posted
can't reach llmd till morning. Took first B 12 shot yesterday. Any advice? Just started new thing. She is having trouble holding her head up. fever is 102.5
Posts: 303 | From green bay, wi | Registered: Mar 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
She is on Rocephin, so she has a line? Get her to the ER. She could have a line infection. My son had two; fever and fatigue were his only symptoms.
That was the biggest sign; there WERE no other symptoms to explain his illness. No sore throat, no ear infection, etc. He had a line infection both times. The second time it was bad enough he had to get IV Vancomycin.
These infections spread extremely quickly. It can't wait until morning. We were told our son could have been dead within about 48 hours.
You catch it fast, you are fine. That's the key. Getting to the ER right away.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Haley
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Member # 22008
posted
I am curious Tracy. I sometimes wonder if I have an infection brewing in my line.
I currently have a bad bacteria in my urine but we have not tested to see if it is in the blood.
My question is - if your line is infected will a regular blood draw show the bacteria?
I heard Dr. B. speak once and he said that the bacteria is usually adhered to the line so it may not even show in the blood.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
We went to the ER and of course no one knew what to do. The doctor and nurse had both read the Milwaukee Magazine article about Lyme which was helpful.
They took three vials of blood through her line and one from her arm. We waited there till her fever dropped a bit. Then as usual we went home.
I guess the 12 hour results showed nothing unusual so we have to wait for the ten day results.
Tracy, how did they know about your son's infection? Was it from a blood test? They wanted to do a spinal tap but I refused.
I guess the best part was they they all admitted that they didn't know how to handle this nor did they think it would help to get a ID doc involved as he wouldn't understand either. Maybe this will get them thinking about educating themselves about this stuff.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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Tracy9
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posted
It shows in your blood, your white count goes up to show infection. With Cody, they took a vial from the PICC, and from his arm that did not have the PICC in it and they compare. That there showed the infection, so they pulled the line both times.
Then they culture the tip of the PICC line. The second time it showed a staph infection, a bad one, gram negative I think it was, whatever is worse. Anyway he had to return to the ER for IV Vancomycin. It was still confined to the tip of the PICC but would have entered his bloodstream and he would have been septic within 24 hours.
I remember that day the home care nurse said "if his fever gets any higher go to the ER." I think it was over 102 then. When it hit 103 we went. When he had PICC lines, twice he got a fever with no other symptoms but fatigue and listlessness, and both times it was a line infection.
I'm so glad that is not the case with your child. I agree with refusing the spinal tap. They must have been looking for meningitis. It sounds like they did the same tests as for Cody; if nothing came back abnormal, it does not sound like a line infection luckily. Thank goodness.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I guess the best part was they they all admitted that they didn't know how to handle this nor did they think it would help to get a ID doc involved as he wouldn't understand either. Maybe this will get them thinking about educating themselves about this stuff.
That is true!! They actually showed some wisdom here!! Yea!
Glad your child is OK!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Mom of three - You may also want to PM Spring showers. She also had a bad infection in her line. She may have some tips if you are still thinking it maybe an infection in the line.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
we are going back to the hospital. fever is back up and advil isn't working. I am going to make admit her until they figure this out.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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posted
momofthree - Just read your posts, thinking of you and sorry for all you guys are going through.
Posts: 448 | From minnesota | Registered: Feb 2010
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Haley
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Member # 22008
posted
We are thinking of you. This too shall pass. Please keep us posted.
Posts: 2232 | From USA | Registered: Aug 2009
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Tracy9
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Member # 7521
posted
So sorry....how high is the fever? How old is she?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
So sorry about what you all are going through. I hope the ER can help this time. Thoughts are with you.
posted
Thank you all for the kind thoughts. What a nightmare.
Night two we go back to the same hospital. There is a different ER doctor. After waiting 5 hours, more blood test and a chest xray, they ask to speak to my llmd. I explain we can't reach him until morning. I give them his number. (How I miss Dr. C from My Kisco.)
The new ER doctor comes in, turns her back to me and starts to lecture my daugher on the dangers of long term IV antibiotic use. She explains to her that she should get a second opinion from an ID doctor and this treatment she is on could kill her.
My daughter is 20 yrs. old. We were sent home and still had no idea what the fever was about. Early the next morning my llmd calls and he is upset. He tells me to take her to whoever put the line in and have it removed right away. The hospital had called his office apparently.
We are not in Green Bay and her PCP is here in Milwaukee so I called and she sent me to the emergency room. I told her what happened the night before and asked which one to go to. She recommended one and we went.
Super nice ER doctor and nurse. They knew about Lyme and knew she needed her line. They refused to take the line out as they were sure it was not the source of the fever. By now the fever is gone again and had been all morning.
They said they would not take it out before hearing from my llmd. Well he is quite a private guy and I finally got his number. Boy was he mad. He admonished me for not taking her back to Green Bay and having it done there.
He called the ER and told them she was done with treatment and to send me to Green Bay to have it removed. Of course I can't get that done for days because this guy is a busy man.
So, I am going back to NY for a second opinion from Dr. C. I don't want to pull the line just because my llmd is afraid for his license. I will have the line pulled if it is the right thing to do though.
All I have to say is don't get sick in Wisc. There are no doctors to back you up or hospitals that know what to do.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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Before the fever her WBC count was 5. It hadn't been that high for years. Now it is back down to 3.1.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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