Update on 15yo w shingles

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so after my daughter being told by two doctors it was shingles, two ppl at hospital it wasn't then we went to the hospital on tuesday and it is shingles. My daughter can't sleep without sleepeaze, the itching has stopped but she's in a lot of pain and has swelling which is really bad as its in the vulva area. She was meant to go back to school today but obviously can't but it's her gcse year and she's getting really down having to stay in the house all the time. Shes on her third dose of aclivior or however you spell it, has co codamol and laxatives and some plain non fragrance cream. Is there any way we can encourage her healing as it's been almost six weeks?

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  • Posted

    it shouldn't be going on this long with the same types of symptoms. the internal sores should be healed by now, i am confused as to why unless the antivirals aren't working. the internal cream is zoverax and that is just as important if not more so then the antivirals. can you call your dr to see if they can give her that cream?

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  • Posted

    I am so very sorry to hear about your daughter having to deal with this. I have been dealing with postherpetic neuralgia from the shingles episode in late February since March of this year. Mine is on the lower back, left buttock, left hip, left leg , left side of my lower abdomen, and left labia. I took the antivirals for about two months but they did not relieve the pain. I have been on morphine, gabapentin, amitriptyline, and hydrocodone since March. I can not tolerate clothing on many of the places, temperature changes also cause intense pain. I know that taking lysine has helped. Also avoiding caffeine, any type of nut, chocolate have helped me as well. You can google food to avoid with postherpetic neuralgia. I finally got in to see a pain specialist and they are going to try a nerve block to see if that helps on September 19th. I hope it helps because I am unable to work or carry on a normal life. My labia either feels like it is on fire or numb with pain. I was also prescribed a compound cream that takes some of the edge off, however it is not safe in the genital area. Luke warm soak bathes with epsom salt help cool the genital area some. I hope some of that helps your daughter. I would say she needs to see a pain specialist or neurologist soon. It is not easy finding a doctor that is used to dealing with shingles in young people or young adults. I will pray for your daughter. Best wishes.

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  • Posted

    Hi again, Grace. Sorry...this will be long. Much to say.

    First off, i am truly sorry your little girl is still suffering with this. I agree with Deborah. Something is not right here. Shingles is different for different people but there are some "constants". One of these is the timeframe of your daughter's symptoms. Shingles with prompt treatment should not take this long to heal. Even a weak ant-viral would have allowed for recurrences but its "anti" purpose does not ignore a viral load this large. Just so i know what is the case, i would like to ask you a few questions please.

    Your daughter is now 15 years old. In year 1995, the CDC started giving all kids a shot to prevent chickenpox and also replaced polio drops with a polio shot instead. Prior to this, kids in our generation had only MMR (Measles, Mumps, Rubella) and also Polio drops. Introduction of this new chickenpox vaccine protected our kids from ever getting the chickenpox and thereby, they should never get shingles.

    Thus far, the research has confirmed its success but this is why people of ALL ages are getting shingles NOW, when it was once primarily a geriatric condition.. When they wiped out the childhood illness, that inadvertently took away OUR little doses of exposure that adults typically get from being exposed to little Johnnie, who had chickenpox and stayed home from school for days.. It kept Moms and Dads immune to reactivation of the chickenpox virus that would one day become shingles. This was normally sufficient till our senior years, when most Grandmas and Grandpas don't get to see the little kids much. In a nursing home environment, exposure to kids is very rare, elevating their risk to shingles greatly. So, my questions are...

    *Did your daughter receive the chickenpox vaccine when she was young? (it will be on her current shot record)

    *If not, do you recall her ever having chicken pox when she was little?

    Reason i asked is if she has NEVER had chickenpox, then she can not develop shingles because shingles IS the chickenpox virus reactivated.

    *What blood tests or cultures were used to diagnose your daughter with shingles?

    Unlike Bacterial infections, a Viral infection. are not detected via normal blood work analysis and are most often diagnosed by "Process of Elimination". If the blood work shows NO bacterial infection but patient is still sick, then it is often assumed to be Viral. However, there ARE tests to better determine if her diagnosis is correct or if they are wasting their time, while she suffers.

    -You can request a swab or culture of the sores to check if Varicella is present.

    -You can request bloodwork to check for specific antibodies that have fought off a Virus in her body. If it is Shingles and her symptoms are still this severe after all this time, then her antibody count should be high...off the charts high.

    After i began having Shingles, i will NEVER forget my 4th outbreak and my visit to our local Med-Stop. I told him that i had Shingles and evemade mention of Varicella Zoster. The DOCTOR wrote down what i said, then looked at me and replied, "Yes ma'am. Do you have any OTHER venereal diseases you want me to know about?" I came off that table and yelled "It's the Chickenpox Virus! Shouldn't YOU know that doctor?"

    Yes....i did leave and went to another faculty. Lol.

    My point being that most of us here had a dozen or more misdiagnosis before finally being diagnosed with the right one, Shingjes. It was our bad luck. We are ALL hopeful and praying that your 15 year old precious daughter is NOT having Shingles and that HER luck will be better than ours was. Many signs are pointing that she just might be THAT lucky but they need to find the real problem quick or IF IT IS really shingles, she needs different meds ASAP.

    See if they ran these tests i mentioned here, to confirm their diagnosis.

    -They are called "Serologic" testing that looks for the antibodies that SHOULD be there in her body if she is fighting shingles.

    -The other test is a (PCR) "Polymerase Chain Reaction". From a swab of the wounds, doctors can see the actual DNA of Varicella Zoster if it is the cause of her rash.

    -If these two tests point to other possible illnesses, there are MANY other illnesses that can cause the same kind of rash as shingles. For example, a bad yeast infection can. Today, they put so much perfume into many feminine products and naturally the young girls prefer those. PH Balance can be tricky and can cause all kinds of issues.

    *Ask them to check for any sign of a Yeast Infection.

    I'm still hoping and praying the doctors are wrong but will find the answer soon either way, to ease her suffering. Right, Wrong or Otherwise, they should have her well by now. As doctors, they SHOULD know the time frame an outbreak should last, before seeing improvement.

    Prayers are with you this night. Tell your little girl, "Hello, from us all". We're all praying for her and to hang in there". God Bless you both

    ~Rhonda

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    • Posted

      hi thanks for all your advice.

      she never had the chickenpox vaccine as in the uk most children just get chickenpox as she did. they did a swab when it was weeping and it came back negative so they thought it was a skin infection but after her not responding to her meds, they said the swab mustve been a false negative as it looked like such typical shingles and they couldnt swab again bc it was all dried up. they also tested her urine twice bc they thought she may have a urine infection but she didnt

      grace

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    • Posted

      Hi friend. That was the way it was here in the US for as long as I can remember. We ALL went through the chicken pox...it was part of growing up.

      You are quite welcome for the advice but i wish i could be of more help to you. I'm so sorry she is still hurting. If the swab was negative but they still diagnosed her without conclusion tests, then it sounds like they may have diagnosed her with assumptions by eliminating other illnesses, as often is the case. I'm sorry.

      The Serologic test should still be possible though but you will probably have to specifically request it. As I mentioned before, when our bodies fight bacterial infections, the bacteria is found in our lab work. But if the infection is Viral, then it won't necessarily be seen on her lab work. If this is Viral, the Serologic test should show a abnormally HIGH level of antibodies that her body naturally produced. This test can be done during and after an outbreak.

      So, her yeast is at healthy levels? If this proves to be shingles, i hope they can knock it out quickly. She's been through so much already and it would be sad to see her left with years of PHN after this is over, because the doctors took too long to treat it.

      I know you must be going out of your mind by now, as a Mom. I know i would be. I'm so sorry friend. Please keep us posted. Take care

      ~Rhonda

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    • Posted

      One more thing i wanted to mention. Not to scare you but just to advise. Anti-Viral meds are a blessing when fighting any viral illness. However, keep in mind that anti-viral meds can also be harmful to your daughter when taken in excess. At her young age, i am hoping the doctors are keeping this in mind. There are many anti-viral meds out there to treat shingles.

      Valtrex/Acyclovir was one of the originals but many are switching to the Famvir. I changed to Famvir myself, on the advice of Merry Julianna, (a nurse on this site) because after taking the Acyclovir for a while, it just wasn't working as well. During the transition, while beginning the Famvir and tapering off the other, i began to have seizures and it was discovered that the Valtrex/Acyclovir was causing them. Out of the blue, i went from feeling great and getting dressed to meet friends that afternoon. Next thing i remember is the paramedics at my home, me laying on my bedroom floor wearing only my towel and them loading me up into an ambulance, to take me to the nearest hospital. Thank heavens my husband and son came home at the right time. I was in the middle of a full seizure when they arrived. I had three more seizures in the 10 minute ride to the hospital. I had another 19 seizures in the ER, despite all the drugs they were pushing through I.V. to stop them. All that happened at the hospital is still a blur or no memory at all of some events but I ended up intubated, put on life support and flown out by helicopter, via MedVac to an Atlanta Hospital ICU. THE doctors were finally able to wake me 5 days after my arrival, after they finally discovered what was causing it and stopped the meds. That was year and half ago.

      Of course, i had been taking the Valtrex for over 5 years before it happened but still a thing to keep in mind with your daughter being so young. Just wanted to mention this.

      Please remember to eat and keep your own strength up and you are both in our prayers.

      ~Rhonda

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  • Posted

    It is really horrible - I would encourage her to apply a cream that is safe for the vulva regularly. And any areas on the skin, keep covered in cream and bandages. For me, La Roche-Posay Cicaplast Baume B5 Soothing Repairing Balm has been miraculous. The rash I covered with this cream and bandages 24/7 never even crusted over and got itchy. The ones I couldn't put bandages and cream on (on my scalp, behind/in my ears, etc) did get crusty and itchy and are still really uncomfortable.

    I have to say adding bandages over cream helps but for her if it's all in that one area, it's not really something she can do. Maybe add cream generously to a pad?

    I also ordered and ingest a tablespoon of manuka honey every day. It has antiviral properties. (google it- it's expensive, but I truly feel that the days I take it, I feel better.)

    As for her diet, have her avoid arginine-rich foods. I read that Arginine has the potential to cause the virus to replicate itself. Google low arginine- high lysine foods. Lysine is good and arginine is bad.

    Sorry I couldn't be more helpful. I hope your daughter is feeling better every day. Poor thing! Take care

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