Hey Moms - I'm in desperate need of a Dr. who might be able to help. My 16 yr. old daughter was diagnosed with mono back in September. The Dr. just said that she had mono so she should stop tumbling but she could continue to do all her other activities. She trudged on with weakness through cheerleading and getting awesome grades at school but she felt terrible. We saw another Dr and kept in touch throughout and a few months later she was better - not cured, but better. A few weeks ago, she started feeling bad all over again. The Dr. said she had a bladder infection and sent her home with an antibiotic. A few days later, the Dr. called and said that she didn't have a bladder infection but it was probably just reactivated mono. We did blood work and that all came out fine. Now my daughter is struggling to make it through the days. She is trying to keep her high GPA and going to school but she is vomiting every time she eats and feeling awful. I feel like Mono is the easy thing to go to and they want to get us out of the office so they can move on. I'm not sure what kind of Dr. to go to but I want another opinion other than the ones of the Dr. in my family practice office. I've been terribly disappointed. It seems like I'm the Dr. here and they do whatever I ask except for cure her. She has taken steroids and she is taking nausea medicine. She doesn't want to miss more school because her grades will suffer.
Sorry this was so long. Any suggestions?
Thanks for your help Moms - we went to an internist, Dr. Anderson, as was suggested. She tested everything under the sun. She started her on stomach acid meds to help the vomiting and within the week it got better. The tests showed no mono so we are not even sure if she ever had it. Nothing else showed either, so at least we knew what she didn't have. She continued to get rest and withiin a few weeks, she was doing much better. In hindsight, I think I would have removed her from school and cheerleading in the fall to let her recover.
Hey -
As others have said, I would recommend seeing an internist. What I wanted to let you know is - I had mono in college and I was sick for a year. It really just took forever for me to feel better. I quit doing all activities because I just did not have the energy - all I wanted to do was sleep all the time.
Good luck,
L.
About the vomiting: have her eating habits changed? Does she feel full after just a couple bites of food? Does she not feel hungry even though she hasn't eaten in awhile?
I'm asking because after a severe virus, a condition called Gastroparesis can develop. It can be caused by damage to the vagus nerve after a viral infection. My dd has it, and it was caused by 3 different viruses that she got around the same time.
I would definitely take her to a gastro-enterologist (GI specialist) since she's vomiting frequently. And specifically ask about Gastroparesis. If you google it, you may find that some of her symptoms match.
In addition, you should know that the routine blood work that many doctors do looks for antibodies in the white blood cells. My dd had many many blood tests, all of which were "normal" even though she was so very sick. Finally we saw an infectious disease specialist who did red blood cell testing and we finally got the results and diagnoses. Many illnesses don't show up on a traditional, quick, white blood cell test. It turned out that my dd had 3 forms of Lyme disease. Nothing had shown up in the Lyme tests they did, because her body was not producing any antibodies to fight the Lyme. The Lyme parasites had invaded and were existing by the millions in her red blood cells.
I completely understand what you mean by thinking you're the doctor. That's the way it often is. My dd now has 3 official diagnoses, which are very difficult to treat. I spend hours researching and writing down questions and suggesting things to doctors and insisting on tests.
Keep a journal of her symptoms and a food log and start noting times, food eaten, activities and mood and behavior right before and after a vomiting episode. Keep another journal of questions to ask and bring those journals to a GI and infectious disease doctor.
Don't give up. I know it's disappointing and frustrating, but you will find a doctor who listens at some point.
What you are describing sounds just like my sister when she came down with Epstein Barr. She has recurring bouts with it, but it is managable, much like Chronic Fatigue Syndrome. I was going to look up more info for your, but JL did a great job. I would try the ER and let them do all the blood tests There is a specific blood test for Epstein barr, but its not commonly done, and if it isn't active, then it won't show up, but my understanding is that once you have it you will always have it. Good luck, its hard to manage, but the more she pushes herself, the longer it will take to get better.
Mono wipes out the immune system and it isn't unheard of for those who get it, being down for the count for months or more.
Often when the immune system is shot people can come down with something called EBV or Epstein Barr Syndrome. I'm not diagnosing nor am I doctor, but I have heard of this virus being the cause of Mono in young adults and children. When it does occur, you can have symptoms such as you described and a very long and complicated recovery from Mono. Check into this for more information. If this sounds like your daughter, you definitely want to get her to another doctor who can help. While not proven, some suggest EBV is the cause of chronic fatigue syndrome (not sure on cures or treatment for that) and certain cancers so getting testing to confirm this is important.
See:
http://www.cdc.gov/ncidod/diseases/ebv.htm
http://www.livestrong.com/article/10341-treat-epsteinbarr...
http://emedicine.medscape.com/article/963894-overview
http://labtestsonline.org/understanding/analytes/mono/tab...
And I agree, get a second opinion if your current doctor hasn't already considered this. Unfortunately, I do not have anyone to recommend in your area. If you have no alternatives through your insurance provider nor recommendations from a friend, have you considered just going to the ER? Hope this helps.
I read the previous post and agree that you should also consider negative reaction to the Gardisil vaccine if she's recently had it. Go to www.mercola.com and type in Gardisil and you'll find lot's of information on side effects etc.
last summer, I tested negative for mono...but positive for Epstein-Barr. I consider this insane....because E.B causes mono. WTHeck? I also found that not many people are familiar with this, so I just described my illness as having mono....it was just easier. :)
regardless, I was FatigueCity for 2 full months. My dr okayed working full-time, & my long daycare hours just knocked me out! No repeats on this illness, please!
I like the answers from the 1st three posters. Good advice, good suggestions. I want to mention one more thought on the nausea (based on her age): ?pregnancy? Please, please, please....no offense intended....simply mentioning one more thought on nausea. Peace to you.
I feel so bad for her. I think I would call my insurance provider and get a listing for everyone who takes your insurance and then call them. Find a doc who will do a complete workup on her.
I know a few kids who have had Mono and they were back to full schedules in a couple of months if they got plenty of rest and were careful about getting other illnesses, hand washing really does help...lol.
My granddaughter was in the hospital last July with Strep. The pediatrician tested her 3 different times for Mono. He was sure that was what it was. All 3 tests came back negative. They were done at both his office and through the hospital while she was in. Her right tonsil was pushing the left one out of it's way and her Uvula was completely hidden. She had 102+ temp for over a week and was on IV Rocefrin. She had to use Mr. Thirsty, the suction tube, just to get her saliva out of her mouth since she had no room to swallow. I thought she was going to die. I truly did.
She weighed about 56lbs when she went in and when she left she weighed 43lbs. She was on the show team at the gym, took regular tumbling, tap/ballet, and Hip Hop classes. She also did BMX and soccer. She also got a part in Cinderella in September.
She took time to rest. I let her go to bed as early as she wanted, she could sleep in on the days out of school as late as she wanted, sometimes it would be 10 or 11 before she woke up....
We dropped BMX and soccer and haven't gone back yet. She is doing all her classes at the gym since Cinderella finished in October.
The point is, if she had not gained her stamina and her weight back we would have been seeking other docs to find out what was going on. I think your daughter has something more going on and only a doc who is a diagnostician can fully appreciate all her symptoms and do the proper testing to find your answers.
Every field has at least one of those docs who are just gifted in getting to the bottom and finding the answer. I hope you find the one you need for your and your daughter's peace of mind...and body too.
Find a good Infectious Disease Doctor!
They deal with ALL these types of illnesses.. There an auto immune doctor... I've been to a couple (for epstein barr and I had mono as a child)....
PROMISE you, find a Infectious Disease.. Bypass all these other doctors and go to this type of specialist!!!!
Keep us updated~
I would seek out an "integrative" MD or DO. Something is going wrong somewhere and I would want much more extensive testing, blood work, etc. Mainstream medicine hasn't helped us much with chronic issues (particularly autoimmune).
In the meantime, with the vomiting after eating, I would want to rule out gluten intolerance or celiac disease. That can cause extreme fatigue too.
How are her blood sugars?
Did she have the Gardasil vaccine (HPV)? I would look at some of the adverse effects (even the more rare ones).
Good luck and I hope you can figure this out. How frustrating.
You may want to see Dr. Anderson at Stonebridge Internal Medicine in McKinney. She is very thorough.
Go see Dr. Talatala. He is an Internist. His very good and very thorough. His office is in Carrollton. His number is ###-###-####.
