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Thread: Mom of 9 year diagnosed with atypical lupus

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    Default Mom of 9 year diagnosed with atypical lupus

    Hi my name is LeeAnne and I am mom of four terrific kids all of whom have some chronic health problems. My youngest Samantha has chronic intestinal pseudo obstruction and has a GJ tube for management and most of her feeding and hydration. She shares gastroesophageal reflux, asthma and a metabolic bone disorder with her sibs that makes them osteoporotic and have joint hyper-mobility. The cause of Sammi's intestinal pseudo obstruction is unknown, though 4 years ago she was worked up when she was very ill and unable to tolerate anything in her intestine, spending most of 2002 on IV nutrition(TPN). At that time she had an ANA of 1:160. She was worked up for scleroderm and dermatomyositis, but neither was found. She has continued to have problems with small bowel bacterial overgrowth, ielus, dilated loops of bowel, but we have muddled along fairly well coping with bumps and hospitalizations as necessary. Last fall she began to complain of "headaches" which actualy seem to be brief severe stabbing pains in her temples or frontal, I also noticed more bruising, an elbow rash which she has had come and go for years now persisting, looks like spider like veins on the back of her forearms, we always thought was triggered by bowel infections, she was more tired then usual (she normally needs 14 to 15 hours of sleep a night anyway), and she was complaining more of belly pains like someone "kicking me", as well as pains in her hips, ankles, neck and jaw. she also has frequent mean nasal and oral ulcers. By March she had what we thought was a recurrent yeast infection in her mouth(thrush), after several months of no response to three different antifungals we cultured and found it is actually hairy leukoplakia. The ped did blood work showing an ANA of 1:1,280 and sed rate of 30 and sent her back to rheumatology. They did all the traditional lupus tests as well as scleroderma and wegners granulomatous, no other positives. However she was also seen by a sub specialty research immunologist who tested and found she has an immune dysfunction, inadequate signaling response to fight bacterial or yeast infections and overactive interferon alpha. GI did endoscopy and colonoscopy and saw alot of reverse motility as well as a very dialted colon(pseudo obstruction issues) inflammation in her colon and biopsies showed esophagitis, gastritis, duodenitis and colitis but not IBD(crohns or UC). The rheumie said watch and allow this "autoimmune process" to evolve..if butterly rash, unexplained fevers, swollen red joint return, but for now only 3 of the clinical criteria so "no lupus". This week we saw the research immunologist and she most definitely disagrees, said the hairy leukoplakia, lab tests, GI issues and symptoms are ALL indications of atypical lupus and that we need to intervene before more damage is permitted. She is prescribing Keneret, a daily injectable mild immunosuppressant and wants to put her on high dose IVIG when she can get insurance approval. Would really appreciate any feedback, experience, words of wisdom...My hubby and I were both relieved in an odd sense to finally have a doc label it, but had hope it would be something "simpler" like Crohns. Trying to emotionally take in another frightening chronic illness, and do the best we can for our precious Samantha. Thanks if you read this far..
    Lee Anne, mom of four, all with some chronic health issues:
    Lauren, 23, college senior, classical clarinet performance and music ed major with one semester to go! who has; asthma, enivro allergies, IBS, GERD, visual impairment,( 5 eye surgeries) otosclerosis with hearing loss, recovering post late stage neurological lyme infection
    Amanda, 13, budding young artist, sweet 7th grader who has;hypothyroidism, peripheral neuropathy, psoriasis,enthesitis, psoriatic arthritis, chondromalacia patellae,metabolic bone disorder with spondylolisthesis, hyper mobile joints, osteoporosis, hx multiple fractures, one year of IV Pamidronate.z score up from -3.0 to -1.0, GERD, constipation, EE, asthma, IEP "other health impaired" accommodations in school, Synthroid 75 mcg, FloVent, Prilosec, Zantac, reglan, Indocin, prednisone, methotrexate weekly sub Q injections, Citracal, Elavil, Zyrtec, xoponex .
    Matthew, 11, naturalist, animal lover, math wizard and book worm who has: multiple anaphylactic food allergies, antibiotic allergies, environmental allergies, severe asthma, EG, EC, GERD, metabolic bone disorder, osteoporosis, hyper mobile joints, mild scoliosis, migraine, simple partial seizures..Prevacid, reglan, AdVair 500/50, albuterol MDI, Zyrtec 10, Singulair 10, FloNase, Keppra, Elavil, TOBI 300 for asthma flares, Xoponex and Atrovent..for asthma flares. No dairy, no legumes(peas, chick peas, kidney beans etc...), no peanuts, no tree nuts, no cantaloupe, IEP home tutored
    Samantha,9 y/o, bright, loving, independent, wise and spiritual little girl, who has severe GERD, intestinal dysmotility/ pseudo obstruction, GJ tube for J feeding, small bowel bacterial overgrowth syndrome, asthma, mild allergies, metabolic bone disorder, osteoporosis, hyper mobile joints, history of multiple fractures minimal trauma, atypical Lupus, allergic to Propofol and Versed. on reglan, Nexium, Zelnorm, Erythromycin for motility, Miralax, Zyrtec,Elavil, alternating abx for overgrowth, Pentasa, Keneret

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    Hi LeeAnn;
    Your family sounds a bit like mine. Each member of my family (nuclear and extended) has some sort of auto-immune disease - most of us suffer from more than one.
    There has been a lot of debate as to weather or not these illnesses are hereditary or genetic. There has been no conclusive finding yet, but a lot of researchers are leaning towards the genetic predisposition of some of the illnesses suffered in both your family and mine.
    I am glad that your daughter's doctor recognized that treatment needed to be started right away in order to ward off any furhter development of the disease. Most of us have suffered from the nasal and oral ulcers (which can also affect the hands, feet, scalp etc.), the bowel problems, the debilitating fatigue, the rashes, the headaches, the TMJ, the extreme joint pains (hip, ankles, knees, wrists), and the inability to fight off infections due to our compromised immune system. Here high ANA along with her symptoms and I'm sure her lab results would indicate that she, more than likely, does have a form of Lupus. Almost everyone with active lupus has a high ANA (even though a high ANA alone is not an indicator of lupus). I am not a doctor and cannot diagnose her, but I am happy that she is starting treatment.
    You and your husband are to be commended for the wonderful and loving way in which you are caring for all of your children, especially since you say that you have some chronic issues yourself.
    If you have any questions at all, or are just concerned and want to talk or just need to know that you are not alone, please come to us! We are here for you to help you and your husband and your children in any way that we can and to give you support, understanding and to make sure that you all know that you are not alone!!
    I wish you the very best!
    Peace and Blessings
    Saysusie

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