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

[FINFAN]

just read this thread, to you and Sarah...how frustrating and scary..I think you are holding up remarkably well and are doing an amazing job at getting help. Poor girl, she is a fighter! I have no medical help to offer, but know that we are all sending your way.

 

[lucyanna girl]

I just don't know what to say.

They called us late this afternoon and said to come over to the hospital so they could do a Cat Scan of her chest, abdomen, and pelvis. Looking for abscesses or any other abnormalities.

When we got there we waited two hours. When we went to the Radiology dept. They asked if she had eaten anything today. Not a lot but yes, she had. Sooo, we have to go back in the morning. She has to fast after midnight and drink some Barium in the morning. We have to be there at 7:30.

Meanwhile, her temp was 102.6 while we waited. I had noticed today that she has developed a little cough, not a lot and not deep, just a little cough that becomes more frequent as her temp goes up.

Our doctor friend came out of the ER to check her. He ordered a chest ex-ray while we were there. He read it and said she had a little rasp in the upper lung but nothing like pneumonia.

I asked if we need to take her to a larger, research type hospital. He said lets get the results of the Cat Scan and make up our minds but DH and I are ready to go somewhere. The question is where?

She spent the morning on the coach. We sat in the waiting room. By the time we lest for home she was exhausted.

Suggestions are welcome. Where do we go from here?

I'm scared.

Penny

 

[imabrat]

I remember Sarah from when she used to post on the TB. My heart is breaking for her, I'm a teenage girl who was sick for quite a while. But I had a diagnosis, I can not imagine how Sarah is feeling. Please let her know she's in my thoughts and prayers, and give her a hug for me?

I second The Mayo Clinic. They are VERY good with things, they diagnosed my cancer which had been a rare type of bone cancer never seen before. I would definitely try to get there ASAP.
I cannot imagine what your whole family is feeling right now, it has got to be frustrating.

 

[honugirl]

Honestly, I'd be contacting the NIH in Maryland. They may have a line on where to go. Good luck! Hope she gets better soon.

 

[Piglets Mommy]

Let us know how things go with the CAT scan this morning. I can't imagine how scary this must be.

 

[The Mystery Machine]

You need someplace that deals with the weird. I know here in St. Louis we have Children's Hospital that deals with the weird.

When my dd was there for her heart surgery as a baby we talked to many parents that finally ended up there because their previous doctors /hospitals called Child Protective Services on them only to find out they have a bone disease or a blood disease.

They were the hospital that figured out that a mother did not poison their dd and got her out of jail. It was the "anti-freeze" case way back in 90.

You need someplace that is equipped to figure it out. You will find it.

 

[toystorymom]

I haven't read all the responses so I'm sorry if this has been repeated several times. I did read that she had a spinal tap which would have ruled out meningitis, my first thought w/ the fever, h/a, sensitivity to light, etc. I am wondering if Lyme Disease is prevalent in your area. Unfortunately, here in the Northeast it is. My 9 year old son was just diagnosed with it 2 weeks ago, and one of his classmates (who he hasn't spent any time with this summer) was diagnosed yesterday. My son had fever, headaches, loss of appetitie, fatigue. He did get the classic bulls-eye rash but not everybody does. Just a thought.

Otherwise, I hope she is feeling better and you get your answers soon. Sounds like you are dealing with many things right now. Take care of yourself too.

 

[KristiMc]

I'm so sorry that you and your daughter are going through this.

 

[piglet50]

i've been reading this thread and hope that you find out what's wrong soon. our prayers are for you all and the doctors.

 

[chell]

Still sending you prayers. I remember when your daughter got sick when you were in Orlando. Goodness, I hope you get some answers soon.

 

[booger73]

Take her to Tulane in New Orleans.. a good internist at the university should be able to sort it out (with help from the ID and other guys I bet).. She's >18 so she can't go to Children's hospitals usually...

Let me know if you decide to take her there actually.. I know a few people there

 

[Buckalew11]

Penny,

Does Sarah have a cat? (litterbox) Does she ride horses or have any hobbies like that? Has she been to camp this summer?

Gosh, I know you are beside yourself with worry. I'd go for that Cat Scan tomorrow and see what they say. If it is still a mystery, I'd definitely look into Mayo. We had an awesome experience in MN 2 years ago and will return someday (sooner than later?) for an elbow replacement.

Prayers are still being said.

 

[bigtinkfun]

I can't even imagine how frightening this must be for you and your daughter.

Y'all are in my prayers.

 

[stacy347]

Prayers said for your daughter and you .

 

[crazee4mickey]

I remember when Sarah got so sick a few years ago----no advice or guesses what should be done or what it is---only prayers that they are able to find out what is causing her to be ill with such a high fever. You must be all so worried and scared, wanting a diagnosis but afraid what it may be--My heart goes out to you and Sarah

 

[lucyanna girl]

The Cat Scan results were of no more help than any of the others.

We do however have a new Internist who seems to be very interested in her case.

Our doctor friend called us with the results. He also had a new doctor he wanted us to take her to. He feels that if we take her elsewhere it will be easier if we have an Internist to refer us.

Cat Scan showed a slightly enlarged spleen. The liver function is still a little high and she has a little tachycardia, her heart rate is 128. He also mentioned a couple of small shadows on her liver that are so slight he wasn't really certain they are anything at all.

New doctor wants to to an echo cardiogram, a sinus ex-ray series, and an ultrasound of her abdomen. He did an ECG in his office. They took more blood, nine large tubes full to go along with all they took again last night - enough for two series of blood work then. My poor sweetie has very deep, small veins that have to be fished for.

Sarah has really been a trooper throughout all of these tests but she almost cried today when they told her the echo cardiogram is scheduled for eight AM Thursday morning. She is starting her senior year in high school and Thursday is the first day. They always film the Seniors on the first day and play back the film as part of Senior slide show at the end of school. She really didn't want to be out that morning. I'm wondering how she is going to go anyway as weak as she is getting, all this fever is taking a toll.

New doctor made her an appointment for Monday afternoon so that these new tests (as well as a twenty-four hour urine test that is in progress) can be finished and he can study the results. Even though she has had a negative Mono test he seems to consider that a possibility.

Sarah says her headaches have eased up, that they are not nearly as bad as last week. The fever has increased, both in terms of how many hours a day she has fever and it spikes a little higher than it did. I have also noticed that she has developed a little shallow cough. The higher her temp the more often she coughs. I pointed this out to new doctor. She is tired and I am sure she is a little dehydrated even though she is drinking well.

I don't yet have the paperwork on the Cat Scan but I will get it tomorrow. Meanwhile I am torn. Yesterday I planned to be on my way somewhere with her. Somewhere they would find what is wrong. Now we have a new doctor who made DH and I both feel he is very interested. I really don't know what to do. DH says that unless she gets worse he wants to let this doctor run his new tests and see what he finds. I do feel that having someone who cares is a great asset. On the other hand I would like to be at a huge hospital where they have more resources.

Sarah really wants to stay at home because Saturday night is her Cotillion. She belongs to a youth service organization that does community service. Each fall they have a Cotillion for the girls. They wear formal dresses, are presented to the audience on their fathers arm and afterwords they have a dance. Senior girls wear a white formal dress and have a Father / Daughter dance onstage. Sarah has had her dress for months and is so excited. She says she doesn't think she can attend the dance afterwords but she really, really wants to do her last Cotillion and dance with her Daddy.

There is nothing more important than her health and well-being. I hope that by giving this doctor a chance we are doing the right thing. I will go along unless I see her getting worse.

Tomorrow we turn in the twenty-four hour urine test and have the sinus ex-rays done. Thursday she has the echo cardiogram.

Penny

 

[TheBigBadWolf]

Still sending prayers for you and Sarah.

 

[The Mystery Machine]

I hope you are doing the right thing too. It is so hard to tell. This would be my last chance with them.

At this point start listening to your gut and take no prisoners.

More prayers for you.

 

[Tinks]

I'll be honest and say it really does sound so much like Mono. (Epstein Barr Virus). I was shocked when you said the mono spot was negative. Everything seems to point to that, IMO, including the enlarged spleen and elevated liver enzymes. I'd run it again and look into the possibility that it could be EBV with a negative mono test? Is that possible?

I really hope you get answers and she recovers soon. Hang in there.

 

[labdogs42]

It does sound a lot like mono to me. Here's the info from the Mayo Clinic site:

By Mayo Clinic staff

Signs and symptoms of mononucleosis may include:

* Fatigue
* Weakness
* Sore throat, perhaps a strep throat that doesn't get better with antibiotics
* Fever
* Swollen lymph nodes in your neck and armpits
* Swollen tonsils
* Headache
* Skin rash
* Loss of appetite
* Soft, swollen spleen
* Night sweats

The virus typically has an incubation period of four to eight weeks, although in young children this period is shorter. Signs and symptoms such as fever and sore throat usually lessen within a couple of weeks, although fatigue, enlarged lymph nodes and a swollen spleen may last for a few weeks longer.

have you tried the Mayo Symptom checker? http://www.mayoclinic.com/health/symptom-checker/DS00671

I hope you find an answer soon! I'd have that mono test re-run, too. Labs do make mistakes sometimes.