tag:blogger.com,1999:blog-2275648983153882994.post3636502497605804880..comments2023-07-25T03:53:38.099-07:00Comments on ROHHAD CHILDREN: Sophia - MassachusettesAnonymoushttp://www.blogger.com/profile/03258197733529368954noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-2275648983153882994.post-8681098825243506382016-02-27T00:04:46.012-08:002016-02-27T00:04:46.012-08:00Hello Moms and beautiful children of yours... I h...Hello Moms and beautiful children of yours... I have a 6 year old little girl who was perfectly on track with her weight until she turned 3 and she gained large amounts of weight in one year, began having constant debilitating headaches, constant tummy pain and breathing trouble which they also treat as asthma. Around age 3, she also began having behavioral concerns. We've been continuing our "obese, asthmatic, bla blah blah" follow ups until About 5 months ago, she started having nonstop tonsilitis and I noticed she was having episodes of apnea while sleeping. A sleep study was done and she was diagnosed with SEVERE sleep apnea with dangerous drops in her oxygen levels and her tonsils were immediately removed. She's been 2 months post-op and I'm finding she's snoring again and having moments of apnea again. I recently saw an endocrinologist because I too am concerned about the weight gain which is unexplainable for a child who does cheerleading, dancing, gymnastics, yoga and tball regularly. She hardly EVER sits still! Misty, I am in MA as well and my daughter was referred to and attended the OWL clinic as well. It wasn't until I completely lost it with my child's sleep apnea with her ENT through Mass Eye and Ear that I was referred to an endocrinologist who mentioned "possible ROHHAD's" but doesn't feel enough symptoms warrant further testing. I've read this blog and each story I encounter and my child falls with nearly every single symptom thus far! I've kept well written journals of how many times she's wet the bed, what she eats, how much she consumes, what she drinks and how much she drinks, what her physical activities are, we have a headache journal, the belly pain journal, you name it, I've written it down! So far, she's got the diagnosis of obesity, asthma, chronic ear infections, obstructive sleep apnea, anxiety, poor fine motor skills, disregulated behavior, migraines, abdominal migraines. We have another sleep study scheduled for April 2016 but I'm now far more insistent on further testing to determine and diagnose her with ROHHAD's as one doctor brought up! I'm frustrated, I fear for my child's life thinking about the damage 94 lbs is doing to a 6 year old little girl. The children are cruel, she lacks self confidence and I believe she's now getting depressed. Have any of you found one common test which confirms this diagnosis that I can demand be ran on my child? I'm desperate, losing hope and questioning faith..... Any ideas?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2275648983153882994.post-58214467630440006772016-02-27T00:01:22.831-08:002016-02-27T00:01:22.831-08:00Hello Moms and beautiful children of yours... I h...Hello Moms and beautiful children of yours... I have a 6 year old little girl who was perfectly on track with her weight until she turned 3 and she gained large amounts of weight in one year, began having constant debilitating headaches, constant tummy pain and breathing trouble which they also treat as asthma. Around age 3, she also began having behavioral concerns. We've been continuing our "obese, asthmatic, bla blah blah" follow ups until About 5 months ago, she started having nonstop tonsilitis and I noticed she was having episodes of apnea while sleeping. A sleep study was done and she was diagnosed with SEVERE sleep apnea with dangerous drops in her oxygen levels and her tonsils were immediately removed. She's been 2 months post-op and I'm finding she's snoring again and having moments of apnea again. I recently saw an endocrinologist because I too am concerned about the weight gain which is unexplainable for a child who does cheerleading, dancing, gymnastics, yoga and tball regularly. She hardly EVER sits still! Misty, I am in MA as well and my daughter was referred to and attended the OWL clinic as well. It wasn't until I completely lost it with my child's sleep apnea with her ENT through Mass Eye and Ear that I was referred to an endocrinologist who mentioned "possible ROHHAD's" but doesn't feel enough symptoms warrant further testing. I've read this blog and each story I encounter and my child falls with nearly every single symptom thus far! I've kept well written journals of how many times she's wet the bed, what she eats, how much she consumes, what she drinks and how much she drinks, what her physical activities are, we have a headache journal, the belly pain journal, you name it, I've written it down! So far, she's got the diagnosis of obesity, asthma, chronic ear infections, obstructive sleep apnea, anxiety, poor fine motor skills, disregulated behavior, migraines, abdominal migraines. We have another sleep study scheduled for April 2016 but I'm now far more insistent on further testing to determine and diagnose her with ROHHAD's as one doctor brought up! I'm frustrated, I fear for my child's life thinking about the damage 94 lbs is doing to a 6 year old little girl. The children are cruel, she lacks self confidence and I believe she's now getting depressed. Have any of you found one common test which confirms this diagnosis that I can demand be ran on my child? I'm desperate, losing hope and questioning faith..... Any ideas?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2275648983153882994.post-21693188240453068192013-07-22T21:30:46.362-07:002013-07-22T21:30:46.362-07:00I saw a TV show where they talk ROHHAD's disea...I saw a TV show where they talk ROHHAD's disease, I think there is a possibility of cure with homeopathic medicine called CALCAREA CARB, this has several symptoms that manifest the disease, I suggest applying this medicine and have hope for a cure.<br />Buy Calc Carb 200C at any homeopathic pharmacy and give it to these patients 2 times a day, no side effects, any questions contact my email: holisticum2012@gmail.comAnonymoushttps://www.blogger.com/profile/02087379037376479445noreply@blogger.com