Oh no, mono!

<p>Grades good pre-illness. Certainly A- B+ range--went down to C's</p>

<p>My D got Mono last spring (she was a sophomore) from some kids in the hs play. She had fatigue for a month or more, and I took her to the doc to find out if she was anemic. The fever and sore throat hit in early July. We again saw the pediatrician, who did a mono test. It came back negative. Instead of repeating it, they did a vast number of other blood tests...6 trips to the lab in 3 weeks. Nothing was positive. She was sleeping every available minute, but kept working as a counselor at theater camp despite the fever and pain. Every night she went to rehearsal for a charity show she does each summer. Somehow, during this nightmare summer, she only missed 3 hours of work. She never missed her rehearsal, and performed with a 103 degree fever. She only did this because the pediatrician told her that there was nothing wrong with her, based on the multiple blood tests. He acted as if she was faking, and told her several times that she should just come back in a month or two. Her fever would swing from 97 to 103 each day. Her glands were badly swollen. I asked and asked the pediatrician to repeat the mono test. He resisted, but finally did it a month later. It came back strongly positive. He apologized, but the damage was done. She should have rested, but did not based on what he said. My D was sick and exhausted for months. She had mono hepatitis, and a greatly swollen spleen as well. She is still on restricted activity in school, because a recent ultrasound showed that her spleen and liver were still dangerously enlarged (in December). She still comes home sometimes and sleeps for hours. She took only one day off from school for this, because she was lucky to have it throughout the summer. Her grades are mediocre at best in this her junior year. It's so important for her to do well, but she's running mostly B's. Hopefully she can rescue the grades this year and do better on the SAt than she did on the PSAT (185). I'm still angry at the pediatrician. We have switched to another doctor. Mono is a weird disease. Some people get just a low fever for a few weeks and feel tired. Some get it as bad as my D. You never know, I guess.</p>

<p>I feel for you, I have a similar situation going on right now with my D16. I am so physically and emotionally exhausted after 2 ER visits, and 3 Dr visits and countless bloodwork in the last 2 weeks.
It all started with chronic abdominal pain. In the first Dr visit on 1/30 they said it was stress induced gastritis and wrote a script for an acid blocker. Ok, it was midterms so I could see that. The next day,1/31 ,she was worse and the Dr said they could not fit her in and take her to the ER. At the ER they did an ultrasound and ruled out pancreatitis, gallbladder attack, and appendicitis. They stuck w/ the gastritis diagnosis and added 2 more scripts.
On Friday 2/2, she awoke in terrible abdominal pain and now w. a sore throat, fever, chills, swollen glands, and neck and back pain as well as shooting pains in her hands and feet and a headache. The Dr again stated that they could not fit her in and that the ER was the best place to follow up since she had just been there. So back to the same ER where they made her wait 3.5 hrs before even taking her BP. Needless to say I was a little irate. After 7 hours there, and IV line, CT Scan, Xrays, and blood draw the dr came in to say that the good news was she did not have a neck injury!!!! Then the Dr said he believed she just had a sore neck and back. I asked, what about the abdominal pain and he said he thought they were separate. Livid with him I inquired about a mono test which he said he had not run bc she had no symptoms of mono. No symptoms, I promptly ran down all of her above symptoms and he asked why i never told him. It was because he had walked out in the middle of her exam and never returned until this moment.<br>
So, he ran a mono spot and pumped her IV w/ antibiotics. 3 hours later still he came back to say the mono spot was negative and that she must have a virus. Probably strep but he didn't know bc apparently a child with all the above symptoms in the ER does not warrant a strep and mono test but should be checked for a neck injury that she says she does not have!! I just took the scripts and left. This Dr never mentioned to us that a mono spot will routinely come back negative in the first few weeks!!</p>

<p>The following Tuesday, 2/6, she was much much worse and I called my Dr and said I wanted a full EBV and mono panel run. After a bit of a hard time they called me back and said ok they would run it. On Thursday 2/8 her PA called and spoke w/ D and said the mono spot was negative but her white cell count was very low. Other tests took until this past Monday 2/12 to come back and when I called the nurse at the office informed me that the Mono spot had in fact came back positive for mono as had all the other tests. In spite of myself I was just relieved to finally have an answer.
Fast forward to yesterday, 2/15, DD is so much worse. Her abdominal pain is keeping her up at night and she cries in pain from her neck and back as well. I have had to wake her several times bc I was afraid she was unconscious. I called the Dr office bc the school has been giving me trouble about her being out (yeah, can you imagine?). I needed a note to be faxed to the school stating mono and told the nurse she is much worse. They said the Dr wanted to see her today.
Today she saw the Dr. I could not go bc I have missed alot of work over this so my husband took her and she went alone. Today, the Dr (who I think did not even look at her chart thoroughly) said that she tested negative for lupus and although she tested for this and that in the mono panel it could be mono or it could be lots of other things. OMG, I cannot take this flip flopping and meanwhile my baby is suffering. What to do? They want to see her next week but didn't order anymore bloodwork and frankly, my trust in the medical profession is wavering.</p>

<p>And to add insult to injury I have had to beg her teachers to provide her with make up work. I am sure that they are thinking she should rest but she has been working hard in this, her junior year, to get her class rank up to the top 5 and she is stressing out about getting too far behind. I cannot believe the lack of support on the part of the school. Other people I know in different districts have been offered tutors for their kids. I just am getting so depressed over this.</p>

<p>beck86nj, my mono was much the same - wicked sore throat not so much tiredness. I actually got straight As for the first time the term I had it!</p>

<p>OMG, momof3stars! I'm so sorry for your D! It sounds really awful. There have been many times during the past 9 months that my D has had mono when she cried from the abdominal pain...but her ultrasounds came back showing enlarged liver and spleen. I feel for you. This process is painful and awful and frightening. I hope you find a good answer for this soon. Have you seen an infectious disease specialist? I think I would at this point. My D is now scheduled to see a Hematologist/Oncologist soon, because her spleen is still swollen and painful after 9 months. She still gets so tired that she just goes to bed right after school sometimes too. Very scary stuff. It's incredibly frustrating when doctors don't take things seriously, isn't it? Good luck to you with this whole thing. Please let us know what happens.</p>

<p>Tanyanubin, thanks for your concern. On Fri I took my dd to my youngest DS' pediatrician as I was just sick of the attitude from our general practitioner.<br>
She continues to be in terrible abdominal pain but her blood tests showed that she is in the end stages of mono. The ped is running a battery of other tests as he says that sometimes mono can make previously existing conditions worse and therefore we might be looking at something more chronic. Unfortunately he was baffled as well but at least he is being proactive and is sending her for a pelvic ultrasound (ovarian cysts he thinks maybe) and is also doing tests to rule out an ulcer or various other stomach and intestinal ailments.</p>