Topic: Need advice...son's temp is 104...PICC infection?
Tracy9
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My son woke up this morning very sick. He felt very fatigued and had a 102.7 temperature. His visiting nurse just happened to be coming to do his dressing change, and called his doctor. We were told if he still had a temperature tomorrow to take him to the ER.
In the half hour, it has shot up to 103.3 and is now 104. His only symptom is fatigue and achiness. No cough, or cold symptoms.
I have not given him any Tylenol or Motrin since I noticed it was shooting up regularly because I was afraid to mask something; is that wrong? I was worried the temp would go down and he'd seem fine but really be getting worse.
I was going to ask if anyone had experience with PICC line infections, and if this might sound like one....but I just decided while typing to call Dr. Jones.
The nurse who called back said if his temp shot from 103.3 to 104 in a half hour to get him right to the ER, so off we go.
Still appreciate experiences from anyone with PICC line infections, especially a child, and their symptoms???
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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My son is about to go into week six with his PICC line and I'm concerned because we're traveling to a remote lakefront cabin in Michigan next week. I've been assured a hospital is nearby. Maybe 6-7 weeks isn't long for some of the old tickbitten here but this is all new to me and my son is having a heard time not scratching the thing off from the itchy rash.
Anyway, your son's fever worries me - I would be off to the ER as well. I will keep you all in my thoughts in prayers tonight, this late night... Your sweet boy is being held high. I am so sorry you have to go through this.
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Tracy9
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Worried I should call an ambulance...what if he goes into septic shock on the ride?
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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seekhelp
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Error on the side of caution Tracy.
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Pinelady
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Prayers. I know a man this happened to. He was cured with the fever of 106. Praying for the best.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tracy9
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In ER...what a surprise, the first of many hospitals I've been to lately that has internet access! Glad I brought my laptop.
I drove Cody to Hartford to CT Children's Medical Center. They have drawn blood and blood cultures. They feel since there is an absence of any other symptoms except severe fatigue, it is most likely a line infection or sepsis.
We are right now in a one hour waiting period for the blood work. The doctor also mentioned something about possible fungal infections, which I am in the dark about.
So anyway, they expect to be pulling his line and probably admitting him. Nothing is set in stone yet, waiting for blood work. His fever has come down to 101 which is great.
Aliegh, I have to laugh about the itching; I swear Cody's ENTIRE life revolves around scratching that PICC line bandage! Ever since we got here to the ER he keeps asking when they are going to pull his line and when he can scratch it.
Thank God, they just brought in a recliner for me. Cody and I were fighting over the bed (he's not good at sharing.) I could not possibly sit up in the chair any longer.
So I guess it will be 5 am or so before I know if he is getting admitted or we are going home. The doctor was pretty clear that either way, the PICC is getting pulled tonight.
It just never ends, does it? As soon as Ryan and I have PICCs, very soon, with the four of us, what a nightmare that is going to be!!!
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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Tracy9
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All done! His blood counts were elevated but not enough for him to need to be hospitalized. They just pulled his PICC line and we are heading home soon.
Not sure how I'm going to drive home this exhausted at 6 am......but then I'm turning on the A/C in the bedroom and snuggling with my sick boy and sleeping all day!!!
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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Dekrator48
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Hope you and your son got home ok.
I am so happy that he will be ok and it wasn't as serious as is could have been.
Prayers continue for your family.
Hope you all get lots of rest today.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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So glad things worked out as well as hey did in the ER, and I hope both you and your son are recovering from the experience.
A few years ago my husband had a PICC and after having it for several months, suddenly developed a high fever and chills. He tried to ride out the fever at home for a few hours, then finally agreed to go to the ER.
On the way to the hospital, he was complaining to me about how he hurt so bad all over inside, and thought he was in bad shape.
He even called our pastor and several other people and told them he was on the way to the hospital, and expected to be admitted.
My husband has a tendency to overdramatize his symptoms and his illness, so I was having difficulty determining how serious the situation really was, but when his fever continued to spike at home to 104, I knew that he needed to be in the ER.
Ironically, my husband had been very fussy about maintaining his PICC, insisting on anyone touching it to use the very best sterile technique. He was so fussy that he eventually decided that only I would do his dressing changes, because nobody else did it well enough.
By the time we got him to the hospital, his BP had dropped so low the nurses told him they were amazed he'd been able to walk in from the car.
Apparently he was septic, and he'd waited long enough that his internal organs were beginning to shut down.
They determined from a series of blood cultures that the infection entered his line from INSIDE his body. He has diverticulitis, and bacteria had traveled from his gut to his PICC.
The doctor told him he was 90 minutes away from slipping into a coma.
The line was immediately pulled, and he was put on IV abx via a regular catheter in another site to treat the sepsis. And he WAS admitted for two days.
I wasn't online yesterday, but if I had been, I would have strongly urged you to get your son to the ER ASAP. So glad that's what you did, and the outcome was good.
Posts: 962 | From Charleston | Registered: Jan 2002
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Tracy9
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Thank you everyone for your prayers, they certainly worked and I think averted a worse case scenario here!!
Maryland Mom, what a terrifying story. I think Cody's infection, though it wasn't at the actual PICC site, must have started there because he is awful about his bandage. It always ends up with some holes and cuts by the second day.
By the time the week rolls around and the nurse comes to change his bandage, it is usually taped all over the place. He also loves to go outside and play in this sand pile, and the dressing gets all sandy.
Well, this is still very confusing to me, so I appreciate everyone's experiences. It's scary because if I hadn't heard it from other people, I would not realize that a fever alone meant get to the ER, possible PICC infection.
He is a very happy, PICC free boy today. I slept all day so hopefully I'll get up in time tomorrow to call Dr. Jones and see when he gets another line....and if he wants to stick with a PICC or go to a port; since at Cody's recent visit we were told he would need IV for a very, very long time...and it's already been 3 months.
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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posted
Tracy9 - Have you ever thought about using tube gauze or a tube sock over the covering? It might help him not to pick and poke at it quite so much. Just a thought. Blessings to you!!
Posts: 49 | From Minnesota | Registered: Jul 2009
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Ocean
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Tracy,
I'm glad Cody is OK! Whew!
I agree that a port may be a better fit. I can't imagine having to deal with a PICC on a young teen. Probably would be easy to keep clean with a port.
Tracy9
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Yes we put a stockinette over it, but he just pulls it down. His arm is always all red, scratched and even scabby because he scratches it so much!
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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Pinelady
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Is there any way to give him some benedryl to
prevent the itching? It may work better with
dressing it in bandage vs/ sock net and changing often? You don't use tape do you?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I am so glad to hear he's okay! What a terrifying experience.
I decided not to go on vacation next week to the remote lake cabin in boonies Michigan.
No way am I going to more than 5 minutes from a hospital while my son has an itchy scratchy picc line. Is it possible to relax?
I posted a question about the itchy rash around the picc and one person responded with the suggestion to use 3M Medipore + Pad3566. I thought I'd just copy that here, as it seems relevant.
I called our home care pharmacist and they don't have it but they're sending a sample dressing change kit that usually works for people who are allergic to the regular dressing.
I think we've tried about 3-4 types so far. I imagine with 3 months of the IV you must have tried your fair share.
I'm giving my son sudafed before bed every night - hoping that helps some with the night time scratching. He's 11 years old so he's a bit more aware of the need to resist scratching in the day, but it's still hard for him.
I'm just glad you're home safe!!
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seekhelp
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C'mon Aleigh - come on to Michigan. I assure you we have no Lyme here. The ID docs and my PCP assured me it's all hunky dorey here and the ticks are squeaky clean. They don't even bite here. They've been domesticated as pets. lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Tracy9
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Interesting because he gets these "burn like" boil type sores under the dressing too. I asked the home care nurse if he might be allergic to it and he said no, this just happens.
He uses Betadine to clean it.....I'll have to look into those suggestions of other covers.
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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Tracy9
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I am going to also ask Dr Jones about a chest port since Cody needs IV abx for a "very long time."
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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Tracy9
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Getting a little nervous today as his temp has gone up to 99.7 and he is more lethargic than yesterday.
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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Pinelady
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Tracy do they have him on any C ?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Hope you're staying in touch with Dr J about Cody's temp! In light of what you guys just went through, I would make sure Dr. J is aware of any elevated temp as it is usually a sign of inflammation and/or infection.
Praying that things are going well for you.
Posts: 962 | From Charleston | Registered: Jan 2002
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WildCondor
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Hey Tracy
Did they culture the PICC line? See if any bad bacteria (sepsis) was growing in the line?
Did they give him Cipro or prophylaxis against sepsis to take orally?
Sounds like the PICC lines aren't worth the risk. Maybe you can get him on Bicillin shots and oral meds instead from now on.
Tracy9
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No, they did not give him any Cipro, nor did they culture the PICC line, but they did do blood cultures. Of course I don't have the reults yet.
He desperately needs IV, he was on orals for six months with no response, but he is responding miraculously on IVs. I wonder if a chest port would be better for him, easier to keep clean, etc?
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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Pinelady
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Glad he is better. Get some rest.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I don't know how old your son is, but it sounds to me like he is not mature enough to be trusted with a picc line or a port. He needs to be a willing patient, not one who deliberately sabotages it's cleanliness by pulling off the coverings, playing in sand, tearing it to shreds by the second day. Give the kid a break and don't ask more of him than he can handle. Sounds like he is being tortured by the severe itching he experiences-and it could very easily be an allergic reaction to the bandaging inspite of what the nurse said-that is not typical.
Oral meds may take longer- but they do work- and your kid may still be alive at the end of treatment. If he becomes a statistic for another patient who succumbs to long term IV antibiotic due to sepsis, well, score another one for IDSA and their argument that long term IV meds do more harm than good. It sounds like he is too young to understand the consequences of not being compliant with IV-so it's not worth the risk. If he is old enough to understand the consequences than perhaps he is trying to tell you by his behavior that he really doesn't want the IV. You even said he is a happy Picc free kid. Think about it. JR
Posts: 365 | From Sylvania | Registered: Aug 2008
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WildCondor
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Adding this again here...
It's tough sometimes when talking about IV lines. On one hand, IV treatment is probably the best method to treat Lyme disease. On the other, there are more risks. Many LLMD's do NOT explain the warning signs of sepsis to their patients when they get a PICC line or a port. That's why I posted the story, for those who just do not know. So far, it's saved many lives.
It can indeed turn deadly overnight. However, when sepsis hits, it can be with no warning, and happen in seconds.
I was doing fine with my second Hickman catheter, woke up, was watching some TV. I flushed my line with saline to do my IV Zithromax, and bam...within seconds my fever went to 104, shaking chills, vomiting, pain all over my body down to the bone, heare rate flying, you name it, it happens FAST!!!!
So, it can creep up slowly, or it can come out of nowhere, so just be prepared and know the warning signs. Have a phone near your bed or wherever you do your IV in case anything ever happens, don't wait either, don't drive yourself to the hospital, don't wait for a ride, call 911.
If you aren't sure you have sepsis, and have a low fever, or any other signs, then go to the ER anyway, and have them culture blood directly from the IV line in question. At the same time have them culture blood from the other arm. This will help them determine if the line is infected (and with what germ) and if it has spread to your blood yet.
If you get the line pulled (which you should for safety) then make sure they culture the tip of the catheter. Culturing means they check your blood for the germ causing the infection, plus they run a sensitivity test to determine which antibiotic will work against that specific germ. Since it takes time to get culture and sensitivity results back the ER doctors, (and yes, even the Infectious disease docs are consulted on this topic), will usually put you on IV Cipro, IV Vancomycin or oral pills to take home until the results are back depending on how sick you are from the sepsis.
Know the signs and the risks people, it is your responsibility as a patient to know what you are dealing with.
Tracy9
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posted
Cody has congenital Lyme and orals for six months showed him no improvement. He is improving dramatically in two months on IVs.
I need to look into some suggestions I was given about other options for dressings that might not itch him as much. It is torturous for him; the constant itching. Also, we need to wrap his arm better if he does go outside.
We got a call from the ER today; the blood they drew from the PICC line was definitely where the infection was coming from....so it was in fact a PICC infection.
I am wondering if he would be better off with a chest port; easier to keep clean and not so "out there" as his arm is?
How long should it take to recover from a PICC line infection? He seemed fine the next day, but still running close to a 100 degree fever. I let him go to Six Flags today (he never gets to go ANYWHERE) with my sister and niece and I hope he is doing okay.
Cody very much wants to get better and is a very willing patient, and with severity of his Lyme symptoms, his life has been very adversely affected up until the point we discovered he had Congenital Lyme. This is his shot finally at having a childhood where he really hasn't had much of one.
I got some more Ace bandage type stuff that will protect his site better if he gets another PICC. Not sure what Dr J will want to do next.
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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