One month ago, I brought my son to the emergency room for swollen sternocleidomastoid muscles. The doctor said he had "some type of virus"--at 5' 7" and 115 lbs., the DR. put him on IV and injected him with 60mgs. Prednisone. From there it's been severe downhill ride. He got immediate tachycardia, GERD, cold sweats to hot flashes, numbness in his legs/arms, strange pain/tingling in his head/neck region. Went back to ER, and they said again "he's fine....anxiety" and told him to keep taking Prednisone for neck swelling.
With each dose of Prednisone symptoms got profoundly worse. The second pill he took he got swollen tongue/throat/gums--and I could see bright/deep red epiglottis sticking up at back of tongue--TACHYCARDIA @160bpms. Rushed him to hospital. They admitted him, gave massive doses of potassium, IV sodium w/antibiotics. The ECG in first hospital said "left atrial abnormality - abnormal ECG - unverified"--but never told us about it and dx'd him with "pharyngitis" and "anxiety"--
The clinic Dr. said he has "anxiety" and referred him to mental health. We begged for referral to cardiologist, but was refused as she said he's "a man" and "growing"(referring to swollen neck) and that he again "looks fine to me"--- She didn't even listen to his heart through stethoscope. That's when we first saw his ECG, and got copy.
Gave son massive doses of probiotics, Gateraide, balanced diet, minimal exercise. He was doing good until....Son said when he felt better "I probably do just have anxiety"(GASP--I said "NO YOU DON'T IT'S HEART!)....and he smoked a cig, or tried when I wasn't looking. From there it was downhill again...
He's lost almost 20 pounds in the past month, severe diarrhea from meds, GERD(probiotics do control)
Lab reports show low prothrombin level(10.9), high MCHC(36.7), low "normal" POC TROPI 0HR ( %26lt; 1,0), low normal POC CKMB 0 HR ( %26lt; 0,05), low normal cholesteral (116).
2nd Hospitalization, treatment for SVT and told he'd NEED to get heart mapping/oblation. They discharged him as his heart rate stablized and Medicaid didn't want to pay for transfer. He tried hanging out with his friends, and his heart shot to 200bpm's within seconds. Now doctors are saying Holter Moniter for a month when before they said he NEEDED the oblation immediately to solve problem.
We have Medicaid, and these doctors either don't care, or are stupid, or both. Son very pale, lethargic, has good moments--then profoundly bad. Don't know anymore what to do or ask for. I think it's hereditary; as infant he could tolerate NO FORMULA....Children's Hospital Boston was clueless. I took him off formula@ 7 months as he wasn't "thriving"--losing weight, diarrhea/vomiting. I gave milk cut with pedialite and x-tra vitamins, which he did great on. He's done okay since, but always had rise in heart rate after food. Checked for diabetes, much in family--but he's fine there. I think it's something hereditary....
Found "Salt Wasting Syndrome"--many infants in my family have died/near death(including sick son) by age 2 from "diarrhea disease"...but it's unspecified. He also very thin, thinning hair over the years, very hyperactive/aggressive but NOT anxiety....I feel he has PDD/Asperger's....autism runs in family. Found: Excess Androgen Syndrome as well. I know it's Endocrine. Also, PCB contamination(ALCOA/General Motors) in ground water where family lives with great incidence of cancer/disease/developmental disorders.
Lost, scared, stuck with medicaid doctors. I know there are good ones....but where? Son very sick. If anyone has any answers. Heard about "Isabel Maude Program" but don't know where to find it. Please help. Any advice/info/direction would be greatly appreciated.
Live near Venice, Florida....so if anyone knows of good Medicaid Doctors I WILL TRAVEL AS FAR AS I HAVE TO AT ANY COST. Please help???!!!|||ur son sounds alot like me, im 18 and i have unexplained heart problems, all the doctors say anxiety, after 22 ecgs a holter onitor (which by the way should pick up anything serious) its nice to see you are understanding i wish my dad was the same, ive had sudden heart rate increases, docs say panic attacks but im fine when they happen, i have constant chest pain, and dizziness. im on propanol beta blockers, but i personally feel im being shrugged off, i ring up a helpline every night almost with concerns, but im still searching for an answer.
all i can say is be firm and follow this up like you have been doing.
a holter is a good step forward, but i must say looking at medical ways in the last 18 months has opend my eyes to see people dont really seem that bothered.
good luck to you and ur son.
i hope you sort this out|||He may actually need the ablation, but before you go through all that, get him tested for hyperthyroidism. He has every sign.|||I do not live close to Venice Florida ; but if you go on the Mayo clinic site ; you will get some good information about your son condition|||Well, this is really hard. Your son really needs a good specialist. Good luck! And don't stop praying.|||You need to take him somewhere anywhere ASAP, and refuse to leave until they find out the issue. He needs a cardiologist. Call medicaid and get a list of every dr in your area that accepts medicaid. I cant believe the childrens hospital sent him home like that. Any time something has to do with your childs heart they should be VERY concerned. No one on yahoo is going to be able to assist. I need you to DEMAND someone do something for him before he dies
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