Have you ever heard of this? Post # 173 Test results, she is better!

[lucyanna girl]

I haven't posted much this summer, too much going on. A long Disney trip, by the time we got home my sister was taking Chemo ( she's bald, down in weight by around fifty pounds and has one more treatment to go) and July 23rd my mother passed away.

Sarah, my just turned eighteen year old daughter is sick. We have been to three different doctors at this point and none of them have come up with a diagnosis. I would really appreciate any ideas of what this might be.

About three weeks ago she started having headaches. At first I attributed them to sinus drip, stress (she's very close to my sister) and maybe heat (Louisiana is having a hot summer).

Last week she complained her head was worse. Fever was up to around 101 at times but didn't last, you could pull it down with Tylenol. I should have went on to the doctor with her then but since she ends up there several times a year with her sinuses I still thought that was her problem. By last Thursday she seemed better and we went to Canton TX for the weekend.

Sunday night when we got home she was again running fever, now up to 102 and complained the light was bothering her eyes. She also says that when she looks up, down, or sideways it hurts her head.

Monday morning early we were at our family doctors. He checked her and said it was just heat exhaustion and mild dehydration from the weekend at Canton. We repeatedly told him she sick long before the weekend but he basically ignored that. I should say we are now looking for a new family doctor. Her white blood count was normal, heart rate slightly fast, blood level on the low side of normal which is where it usually runs.

My husband and I were both very dissatisfied and immediately started looking for another answer. She takes on oral contraceptive for regularity called Yaz. I called her GYN and he saw her Monday afternoon. He agreed that heat exhaustion was not the problem and neither was the Yaz as she is in her seventh month of taking it and has had no problems. He felt that if it were the Yaz fever would not be one of the symptoms. He suggested finding another general practitioner and gave her a sample of a migraine medication just to see if it might help. When we got home from his office her temp was over 102 again.

Yesterday her fever was 102.8 at seven PM. The migraine medication helps her head somewhat but the fever seems more resistant to Tylenol.

This morning we saw our third doctor this week. Again her white count was normal, blood level 11.6, urine OK, throat and nasal swap OK. He said if he just saw her labs he would say she was perfectly healthy but he also says that is obviously not the case. She is visibly ill by now- pale, dark circles under her eyes, either running fever or if it has just broken she is clammy to the touch.

She has lost several pounds, light (outside or florescent) bothers her badly. Her hands have swollen slightly on two occasions, bad headaches that last several hours at a time, fever up to 102.8, tired.

The third doctor has scheduled an MRI for tomorrow morning. He says it is really just to rule out, not because he feels there is anything there. He ordered a test for West Nile and H1N1 but the lab tech says she already tested negative for type A and B flu so it is not H1N1.

So, she goes for an MRI in the morning and back to doctor number three Friday morning.

Any suggestions or ideas? Please.

Penny

 

[Darcy03231]

I would request a spinal tap to rule out menengitis (sp). I know a fever and bad headache are symptoms of that.

 

[Pomlover2586]

The DIS isn't really the place to get a medical diagnosis......odds are you'll just end up getting more worried when someone comes in here and starts sprouting off completely unfounded diagnosis's like cancer.

Deep breaths....your seeking medical help which is great! Try to be patient and wait for the MRI. Good luck!

 

[stsomewhere]

My son had severe headaches for months. He always felt bad. After many trips to the dr., nothing was wrong or it was a virus. They can't give meds, etc.

One day, he had a headache so bad and was running a 104 fever. I took him to childern's hospital. They did a CT scan of his sinuses.

He had a severe sinus infection that was eroding the facial bone. He had to stay in the hospital for a few days on strong IV meds.

He strayed on strong antibotics for a month and he is much better.

 

[lucyanna girl]

I would request a spinal tap to rule out menengitis (sp). I know a fever and bad headache are symptoms of that.

Thank you. We are so confused over just the two symptoms and this sounds like a good idea.

The DIS isn't really the place to get a medical diagnosis......odds are you'll just end up getting more worried when someone comes in here and starts sprouting off completely unfounded diagnosis's like cancer.


Deep breaths....your seeking medical help which is great! Try to be patient and wait for the MRI. Good luck!

Oh, I know this is no replacement for a medical doctor but since we are already seeking professional help I think there might be good suggestions here.

My son had severe headaches for months. He always felt bad. After many trips to the dr., nothing was wrong or it was a virus. They can't give meds, etc.

One day, he had a headache so bad and was running a 104 fever. I took him to childern's hospital. They did a CT scan of his sinuses.

He had a severe sinus infection that was eroding the facial bone. He had to stay in the hospital for a few days on strong IV meds.

He strayed on strong antibotics for a month and he is much better.

I'm glad to hear you finally tracked down what was wrong with your son and very glad he is better.

 

[worm761]

I have no advice. Just wanted to say that I think you did the smartest thing when you sought a doctor who will listen to you. Good luck to you and your daughter.

 

[4nana]

Awww Penny, what a full plate you have sweetie ~ your sister, your Mom and now your sweet daughter . You must be worried sick and so confused at this point about your baby girl. No advise, but I'm sure you'll get lots from our Dis friends. Meanwhile I send 's and prayers her mystery illness is soon diagnosed correctly and she is soon on the road to recovery. Good to hear your sister is almost done her chemo therapy. So very sorry to hear about your dear Mom's passing . Godspeed ^j^

 

[lucyanna girl]

I have no advice. Just wanted to say that I think you did the smartest thing when you sought a doctor who will listen to you. Good luck to you and your daughter.

Thanks, I feel bad because I thought it would clear up and waited this long to seek help.

Awww Penny, what a full plate you have sweetie ~ your sister, your Mom and now your sweet daughter . You must be worried sick and so confused at this point about your baby girl. No advise, but I'm sure you'll get lots from our Dis friends. Meanwhile I send 's and prayers her mystery illness is soon diagnosed correctly and she is soon on the road to recovery. Good to hear your sister is almost done her chemo therapy. So very sorry to hear about your dear Mom's passing . Godspeed ^j^

Thank you. This has been a long, long summer. Getting Sarah well will help my feelings a lot and my sister still needs all of your prayers too.

Penny

 

[keenercam]

Penny-- This sounds so much like what I was going through many years ago. I had a sinus infection that was so bad with spiking fevers and the drip from it (because it was infected) caused a peritonsilar abscess. I was in the hospital for 7 days on what the nurses called "liquid gold" -- a very strong IV antibiotic. My sinuses were so badly damaged from the infection AND my throat was a mass of scar tissue from the abscess, so that I had to wait a couple of months while on maintenance antibiotics and then have my tonsils out.
I am so sorry your daughter is going through this. A sinus migraine can be so outrageously painful and there is no comfortable position. The fever and the pain make it impossible to sleep too. I really hope the MRI gives the doctors the information they need to treat the problem quickly.

 

[Piglets Mommy]

I have no suggestions, just It sounds like you've been through a LOT this summer! I hope they get her feeling better soon. Good luck to your Sister as well.

 

[SCHBR'smom]

I hope the doctors can find an answer for you and help your DD.

My only thought is I have a friend who's daughter (now 9) who was always sick, missing school. She'd run a fever and have headaches. They couldn't figure out what it was, but she was always out of school and at the doctor. It ended up being a problem with her potassium levels. Once they discovered that and fixed it, no more random fevers and headaches.

 

[lucyanna girl]

Penny-- This sounds so much like what I was going through many years ago. I had a sinus infection that was so bad with spiking fevers and the drip from it (because it was infected) caused a peritonsilar abscess. I was in the hospital for 7 days on what the nurses called "liquid gold" -- a very strong IV antibiotic. My sinuses were so badly damaged from the infection AND my throat was a mass of scar tissue from the abscess, so that I had to wait a couple of months while on maintenance antibiotics and then have my tonsils out.
I am so sorry your daughter is going through this. A sinus migraine can be so outrageously painful and there is no comfortable position. The fever and the pain make it impossible to sleep too. I really hope the MRI gives the doctors the information they need to treat the problem quickly.

I'm sorry you had such a hard time, it sounds awful. Did you have a sore throat? I ask because Sarah says hers is not sore, just the headaches and fever. She's tired now but I think that may be from the fever too.

I have no suggestions, just It sounds like you've been through a LOT this summer! I hope they get her feeling better soon. Good luck to your Sister as well.

Thanks you. We will all take all the good wishes we can get right now.

Penny

 

[Buckalew11]

First thought for me was menengitis also.

DH was sick like this twice. Very, very sensitive to light both times. First time they think he had leptospirosis and second time, toxoplasmosis. It was a waiting game, letting the fever let them know his body was fighting the infection. they wouldn't give him antibiotics because they didn't know for sure what it was---they were just ruling things out.

Sarah was sick a few years back, right? While at WDW. Are any of her symptoms the same as before? I remember she was one sick little gilr last time and it was a scary story to read about.

I will be praying for you, your sister and for Sarah.

 

[lucyanna girl]

I hope the doctors can find an answer for you and help your DD.

My only thought is I have a friend who's daughter (now 9) who was always sick, missing school. She'd run a fever and have headaches. They couldn't figure out what it was, but she was always out of school and at the doctor. It ended up being a problem with her potassium levels. Once they discovered that and fixed it, no more random fevers and headaches.

Hopefully some of the blood work will show us if she has any deficiency's.

First thought for me was menengitis also.

DH was sick like this twice. Very, very sensitive to light both times. First time they think he had leptospirosis and second time, toxoplasmosis. It was a waiting game, letting the fever let them know his body was fighting the infection. they wouldn't give him antibiotics because they didn't know for sure what it was---they were just ruling things out.

Sarah was sick a few years back, right? While at WDW. Are any of her symptoms the same as before? I remember she was one sick little girl last time and it was a scary story to read about.

I will be praying for you, your sister and for Sarah.

Yes, that was Sarah who ended a Disney trip with surgery and scared us to death. We tried but could never find out why she got so low on blood. Ever since then we keep a close check on her Hemoglobin. Right now it is 11.6, a little low but about where she runs since then.

Thank you for the prayers.

Penny

 

[DisneyBlonde]

no advice, just some fuzzy hugs for you and Sarah

 

[Disney Doll]

MRI of the head, spinal tap, get an infectious disease doctor on the case and perhaps a hematologist.

Has she been out of the country?

 

[Judy from Boise]

If it looks like a dog and barks like a dog.....it's probably not a cat.

She needs to be treated aggressively for a sinus infection as the first (like now) step.

 

[Tinijocaro]

The DIS isn't really the place to get a medical diagnosis......odds are you'll just end up getting more worried when someone comes in here and starts sprouting off completely unfounded diagnosis's like cancer.

I disagree. She's looking for ideas, not a diagnosis. I found out my husband's medical condition not from the many, many doctors we went to, but on the side of a milk carton. It said "National Dystonia Week", I read it and told dh that it sounded like what he had. Went to a neurologist who ran some tests and agreed. He's on medication now and is doing fine.

You never know how you will find out about an illness, it's a great idea to ask around for other people's experiences.

 

[southernbelle_amy]

I would check her for mono.

 

[lucyanna girl]

no advice, just some fuzzy hugs for you and Sarah

Thanks. With all that has went on lately we can both use them.

MRI of the head, spinal tap, get an infectious disease doctor on the case and perhaps a hematologist.

Has she been out of the country?

MRI is in the morning and we go on as far as necessary from there. Thanks Doll. You give good advice to all who ask. No, she has not been out of the country.

If it looks like a dog and barks like a dog.....it's probably not a cat.

She needs to be treated aggressively for a sinus infection as the first (like now) step.

I think it may be sinuses too. I also wonder about West Nile.

I disagree. She's looking for ideas, not a diagnosis. I found out my husband's medical condition not from the many, many doctors we went to, but on the side of a milk carton. It said "National Dystonia Week", I read it and told dh that it sounded like what he had. Went to a neurologist who ran some tests and agreed. He's on medication now and is doing fine.

You never know how you will find out about an illness, it's a great idea to ask around for other people's experiences.

Thank you. I find that there are some very wise people who post here. Many of them will go out of their way to offer help. When Sarah was so very ill in Orlando so many DISers offered help and comfort.

I would check her for mono.

I hadn't thought of that one. Thanks.