August 10, 2012 at 3:44 am #284Trent’s MomParticipant
My son, Trent, was born in March 2011, with infantile scoliosis. While we were waiting for our appointment with Shriner’s Children’s Hospital, he began to develop some spots on his skin. Unable to identify what this mysterious looking “rash” was, our pediatrician hoped Shriner’s might have an idea. They immediately feared neurofibromitosis. They sent us to a dermatologist for a biopsy and we were surprised when it came back as mastocytosis (subtype Urticaria Pigmentosa). He is now 17 months old, very happy and seemingly very healthy. However, it has never sat right with me that he would be born with two rare, unrelated medical conditions. My “mommy gut feeling” is that there is a connection we are missing between the two and therefore missing an opportunity to help him somehow. The doctors say that since his scoliosis has improved without intervention there is no reason to worry even if there is a connection. He now has around 300 UP spots all over his body and just two weeks ago began to get some faint spots on his face. I found this site while researching the possibility that mast cells in his connective tissue could have cause the spinal abnormality. Another thing that always bothered both my husband and I was the strange texture of his abdomen as an infant. It was very weak and mushy. It has improved tremendously since, and he started to walk at 10 months old. Just something to mention I guess. My question is, should I be pursuing the possibility that he has EDS and that it’s causing his spinal curve? I asked his pediatrician and she raised her eyebrows as if intrigued, then told me to see a pediatric dermatologist at UCSF. I called Shriner’s with the question and they were the ones who told me not to worry unless his curve progresses. Well, it must be easy not to worry when it’s not your child 😉
On a side note, I cried watching the video about POTS. I have had these symptoms for the past 20 years and feel like garbage EVERY single day. I know this is what I have and I can’t believe I finally found a name for it. I am so tired of feeling like I can’t walk across the room, or like I’m going to pass out every time I stand, or just laying down for that matter. I am tired of waking up and puking until I dry heave. The constipation, then diarrhea, the EXHAUSTION, fatigue, chest pains, mental fog, inability to concentrate, clammy hands and feet, sensitivity to heat yet always cold, extremely weak, racing heart, low blood pressure, passing out in the shower, having to sit down in the shower, all of course resulting in terrible mood swings… it’s been wearing on me my whole life essentially, but especially so since becoming a parent. I can’t explain how difficult even the most simple tasks are for me. The one symptom that really made me emotional, was the “feeing detached from surroundings”. I can’t explain it but I sometimes just don’t even feel like I’m in body. I also get very easily over stimulated and therefore agitated, which just doesn’t mix when you have a two boys under 3 running around the house! I’m not sure who I should talk to about getting a tilt table test. My only doctor is my OB/GYN who I love dearly. Maybe I can get a referral to a GP from her?August 10, 2012 at 11:21 am #2737BarbaraParticipant
Hi Trents Mom,
Yes, you’ve just reminded me, I have EDS and I’ve had mild scoliosis to my knowledge for over 20 years (although I didn’t know it was called scoliosis until about 4 years ago!) you wouldn’t know it, by looking at me clothed but a physio spotted the ‘spinal twist’ as she referred to it, all those years ago, when I was having a lower back ‘rogue disc’ problem. I may have had the scoliosis from birth, I don’t know but what I do know is, that it hasn’t really caused me any major problems. Nor did any other part of my condition, until I banged my head.
If you search in google for “EDS Ehlers Danlos Scoliosis” there’s loads that comes up, so there’s obviously a link.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!August 10, 2012 at 8:01 pm #2738ScaredSingleMamainMarylandParticipant
Hi Trent’s Mom! I am praying for your son. I hope that he does not have EDS and that his health problems improve. However, I think you may be right about the connection. It is horrible someone his age would have such health concerns thus far. Def. stay on top of any symptoms he has whatsoever. I am also sorry to ear you are going thru all these symptoms. I have POTS/Dysautonomia and it is horrible. I am so sorry you have not had a Dr. to navigate the way with you. I pray you find a great Dr. who will care and will do his/her best to help you get relief.
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