10yr old with possible zoster sine herpete

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I took my daughter to her pediatrician yesterday (monday) for a rash that had started on her face. It had started on Friday, and would get worse at times and fade at times. I truly thought it was possibly 5th disease. She also started complaining that same day (friday) about pain in her right arm that felt as though she had a deep bruise, although there was no sign of injury and she had done nothing to hurt her arm.

By the time she was seen by her dr yesterday, the rash on her gave had faded to almost completely gone, but the pain in her arm was now radiating to her right upper back and hurt to even be slightly touched. so much so that even light touches make her almost drop to her knees and cause her to tear up in pain.

Based on her symptoms, and after examination, her pediatrician stated her feels as though she has zoster sine herpete. She has been vaccinated against chickenpox, but has never actually had chickenpox that I am aware of (she has chronic hives so I suppose it is possible that an episode I thought was a hive break out was in fact a mild case of chickenpox).

Today the pain is much more widespread. still isolated to the right side only, from her spine over. Ibuprofen isn't giving her much relief. She is a former preemie, and has always had a weakened immune system, so missing school is common.

As of right now we don't have a definitive diagnosis. Just her pediatrician stating he feels that shingles is what she has. In order for her to be able to get excused from multiple days missed from school for this, I will need a diagnosis or something from the dr stating why she isn't able to attend. is there not a test that can be ran to determine if she does in fact have this? If she does have this, how long generally does it last in children?

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  • Posted

    Did the doctor discuss giving an anti-viral? It may be too late, as the window is usually 2-3 days. I'd call back and ask about it. If this is shingles, that's the best course. I know some people get lab tests, but I'm not sure if that will actually be helpful or not. A doctor's diagnosis should be enough. Treatment probably wouldn't change. An anti-viral can decrease the severity and length of the illness. I'm so very sorry. There's not a lot of good news here. Regular OTC meds, like Tylenol may decrease the discomfort slightly. Keeping her quiet, resting, not over-using the part of the body (her arm) to prevent increased pain is helpful and may make the long-term pain less. If she follows the usual path of shingles (tho it varies) she'll have the most acute pain for 1-2 weeks, decreasing over time.

    She may also have a fever, fatigue, nausea, headaches and over-all aches. People think shingles is just the rash and pain, no, it may affect the whole body, like the flu or a cold will. Help her to find a comfortable position, and distract with TV, books, anything you can. I didn't have a rash, so no anti-virals and also had it on the left side affecting my shoulder, torso, bra line. I do understand what she's going through.

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    • Posted

      I took her back in today, and he started her on anti virals. He also said he still feels it's zoster sine herpete, but if in 4 to 5 days the pain is still spreading or increasing, he is referring her to a neurologist for additional testing to rule out other potential causes. Not sure what those are though.

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  • Posted

    Hi Tiffany. I am truly sorry your daughter is going through this. As an adult shingles sufferer, my heart goes out to your little girl. If it is shingles, then yes, the docs can do blood work that should show the antibodies in her body at an elevated rate, from her body fighting the virus. If this is shingles, then this may not be a case for your pediatrician, as this young age diagnosis is very uncommon and her pediatrician may not know what's the best course of action. Anti-virals are a must, with adults fighting shingles but i'm not sure what the dosage would be for your daughter's age. Shingles is debilitating for most adults, so it is most likely that your daughter may not be able to attend school and/or complete her school work. But with shingles, there should be no problem with her getting a doctor's excuse. I can't imagine my own child going through shingles and i am truly sorry. Poor thing...there is no pain like shingles pain and over the counter meds and narcotic pain meds don't usually give relief. However, drugs to treat seizures can help give relief to most people. You getting her to a doctor that is familiar with treating shingles is critical. If she continues to have bouts of shingles, she may need long term antivirals at low dose, to keep the outbreaks under control. And you may also need to have your daughter put on the school programs "SST" and "Section 504", for health related issues, so the school will be forced to work with you and make sure your daughter gets EVERY chance to get a good education, despite her medical condition. Also, keep in mind that stress and random illnesses will worsen her shingles, in only seconds. So, she needs to take it easy whenever she has an outbreak. Please know you and your daughter are in our prayers. Feel free to reach out anytime. Take care friend

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    • Posted

      do you know what blood test can be done? I specifically asked him today and he said for zoster sine herpete, there isn't a definitive test.. hmm. he did put her on anti viral medication to be taken 4xs a day, for 10 days to start with. he did write several refills as he said often 1 to 2 rounds isn't enough. he wants to know how she is doing daily, and in 4 to 5 days, if she isn't showing any improvement, he wants he to be referred to a neurologist for testing to rule out other potential causes. she is a former preemie and has a compromised immune system already. she has never actually had chickenpox, so the fact she likely has shingles, let alone without the rash, is rare according to him. she is my child that gets uncommon things, or gets much sicker than most with common things. she has had mono requiring her to be hospitalized for days, and missing 21 days of school at age 6.. she has had viral meningitis at age 7 that landed her in the hospital for several days and caused her to now deal with chronic migraines as a result.. she also developed a disease called hsp vasculitis at 7 that is quite rare and an autoimmune disease.. so with her, it tends to always be something strange or scary.

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    • Posted

      I've been heartsick also thinking of your daughter. Though it's been almost 2.5 years, those early days are still strong in my memory. While shingles in children isn't common, it's not as rare as some people think. Just like another incorrect view that you can only get shingles once. Some shingles are specifically recurring shingles, other times people, like my husband, do get it multiple times. I've not heard the theory that people may need multiple doses of the antivirals, but it makes sense. There's so much they don't know about it.

      I want to caution you about gabapentin or Neurontin (the brand name for the drug) or other medications commonly given for shingles such as nortriptyline or anti-depressants. There can be serious side effects and great difficulty with stopping the medication due to the withdrawal symptoms. But technically, it's called Discontinuation Syndrome. Gab was approved in the US for 3 conditions: epilepsy, small nerve diabetic pain and shingles/PHN (post shingles pain). The drug only reduced the pain in less than 50% of the people in the drug trial. It basically is supposed to block the nerve pain singles by working on the brain. But along with this comes memory loss, confusion, cognitive issue, dizziness, insomnia or fatigue, depression, suicidal thoughts, tremors, fear, visual disturbances etc. For many of us we wish we had never started the drugs.

      Most doctors feel these are benign medications they aren't. They haven't kept up with the latest warnings. The drugs need to be reduced very slowly and carefully to avoid seizures and serious reactions such as movement disorders and multiple other problems. If they are offered, please read information available such as at the FDA websites or other credible groups.

      There are other ways to treat shingles pain, but in the early stages, rest is the best. Sometimes opioids are prescribed, but obviously they need to monitored carefully. Either hot or cold packs may help. But like your daughter, I can't tolerate pressure on my shoulder/back. Aspercreme with Lidocaine 4% OTC or prescription strength creams or patches can help. Capsaicin may help, but it takes some courage to try it. It's the chemical in hot peppers so the sensation may block the pain receptors by basically overwhelming them. Some people have success with it , but most of us aren't eager to try it. I also take extra strength Tylenol, when I first got it, it was 4 times a day. She may want to avoid shower water hitting her back/arm directly. If the mid-torso is involved many of us don't wear bras. Loose, soft comfortable clothing helps. I wear light-weight fleece during the winter.

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    • Posted

      Her dr didn't put her on neurontin. he felt that by the time it would take effect (2 to 4 weeks to feel the full effect of the drug) she should be feeling better, and with her age and size he wants to just try acetaminophen and ibuprofen if at all possible. she only weighs 73lbs, so she can take regular strength tylenol every 4hrs, and 300mg of ibuprofen every 6hrs. it doesn't offer much relief at all, but like her dr, I am hesitant on neurontin or any narcotic pain med unless she gets to the point it's the only choice we have. she is definitely not able to shower at this time, due to the pain of the water hitting her skin.. so its bath only. even that is painful. she is wearing loose fitting clothes and resting as much as possible. right now we are just in a wait and see what happens next phase.

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    • Posted

      I can tell how much you love your daughter and the wonderful care you're giving her. But, unfortunately, it's hard to understand how much pain she may be in, even a dedicated spouse or parent may forget at times. In the first few bad days, I paced the floor just trying to get through one more second of the pain. I'd scream into a pillow, bending over. My husband didn't know as I made sure he didn't hear me. I had my daughter with forceps, but it was too late for a nerve block. The shingles pain was worse, as you feel trapped. I'm glad your doctor didn't offer neurontin. I forgot to mention that I've been on a prescription NSAID for years for a different joint issue. I feel it's helped with the pain as much as anything else. There are some doctors who also give NSAID's. Your doctor seems to be really on top of this. Much more so than others. I won't tell you the stories I've heard of doctor's ignorance. He's a good doctor. With any lucky, in the next 10 days there should be a definite decrease in pain.

      The progression varies. I had severe pain in my shoulder/back for about 4 hours, then it lessened, then disappeared for 10 days. Then I had a few tiny bumps, I thought were insect bites, but no pain. Then I noticed two more tiny bumps, no pain, but went to the doctor thinking it could be shingles. But we both agreed it wasn't as I had no pain, but I had a low grade fever. Five days later the pain was back. So from the first symptom to the full diagnosis was 10 days. I am hoping she's through the worst of it by now, but the improvement will be slow and gradual. But it WILL get better.

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    • Posted

      I am so hoping and praying that we are at the worst of it, and that slowly it will begin getting better. although she woke today saying the pain is worse than it has been yet, so I feel she has yet to reach the peak. it's a minute by minute ordeal for sure. she is a very strong, tough little girl, with an extremely high pain tolerance.. so when she says she is hurting, let alone moaning, tearing up, and literally dropping to her knees in pain, I know she is in agony. it breaks my heart to not be able to take the pain from her. all I can do is comfort her as best I can. I've slept on the couch with her the last 3 nights to be there for her when she wakes up hurting throughout the night.

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    • Posted

      It's a lonely journey, but you're there for her and tell her I'm sending her good thoughts and air hugs. There are many, many, many of us who have been through it, and anyone who has would also send their love. My doctor suggested limiting anything that increased the pain. His, and then my theory is that you want those nerves to stay as calm as possible. It may be hard to pinpoint it as the pain is so diffused, but it sounds similar to mine, and anything using the core muscles engages those nerves. So lifting a glass would hurt, holding the phone with that hand, bending, reaching lifting, twisting etc worked those muscles and those nerves. She may not even realize it, all she knows is it hurts, everywhere in the region. This isn't something you can power through, the more rest and self-care, the better.

      There may, as she heals, seem to be pain in other areas. Those nerves spread out through-out the back. Then for some odd reason, there's almost a referred pain, so the opposite side may hurt, or a twinge will appear in the front. I'd feel like I was in a vice. I'm just saying, don't think you can predict exactly what will occur. It's a strange condition. She may also feel just plain sick. Achy, nauseated, upset stomach or diarrhea etc. Pain is wearing, as is fear. Give her an air hug for me.

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    • Posted

      she has definitely had an upset stomach since last night. I figure it could be a result of starting the anti viral meds. she is having headaches pretty bad off and on, which is unfortunately normal for her since meningitis.. so no way to really know if its related to the shingles or not. although the recent frequency leads me to believe it's very much likely it is. as long as she sits still, with her back firmly pressed up against something, and doesn't move, she seems "ok". anything more than that and she is complaining significantly.

      I'll be sure to give her air virtual hugs! thank you for all your info and input. this is new territory for me.

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    • Posted

      This group became a lifesaver for me. One night when i was pacing (that distracted me) I went pnline and found this. Merry is very active here normally, she was my guardian angel. I just try and pay it forward.

      Despite being a medical secretary for 30 years, I didn't really understand what shingles did to people.

      It's hard to say which is causing her recent side effects. Antivirals can be hard on people, but remind her they may help her.

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    • Posted

      One could be given different antivirals and other medications, but the aftermath is worse. I had shingles that came up from under my psoriasis. I was often 'suicidal', but determined to fight it. Am out of the whole thing now. But the pain on my left side - back of the neck, head, ear, front of my face on the left, left shoulder, back and the arm has been persistent. Often I'm awake with severe pain.

      We, definitely will not give in to this 'virus'. We have been fighting until now and won't get defeated that easily. Viruses, bugs, bacteria attack our body when our immune system is running low.

      The best solution I've worked on is 'eat more fruit well before the main meals', and healthy food.

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    • Posted

      Ophiana, how long ago was your shingles? It could be PHN, which can happen. It's more common in older people and everyone varies as to how much healing they get. I'm lucky that I'm getting better. It's been almost 2 1/2 years but the pain is much, much lower than it was two years ago. Tiffany, do NOT add this to your worry list. Only about 20-30% of people get it, normally, as I said in people over 60. And don't believe it if you read it doesn't improve, it can and does for many people.

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