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Help me help my chronically ill 11 year old...
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Help me help my chronically ill 11 year old...

I have three children and I myself am not healthy. I suffer from CHF, fibromyalgia, and severe seizures. My middle son who is 11 years old and has been a very active and healthy boy. He does have some skin issues and sensitive skin, but other than that no real problems. Recently he has become very ill. About 8 weeks ago I took him to pediatrician regarding a spot with his exsema that looked infected. They said he had staff infection from it. They also gave him mmr booster, flu mist, and tetnus vaccine he was due for. They gave him septra. Later that same evening he got very ill. He was unable to move around due to dizziness and very sick to his stomach. I called and brought him to dr the next day. They changed antibiotic, but no help. After blood work showing his wbc was way to low and his platelets were way to low they hospitalized him in the local hospital. We were discharged after getting fluids for dehydration. They gave us meds for his upset tummy. No change. A week later we were sent to children's hospital in a bigger town. They did some testing. He came dangerously close to needing donor platelets. Then the dr's tell us he tested off the charts for EBV. He may be ill for a year. He still has not improved at all. His WBC is still way to low. We had a brain mri and will find out monday the results. I want some ideas of what else to check. He went from a basketball playing never missed a day of school.. now he has missed over 2 months of school. I am worried about my child and need a direction. Do I push for more answers? It seems I hear alot of people say that just because our EBV is high doesn't mean much except that we have all had it at one point. Could that be all that is happening? Please help me!!!
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Avatar_m_tn
What you are describing is something called thrombocytopenia, which is a fancy way of saying low platelets.  The theory I have heard for this is because of antiplatelet antibodies, meaning that the immune system destroys them, this is a rare complication of EBV.

As far as WBC, it is odd to be low, usually WBC is elevated with EBV, not low.....Look at the numbers, depending on the lab WBC over 9,000-11,000 is usually elevated.

You didn't say this specifically, but if he has EBV, this means that he has Mononucleosis (a.k.a. Mono).  

Here is link to emedicine on EBV infection, probably way more information than you ever want to know, but it is a very credible source.

http://emedicine.medscape.com/article/963894-overview

Good luck, I hope he has a speedy recovery
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1236893_tn?1408490528
He has Mono and it will take some time until he's better just do as the doctors say
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1548028_tn?1324616046
If you look at my wall, my 11 yr old son became ill and we were told EBV+ in the beginning but none of it seem to make a difference to anyone either.  My son has different symptoms but I truly understand the days turning to weeks and months of no answers.  I feel like I haven't seen MY son since November 22nd.  Everything has changed for him.  I did get a 504 plan in place at the school for a acute handicap child (so they don't hold him back) and we work a lighter load.  He just made it one whole week of school last week.  Hang in there!  I wake up everyday and think today might be the day to get more answers or maybe I will find more answers.  Most days nothing much happens but I never give up.  I am his voice and the only one that can keep looking for answers and pushing for the dr's to help him.  Have made some mad along the way and have met great ones a long the way.  I kept the great ones or atleast the ones that truly care.  Never give up but make them keep looking.  I do know EBV can make you really ill and it can take a long time to get better.  If you need anything or just to talk or vent, let me know.  I so wish you all the very best!  I will be thinking of you all!
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Avatar_n_tn
I can't tell you how much I appreciate the comments. He is still no better. We go back today to the dr to get our mri brain results. He was diagnosed with off the charts EBV. The one thing that sticks in my mind is that he was just fine until he got the vaccines at the dr that day. It was literally a matter of a few hours that he completely fell apart. He has no energy, dizzy, and so sick to his stomach that he can't move. I had a virus the last few days and I said it was God's way of making sure I don't forget how his tummy feels everyday all of the time. I am his only voice and something inside of me is telling me more is happening. Also when it started he had the staff infection too. I think at this point after over 2 months we should see a bit of improvement. I don't get it. Any more suggestions? Any help is appreciated. I'm so glad I'm not alone. Mother3boys
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Avatar_n_tn
I want to add something to the last comment. His WBC has been low, not high. I'll need to see his blood work later today to tell you what they are at and what his blood platelets are today... thanks again.
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Avatar_m_tn
Low WBC is very odd.  With any acute viremia usually the wbc's are high to very high.  
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1548028_tn?1324616046
How did everything go for you guys?  We too got a call yesterday and it made me think of you.  You helped me and you didn't even know it.  We still have issues and need to go to bigger hospital.  Dr. finally reviewed all the tests and said it was important for us to see him.  Gave us an appointment for MAY.  Important to see him?  Anyway, I thought of you, cried a while, called them back and explained all my concerns (nothing medical really just my gut instinct as a mom and that I know my son best!).  I told them how everyone just keeps putting this to the back of the list and I am concerned an 11 yr old will have permanent damage.  Appointment changed to 2 weeks.  I was nice but firm.  Thank you!  When we were finally admitted to the hospital on January 2nd, they called in a Pediatric Infectious Disease dr. (do you have an immunologist/infectious dr?)  She really helped a lot!  She ruled out that it was not the EBV causing the problems but thought it might have started with it.  We too had vaccination a few weeks prior to his illness.  She did many, many tests.  What kind of dr's are you seeing?  Our ped. dr. was just in way over his head.  I came to realize all is okay when it's the run of the mill type of things but when it gets rare or not seen often, they really are out of their league.  I don't know how big of a place you live but no good dr. will ever take offense to second opinion.  Goodluck!
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