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Thread: Help! (Warning--it's long)

  1. #1
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    Jul 2011
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    Default Help! (Warning--it's long)

    Let me start off by apologizing for how long this will be. I just found this forum today, and after reading some threads, decided to post because this forum is amazing. You guys are so helpful to one another.

    I am going to start at the very beginning of my son's journey to give you all the information of what he has been through and where we currently stand.

    My son was born healthy--over 10 lbs, on his due date. As a baby he didn't have any severe medical problems. He was on breathing treatments for a while when he was about 4 months old due to possible asthma, but that cleared up with the breathing tx. He had a couple of emergency room trips with some illness-stomach virus x2, strep throat, ear inf.

    When he was 2 years, 3 mo. old, he became very ill. It was on a Friday, he started out with a runny nose, sore throat, and that night started running a fever. His fever got up to 103. Saturday morning I called his ped. (they do not work on Sat) and she opened the office so I could bring him in. She said it was probably viral and sent us back home. That day his fever would not break, he started vomiting horribly, his fever went up to 104, he became really lethargic. I called his doctor again Sunday. Again, she opened the office up and we went in. I told her something was seriously wrong. He had never done this before. At this point, he could barely even hold his head up. He would not drink, eat, etc. He also had a peticheal rash on his face. She still insisted it was viral. She got some gatorade and a syringe and tried to force him to drink it against my wishes and he vomited all over her. She wrote a prescription for phenergan (sp?) and sent us back home. That night he became even worse, so the next morning I took him to the ER. While we were at the ER they tried to IV my son for dehydration. After 3 people tried unsuccessfully, they sent us home. When we got home, I laid my son down on the couch and for 3 hours he barely moved. I got him up and took him AGAIN to the ped's office. I demanded that they admit him to the hospital because something was seriously wrong. This was going on 4 days of a 104 temp, he was extremely dehydrated, his mouth was starting to hurt, his throat hurt, and he was extremely lethargic.

    When they admitted him to the hospital, they put him on an IV and tylenol suppositories because he could not keep anything down. They ran a strep test and EBV test. His fever still was not breaking. The next morning (Tuesday), I asked the pediatrician why they were not doing anything besides giving him tylenol?? Why were they not running other tests??? I ended up calling a hosp. advocate to demand a transfer to another hospital. While the hosp. advocate was in there, his ped. came back in and I told her what I had just told the ad. Also by this time, my son's mouth had sores all over and in it and his entire face was swollen and he didn't even look like himself.

    Later that night, at 1 a.m., his pediatrician flew into the room holding her chest. She said she had been up reading all night and found something and didn't even put on a bra before she left the house. She said that an ICU doctor was on his way in and they were going to take my son for a spinal tap, because the doctor thought he might have Rocky Mountain Spotted Fever. She began to explain it to me and that they didn't have time to wait on RMSF test results because the fatality rate rises so high after the 5th day. We were in the wee morning hours of day #5. They took him for the Spinal tap which came back normal, and immediately started him on an IV of doxycycline.

    (For those that don't know what RMSF is--its a often times fatal rickettsetial disease that happens from a tick bite. (My son had no evidence of a tick or a tick bite). Doxycline is a tetracycline drug used for acne and the only tx for RMSF, however doxycycline is not to be given to children under 8 because of side effects (permanant discoloration of permanent teeth).

    Within 12 hours my son's fever was gone. He transformed into a totally different child. He progressed so nicely that they moved him out of the ICU 1.5 or 2 days later (I can't remember exactly when as so much has happened since).

    By Friday, they had received the results back from his strep and EBV tests and he was dx with EBV, strep throat, and adenovirus. He was doing so well on the doxycycline that they were possibly going to discharge him the next morning and stop the doxycycline 5 days early.

    Friday night and into Saturday morning, my son suddenly developed blisters over his entire body...everywhere including the tops of his ears, down to the soles of his feet. They immediately took him off the dox. took him for an ultrasound for Kawasaki's, did so much bloodwork over that weekend that his veins started to collapse. They were having to draw blood from the tops of his feet. He was having abnormal bloodwork from his liver, among other things. They lost so much bloodwork and didn't get it where it was supposed to be in time, it still makes me fuming mad to this day. The next week, they did a biopsy on one of the blisters and it came back erythema bullous multiforme. They also put him on different antibiotics. They never did dx what caused the blistering, what made him so sick to start with, and lost his bloodwork for RMSF. They discharged him from the hospital after 9 days with his diagnosis stating EBV, strep, adenovirus, and possible RMSF.

    Over the next week after he was discharged, the blisters started drying up, scabbing over, and finally went away.

    Three weeks later, on the palm of his left hand he got the exact same blister. I took him to the ped., they cultured it--it was neg. The doctor said it was herpes, even though his bloodwork from the hospital was neg. and the biopsy was neg.

    I took him to a derm. in the city I live in, they tried a course of acyclovir, with no results, put him on allergy meds, with no results, topical steroid cream, with no results, did another herpes test--negative.

    The blister ended up going away. Three weeks was back. This time, I took him to the ER 6 hours away at a huge children's hospital. They cultured it, etc. They got him an appointment with a ped. derm there. We ended up seeing this ped. derm for 18 months. During the 18 months, the blisters kept coming back over and over again on the same hand, along with a whole list of other symptoms. They did numerous tests and 2 biopsies, and my son also saw an infectious disease doctor back in my city. They could not figure out what was wrong and gave up...

    So, I took him to the next biggest hospital, but this time in another state. He got a ped derm there that had just transferred from NIH. They, too ran their own panel of tests for dermatological diseases and did a biopsy. After 4 months with this doctor, she said she thinks my son has an autoinflammatory condition and that the blisters are secondary to that condition. She sent us back to my son's ped with a list of bloodwork that she wanted run. When we took that to the ped, he said the bloodwork she wanted done was a joke. He said it was the most basic testing and that it would not help anything, so his office got us into a ped rheumatologist. They made his appointment for----EIGHT MONTHS LATER. Yep. 8 months.

    Continued in next post (I was over my character limit)

  2. #2
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    Continued from 1st post

    So, let me fastforward to present day. My son is 5 1/2 now. When this first started his flareups would last about a week, with 3-4 weeks in between and the blister on his hand was confined to one blister or a small cluster. Over the past 3 years, the remission of the flareups got fewer and further between, and the blistering now takes up his entire palm and back of his hand, with no break. He is constantly in a stage of healing and breaking out with no break in his symptoms.

    He just had that first appointment with the ped. rheum. 2 weeks ago.

    I left out the list of symptoms until this part, so my story would not be too confusing. I also want to add that during the past 3 years, it has been like fighting a war with these doctors. To get them to continue testing or do anything has been like pulling teeth. I have been met with resistance ever since that first doctors appointment after my son's hospitalization 3 years ago. If I had listened to the first 2 doctors and taken their word, my son would have been misdiagnosed with herpes and that would have been the end of it.

    Here is what my son has been experiencing for the past 3 years since his hospitalization:

    Blistering on one hand (duh...I'm sure you are tired of hearing that one by now) (Very Painful, not itchy, not burning)
    Eye pain and sensitivity to light
    Joint, muscle and bone pain (hard to pinpoint when being described by a 2-5 yr old) in the legs and arms, so severe it causes insomnia
    Stiffness in the legs, especially in the mornings or after sitting for 30+ min
    Numbness (?) in legs...he says his legs are still sleeping sometimes after he wakes up
    Severe abdominal pain, to the point he doubles over and starts screaming and/or crying
    Nausea and random vomiting (possibly from the abdominal pain)
    Periods of lack of appetite, followed by periods where all he does is eat
    Lack of balance (When he has a flareup, he will fall no less than 20 times in one day, tripping over his own feet)
    Very low immune system (constantly sick with a runny nose or virus. He has never been in daycare, and is always at home with me unless he visits my mom for the day. 75% of the time, if we even go to Wal-mart, within the next couple of days he will be sick with a cold or virus)
    Extreme irritability (I used to could tell when his hand would break out based upon how irritable he would become in the 2-3 days before the breakout) (He becomes extremely moody, and is overall a different child)
    Most of the time he is very hyperactive, but he will go through periods of extreme fatigue and he will be really pale during these periods.
    Low grade fever off and on. His normal temp is around 98.2--low grade is 99.4-99.6.

    So where was I...oh yeah...given his list of symptoms, it has taken us 3 years to finally get real, actual tests done that have nothing to do with a dermatological disease.

    At his appointment, I went over his entire medical history with the Dr. The doctor asked me some very specific questions (I'll get to that in a moment) and seemed very concerned. He told me that he cannot guarantee an answer, but he will try his best and also that if within the next couple of months, we do not find out something, he will refer my son to a gastroenterologist in the mean time to figure out the stomach issues since they are especially bothersome to my son. The Dr. examined my son, his joints, flexing them, etc.

    After we went over his symptoms again-The questions- He asked if anyone in our family had a history of lupus or RA--yes (Great aunts and 3rd cousin). He asked if my son had ever had seizures-No. Weightloss-No (My son is tall for his age, but as skinny as a rail, even though he was born at over 10 lbs!), Sensitivity to sunlight-No (Had phototherapy testing done for 3 days at the derm--was normal), Mouthsores-None that I'm aware of, Does he drink alot-Yes. We have always joked about how much he drinks.

    After the ?'s, the doctor said he was going to do some bloodwork. I'm kicking myself now for not asking specifically which tests, but he did mention JRA, Lupus, Crohn's and Cealiac. They took about 7 tall vials. The doctor put my son on Naproxen twice daily, first thing in the morning, and right before bed and made us an appointment to come back in 4 weeks (this doctor is only in this office one day a month--hence the 8 month waiting period). He told me the next time my son has stomach pains, for me to gently push in on his stomach to see if it's tender and if it hurts him. I have done that, and it does. I felt horrible afterwards for even doing it because I barely put pressure and it caused my son great pain.

    So yesterday made day #17 on the naproxen. He has been sleeping through the night better than he has in 3 years, has not woken up 1x with pain. During the day, he has still been complaining of leg pain, and he has still been experiencing the abdominal pain. Sooo, yesterday, my son was with my mom and dad and my mom called me around lunch time and told me that my son had just peed and it was hurting him and that it had taken him 3 hours to go, that he had been needing to go and couldn't. I looked up the naproxen to read the side effects again, and difficulty and painful urinating was a rare side effect. I rushed my son to the ped. Ughhh I hate drs here. Since his ped rheum is 3 hours away and not in office for another 2 weeks, I knew I needed to take him to the ped for a urine test before I even called the rheum.

    Right off the bat the ped. was upset that the rheum had not called him to tell him about our appointment...I was like...really??? The ped had a sour attitude the entire time. The urine came back fine, no infection, no protein, no blood. He pushed on my son's lower abdomen and it hurt him. The ped then told us to stop the naproxen if we wanted because "it's not a cure for anything, all it does is treat the symptoms"...I was fuming...this dr really was clueless. Of course it was to treat the symptoms, because they don't know what's wrong with him!!

    When I left, I called the rheum and left a msg about what was going on. About an hour later, a nurse called me back to tell me that the dr. wants him to stop the naproxen immediately, they are putting him on meloxicam, but we are to wait 5-7 days before starting it because the dr. wants his pain level back to normal and the naproxen out of his system. So at this very moment, my son is taking nothing, but will start the meloxicam Saturday.

    Okay, If anybody is still reading this, I really appreciate it. There is so much to put out there, and I get lost sometimes trying to put it all down. The reason I am here, is because I have spent the last week, every spare moment I have, reading about autoimmune conditions, the ones the dr. mentioned, and specifically lupus. Also, after I got home and read about lupus, I realized that most of the dr's questions were asked specifically in regards to lupus symptoms. After what I have read about lupus, I feel like I don't have one iota of a shred of doubt, that this is what my son has. I don't think he has crohn's or cealics or JRA. Lupus is the first condition that I have researched that everything fit together like a puzzle. All of the symptoms were right on with what I have read, even when I have read on several articles that SLE can be brought on by EBV, and that's when this all first started was after he was dx with EBV in the hospital. As much as I want an answer and a tx for my son to feel better, it is killing me that I feel deep down that there's no way it can't be lupus. I keep trying to reason my way out of feeling this way...the fact that my son was 2 when this started and 5 now, and a white male...the statistics are against it being this, but then I read some more and everything I read, it just solidifies in my mind that this is what it is--specifically the bullous SLE.

    We go back in 2 weeks to see the results of the bloodwork. I don't know what it will show, or how to proceed with the dr. if the tests are normal and he wants to drop it. Should I push it with the dr. with my instincts? If the dr. were to want to move on to something else, should I just drop it? Do the symptoms sound to you guys like lupus as much as they do to me? I am having a hard time finding anywhere online to read a first hand account from a parent of a young boy that has lupus. All I have been able to find are medical studies, and articles, etc. Regarding bullous SLE, I read that there is a med. called dapsone that is shown to clear up blisters in 1-2 days and keep them gone as long as you take the meds. I was thinking about asking the dr. if we could try that as long as there will be no horrible side effects, just to see if it works. I don't want to scare this dr. off by being too pushy, yet I cannot sit around for another 3 yrs and watch my son suffer with nothing being done. He has been sick now longer than he has been healthy. He also starts kindergarten in 3 weeks. Thank you so much for taking the time to read this, and any insight, advice, answers, anything will help.

  3. #3
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    Houston, Texas
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    Well the first thing that I want to do is welcome you to WHL. I am so very sorry that you have had to go through this! You have been a wonderful advocate for your son and he is lucky to have you!

    Yes, I did read the entire thing because that is the only way I could get the information. I would love to tell you that your experience is rare but sadly it isn't. People with AI (autoimmune) disorders often have horrible times getting diagnosed because there is no test for Lupus and some of the other diseases. There is blood work that is done that, along with other symptoms, can lead to a Lupus diagnosis but there is no single test that can be done and many doctors just don't want to work that hard. I am going to add a link showing the criteria for determining Lupus. Please note that that these are very common symptoms but when everything else is ruled out Lupus can be diagnosed with 4 of these symptoms

    Criteria for Diagnosing Lupus

    Yes, there has been some research into EBV and Lupus. There is no concrete answer. Sadly, there really is no answer to who, or why, people get AI diseases. The story with you and the doctors is way too common. Too often patients with AI diseases are pushed around and left hanging for months, or even years, as you have noticed. Your child has had a WONDERFUL advocate in you! You need a pat on the back for pushing as hard as you have! That is what it takes to get a diagnosis of lupus, or any disease that can't be seen in one set of blood work. As you know we are not doctors so no one here can tell you if your child has Lupus or not. What I can and will tell you is that you are a fabulous mother and, after just one post, I am honored to meet you.

    Please make yourself at home. There are hundreds of threads here and there is a wealth of information to be found in them. If you have something specific you want to ask or talk about feel free to start your own thread. While we can't tell you what is wrong we will gladly help you on your journey to some answers. I look forward to getting to know you better
    Last edited by tgal; 07-20-2011 at 08:12 PM.

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  5. #4
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    Wow! I thought Kawasaki after the first few paragraphs. Normal CBC's show nothing unusual?

    You need to keep pushing for answers which is what you seem to be doing. Where do you live that it takes so long to see rheum? Next step might be one of the teaching hospitals or medical schools. They are usually on the cutting edge of all things medical. Anything near you?

    BTW, what's your little guy's name?

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  7. #5
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    Hello mommysquared,

    Welcome to WHL. I just finished reading your son's story. Both of you have had a rough road.

    Although Lupus in young caucasian males and men in general is uncommon, it most certainly does happen. I'm a 43 year old white male who was diagnosed with SLE 7 years ago.

    Here is a good article about a guy named Scott Exler who was diagnosed with SLE when he was 8 years old. He even wrote a book about his experiences. There are also other stories in the article about children with Lupus, and their parents-

    And here is a 2002 Lupus Foundation of America PSA with Scott-

    Many of your son's symptoms could be caused by Lupus, but they could also be caused by quite a few other conditions as well. Do I think you are doing the right thing by pursuing the possibility of Lupus? Yes I do. Do I think your son has Lupus? I don't know.

    Lupus is very hard to diagnose. It's called "the great imitator", because it's symptoms vary widely from person to person, and can be misdiagnosed as any number of other diseases and conditions. The best thing you can do, is what you are already doing.

    You are researching the subject, and looking for answers. You are very determined to find an answer, and to be persistent with the various Doctors and Specialists. That makes you a great advocate for your son. I certainly hope he does not have Lupus, but if he does, he, and you, need to know so you can put him on the road to managing his illness and living his life.

    We have a large base of knowledge here at WHL, and our members will do what they can to help. Once again, welcome.

    Last edited by rob; 07-19-2011 at 04:04 PM.

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  9. #6
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    Hello mommysquared,

    Nice to have you with us at WHL even through the circumstances your son and yourself have gone through and it's been worrying times for you...yes i read all of what you put.
    Even though your sons only 5yrs old and we always state this so much...if he maybe lupus related in anyway when bloods are taken, lupus plays and fluctuates the bloods and gives off false readings.
    Tgal (mari) as put a good link up for you to read refering to Criteria for Diagnosing Lupus which will help in many ways.

    I must step in and say this as you mentioned creams and steriod based creams did'nt help and you was on about asking for Dapsone to be possibly tryed...your son can't just start on Dapsone his DNA as to be tested first to see if it matches with the drug first and tablet form are the last effects they turn to regarding skin issues and there is side affects to the drug.. as i'm waiting to start it but my DNA as matched.

    It's going to be nice getting to know you and how your son's symptoms are besides what they find out but for the Dapsone you need to ask his Dermo for a DNA test first as it's a sulpha drug.

    I'll add info below on it for you to read from a proper Dermo site, which my Dermo uses.

    Hugs to you both Terry xxxx

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  11. #7
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    What are the aims of this leaflet?

    This leaflet has been written to help you understand more about dapsone. It tells you what it is, how it can be used to treat skin conditions, and where you can find out more about it.

    What is dapsone and how does it work?

    Dapsone is an antibacterial medicine belonging to the sulphonamide class, which is available on prescription from your doctor. It was originally used for treatment of leprosy. More recently it has been used as a treatment for several other skin conditions.

    Which skin conditions are treated with dapsone?

    Dapsone is used to control inflammation in a variety of conditions such as dermatitis herpetiformis, pyoderma gangrenosum, vasculitis, Henoch Schönlein purpura, Sweet's disease, bullous pemphigoid and other diseases.

    When should you not use dapsone?

    If you know that you are allergic to dapsone, or have had serious reactions to the sulphonamide group of tablets, you should not take dapsone. Let your doctor know if you have significant heart or lung disease because the dose of dapsone may then have to be lower than usual.

    What are the potential side effects of dapsone?

    Some people experience mild headaches or sickness. Changes in the red blood pigment (haemoglobin) can lead to a bluish discolouration of lips and fingertips that does not cause other symptoms.

    More important problems require medical monitoring but fortunately are rare. They include anaemia, shortness of breath and tiredness. This is much more prominent if you have a genetic condition called glucose-6-phosphate dehydrogenase (G6PD) deficiency. People of Mediterranean, African and Asian ancestry are especially at risk and can be tested for this deficiency before dapsone is started.

    Rarely, a serious fall in the blood count can cause fever, mouth ulcers, a sore throat or bruising. Allergy to dapsone can cause fever, a rash and swelling of glands in the neck, armpits and groins. Dapsone should be stopped if an allergy is suspected.

    Are there any other side effects if dapsone is taken for a long time?

    Rarely, prolonged use at high doses can lead to impaired function of nerves in the limbs, causing weakness of muscles in the hands and feet.

    What dose should I take?

    Your doctor will advise you here. Dapsone is available in tablet form at strengths of 50 mg and 100 mg. Normal doses would be in the range of 50 to 200 mg daily.

    How will I be monitored for the side effects of dapsone treatment?

    You will need blood tests to make sure that your blood and liver are working normally before starting dapsone. These tests will take place frequently after starting it, and thereafter every three months while you remain on the dapsone. An urgent blood count needs to be taken in between if you develop any of the symptoms or the more important side effects mentioned above.

    Does dapsone affect fertility or pregnancy?

    Dapsone can reduce the number of sperm and their mobility. It does not affect the development of the growing baby. Dapsone should be avoided in pregnancy if possible, but has been used safely. The greatest risk to a baby in the womb is in the last three months, and can be reduced if folic acid, a vitamin, is taken. Dapsone enters breast milk and can be harmful to babies with G6PD deficiency.

    May I drink alcohol while taking dapsone?


    Can I take other medicines at the same time as dapsone?

    The more important drug interactions are with probenecid (a treatment for gout), which increases dapsone levels in your blood, and with the antibiotics trimethoprim and rifamycins, which lower blood levels.

    ortant that you always tell your doctor and pharmacist that you are taking dapsone.

    Where can I find out more about dapsone?

    This information sheet does not list all the side effects this type of drug can cause. For fuller details, please look at the drug information leaflet that comes with your medicine. Your doctor will assess your medical circumstances and draw your attention to side effects that may be relevant in your particular case.

    The British Skin Foundation fund vital research into all skin diseases. To find out how you can help, please visit the British Skin Foundation website here. (Put in the serch button Dapsone)

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    I am so sorry that you are having to deal with all of this with your little guy! Don't every apologize or feel awful for being pushy when it comes to your child, family member or yourself for that matter! I have learned you are the best advocate for yourself and your family! I have to admit that as a nurse I have a good understanding medically and I become very irrate when follow through or ignorance is shown by the medical community that treats me!

    It is very possible that this could be lupus. THe other thing I would ask more questions on is the RMSF. Did you get lab work confirmation on that?? Tick borne diseases can cause central nervous system problems which can in turn cause the pain, numbness and other issues. I would keep that in the back of your mind as well if your answers have not been fully met with that.

    Keep us posted and I hope your little guy gets a diagnosis soon and gets on the road to recovery!
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    hi mummysquared,
    i am an almost 50 year old white australian.
    i have had issues most of my life.
    i can definatelly date some of my issues to about 13 / 15.

    i did have other issues that cannot be followed up, as the doctor is dead, and the hospital has burned.
    i had a few black outs. about age 5 and 6.

    when i was being diagnosed i remember having 15 vials of blood taken.
    this was to remove possible ailments, all at once.
    when i spoke to the nurses, they said my rhuemy did this regularly.

    i know that there is 63 auto immune disorders.
    it is possible that your son could have more than 1 of them.

    i have just had my 22 year old have throat cancer removed...........
    so i know some of the pain you feel when your young one is ill.

    wishing you have a good doctor who canhelp to diagnose what is happenning.

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    Hello mommysquared,

    Hows your son keeping healthwise since you joined up...please keep we updated when possible.

    Terry xxx

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