PTSD + Post Holiday letdown and sick child = giant meltdown

Options
clariceak
clariceak Member Posts: 752
edited June 2014 in Stage III Breast Cancer

Last fall my youngest daughter was being tested to rule out brain tumours, while I was in Seattle for my bilat.  Some wise women on this thread talked me off the ledge at that time and I am forever grateful.  She has been vomiting sporadically for almost 2 years and had a GI scope in August. She was put on a heavy dose of steroids which stopped the vomiting for 2.5 months.   It has started again.

At this point I don't have much faith in the medical establishment to dx or cure her.  The gastrologist's only recommendation was more steroids if the vomiting reocurred.  The steroids turned my bubbly little girl into a food aggressive zombie.

My "life as dog" philosophy tells me to be grateful that it isn't a brain tumour.  Although crohns disease and eosinophilic disorder can severely impact qol, they probably won't significantly shortern her life span.  I'm crying because the thought of her going through multiple procedures, severe dietary restrictions etc without me is devasting.  Don't all kids need their mothers when they are sick?  Her dad is not very comforting, and tends to impatient.  On the plus side, her older sister is an angel and they are so close. 

· Share on FacebookShare on Twitter

Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2010
    · Share on FacebookShare on Twitter
  • Bugs
    Bugs Member Posts: 1,719
    edited December 2010

    It's so hard when our babies are sick.  I'm sorry she is having to go through this (and you too)

    You mentioned PTSD and I'm pretty sure you're done with active treatment, so I'm thinking you're going through the "what if" scenerios about leaving your daughter to go through this on her own?  Deep breathe..you're right.  Combining all that with the post holidays is bound to wreak havoc on your emotions.

    {{hugs}}

    · Share on FacebookShare on Twitter
  • MoinTexas
    MoinTexas Member Posts: 30
    edited December 2010

    Clariceak - your post about your daughter's vomiting problem reminded me of an article I read recently in the Washington Post, on their Health News page, under Medical Mysteries.  The article should be able to be found at

    http://www.washingtonpost.com/wp-dyn/content/article/2010/11/12/AR2010111205474.html

     It is about a young woman who had a chronic vomiting problem but it started when she was a child.  Perhaps it will give you another lead.  It was published November 16 and you can find it on the Health Page if the link does not work.

     Marilyn

    · Share on FacebookShare on Twitter
  • clariceak
    clariceak Member Posts: 752
    edited December 2010

    Thank you Marilyn. I'll check that link out.  I feel like I need Dr. House and differential diagnosis. 

    And thank you to everyone else who responded.  Just a bad day, but tomorrow will be better. I'm sure many of you understand, when I say I can handle about anything bc will send my way but if my child is sick, it is so much harder to handle.

    · Share on FacebookShare on Twitter
  • jenn3
    jenn3 Member Posts: 3,316
    edited December 2010

    clariceak - I totally get what you're feeling.........my daughter was sick for over a year before she was dx'd and still has other issues that crop up.  She went from a happy Sophmore, to being unable to walk, use her hands and screaming in severe pain.  We were told it was a mental issue.  I think we spent every other week in the ER and everyday inbetween trying to figure out what was wrong.  Test, after test after test........She was diagnosed with Intracranial Hypertension - very rare neurological disorder. Had they taken my daughter seriously they would have realized that there were other symptoms there - they were being ignored.  Then she started with stomach problems......she has Eosinphilic disorder too.  All of this went on for two years before I was dx'd with BC.  When I was dx'd all I could think was who was going to take care of her and guide her through the crazy mine field of the medical field.  She still has symptoms, but her gastro dr was killed in an accident and I don't trust anyone else right now and she is too old to see the neurologist she was seeing so we now need to find an "adult" neurologist.  However, she is much much better and with age has come the ability to manage her disease and to know when it's flared.  She is in college and had a "flare" probably brought on by stress right after getting there, but she managed it and I was so proud of her........ That really helped me to relax and know that she can do it!!!

    When you said you should be thankful it's not a brain tumor......there was a point that we were in the ER for the umpteenth time and I actually prayed that they find something.  I didn't want my baby to have a tumor, but I so needed answers.  Amazing what our minds and stress can do.

    (((HUGS)))

    · Share on FacebookShare on Twitter
  • kimber3006
    kimber3006 Member Posts: 586
    edited December 2010

    I'm so sorry for both of you.  What an awful lot to handle.  I hope tomorrow really is much better.

    · Share on FacebookShare on Twitter
  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2010

    Clarice, I am so sorry you are dealing with this. I know your fears - my son has had some health issues, he had Surgery last year and will need more next year. And all the time I worry about how he would cope if I wasn't here.

    All I can say is that you have to live with the assumption that you will be here for her. Thats all we can do. As Sherri says, don't let the beast take any more than it already has.

    ((((Hugs)))), I know today will be a better one. 

    · Share on FacebookShare on Twitter
  • Kathleen26
    Kathleen26 Member Posts: 210
    edited December 2010

    This sounds exactly like what happened to the daughter of a close friend.  Test after test, and nothing was found.   Then someone suggested that it might be a gluten intolerance, even though the episodes were somewhat sporadic, and so they tried removing all gluten from her diet.   Lo and behold, the vomiting ended, and now she is thriving and in her first year of college.

    · Share on FacebookShare on Twitter
  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2010

    I wish I had something to add that could help.  All I can say is that I'm sorry that you have to deal with these serious health issues with your daughter.  Being on the other side of tx can be so scary when we get tired and down. But the odds are on our side. I hope you have more good days than bad.

    · Share on FacebookShare on Twitter
  • clariceak
    clariceak Member Posts: 752
    edited December 2010

    Kathleen - Thanks for sharing.  I'm very close to experimenting with removing gluten.  There seems to be such an increase nationwide of kids who are gluten intolerant.  I have many allergies so she has an increased risk. She did have a basic allergy screen in August.  I was almost hoping that she would test positive for at least one trigger and then we would know. Unfortunately, kids with Eosinphilic disorders will often "pass" the allergy screens, yet many of the top 8 foods cause flare-ups. I was told by a mother on an eos board that changing her diet now might skew the dx tests if I take her to specialists in Jan. My chemo brain is having trouble sorting all this out, and my crappy verbal wiring can't begin to pronounce these words.  I'll have to make up sign cards when I go to meet with the specialists. 

    jenn3 - what a scary time for you and your daughter. How frustrating to know something is seriously wrong with your child and have it dismissed as a mental issue.  Quite a few docs have suggested her vomiting might be stress related.  She is getting close to junior high and I'm worried that she will be tagged as bulimic if we can't stop the vomiting.  It occurs without warning, so there is no time to go the bathroom.  Once it was almost comical.  We went out to eat with my sister and her family in California.  It was an incredibly busy night in the restaurant.  We were eating and then I noticed she was about to get sick.  I grabbed her by the hand and started rushing towards the bathroom . ..except I had no idea where it was.  As we raced through the waiting area she started a trail of vomit.  Never did find the bathroom and ended up by the kitchen throwing up in a trash can.  We went back to dinner, and because it was so busy the staff left the vomit trail right in the crowded lobby.  Just placed yellow signs around the area and left it.

    Kerry - Sorry your son has health issues.  Perhaps our experience with bc can be a model of behavior for our kids on how to handle a serious illness.

    · Share on FacebookShare on Twitter
  • Pure
    Pure Member Posts: 1,796
    edited December 2010

    I am so sorry your dealing with this...You just have to know that you will be here for her and odds are in your favor that you will!

    Hugs---

    · Share on FacebookShare on Twitter
  • Bugs
    Bugs Member Posts: 1,719
    edited December 2010

    Clarice, I was going to ask you about gluten.  I have a friend who is very intolerant and if she has some is down in bed the next day and it takes a good week for her symptoms to go away. 

    At least now there are quite a few gluten free items out there.

    · Share on FacebookShare on Twitter

Categories