This morning I received a notice from the NORD web site on my ROHHAD post about Haven. Another beautiful angel was diagnosed with ROHHAD. I want to introduce her to the world. Everyone please meet Sophia!!! Isn't she just beautiful! She looks so much like my baby!Sophia's mom, Maureen, contacted me as she has been trying to find out what was going on with Sophia for the past couple of years! Sound familiar - until everyone learns about this syndrome too many kids will go undiagnosed!!! Please read below about Sophia!
Thank you so much for getting in touch with me. my beautiful daughter is the youngest of six she just turned 4 in October. Right before she turned two she was a little bitty thing and it was overnight she gained tons of weight. stomach issues, and breathing issues which they diagnosed as asthma. They sent her to the owl program at children's hospital in Boston. The owl program is for children with weight issues, anyways the long nights awake, her sick every day has been so frustrating. Having people look at her and make rude comments. and finally. this past Monday 12/15 after two long years they give this diagnosis - ROHHAD. she has been fighting pneumonia for two weeks they just put her on steroids along with the meds she is already on - antibiotics her inhalers, meralax for the constipation. she has headaches all the time eye pain.
I am lost, they have set up and MRI for the 30th she will have to be asleep for that. they are also scheduling the Respiratory study they said this will have to be done before the MRI. I cant find much on this syndrome and I'm scared out of my mind.
I will send a picture of her I'm not very good on the computer so i will try and send one. Please that would be great if you add her to your blog. were do you live? thank you again Misty i cant wait to hear from you again.
As with Haven I started searching at the age of 2. Knowing something was wrong - gaining massive amounts of weight after being underweight for 2 years, constant stomach pains, constipation, eye problems until it turned out, breathing issues - EVERYTHING!!! I will pass along Sophia's information to all the other ROHHAD mom's that I know. We have our own support group going since there is nothing out there for us!!!
Please send your thoughts and prayers to all of these children - they definitely have a rough time ahead of them! We love you Sophia!!
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.
ReplyDeleteBuy 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.com
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?
ReplyDeleteHello 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?
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