Abby - Cutaneous JXG
Abby is a beautiful healthy 10 year old ("almost 11") that was diagnosed with JXG at about 5 months old in the Netherlands. We had a second opinion here in the states as well . At that time we were told not to worry it "will go away" . No one could tell us any more information, so we turned to the Internet as many do. That is where we found Jeff Toughill & his site. The dermatologist we saw that confirmed the JXG diagnosis released her from cars and we had to followup with or pediatrician. Abby has had a cardiac ultrasound, ophthalmology test, a complete lung function test, all PERFECT!. When she was about 2 or 3 year old her lesions started to go away and today she has no marks and only the smallest difference in skin color where they were. Abby is an extremely active 10yr old who plays travel soccer and loves to sing and dance and swim. Hope her story makes many of the parents with little ones that have been diagnosed with JXG breathe a little easier...the things we read about at first were very scary. We feel we will always worry a bit more about her because of this, but enjoy everyday we are so lucky to call her ours. Nan (Abby's proud mom). USA.
Addison - Cutaneous JXG
Andrew - Cutaneous JXG
My son Andrew just turned 3 months old on October 9, 2010. When Andrew was a little over 2 months old, we noticed a slight bump towards the top of his head. It looked like a very small bump. We took Andrew to his pediatrician and his doctor said that it wasn't anything to worry about and that it could possibly just go away. I took Andrew to another pediatrician for a second opinion on the bump. The bump had increased slightly and the 2nd opinion was the same, nothing to worry about and it could go away. The pediatrician had another doctor see my son that day, this doctor said that he didn't believe the bump would go away and he would personally have it removed. I was given a referral to a dermatologist for another opinion. Scheduled my appointment with the dermatologist and she measured the bump and took a picture of it. She had me reschedule to come back in 4 weeks. She stated that it wasn't anything serious and it could possibly go away.Two weeks later the bump grew larger and on the tip of the bump it looked like there were small blood vessels inside. I scheduled an appointment with the dermatologist. When the dermatologist came into the room, she immediately said "let's just take it off." I agreed and wanted to see what the biopsy showed. The bump on Andrew's head was removed and he received a few stitches. A week later I received a call from the dermatologist and she stated that the results had come in and that it was nothing that I should be concerned with. She said that Andrew had JXG, and then she spelled it out for me. She said that he could possibly get a few more bumps, but that they would go away as he got older. My friend's call me the GOOGLE QUEEN, so that night I googled Juvenile Xanthogranuloma and read everything that I could find on this "rare disease." I read many articles that spoke highly of Dr. Kenneth McClain from Texas, since I am in California I knew I wouldn't be able to see him, so I e-mailed him and asked him for a referral for a doctor in California who might be more familiar with JXG and children, he quickly responded. I am currently trying to schedule an appointment with this doctor who is in Los Angeles. I saw Andrew's dermatologist and she removed his stitches and provided me with a copy of the pathology report. She printed up an article for me about JXG and rescheduled me to bring Andrew back in six weeks. She also referred me to a pediatric optometrist. Andrew is scheduled to see him on October 19, 2010. Julie (Andrew's proud mom). USA.
Addison's JXG was noted at about 2 months old (March 2008). Our primary care physician didn't know what it was, and sent us to a dermatologist - one that specialized in plastic surgery! We weren't happy, but, we wanted answers quickly, so we went to see him. You will see she had an initial single JXG. That was excised (the dermatologist wasn't sure what it was, but was leaning toward JXG). It was biopsied, and confirmed to be JXG. Shortly after the initial excision, though, she had a flair up with a lot more showing up in the same area. She also had 4 little JXG bumps show up on the right side of her nose, about the same time. The pictures of her nose are the only time I've been able to get a good photo of them. They are hard to see under normal circumstances - you have to be up close to see them. (They've always been flesh-toned, not orange or red). We stuck with him for about 3 months, but he didn't have anything to offer. So, we asked for a second opinion, and to be sent to a pediatric dermatologist. We got the referral to Children's Hospital in San Diego. They also sent us to a pediatric ophthalmologist. Ours has experience with JXG (although he's only seen it a couple of times in 15 years). Taught us what to look for. Had us come in every six months, but now we're on a yearly visit just to make sure everything is okay. About this time last year, they really started to decrease in size. She has one that she's a 'bubble', but otherwise, the rest have flattened out pretty well. We have an appointment with our dermatologist next week. It's been a year since we last saw her. We're confident that she's going to send us away for another year. Like most of you, we didn't know what was up at first, and did a lot of homework online. Thanks to Maria for putting together this group. I'm always happy to talk (especially via email) about our experience and what we know. We've been very open with our family, even if they don't understand how dangerous this disease can be sometimes. (We do our best to educate, but it's been a challenge sometimes!). We generally don't say much to strangers, usually just brushing it off if they ask. David (Addison's proud daddy). USA.
My son Andrew just turned 3 months old on October 9, 2010. When Andrew was a little over 2 months old, we noticed a slight bump towards the top of his head. It looked like a very small bump. We took Andrew to his pediatrician and his doctor said that it wasn't anything to worry about and that it could possibly just go away. I took Andrew to another pediatrician for a second opinion on the bump. The bump had increased slightly and the 2nd opinion was the same, nothing to worry about and it could go away. The pediatrician had another doctor see my son that day, this doctor said that he didn't believe the bump would go away and he would personally have it removed. I was given a referral to a dermatologist for another opinion. Scheduled my appointment with the dermatologist and she measured the bump and took a picture of it. She had me reschedule to come back in 4 weeks. She stated that it wasn't anything serious and it could possibly go away.Two weeks later the bump grew larger and on the tip of the bump it looked like there were small blood vessels inside. I scheduled an appointment with the dermatologist. When the dermatologist came into the room, she immediately said "let's just take it off." I agreed and wanted to see what the biopsy showed. The bump on Andrew's head was removed and he received a few stitches. A week later I received a call from the dermatologist and she stated that the results had come in and that it was nothing that I should be concerned with. She said that Andrew had JXG, and then she spelled it out for me. She said that he could possibly get a few more bumps, but that they would go away as he got older. My friend's call me the GOOGLE QUEEN, so that night I googled Juvenile Xanthogranuloma and read everything that I could find on this "rare disease." I read many articles that spoke highly of Dr. Kenneth McClain from Texas, since I am in California I knew I wouldn't be able to see him, so I e-mailed him and asked him for a referral for a doctor in California who might be more familiar with JXG and children, he quickly responded. I am currently trying to schedule an appointment with this doctor who is in Los Angeles. I saw Andrew's dermatologist and she removed his stitches and provided me with a copy of the pathology report. She printed up an article for me about JXG and rescheduled me to bring Andrew back in six weeks. She also referred me to a pediatric optometrist. Andrew is scheduled to see him on October 19, 2010. Julie (Andrew's proud mom). USA.
Ava - Cutaneous JXG
My gorgeous little 7 month old baby girl, Ava was diagnosed with JGX at 3 months. She had just one lesion on her head. The dermatologist said it was nothing to worry about and it would regress. She has since developed 5 more lesions on her head and neck. I got her into Children's Hospital of Philadelphia to see the Chief of Pediatric Dermatology who said they are cutaneous and look asymptomatic. He felt that an appointment with Oncology was not medically necessary at this time. We have an appointment with Pediatric Ophthalmology mid November. Lori (Ava's proud mom). USA.
My gorgeous little 7 month old baby girl, Ava was diagnosed with JGX at 3 months. She had just one lesion on her head. The dermatologist said it was nothing to worry about and it would regress. She has since developed 5 more lesions on her head and neck. I got her into Children's Hospital of Philadelphia to see the Chief of Pediatric Dermatology who said they are cutaneous and look asymptomatic. He felt that an appointment with Oncology was not medically necessary at this time. We have an appointment with Pediatric Ophthalmology mid November. Lori (Ava's proud mom). USA.
Belle is a gorgeous one year old girl who was diagnosed with Skin JXG by biopsy at 4 months. She has seen many specialists including many dermatologists, pediatric ophthalmologist, genetics specialist, pediatric oncologist. Her tests include blood work, MRIs of the head and spine and CT scans of the chest, abdomen, and pelvis. She got about 30 lesions. Most of which are in her scalp, one above her eyebrow and one on her chest. Most are fading and flattening out! Jen (Belle's proud mom). USA.
Our daughter Beth, was about 2 months old when her first bump appeared - on the back of her head. It was easy to see as she didn't have much hair. She then developed another few bumps, seemingly to appear overnight. One under her chin, one behind her knee, one on the back of her shoulder blade. We took her for her three month check up and mentioned these bumps to my primary pediatrician. The pediatrician referred us to a pediatric dermatologist straight away. At our first appointment with the dermatologist she was biopsied. About a week later it was confirmed. The dermatologist had heard of JXG but had never treated it. That made me think "wow, what are these bumps?" So we got on the Internet and did a lot of research - and got very worried. There were a lot of different severity of this disease - what was Beth's outcome going to be? By the age of about 12 months, Beth had about 15 bumps. We had been seeing the dermatologist every 3 months or so and he was monitoring us, we also had an eye examination (luckily no involvement) - but we decided that we wanted a second opinion- which my dermatologist gladly agreed to and helped research the best ones and closest for us. So off to Duke University NC we went, and met the Director of Pediatric dermatology with many more years of experience than the current pediatric dermatologist. The greatest news came from that Dr appointment. He said that "the bumps are changing" so this meant that it was the end of the disease. To this day Beth is nearly two years old and hasn't had any more bumps appear. The bumps that she has are shrinking and flattening out. But still a pale apricot color. She is a happy healthy child, which we are very grateful for. Lisa (Beth's proud mom). USA.
Braeden - Cutaneous JXG
Before I begin our “JXG saga” I would like to acknowledge the fact that we consider ourselves to be very lucky. We had never even heard of JXG, and could certainly not imagine the effects it could potentially have on children. Our story is by far not the most dramatic or eventful, but it is our wish that at least our physician contacts can help another family. Braeden is our first-born child and had a very typical pregnancy, birth, and infant experience. At 4 months of age, I noticed a small, brownish spot to the right of his mouth. Thinking it was the beginning of a freckle, I watched it and casually brought it up to my pediatrician at the time. She informed me that she thought it was a viral wart. My Mommy instincts immediately told me that wasn’t right and when 2 more spots showed up a month later, I knew something was up. Again, I showed them to her, and again she told me they were viral. Among other reasons I ended up switching to another practice the next month. On my very first appointment, they not only questioned the marks, which had now grown and multiplied, they told me to go to CHOP (Children’s Hospital of Philadelphia). If you are from the Northeast, you know these are never words you want to hear. They mumbled something about a possible link to Leukemia and I left the office in hysterics. I called CHOP later that day and was told their first appointment available was June (it was February). Stomachs churning, there was no way my husband or I could wait four months to be seen. We decided to go to a dermatologist through our local University Hospital (UMDNJ). Dr. Amy Pappert performed a punch biopsy and told us she felt it would either be JXG or Histiocytosis and there was a small chance of Langerhans. It was now early April, and Braeden had more than 15 lesions on his body. We went home and Googled everything we could find on the topics and worried. The first oncologist said the sample was inconclusive. We learned just how rare these diseases are and truthfully not many physicians know a whole lot about them. Another oncologist concluded it was JXG, but we knew we needed the experts at CHOP to be sure. After he reviewed the slide, Dr. Albert Yan from CHOP finally got to meet with us in early June, just a few months later B now had over 30 lesions on his body. Dr. Yan was amazing. He had seen many children with JXG and did acknowledge that our son did have quite a bit more lesions than the average case. He immediately sent us over to Dr. Stephanie Davis, a pediatric ophthalmologist, to check for ocular involvement. She too was very familiar with JXG and had even given presentations on it at conferences. Dr. Yan explained the link between Leukemia needed to involve Neurofibromitosis, which he did not feel Braeden had. Needless to say, were more than relieved. He spoke to us about how we could expect the lesions to flatten out over time, but not really disappear. We are lucky that most of his lesions are more orange in color and have already begun to flatten out-though this just started happening recently (within the last 6 months). He still has more than 40 lesions, mostly on his face, legs, buttocks and trunk. We were not offered or told we needed a CAT scan, as I read many families do-and I often wonder if we should…We continue to go to CHOP once a year to Dr. Yan and Dr. Davis. We still worry about possible issues down the road, as we do not have many resources on the topic. We can also report that he did end up to be a very allergic child and suffers from moderate-severe eczema. We hope our story helps another family. We have gotten so much relief from reading the stories from other families. We are all in this together. Much love and luck to your families and kiddos as they continue on this journey. Melissa (Braeden's proud mom). USA.
In July 2010 I noticed a neon orange spot on my 13-month-old daughters' scalp. It looked like her 4-year-old sister got a hold of a highlighter and poked her in the head with it. I found 2 spots and called her pediatrician to get a referral to a dermatologist. They saw her immediately at her primary and gave us the referral. About 3 weeks later she was seen by a dermatologist who said she had never seen anything like it. She brought a colleague into the room and they assumed JXG, but asked that I returned to the main hospital downtown the following Monday for the head of dermatology to look at and get a few more opinions. The following Monday Brynlee was seen by three additional doctors. They all concluded JXG. I was told that they would not biopsy it because they were certain that this is what it was and they did not think it was necessary to cut into her head and cause her pain over something that would eventually go away. The dermatologist assured me that I have nothing to worry about with this condition. They then pointed out that this dark orange mole like spot next to her eye was also a lesion and told us that we needed to get a referral to ophthalmology immediately. The Ophthalmologist cleared her from ocular JXG and we are now waiting to go back to her primary doctor in late August discuss "what's next?". Tanya (Brynlee's proud mom). USA.
My name is Stephanie Mengeling, my son, Davyn Mengeling, is five years old and has battled systemic/refractory JXG of the brain, lung and bone since 06/22/08. He has six brain lesions resulting in vision loss, sixth nerve palsy, seventh nerve palsy and Belles palsy and innumerable bone lesions. He is under the care of Dr. James Whitlock at Vanderbilt Children's hospital, Dr. Ray Paise at East Tennessee Children's hospital and Dr. Kenneth McClain in TX. Davyn endured a brain biopsy 07/2008 and two bone biopsies in 2008 also. He has been on all known treatments (Vinblastine; Vinblastine, oral Methotrexate, and oral 6MP; 2CDA (6 rounds); high dose Methotrexate (17 rounds); and a combination of Ara-C and Etoposide (3 rounds). These treatments have either not worked or have shown little improvement with lesions eventually growing or multiplying later in treatment. During treatment he lost his hair completely and endured frequent blood and platelet transfusions and required Neupogen for his WBC. At this point we have been told by both our doctors that they do not have faith any other harsher chemo regimen would be successful and to watch and wait. We have been given the choice of pursuing a harsher treatment course, but have been warned of the devastating effects it would have on his system, while also having little faith it would be successful in treating what Davyn has. At this point all treatment has been stopped and we have been fortunate enough to have received a miracle and after stopping treatment his lesions seem to be getting smaller for some reason and two of the brain lesions have disappeared completely. He will never be considered in remission, but we have just celebrated him being “off treatment” for awhile. He is a very brave and strong little boy with an amazing spirit and love that knows no bounds. We have met many brave warriors along our way and are privileged to fight this fight with them. God has his hand on our children and I get to see that every day. Thank you for posting his story and spreading awareness of our brave children. Stephanie (Davyn's proud mom). USA.
Emma is an energetic 12 year old girl who enjoys singing and dancing, and hanging out with her BFF Meghan. Emma has a rare late-onset case of jxg. She got her first 'spot' two years ago and they have continually spread over her entire scalp, ears, neck, trunk, and now her eye. The past seven months have been a trying time of continual travel for doctor visits, multiple biopsies, blood draws and MRI's. During this time, she has shown great poise and faith. We are very proud of the way she handles the whole thing. Despite very obvious physical effects, she refuses to let this disease dictate her attitude or change her love of life. We are currently applying to participate in trials at the National Institute of Health or Texas Children's Hospital in hopes of reversing this process. Jessica (Emma's proud mom). USA.
Jade is one year old and has been diagnosed with JXG -ocular involvement - and secondary glaucoma. The hardest part of our journey with JXG was the delay in diagnosis and medical treatment due to the rarity of this disease. Glaucoma caused by the JXG lesion in Jade's eye is an extremely painful condition and if left untreated causes vision loss or blindness. Jade's symptoms started at four months of age but she was not diagnosed until 11 months of age. The extent of her vision loss is unknown at this stage due to her age, tests indicate at this stage she is almost totally blind in her left eye. She does have irreversible damage due to the cornea being stretched however she may regain most of her vision. Jade sees a dermatologist on occasion and we frequently see the wonderful Dr John Grigg in the Eye Clinic at Westmead Childrens Hospital. We are so fortunate to have our beautiful smiling girl and the support of other parents going through the same. Skye (Jade's proud mom). Australia.
Our Juan Iñigo (we call him Jugo) was diagnosed, at eight (8) months old, with juvenile xanthogranuloma through biopsy. He is now fifteen (15) months old and his lesions have multiplied. His face, arms, legs and neck are now covered with lesions. Hopefully, and we pray, no more lesions will appear. But regardless of his lesions, Jugo remains to be one happy, little boy who loves his little sister Julia very much. Judith (Jugo's proud mom). Philippines.
Justin had what we thought was baby acne at birth on his chest wear the shirt collar would lie. However, it kept growing and seemed like a fatty cyst. After it continued to grow, the peds doc sent us to a general surgeon since Dermatology was backed up 6 months or more. At 4months, we had that first appt and told to come back at 6months. 3 weeks before that appt, the lesion turned neon orange in color that I thought I didn't get all the carrot or sweet potato off him and it "starbursted" changing size and shape. When we took him back to the surgeon, things got serious fast and within a week we were doing general anesthesia for a biopsy that confirmed Juvenile Xanthogranuloma. We were told to see Derm as scheduled but no one really had heard of this disease and the research I had done scared the heck out of me. I called CHOP Oncology and the nurse took my info to run past the attendings that day. Within hours, I was being scheduled for an appt days later with not one but two oncologists. We were scared to death and very little was out there for support. Some of the parents of LCH kids were kind and sweet enough to offer support and I am grateful for them. With Justin being then only 7months old, they felt it wasn't necessary to sedate him again to do full body scans since 80% of skin lesions are single without systemic findings. Although, that was to reassure us.....it didn't completely and I always wonder if JXG is somewhere else just waiting to send us down that chemo/steriod route that so many parents are facing with warriors with histiocytosis. We pray for them and count our blessings. Kim (Justin's proud mom). USA.
Kaleb - Cutaneous JXGMy Son Kaleb is 2 1/2 years old, the spots frist made their appearance at 1 and I watched it for a whole year before I showed his doctor. I'm a first time mom and thought maybe it was a allergy or something I tried over the counter creams and such, thinking it was going to go away. He never showed any other symptoms and is growing normally and is very healthy otherwise. But the older he got the more spots that showed up. The spots themselves are flat and bright orange. They first showed up on his back and were very small, then they spread to his sides and then to his chest, and now he even has some on the back of his right knee. When I first showed the doctor at his 2 year check up he wasnt alarmed, but sent me to a dermatologist. From there a biopsy was taken and came back as Juvenile Xanthogranuloma. The Dermatologist is known to be a good doctor but didn't know anything about it, and suggested we do a lipid profile and then sent us to a pediatric gastointeroligist. He ran more blood work which all came back normal and said he wanted to wait six months and run the tests agian. I wasn't satisfied. I wanted answers and no one could give me any. so I went back to my sons doctor and told him I wanted to start all over. Finally I was referred to a pediatric dermatologist, who had seen it before and explained so much more to us, the second biopsy was taken and we are still waiting to find out more. We are still unaware if our son has systemic or Cutaneous JXG. From what I have been told the next step is to see an optomotrist, to check for ocular involvement. It's so crazy and rare my husband and I were really taken aback by the whole thing. He has about 30 spots now they are small and his clothes pretty much hide them. I just wanted to share our story (thus far) and to let you know how this sight has been very informational and helpful. Thank you for sharing your story and allowing others to do the same. I don't feel so alone in this whole thing. Joy (Kaleb's proud mom). USA.
Mason was diagnosed with JXG (Juvenile Xanthogranuloma) at 5 months. Mason had multi-system involvement - skin, brain, brain stem & spinal column, and lungs. The diagnostic portion of Mason's life were a very stressful and a long two months, we struggled to figure out what Mason had and what we could possibly do about it. Before it was properly diagnosed, we were told it was, at best, neuroblastoma (a brain cancer), then were told that it was a rare cancer with no known treatment. There was much uncertainty with Mason's prognosis and what was first discussed with us was grim. Mason had a very atypical presentation for this disease. His age and amount of spread was alarming and indicated a very aggressive and potentially fatal disease. Mason has had multiple biopsies, MRI, CATscans, blood draws, and Chemotherapy treatments (2CDA). Throughout it all, he has shown so much strength, courage, and incredible resilience. We are now certain that he does not need more treatment. His chemotherapy has decreased the spread and Mason is now in remission. He will be scanned for a long time to see if there is stable/decreased disease, what resides is disease only in the cerebellum and tail bone nerve, the rest of his disease has resolved. What is left and identified as "disease" could be scar tissue. He is doing great and a very happy little boy! Lee (Mason's proud mom). Mason' mommy made an awesome video on his honor, check it out: Mason's story . USA.
Morgan - Cutaneous JXG
Shortly after Morgan was born, we noticed a dark spot on her chest that almost resembled a faint bruise. We thought, and her pediatrician agreed, that it was a birth mark. We thought nothing more about it. When she was about two months old, something started to grow in the middle of the dark spot, it looked like a mole. During this time, she had also developed what we thought was a mole on her neck. At this point we weren’t worried. Over the course of the next month, more and more of these red growths appeared and grew larger. We had a four month check up scheduled so we decided to wait until then and talk to her pediatrician.He looked the lesions over and said that they were “interesting” and he wanted us to go see a dermatologist. We had to wait a few weeks for the appointment. February 9th we met with the dermatologist and he said that there was a large range of things that it could be so he wanted to do a biopsy to verify what it was. He was leaning towards JXG or Mastocytoma. We returned to the dermatologist ten days later to have the stitches removed and to meet with the doctor. He told us that it was confirmed to be Juvenile Xanthogranuloma and he explained a little bit about what it was, he even got out his medical books and showed us some pictures in the books about it that looked almost identical to what was on Morgan. He told us that he had seen this once in the past and that infant actually ended up having Leukemia as well so he wanted to run a blood test to rule this out even though it was very unlikely, and not shown to be linked. He also referred us to have Morgan’s eyes tested and he sent over the records to the eye doctor so the he would know what was going on. The eye appointment determined that there was not ocular involvement of the disease at this time. She is now six months old and the lesions are still appearing and growing; she currently has over 35; it is still believed that the disease remains to be only cutaneous. So, we will continue to monitor Morgan and meet with the doctors as needed. In the meantime, we are trying to learn how to explain the disease to friends and family. The hard one for us is learning how to explain it to other children such as cousins or friends of my older daughter. Morgan is the happiest most smiley baby with tons of personality and spunk, and she is such a joy to be around. We hope that people can continue to look past the lesions to see the amazing soul inside. Laura (Morgan's proud mom). USA.
Shortly after Morgan was born, we noticed a dark spot on her chest that almost resembled a faint bruise. We thought, and her pediatrician agreed, that it was a birth mark. We thought nothing more about it. When she was about two months old, something started to grow in the middle of the dark spot, it looked like a mole. During this time, she had also developed what we thought was a mole on her neck. At this point we weren’t worried. Over the course of the next month, more and more of these red growths appeared and grew larger. We had a four month check up scheduled so we decided to wait until then and talk to her pediatrician.He looked the lesions over and said that they were “interesting” and he wanted us to go see a dermatologist. We had to wait a few weeks for the appointment. February 9th we met with the dermatologist and he said that there was a large range of things that it could be so he wanted to do a biopsy to verify what it was. He was leaning towards JXG or Mastocytoma. We returned to the dermatologist ten days later to have the stitches removed and to meet with the doctor. He told us that it was confirmed to be Juvenile Xanthogranuloma and he explained a little bit about what it was, he even got out his medical books and showed us some pictures in the books about it that looked almost identical to what was on Morgan. He told us that he had seen this once in the past and that infant actually ended up having Leukemia as well so he wanted to run a blood test to rule this out even though it was very unlikely, and not shown to be linked. He also referred us to have Morgan’s eyes tested and he sent over the records to the eye doctor so the he would know what was going on. The eye appointment determined that there was not ocular involvement of the disease at this time. She is now six months old and the lesions are still appearing and growing; she currently has over 35; it is still believed that the disease remains to be only cutaneous. So, we will continue to monitor Morgan and meet with the doctors as needed. In the meantime, we are trying to learn how to explain the disease to friends and family. The hard one for us is learning how to explain it to other children such as cousins or friends of my older daughter. Morgan is the happiest most smiley baby with tons of personality and spunk, and she is such a joy to be around. We hope that people can continue to look past the lesions to see the amazing soul inside. Laura (Morgan's proud mom). USA.
Santiago was diagnosed with Skin JXG via skin biopsy at 8 weeks of age. His lesions started at 4 week old mainly on his scalp and face and after 4 months they stopped developing on his upper body and moved to his extremities and back. As of today, he is six month old and has over 70 lesions in total but the speed of the condition has decreased dramatically in the last two month!. Santi sees his dermatologist and ophthalmologist every three months. Other than the bumps, he is a healthy and happy baby that makes everybody around him smile instantly. He has a very sweet and content soul and his light shines everywhere he goes. His mom and dad had a hard time at the beginning of his diagnosis (more mom than dad) but they are moving towards acceptance and learning to cope with the condition. It has been a blessing to be able to connect with other parents that are going through the same. Maria (Santi's proud mom). USA.
Our son Sean, now 4, started off with a small red bump on his right cheek in early August 2008. He started with a small mass on his cheek that we thought was a bug bite or blemish. Within 2-3 months it quickly grew to be over 2cm and smack in the middle of his cheek. He also had multiple chalazion in his eyelids, and we ended up going in to have those removed (which is what we thought the JXG was-perhaps related to his eyelid bumps?). He ultimately had 10 chalazion drained and removed from his eyelids and the pediatric ophthalmologist told us to see an Oculoplastic Surgeon for his cheek. That¹s when he recommended surgery to remove the mass as he believed it was either a hemangioma or malignant skin cancer. He had surgery to remove the bump from his face and got the diagnosis just after surgery. We were thrilled when they told us ³benign rare tumor disorder² however we had no idea what that meant or what to do next. Our pediatrician prescribed antibiotics, our dermatologist gave us $100 for 3oz drops, and the allergist put him on Clarinex. I finally asked them all to consult as none of them had seen JXG or knew how to treat and we were quickly becoming non-compliant with all of their medication recommendations. We found the HAA site and got in touch with them and they recommended Dr. McClain, who thankfully is only 3 hours away in Houston. We were able to see him and his team last summer for a consult, which took an entire day but was worth it. He said they get 1-2 cases per year of JXG and that no one studies it. We wanted answers and while we were hopeful that his JXG was limited to his skin, we had no idea. It had grown so quickly we were concerned about others coming on rapidly and us not knowing. He did blood work at the appt and ordered us to have a head CT and abdominal ultrasound to rule out systemic JXG. We did those at home in Austin a few weeks later and while the actual CT process was a nightmare for us (our little guy didn¹t respond well to sedation-he had a paradoxical reaction and was WIRED) the ultimate results were negative for internal bumps. We were thrilled but still left wondering if and when he¹ll get more. How and why does his body react this way? He also has asthma and eczema so we¹re always wondering if they¹re somehow related and don¹t want treatment for one ³issue² to impact the other. So far we have an allergist, a dermatologist (adult dermatologist who sees kids and prescribed the drops), a pediatrician, a pediatric opthamologist that we see every 6 months now, and Dr. McClain. We did just get recommended by the allergist to go see a pediatric dermatologist because of two new spots on his back and chest, however we can't get in to see him for four months. We also signed up for Dr. McClain's study on JXG, and will do blood work at our next Dr. appointment. We'll do whatever we can help with to learn about this disorder and hopefully find a cure for others. He has a few new growths on his chest, face and neck, and we're keeping a watchful eye for others but no more surgeries or drops for now. We're grateful for the support of this group and will keep thoughts and prayers for others who are actively fighting this disease. Suzanne (Sean's proud mom). USA.
Tallulah Grace Harwood became afflicted with JXG last June when she was 2 1/2 years old and we discovered a reddish, orange mole like cyst on her back. The Lord spoke to my spirit and said "Fear Not for I am with You, (HE is with us all)". We quickly got our prayer partners to cover her in prayer while momma warrior went about the quest to get Tallulah the best care. Many thanks to the Histiocytosis Society for leading us to a top hematologist/oncologist at USC Childrens Hospital. To God Be ALL the glory for what he has done for precious Tallulah Grace because all the blood work, full skeletal xrays, full body ct scan came back cyst free...We have graduated to six month blood work and follow up's with hematologist/oncologist and we approach are assault on JXG with prayer and whole food based nutrition. Their is no affliction greater than the healing power in Jesus! Tallulah loves to laugh and is always saying thank you (for everything...all day long.)...truly her name is her. We call her grateful Grace. I learn so much from her. Lord, thank you for the blessing of Tallulah Grace. Kimberley (Tallulah Grace's proud mom). USA.
William Forget-Bergeron. Born on the 5th of June 2009. This is William’s story, my little warrior.
At 2 weeks old, William had to be operated under generalized anaesthesia to have an abscess removed. It had been draining from inside, and doctors feared for blood poisoning. The surgery went well. The recovery, taxing. Soon, the infection started again on the site, and another abscess started growing next to the first one. At 1 month old, William gets operated once again. The operation went well, but the recovery was harder. William was experiencing a lot of pain. Although the first abscess site was finally removed and under control, the other one, that was operated as well, continued to grow despite the surgeon’s efforts to stop the spread of infection. Luckily, this one was draining from the outside, and it has been draining for 3 months until it finally closed when William reached 4 months old. Little did we know that the break, which had not even begun, would not last. I started noticing a bump behind William’s head. A zit? Hum. Maybe. I kept watching it grow, until I got worried. Went to my doctor. ‘’ Hum…It looks like a zit. It’ll go away ‘’. A week passes. Two more bumps show up. One on the left side of the head, the other behind the ear. Okay. I go back to the doctor, to be told, once again, they are zits. Apparently, I worry too much. They see this a lot with mothers of young babies… So I swallow back my fears and I go back home to watch those bumps get bigger, and bigger… And one day, I just decided I had enough. I knew they were not zits at this point, and if my doctor could not tell me better, I would seek answers somewhere else. I asked to be referred to a specialist, and we were referred to a paediatrician. While waiting for my appointment, I did something I had never done before: surf internet for similar bumps. It took less than 15 minutes for me to be absolutely and completely terrified. So, I closed up the screen and waited for my next appointment, which was not the greatest. The paediatrician did not know what it was either. He guessed it could be an infected cyst? Anyhow, we went to see a dermatologist, and she is the first one who mentioned JXG (juvenile xanthogranulomas ). ‘ Xantho what? ‘ was my reaction….She was not sure, of course, because she had only seen another case like this in her 20 years career ( great, that doesn’t sound good….). And then, life as we knew it stopped abruptly. This was in early January 2010. William was 7 months old. Since then, we travelled down to a bigger center where blood work was done, and another visual diagnosis of JXG was made. No ocular JXG either. Follow up every 2-3- months…. Can he grow more lesions? Yes, it’s possible. Can he have some inside as well? Yes, it’s possible…..and so many more questions with so little answers. This medical condition is so frustrating. In a couple of weeks, William will get a punch biopsy to confirm the diagnosis (I guess they should have done this already, but we did not know, and so did not ask for it). I do not know if he will receive scans or anything of the sort. We will wait to hear from the specialist. In the mean time, little William is catching up on his growth and showing he can stand up!!. He is such an adorable boy! We pray for all of you guys and thank Maria for creating this support group which is much needed! Ariane (William's proud mom). Canada.
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