R.S. asks from Bessemer, AL on November 24, 2006
16 Year Old Daughter Very Sick
My daugher,Rebekah,is 16 and has been sick for about 5-6 months, but since Oct. 31 has been very sick. She's missed about 3-4 weeks of school. We've taken her to about 5 different doctors and to Children's Hospital 2 other times. Monday she has an appt at Children's Hospital for a bone scan, and Tuesday for an ultrasound to see about cysts on her ovaries that she is taking Yasmin for...to shrink them. Her symptoms are exteme abdominal pain under her ribs, weakness, headaches, nausea, shakiness, constipation, leg pain (she has a knot on her right leg up near the groin area), periods of being very hot, and dizziness. They have tested her for Lupus, tyroid problems, gall bladderproblems, mono, h-pylori (she has had mono and h-pylori in the past), some cancer - although no biopsy yet, and other things I can't remember at the moment. Her spleen was enlarged, but is better now, but her SED-rate, which measures inflammation in the body, is 45 - it is supposed to be around 15, and her blood glucose level is now around 200-250 all the time.....they have tested for diabetes and she doesn't have it.
Does anyone recognize any of this? We are baffled. Rebekah is an A student in the 10th grade who is outgoing and even this sickness hasn't gotten her down. She is a great friend who won an award for "most Christ-like" last year at school. If anyone has any ideas please let me know! Thanks!
R. Scott
1 mom found this helpful
So What Happened?™
Hi Everyone,
We are still up in the air about what exactly is wrong with Rebekah, although right now we are thinking "Sjogrens Syndrome".....pronounced "Show-grins". This is a rare autoimmune disease where the immune system attacks the moisture producing glands in your body. With this you get painfully dry eyes, dry mouth, dry skin, etc. It also affects your kidneys and liver. Right now she has painful knots under the skin on the inside of her right thigh that hurt very badly when she walks. Her blood glucose level is also 200-250, fasting, also. She's been tested for diabetes, but doesn't have that. We have to go to a Rheumatologist next, but it is difficult to get an appt. The next appt. available is in July, so our doctor at Birmingham Children's Hospital is going to call and try to get her in within the next 2 weeks.
Okay, thank you all for the messages and prayers. It has been very encouraging to get them and hear from you all. If anyone knows of anyone who has Sjogrens Syndrome let me know how it effects them please. Thanks!
R.
More Answers
J.T. answers from Nashville on November 25, 2006
R.,
I will pray for you and your family. I understand the stress and anxiety of having a sick child. My son suffers from several disorders that, while not immediately life-threatening, are life-altering with the possibility of life-threatening complictions always looming, just around the corner. He has been unable to attend school since his freshman year, he is now a junior.
As you navigate this medical mine-field, may I suggest you investigate a website known as CaringBridge at www.caringbridge.org . Not only is it a great place to find support, it offers journaling, which is can be very therapeutic for caregivers/parents, it will allow family and friends to stay up-to-date as you move through testing and hopefully some sort of diagnosis and treatment. Truth is it counts down on the constant telephone calls and prevents you from repeating yourself 100's of times a day.
I will continue to pray for you and your family. Let me know if you decide on Caringbridge. I have found the community there to be a great benefit and source of emotional support.
God Bless!
L.D. answers from Tuscaloosa on November 28, 2006
Hi R. this is L. Jones. I Don't know what faith you are of, but if you were here i would have my pastor to pray a prayer of healing over your dauther. You reminded me of the woman with the issue of blood in the Bible. She also went to doctors after doctors after doctors.( Mark 5/25 threw) that might help you. I realize in todays society when man can't do you any good God is just waiting on you to call on him. I will pray for your dauther my sister. I am, just in case you are wondering. Penticoastal Apostilic God will bless your dauther if you believe in him read for me please (Hebrew chapter 11)
P.W. answers from Decatur on November 25, 2006
Have you had the doctors check her lymph nodes? I ask this because the doctor here think that may be what is wrong with my husband and he has some of the same symptoms that you are describing. You are doing the best thing that you can do for your daughter. We have delt with children's hospital in al and it is the best place in the state for children, they will be able to figutre out what the problem is. just hang in there.
L.N. answers from Montgomery on November 27, 2006
Has she been checked for Crohn's Disease? This is an inflammatory bowel disease, it attacks mainly the digestive system, but until diagnosed and treated it can cause everything else to be out of whack, especially the sed rate. I hope you find out what is going on, God bless!
K.N. answers from Tuscaloosa on November 27, 2006
What are your daughters eating habits? The blood glucose levels could be a "rebound" - something sweet eaten - glucose rises - peaks - then drops very low. If her blood sugar is usually much lower, you might want to try changing her diet. Peanut butter or something with protein would be good to help maintain her BS levels. A shifting in BS levels would cause the cold/hot sweats, nausea, shakiness, headaches and vomiting. See if she has hypoglycemia. Sometimes this is overlooked because the BS shoots up so high during a rebound. The Yasmin could be causing the cramping in her abdomin. This is a strong harmone and has made several girls I know sick. Has anyone checked for endometriosis? That is very painful and can cause pain in parts of the body you could never imagine! Has she seen a dietician? If her BS remains in the 200 range maybe she needs an A1C test. Something in the endocrine system is trying to tell you something. I can't imagine you have been to that many physicians with no answers. Wish I could help.
P.R. answers from Birmingham on November 25, 2006
Has your daughter had a screen for ovarian cancer? I've never heard of it in someone so young, but it's worth ruling out.
L.L. answers from Nashville on November 25, 2006
Have the doctors done a CA-125 blood test? You mentioned cysts on her ovaries. My mom had ovarian cancer and the only way to detect it is the CA-125. This is an email that I received recently:
Ovarian Cancer Whispers - so listen... Watch for Pelvic or abdominal pain or discomfort; vague but persistent gastrointestinal upsets such as gas, nausea, and indigestion; frequency and/or urgency of urination in the absence of an infection; unexplained weight gain or weight loss; pelvic and/or abdominal swelling, bloating and/or feeling of fullness; ongoing unusual fatigue; or unexplained changes in bowel habits.
If symptoms persist for more than 2 weeks, ask your doctor for a combination pelvic/rectal exam, CA-125 blood test, and transvaginal ultrasound. A Pap Test WILL NOT detect ovarian cancer.
I pray this is not what it is but the symptoms you mentioned were very familiar and I wanted you to look into this. My thoughts and prayers are with you and Rebekah (love the spelling).
L.
A. answers from Nashville on November 27, 2006
I'm not sure what your daughter has going on, but as a pediatric nurse, it screams infection or some type of inflammatory disease process is going on. Have you taken her to a pediatric internist at vanderbilt? I would suggest going to someone like that so that they will look at the whole picture and all of her symptoms. I hope you find some answers soon and your daughter starts to feel better soon.
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