kids health...advise???? I'm stumped!

[mykidsand_i]

Another suggestion that helped us greatly. Aside from keeping a health journal get copies of all tests including blood work and keep it in a folder. Bring this folder with you to all doctor appointments.

Wow, that's a good point. I should DEFINATELY get copies. I never thought of that. thanks!

 

[buckler]

This article talks about a variety of causes of unexplained pediatric fever. It doesn't sound like your daughter has symptoms for most of these but something might click with you. I don't mean to scare you with it!

http://www.pedrheumonlinejournal.org/October/PDF/fever.pdf

 

[honugirl]

Get copies of her tests because I can't count the number of times I've been told my bloodwork was "normal" only to find stuff out of range. Sigh.

Look at mystery diagnosis and go through the synopsis list of all the episodes. I do remember there being an episode of a child that would spike fevers.

Is there anything else that goes with it? Weight gain? Anything?

Has she ever hit her head?

 

[mykidsand_i]

Yeah, she hit her head about 2 years ago- had a full range of testing done by two specialists neuro. and ped. specialties. when it happened, she was brought into the hospital, got 13 stitches across the hairline. No skull fracture was found, no swelling, no other problems *that we know of*. She was 'watched' for about 3-5 months after and nothing ever came of it. For all the x-rays and cat scans and MRI's we'd gone through with her, if anything was wrong with her head, it would have been found by one of those two Dr.s...

No weight gain- AT ALL. She's not gained 1 lb. since she's been sick- not really loosing it either though. Although when she got the flu this fall, she went down almost 1 pound. She weighs 39 lbs. currently. She's very tall, VERY, VERY skinny!

She gets tired when she gets her fevers, but nothing else really. I've asked her many times "how are you feeling?" and she says "OK..." but I know things are not "OK" not when she won't get out of bed and has a high fever that's now lasted for several hours with no break!

 

[golfgal]

I would check with your doctor to see if it is ok that you call HIM on weekends or whenever this happens. I would be shocked if he said no. He can leave orders with the call service that if you call about this he is to be notified.

I would also consider going to a multi-specialty clinic, like Mayo, and have THEM do a full work up. They see all kinds of weird stuff so chances are they have seen this already.

I would also start charting when this happens, take a food diary and document what she does every day to see if you can find a pattern.

 

[The Mystery Machine]

Did they test her urine? I know my dd had a borderline infection that gave her low grade fevers and feeling crappy. She had really no symptoms other than a stomach ache.

Is she dehydrated? That is another thing my dd will struggle with. Since getting diagnosed with the UTI, we really have to make sure she is drinking enough. School does not help, that is for sure. Hardly nothing to drink in the hours they are there.

Start a food and drink journal for her and document everything with her fevers and how she feels. Maybe you can find a pattern.

Also I would insist on getting tested for other things like Lymes in her bloodwork.

 

[abdmom]

39 pounds for a 6 year old is VERY light. How tall is she? I'd have her seen by a pediatric endocrinologist or neurologist or maybe immunologist.

Just because the CT or MRI etc was normal at the time of her head injury, doesn't mean that there wasn't anything going on. It can't pick up everything.

 

[itsheresomewhere]

My best friend's daughter has a disorder that causes high fevers, mood swings and in her case seizures. I'll ask the name but she was diagnosised late last year with it after going to different doctors for over 2 years. It is something she will outgrow when she is older. Her daughter gets sick often. Good Luck.

 

[Disney Doll]

I'd go to an infectious disease specialist.
A hematologist/oncologist would be my next step if infectious disease couldn't come up with anything.

 

[golfgal]

39 pounds for a 6 year old is VERY light. How tall is she? I'd have her seen by a pediatric endocrinologist or neurologist or maybe immunologist.

Just because the CT or MRI etc was normal at the time of her head injury, doesn't mean that there wasn't anything going on. It can't pick up everything.

I agree, especially since you said she is tall.

edit: I looked at a growth chart for girls and 39 lbs puts her in the 25th percentile so light but not off the charts.

 

[Pea-n-Me]

Has she ever had blood cultures done?

I agree with seeing a specialist at a specialty hospital. It's not always easy getting answers, though. You may end up seeing multiple people until you find the one that believes in your concerns and pushes farther than everyone else. You need to work with your doctor on this as he will be the referer. He has to be the first believer. Otherwise it's like being on a wild goose chase.

Good luck.

 

[mykidsand_i]

OK, we ended up taking her to the ER at 5:30 this morning because her fever kept going up and Meds. weren't taking it down. Dr. there looked at her ears, throat, felt her tummy and ordered a full blood work up- then at 7 he called my DD's dr. Who then got mad at the ER dr. because I told the ER Dr. to call my DD's dr. as soon as we got there- he never did- not until 7 at least.

Nothing crazy showed up in her immediate blood results, they are sending them off to get 'further tests' done. Her Dr. showed up at about 7:20. Gave her IV fluids because she was showing to be dehidrated (he said it was due to high fever)...then did a cath. to get a 'clean urine sample'.

We just got home about 20 minutes ago. Her fever is down to 102.7 right now...which is the lowest it's been in 24 hours. Once the bloodwork comes back (should be Tues or Wed) we will have an appointment with him and he will see what our next step is. I think every single test was available to do was done this morning! Poor girl was poked, re-poked, given a cath (which I hate myself- she was just screaming!!!) and then they decided to do an IV- which was horrible beause the stupid nurse poked her 4 times before she FINALLY asked someone else to come in and do it. I was so mad- I, myself was crying along with my DD. The second person who tried got it in on the first try.

I use to think it was stupid of parents to not 'completely know' what test results said, what the DR. has told them when they were in for an emergancy visit. After this visit, I can completely understand what they are going through. We were extremely tired (up ALL NIGHT with her), EXTREMELY frustrated and I was trying to comfort her instead of listening to what people were telling me about all the tests. I will have to write all my questions down and ask when we see the Dr. this week! I was so stressed out all night and all morning, I can't believe how that messes with a person when it comes to remembering everything!

 

[Sky Blue Pink]

I'll be thinking good thoughts for you and your DD.

 

[JessicaR]

Ugh, I'm sorry you had a terrible night. I hope you are all able to get some rest. Glad to hear her fever has come down a little.

So you know you can request another more experienced person start an IV, or draw blood. You can also tell the person doing the sticking to STOP and get someone else. I went through that with my son also. I would cry. Finally I learned to advocate for him. They get two chances and thats it. Once he was very dehydrated and we were in the ER and he was in need of an IV. I grabbed an EMT that had just come in with an ambulance and he started the IV. Got him in one stick. Also you can ask, "are you confident that you can do this?" If they aren't they will get someone that is. My son is not a pin cushion. I understand being dehydrated makes things difficult. I also understand some are better at it than others. Sometimes though its just a bad experience no matter who does it. I hate those times.

Remember to get copies of all the tests that were run in the ER. I hope you get some answers quickly. Keep us posted.

Write it all down, it helps a lot.

Oh and the suggestion of seeing an Infectious Disease doctor is a great one that was the route we eventually took.

 

[mykidsand_i]

Well, what does one do AFTER they've been to the ER to get her fever down then, it goes up again (tonight around 8)? We tried going to sleep early tonight- she woke up crying and wanting to be rocked...I've now watched 2 movies (sort of 1/2 asleep) and tried going back to bed with her just now and she was mad. Man, it's like she's a baby all over again! Although, I don't blame her. This is the first time she's not been able to get comfortable or sleep while she's been sick though- it's not normal for her. Quite odd.

I believe we'll be taking her back to see her Dr. in the morning- though, I don't know what can really be done- we know the results to every test except for the ones we're waiting on. This is pathetic-

 

[NHdisneylover]

Oh you poor things (you and DD) I think you should call your doctor again now. You said he was mad at the ER doctor for not callign him when she first arrived last night--so you know he will be okay with being "bothered" off hours. It is his job and he knew that when he took it.
Call and ask him. He may want you to take her back in.
Also, I was wondering if the pediatric hospital an hour from you has an ER. Maybe you should take her there during one of her fevers 9I realize it is a longer drive). Since you do not trust your local ER and they are primarily concerned with workign with children they may be better able to hekp her and figure everythign out. Can you ask your doctor about trying that?
Good luck. I do hope you can figure this out and find that it is something simple to take care of.

 

[mykidsand_i]

She spent the entire day at the children's hospital yesterday. We went in to see her Dr. early that morning (he told us to bring her in at 7) and then he sent us to the Children's hospital. They ran a few more specific tests there. They are checking for some pretty scary things- but at this point I'd rather have some of these things completely ruled out than to worry about her having them.

Her fever completely went away yesterday evening- then they sent us home.

They are doing 'cancer markers' tests, tested her for diabeties, a few different 'genetic' tests and did a full work up.

They gave her an IV almost all day yesterday- they got it in the first poke this time, which I was thankful for. her fever went from 104.3 to normal in less than 1 hour. We were shocked.

They said she would be good to go to school today if she was up to it, but I decided to keep her home. It's the last day before easter break. She has been through a miserable last few days and needs a day to recover- not necessarily from her being sick- but more from the stress. She's been really sad- this long weekend will be a nice break for her (and the rest of us!!!)

To top it all off we got the letter in the mail yesterday saying "your child has missed too many school days...if she does not bring a note from a Dr. she will be considered a truant"...YEAH, she's a KINDERGARTENER!!!! And some of the time these fevers have started, she's been at SCHOOL where the school nurse has had to call me to come and get her. I've been in contact with her Teacher and the principle about DD's health problems. So, I was ticked to get this letter. Sure it's 'a formality' is what they call it...but it's still stupid!

She's just watching TV and cuddling with me. She said that she doesn't want to go back to the Dr. anymore. It's heartbreaking to hear that she's now terrified to go back- knowing full well that she'll probably need to soon! We're just happy her fever's gone!

 

[rie'smom]

She spent the entire day at the children's hospital yesterday. We went in to see her Dr. early that morning (he told us to bring her in at 7) and then he sent us to the Children's hospital. They ran a few more specific tests there. They are checking for some pretty scary things- but at this point I'd rather have some of these things completely ruled out than to worry about her having them.

Her fever completely went away yesterday evening- then they sent us home.

They are doing 'cancer markers' tests, tested her for diabeties, a few different 'genetic' tests and did a full work up.

They gave her an IV almost all day yesterday- they got it in the first poke this time, which I was thankful for. her fever went from 104.3 to normal in less than 1 hour. We were shocked.

They said she would be good to go to school today if she was up to it, but I decided to keep her home. It's the last day before easter break. She has been through a miserable last few days and needs a day to recover- not necessarily from her being sick- but more from the stress. She's been really sad- this long weekend will be a nice break for her (and the rest of us!!!)

To top it all off we got the letter in the mail yesterday saying "your child has missed too many school days...if she does not bring a note from a Dr. she will be considered a truant"...YEAH, she's a KINDERGARTENER!!!! And some of the time these fevers have started, she's been at SCHOOL where the school nurse has had to call me to come and get her. I've been in contact with her Teacher and the principle about DD's health problems. So, I was ticked to get this letter. Sure it's 'a formality' is what they call it...but it's still stupid!

She's just watching TV and cuddling with me. She said that she doesn't want to go back to the Dr. anymore. It's heartbreaking to hear that she's now terrified to go back- knowing full well that she'll probably need to soon! We're just happy her fever's gone!

I'm happy that he sent y'all to Children's. I'm also praying that it's nothing too bad.

School hack me off with their stupid letters. We've received these even when they knew our daughter was sick. Sometimes, it's just an automated computer generated letter.

 

[buckler]

To top it all off we got the letter in the mail yesterday saying "your child has missed too many school days...if she does not bring a note from a Dr. she will be considered a truant"...YEAH, she's a KINDERGARTENER!!!! And some of the time these fevers have started, she's been at SCHOOL where the school nurse has had to call me to come and get her. I've been in contact with her Teacher and the principle about DD's health problems. So, I was ticked to get this letter. Sure it's 'a formality' is what they call it...but it's still stupid!

I'm glad you went to the children's hospital. I've been thinking about you and hoping for an update. Please let us know how things go and give your DD an extra cuddle from the DIS board

Don't worry about the "hate mail" from the school as we call it in my household. We got that letter in kindergarten for my DD. They have to send it to everyone that exceeds the number of absences, even if you have valid medical reasons. The school would run into legal problems if they pick and choose who gets the letter and who doesn't. You should be fine since it's obvious there is a medical situation.

 

[JessicaR]

Has she been drinking enough? It sounds like once they hydrated her her fever broke. Since she has been having these high fevers perhaps she hasn't been drinking enough to counteract the fever. In general, the higher your fever, the more dehydrated you may become.

Poor baby. I hope she gets a break. And you too! Keep us posted.