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Old 09-04-2003, 08:22 AM   #1
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Red face 3 yr old with EBV/Mono...Help!!

My three year old was just diagnosed with ebv/mono. We have spent the last week in aned out of hospitals with the diagnosis being between KD (kowasaki disease?) or mono. He than tested positive for ebv an it was than narrowed down (by his symptoms) to be mono! I am looking for any advice/tips or websites/bulletin boards for young children with mono. I am an exhausted, frustrated, helpless Mom at this point and any advice or tips would be great! I have heard this can on for months with small children and have had to take a leave from my job (no big deal) to be home with him until he is better. I just feel sooo alone and helpless..........boo-hoo. Thanks in advance for any advice and feel free to email me too!
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Old 09-10-2003, 12:23 PM   #2
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i'm so glad i read this. i have an 18 year old son that is so very ill. i too, have much respect for parents of terminally ill children.

he was first diagnosed with bronchitis and possible pneumonia. when his throat swell shut i rushed him to e.r. they gave him an iv of fluids and prednisone. this is when his blood test came back with mono.

he had another steroid injection on monday, and is currently taking prenisone orally (which is very difficult to get done). his kidney and white count are elevated. the doctor did a throat culture to rule out possible strep. she also prescribed a strong antibiotic incase it is positive.

we are on day 12. his fever broke 3 days agao. he is up thru the night complaining of head/neck/body aches and sore thoat. he is so very ill. it is very frightening because he is not getting better. it must take a lot of time. we see the doctor again tomorrow.

i am so worried and exhausted. i cannot amagine caring for a small child with this. you both must be exhausted and worried sick. my heart goes out to both of you. i hope your children are well soon.

thank you for your post, it helped me gain a little knowledge to this very, very debilitating illness.
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chronic back, shoulder, neck, arm pain and numbness. fatigue, dizziness, fainting, low blood pressure, hypothyroid, hypoglycemia, tenderness thru out body. polycystic ovarian disease.
l2/02:mri central disc protrusion at L2-3 (4mm) & L3-4 (4-5mm) with right paracentral disc prtorusion at L4-5 (5mm) & l5-s1 (4mm) causing mild central canal stenosis, osteoarthrosis is also noted at L-4-5 and L5-S1. There is mild neural foraminal stenosis at these levels.
4/03 diagnosed with fibromyalgia/chronic fatigue;
5/03 c1c2-c3 3mm disc protrusion.
8/03 quit work after 32 years; piddling around the house; love to garden, but kills me for days following

 
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Old 09-10-2003, 02:44 PM   #3
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Thanks to both of you who replied...We are doing much better over here. His fever finally broke and today was his first full day with no fever. He seems almost back to himself except for redness in face and a bit of fussiness. We are taking it slow but coming along fine! Good luck to both of you and please keep me posted as I will you with this board.

Take care,
Beth
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Old 09-10-2003, 06:28 PM   #4
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Strep test negative here...Staph test still pending just to make sure!! Am hoping to hear from the doc tomorrow on that issue. We are trying to rest as much as possible but as a three year old he definately finds it hard to know when he needs to settle down! During his periods of feeling good, he just goes bonkers and runs till he drops...than he rests. He is actually spending the evening at my Moms house tonight and we are having a little break at our house. My 10 year old was in need of some attention and we all needed the rest. She said hes doing fine and only lives five minutes away if she or my son needs us. It is a much needed break and hopefully a good nights rest for all. Take care and thanks for listening once again!

Beth
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Old 09-11-2003, 09:49 AM   #5
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good morning guys:

called the doctor yesterday wondering if we should admit him. his strep came back negative. she assured me that he should not get any worse.

last night (or really it was this morning at 2:30 a.m.) the fever began again, so i gave him the tylenol, ice pack for the headache and tried to soothe him a big. he is so sweet and i have him in my bed because i can't sleep otherwise worrying and listening for him. i have a back injury so it's kind of like the blind leading the blind. his breathing is the most troublesome.

anyway off to the doctor. thanks for your encouragement. someone mentioned hodgkins being related to mono and that i should have him tested for this. has either of you heard of this?

talk to you soon. thanks again!
__________________
chronic back, shoulder, neck, arm pain and numbness. fatigue, dizziness, fainting, low blood pressure, hypothyroid, hypoglycemia, tenderness thru out body. polycystic ovarian disease.
l2/02:mri central disc protrusion at L2-3 (4mm) & L3-4 (4-5mm) with right paracentral disc prtorusion at L4-5 (5mm) & l5-s1 (4mm) causing mild central canal stenosis, osteoarthrosis is also noted at L-4-5 and L5-S1. There is mild neural foraminal stenosis at these levels.
4/03 diagnosed with fibromyalgia/chronic fatigue;
5/03 c1c2-c3 3mm disc protrusion.
8/03 quit work after 32 years; piddling around the house; love to garden, but kills me for days following

 
Old 09-11-2003, 03:01 PM   #6
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In the long-term there is some research to suggest that EBV can be linked to certain cases of leukemia yes, however, your son has been diagnosed with mono right now and is in the acute stages of this. I really do not think you should think about testing for anything else right now, but concentrate on helping him get over this and it could take a long time. It could take him at least 6 months to one year to get over it fully.

Although EBV still lives within the body after mono, most people go on to make a full recover with no further health problems.

Good luck

 
Old 09-11-2003, 10:02 PM   #7
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wow sarah thanks for the info. i am so thankful to report that they hospitalized him. his tonsils are so huge and swollen that he cannot swallow solids. he is on a iv with steroids, antibiotics and fluids. they are giving him vicodin plus morphine for the pain. his neck is twice the normal size. i will keep in mind about the leukemia. how frightful. i lost a brother to hodgkins that was told it was mono for months... and by the time the hodkins was diagnosed it was to late, and in the fifth stage. he was 25 when he was diagnosed and 31 when he passed away.

any other info you have would be greatly appreciated. i am so thankful that he is in the hospital. his fever today was 102.5.

i am going to bed, i haven't slept in days.
__________________
chronic back, shoulder, neck, arm pain and numbness. fatigue, dizziness, fainting, low blood pressure, hypothyroid, hypoglycemia, tenderness thru out body. polycystic ovarian disease.
l2/02:mri central disc protrusion at L2-3 (4mm) & L3-4 (4-5mm) with right paracentral disc prtorusion at L4-5 (5mm) & l5-s1 (4mm) causing mild central canal stenosis, osteoarthrosis is also noted at L-4-5 and L5-S1. There is mild neural foraminal stenosis at these levels.
4/03 diagnosed with fibromyalgia/chronic fatigue;
5/03 c1c2-c3 3mm disc protrusion.
8/03 quit work after 32 years; piddling around the house; love to garden, but kills me for days following

 
Old 09-12-2003, 05:01 AM   #8
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I am sorry that your son had to be hospitalized but it is the best place for him to be. I had mono myself in 10th grade and was also hospitalized for two weeks. He will be ok, and will heal better there. And...you can get some rest too. My Mother died of luekemia when I was 10 and the drs. thought it was mono for a while as well. That is rare however now as they should do a blood test right away to rule that out for you. Ask the dr. in the hospital to do that for you and voice your concern. Remember, they are there for you...do not feel that they are YOUR boss. Tell them what you want to see done! I will pray for you and hope all is well. Get some rest, and keep us posted here please. My son is doing much better now and just returning to normal. I think it is harder for a teenager to get back to normal. Good luck honey and take care of you too!

Beth
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**This too shall pass** (I hope)

 
Old 09-13-2003, 09:26 AM   #9
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hi beth, hope your babie is doing better. i hope you are holding up too!

i am glad to report that i have had two nights of full sleep! i feel much better. they are releasing him today... and i'm a little scared. he is still running a fever off and on. i'm terrified once the iv's come out that we will be back to square one. i am trying like hell to be positive. my sister came down and cleaned the entire house for me! i owe her big time!!!!!!!!!!!

one thing i did learn was i was feeding him alllllll wrong! he can only have clear, cold foods for the next five days!!! also red jello, red popsicles, etc are out, in case of bleeding. he is still unable to breathe thru the nose. and the ent surgeon is telling me that his tonsils and adenoids will need to be removed once he is better.

i'm off to the hospital to get my sweetie. thanks to everyone for the info and encouragement. i feel so much better now, that i have slept! also the doc was very nice about running the labs for leukemia and hodgkins (especially becos of my family history). he also has had the best care at the hospital. the nurses were so helpful and nice.

__________________
chronic back, shoulder, neck, arm pain and numbness. fatigue, dizziness, fainting, low blood pressure, hypothyroid, hypoglycemia, tenderness thru out body. polycystic ovarian disease.
l2/02:mri central disc protrusion at L2-3 (4mm) & L3-4 (4-5mm) with right paracentral disc prtorusion at L4-5 (5mm) & l5-s1 (4mm) causing mild central canal stenosis, osteoarthrosis is also noted at L-4-5 and L5-S1. There is mild neural foraminal stenosis at these levels.
4/03 diagnosed with fibromyalgia/chronic fatigue;
5/03 c1c2-c3 3mm disc protrusion.
8/03 quit work after 32 years; piddling around the house; love to garden, but kills me for days following

 
Old 09-16-2003, 02:07 PM   #10
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Hope all is well with your son now juju!

Just havent heard from you (i am sure you are busy). Hopefully things are getting somewhat back to normal for you as they are for us here. Just expect it to take a while and let him get lots of rest. Hope your spirits are high!

Beth
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**This too shall pass** (I hope)

 
Old 09-20-2003, 03:51 PM   #11
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hi beth!!!! wow.... this whole thing has been exhausting.... how is your baby? how are you feeeeeling? i'm dragging!!

my son is doing better, however he has lost 32 pounds. he's 6' and now weighing in at 165. he is eating and asking for his favorite things. but anything he does, weakens him. he just completed the steroids and still taking flagyl (which i thought was really, really wierd, but they said for the bacteria), and biaxin (the antibiotic), all of these drugs were from the ears, nose and throat specialist.

he is unable to return to work yet, he's been out now for a month. it was just a part time job at the mall, so i could care less if he ever returns. it was his spending money. they want to remove his tonsils in a few weeks and i'm a litttttttttle nervous!! they have said since he was so ill, to watch for a relapse. but it's very hard to argue with an 18 year old! he wanted to take a semester off before going to college, and so glad we did that! he would have been so far behind, he would have had to drop.

i'm dragggggging. i have some health issues too. i have ebv so wondering if i'm having a few of the mono symptoms. i'm drinking alot of caffeine, and we are both sleeping 12 hours a night!!!!

take care darlin.. sorry it took me so long to get back to you. i haven't been checking my emails! and hope your baby is doing much better. this is one, really, really scarey disease!
__________________
chronic back, shoulder, neck, arm pain and numbness. fatigue, dizziness, fainting, low blood pressure, hypothyroid, hypoglycemia, tenderness thru out body. polycystic ovarian disease.
l2/02:mri central disc protrusion at L2-3 (4mm) & L3-4 (4-5mm) with right paracentral disc prtorusion at L4-5 (5mm) & l5-s1 (4mm) causing mild central canal stenosis, osteoarthrosis is also noted at L-4-5 and L5-S1. There is mild neural foraminal stenosis at these levels.
4/03 diagnosed with fibromyalgia/chronic fatigue;
5/03 c1c2-c3 3mm disc protrusion.
8/03 quit work after 32 years; piddling around the house; love to garden, but kills me for days following

 
Old 09-20-2003, 04:30 PM   #12
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Hey:

Glad to hear you are both doing better. 32 lbs is quite a bit of weight but I am sure it will come right back on. My son is doing better but just today spiked a fever again out of the blue 103. I am worried that the whole thing is starting over so we are headed to the dr, probably first thing Monday morn if it continues tomorrow. Of course it could be anything but I am naturally paranoid!! I am sorry to hear you tested positive for ebv, I am wonderng how that happened as I am having my own health issues! Did you catch it from your son?? I spent a few days in the hosptial myself last week for a ruptured ovarian cyst and am still feeling uncomfortable and tired. My doc says it is very normal for a woman under stress to develop these type of cysts and that it will now take care of itself. Without my husband I would so be up a creek with no paddle thats for sure! We are still hoping I will not ultimately need surgery as we have no insurance so between the baby and me it hasnt been a fun few weeks. My main concern is my son now again since he got the fever seemingly for no reason today again! We will be watching that and I will keep you posted! Hope your son gets better and better and that you feel good too. Just hang in there girl!

Beth
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**This too shall pass** (I hope)

 
Old 09-20-2003, 05:54 PM   #13
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OH MY DEAR BETH:

that's terrible about your son. they told us, mono can come and go for 6 months to a year!!!!! and that my son would have to be monitored carefully. it's nothing to mess around with, because it effects the kidneys and spleen. how are your son's tonsils? check to see if they are enlarged (if he'll let you). i hope for your sake that he is not having a relapse, but that is what it sounds like to me. he has to feel rotten, 103 is high.

it is so difficult at your son's age to reason with them and "con" them into staying down!!!!! my son went out to "get a taco" with a friend, he'll come home, and he won't leave his bed for the rest of the night. also... in the hospital, they gave my son popsicles... don't know if your son will eat them, but it's worth a try to keep him hydrated. they told us nothing with red, incase they vomit, they can't tell if that is blood.

the cysts!!!! i have (or had) the cysts!!!!! i have polycystic ovarian disease. they were very painful at times. i had one removed laproscopically (spelling is wrong, but thru the naval). two months later, had more problems, and switched gyno's. she found more. she went in thru the abdomen and removed part of each ovary becos my ovaries were like strawberries, loaded with potential cysts. it was terrible, and through me into menopause like symptoms. i had a high protein reading on the "gilda radner" ovarian blood test, making me at risk for cancer. but even after the surgery, i still got cysts! i can tell when i have them. anyway, my current internist, said if they would have put my on progesterone (go to dr. lee's website) cream, they could have avoided the surgery. since i have been using it, i haven't had any cyst like symptoms! so you might try it. you poor thing. especially with everything you have going on. also, they are usually caused by estrogen dominance.

hang in there and keep me posted!!! i will be saying some prayers for you and your son. i'm glad your husband is supportive. he is very lucky to have you!
__________________
chronic back, shoulder, neck, arm pain and numbness. fatigue, dizziness, fainting, low blood pressure, hypothyroid, hypoglycemia, tenderness thru out body. polycystic ovarian disease.
l2/02:mri central disc protrusion at L2-3 (4mm) & L3-4 (4-5mm) with right paracentral disc prtorusion at L4-5 (5mm) & l5-s1 (4mm) causing mild central canal stenosis, osteoarthrosis is also noted at L-4-5 and L5-S1. There is mild neural foraminal stenosis at these levels.
4/03 diagnosed with fibromyalgia/chronic fatigue;
5/03 c1c2-c3 3mm disc protrusion.
8/03 quit work after 32 years; piddling around the house; love to garden, but kills me for days following

 
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