*hugs* about all I can do for you. I too hope it's not CF. Although my nephew was diagnosed with it at 9 due to polyps in the nose -- he displayed no other symptoms. They put him on some meds and now at 13 he's finally more his age's size and a quarterback of his football team. CF research has come a long way. Most assume it's a lung issue -- it's actually pancreatic.
I wait anxiously with you to see what the tests come up with.
Erin & Stephen 4/10/04
William Graham & Samantha Lynne 4/29/10
4/1997, 9/2003, 6/2007, 1/2008
Poor baby.....she's sick again. Her ears are plugged up and she says they ache and she is saying her eyes hurt again. The eye thing I haven't quite figured out unless it is a sinus headache of some sort. She also says her chest hurts and has started coughing again. I'm just sad for her and wish I could do more to make her feel better.
Also, while having a BM today she started screaming out that her bottom hurt. She says it feels like she has to go but nothing comes out and it hurts her. I'm assuming she's constipated? This is definitely new for her because she tends to have the opposite problem. Any suggestions of how I can help her and make her more comfortable?
I know there's a neck muscle that can cause a headache behind the eye. Do you think that could be it? Maybe try a heating pad on the neck and/or a gentle neck massage?
For constipation, prune juice, grape juice, or dried fruits (prunes, apricots, etc.) and plenty of water.
No suggestions for the coughing, but I hope she feels better soon. Poor girl.
Deb ................. DH Norm
DS Caleb, 13 ...... DS Patrick, 12
DS Isaiah, 8 ......... DS Thomas, 7
DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
William, 14 weeks, 4/11/12
First round of good news - the sweat test came back negative for CF! Obviously I'm super relieved but at the same time very confused. I'm not sure we'll ever discover exactly "what's wrong" with her, but I'm thankful it isn't this. Still waiting to hear back about the lab test and still don't have the ringworm results either (that one is just getting annoying....Friday will be 6 weeks!).
What a mystery, though I'm glad it's not CF.
While on chemo meds, and anti-nausea meds (which both make a person constipated) our doctor perscribed Miralax. It's over the counter. We use it daily until he's regular again (which for him is every other day) and then move it to occassionally when he hasn't pooped more than 2 days in a row. We mix it in all kinds of drinks and my son doesn't mind it (he says it doesn't taste like anything)
Got more news today, although I'm not sure it was the news I was hoping for. Alana's Prometheus Lab came back "positive for inflammation indicative of Crohn's Disease." My head isn't exactly functioning properly right now because I wasn't expecting this. I just got off the phone with the Nurse Practitioner and scheduled an EGD/Colonoscopy for Jan 10th with a pre-op on Jan 6th. The pre-op is necessary because of her reaction to anesthesia the last time she had this procedure. If anyone has any encouraging words or advice I'd appreciate it. I'll check in later but I have a headache and it is family night.
A positive test? I have followed Alana's story for many years. Of all the many things that she could have, Crohn's disease can be managed. If that is what she has, this could seriously help Alana, her growth, her nutrition, and her general health.
I know several people who have been diagnosed with Corhn's disease. All of them have found that alternative therapies have helped them more than traditional Western medicine, not to mention that they have fewer side effects.
I hope that this is the answer. There has been enough messing around and mystery. Answers of this kind will help Alana move forward and be the happy little girl we all know she is.
There is a web page and organization for children with IBD that you could contact here: http://www.reachoutforyouth.org/living-with-ibd.html
Last edited by sarahsunshine; 12-04-2011 at 09:27 PM.
Skyler Dylan 22 April 1999
Reed Aslan 17 June 2007 ~ 8 September 2008
Ivy Rayne 3 May 2009
Leo Spencer 2 Sept 2010
Forrest Reed 15 Aug 2012
After having some time to think about the possibility of Crohn's and what this means for her I'm scared to death but hopeful. It is nice to finally have an answer because I was starting to think we'd never find one. Once she has the scope to determine the extent of the disease a treatment plan can be discussed. Her doctor is extremely thorough (praise God!) and I'm confident she'll treat the disease aggressively in order to get Alana back on the right track. We've decided not to tell Alana anything until after Christmas. I want her to get through the holidays with a happy heart and no worries.
I do know a handful of people with Crohn's, all diagnosed as adults, and all have experienced different levels of the disease. I'm not sure what to expect with Alana but I do feel like we got our answer just in time. She's really becoming easily fatigued these days and doesn't enjoy going out and doing things that she used to. She doesn't even get excited about dance anymore because she just tires out too easily. It just isn't like her and I miss her bouncing off the walls, lol.
Anyway, I think the shock of hearing "positive" is finally starting to wear off and I'm ready to deal with what the future holds.
I have to agree with Sarah, I'm glad you finally have an answer and I hope that now you can begin to move forward in dealing with it and treating her. I'm sorry it wasn't the answer you were hoping but it is an answer and you can take steps to help her get better. At least it's not so rare that you don't know what to do.