my list and was trying to answer my questions before I asked them or else just be so reassuring that my questions were irrelevant. Maybe he was afraid I would ask something he could not answer! :lol:

He said he knew I was probably thinking about my scleroderma and letting that worry me. Actually I wasn't. I was thinking Bacterial Endocarditis and mold.

Anyway, I finally gave up and decided to save my questions for the cardiologist. My son has an appt for his echo on the 17th.

I posted this in a new thread but I 'll mention it here too. My gastro doctor found a new murmur in me today! I also may have strep. I DON'T EVEN BELIEVE IT!

It never ends.

Have a good night,