NEEDED: Any thoughts about kids and swollen glands and liver

[mykidsand_i]

OK, I'll start from the beginning. This summer, my 6 year old daughter had crazy fevers, most of the time around 101-102- off and on every 3 weeks or so. They'd show up and last for a few days, then go away. When she had them, she'd be tired, crabby and very swollen lymph nodes in her neck. I never thought anything about them, other than they were probably just some minor illness that her body took care of. Only one of those times I took her in, due to the large amount of swelling in her glands. That time we saw a Physicians assistant and she told us that it was just some type of virus and it would go away. there was bloodwork done, and her white count was high- in the 15,000 range (normal is around 5-6 thou)

All of the beg. of September my daughter had not been herself. She's craby, lacking energy and starting to get these odd fevers again. Sept. 16th she came home from school complaining that it hurt to swallow, she had a fever, her glands (lymph nodes) were swollen and so right to bed she went. When she woke up, she had a fever of 104 that night. The next day was a Friday and I, of course, kept her home from school. She hadn't felt well and I thought it was strep, so I made an appt. with the on call Dr. for that afternoon in the clinic. We went in, my daughter was having a hard time breathing by this point and her fever was 104.8 and she'd had motrin 1 hour before. That Dr. told us she had a 'bacterial throat infection' and sent us home with medicine. She told us to come back on Monday if she wasn't getting better.

Monday morning I took her in to see her regular Dr- a pediatrician who is great with her and I've have had no complaints at all about him! He says we need more blood work and he tests for mono. The mono test comes back negative, but he still suspects that it's mono. Her blood test 'doesn't look right' as he says, but no other statement is made about it. He says to bring her back in on Friday and allow her to sleep and feed her what ever she'll eat.

So, Friday we go back and her 'blood test/white count' still doesn't look right and she still tests negative for mono, but he still thinks it's mono. At that appt. we find out that her liver is enlarged. I start to worry, but he says that if it's not painful or larger than I shouldn't need to worry. He tells us to come back again on the following Friday (which is this coming Fri. the 1st of Oct). If her blood tests come back negative for mono, he says he'll be sending us to the Cancer center for her to get more testing, which is spinal tap and or bone marrow testing.

I am nervous, so I start checking around online (which is a big mistake, because there is SOOOOOOOO much false info. or info. that doesn't make sense to her case) and now I'm even worse than I was before. I almost wish that there was a law againsed publishing health info. unless you are trained in the field that you post on, because some people know nothing, but act like they know everything.

My trusted websites are from Mayo Clinic and our local children's hospital and cancer center. Also, web md. I refuse to go elsewhere for information. But, even with those sites, the info. is such a 'broad statement' that there are some things that don't necessarily fit with my daughter.

Anyways. I am currently stressed about the fact that this may be one of the lymphomas or even leukimea. I want things to move faster with all this testing, but I don't want unnecessary testing either. I'm really wanting to find out, but can't imagine what she'd have to go through to get bone marrow! And if that test isn't needed, then by all means lets get it figured out NOW, but the waiting game for all these blood tests has gone on for close to 2 full weeks now.

I've been told by 2 Dr.s that the mono test sometimes doesn't show positive until the 2nd or third week? How often does that happen? How much longer do i let the blood tests go on before I, myself, finally say- this is enough lets get this figured out with other tests NOW. I know the earlier cancer is found, the better and I know that a month is too long for her to be sick and not have it be something other than mono- but nothing is showing up as mono.

All of her symptoms could easily fit mono- but with that test coming back neg. every time, the symptoms also fit some other pretty scary things too! Cancer is a scary word for anyone. I am so sick of this waiting game. More bloodwork on Friday, to see if mono has ever been in her system.

I believe the Dr. is right to continue with the blood work a few times- but when is it enough? She's missed 8 days of school and is still not much better.

Her symptoms right now are: low grade fever (100.5-102), enlarged liver, enlarged lymphnodes (all over- her neck, her armpits, her lower stomach), tired out, waking up drenched in sweat, lack of appitite, swollen throat that is still red (has been red and swollen for 2 weeks now).

 

[tnmt]

definitely sounds like mono. that is how my son did when he had it. hope they find out for sure what it is.

 

[The Mystery Machine]

Sorry about your dd. That sounds so awful.

Your doctor sounds like he is taking the appropriate course of action, I think. It does sound like mono. I hope you get your answer Friday.

 

[Hillbeans]

Wow...i'm sorry you're going through this, and your poor daughter.

I would stay off the internet, scary stuff out there. Sounds like you are getting good treatment at your doctor, unfortunately you really need to wait to see what the results are. I know it's easier said than done. Please keep us updated.

 

[Kae]

My friends son went almost 2 months before the mono test came back positive. But the doctor was very sure that is what it was, so they treated it as mono.

Kae

 

[kelleyrn2000]

I'm praying you get some answers soon, hopefully it's just mono! In the meantime, it may not be a bad idea to get a referral to an infectious disease specialist. A friend of mine is planning to see one coming up, for her dd. She had episodes of fever and severe bone pain in her legs and high white cell counts. She has has had bone scans and multiple blood tests (finally came back to normal) and the infectious disease dr is the last step supposedly to see if there is something rare going on.

 

[MinnieTink]

I'm sure you are nervous. I will say a prayer for your family. Please keep us posted.

 

[DebbieB]

When I started reading your post, the first thing I thought of was mono.

 

[cm8]

I hope that your daughter gets to feeling better and that she can get an accurate diagnosis for treatment

 

[taximomfor4]

With mono, the spleen often enlarges, so maybe that is what has the dr. looking at other things...although the splenic enlargement can take a while to develop, and then a couple more weeks to go back down. When my dd had mono, they tested for 2 things,Mono will raise certain blood cells but not others.

Also, most people have mono has a young kid, so show positive in the titer...and that is probably why MORE people don't get it as a teenager/young adult. If they get it young, it doesn't tend to sicken them to the point where we notice it's mono.

I feel awful for you, in the face of all that testing. My youngest had low fevers that led me to quit my job when she was 9 months old. (After months of sporadic attendance). At some point, the fevers just stopped. The difference, however, is that her fevers were lower and she got them just sporadically (4-5 days per week).

Just don't read on the internet, go on the assumption that it's viral because of the HIGH fever, until you are told differently. I think this kind of thing is absolutely the hardest part of parenting.

ETA: For the more specific mono tests, they look for your body's reaction to the virus causing the mono -- so they often won't show positive till the second or third week of illness. Also, if it is mono, she might be through the worst of it -- the swollen lymph nodes, sore throat, and usually even the fever are gone after the 1st couple of weeks as well.

 

[ez]

My daughter had mono when she was five...she had been running a fever everyday for 2 weeks, although it wasnt getting real high. If I remember correctly, she tested negative for mono in the office but on her bloodwork lymphocytes were high or something. We are in Florida and he had to send her bloodwork to California, about 10 days later it came back acute epstein bar. She wound up with strep throat for like 4 straight months after that.

 

[crazymama]

Hang in there! It certainly does sound like mono so hold onto that possible diagnosis and stay away from that darned internet. Anyone with two fingers to type and a vivid imagination can portray themselves as an expert! The "net" is certainly a blessing AND a curse!

 

[mykidsand_i]

OK, we went to see her Dr. today kind of at the last minute, because she woke up this afternoon with a swollen stomach. She was complaining of pain. He sent us to the ER to get her liver 'asperated' and the dr. at the ER drained it down to a 'tollerable size' is what he called it. They also did bloodwork. Not just to test for mono AGAIN, but to check her blood levels. Her white blood count is way high and her Dr. said that the numbers aren't matching even if it is 'mono' her blood levels look off. He said they usually don't get like that for mono- so he's wondering now if she has something else AND mono, or if it's something else all together.
To top it off, my other daughter (who's 8) came home with a fever today (and the Dr. says that it's not related, because we know my 6 year old is having other issues- not just some normal catchy virus or bacteria- she's been tested for all that and it's all negative).

 

[dis-happy]

I know 2 children who had symptons of repeated high fever and swollen glands and did end up in treatment for something more than mono. If your doctor is ordering further testing (and it sounds like he is) I would be requesting that the appts. be made at the best Children's Hospital in your area (even if you have to travel a bit to get there). Hoping she feels better this weekend.

 

[golfgal]

OK, we went to see her Dr. today kind of at the last minute, because she woke up this afternoon with a swollen stomach. She was complaining of pain. He sent us to the ER to get her liver 'asperated' and the dr. at the ER drained it down to a 'tollerable size' is what he called it. They also did bloodwork. Not just to test for mono AGAIN, but to check her blood levels. Her white blood count is way high and her Dr. said that the numbers aren't matching even if it is 'mono' her blood levels look off. He said they usually don't get like that for mono- so he's wondering now if she has something else AND mono, or if it's something else all together.
To top it off, my other daughter (who's 8) came home with a fever today (and the Dr. says that it's not related, because we know my 6 year old is having other issues- not just some normal catchy virus or bacteria- she's been tested for all that and it's all negative).

I would ask for an appointment at the best medical facility in your area-preferably something like the Mayo Clinic if you can. They see all kinds of weird things and most likely have seen something like this before. You also have the benefit of having all of your appointments in the same place in a relatively short period of time. Are you anywhere near Mayo or Johns Hopkins?

 

[krcit]

I have no idea what it could be but wanted to tell you I'm thinking of your little one and praying it is nothing serious.

 

[Darcy03231]

Has your DD been tested for Lyme's Disease? I ask this because DD had similar symptoms back in June. We ended up in the ER on a Friday night and they tested for just about everything (except that). I do have to give the ER doctor credit though because he did ask if she'd been in the woods, tall grass, camping, etc. and based on our answers (she doesn't walk on anything that's not man-made) he didn't think it could be Lyme so he didn't test for it. Her mono test came back negative, but he still thought it was mono, even though some of her symptoms didn't go along with mono. He said you can have quite a few negative tests before you get a positive one.

After a week she wasn't getting any better so we saw our doctor, who decided to test for the Lyme anyway. She repeated the mono test too. Turns out DD had both mono and Lyme (still haven't figured out how she got that one). She had to take an antibiotic course for 30 days and was then fine.

If a Lyme test hasn't been done, I would insist on it. Its a simple blood test.

 

[sparklynails23]

Prayers and hopes for a speedy answer

 

[TeresaNJ]

Honestly, I think you've waited long enough, and if it were my child I'd be driving to the nearest children's hospital come Monday. My friend's 5yo son was being treated for "ear infections", "swollen glands", "throat infection", "throat abscess", etc., off and on for weeks, when finally a biopsy was done of the supposed throat abscess. It was none of the above. Hugs and prayers for your daughter, and hope you get an accurate diagnosis of her illness asap.

 

[mykidsand_i]

Yes, we have a good Children's hospital in about a 50 mile distance from us. It is highly ranked, not as good as Mayo, but much closer with great children's specialists. Mayo is a 4 1/2 hour drive from us (we checked on it today) and I don't think that a sick child going on that drive will be the best- especially if she does need further treatments or needs to go back frequently. I, myself, made an appt. at the children's hospital for her next week. That way, these new tests will get enough time to see what they are- and if we find out nothing, we keep the appt...if we don't then, we go.