Anyone have experience with Hypoparathyroidism?

Zizzle · Post by **Zizzle** » Fri Jul 18, 2014 3:50 pm

My sister's 2 kids, ages 3 and 6, are in the process of being diagnosed with hypoparathyroidism, which is apparently VERY rare, unless you've had your thyroid operated on. Her 3 yr old daughter was hospitalized for 4 days with non-stop vomiting, she was supposedly septic, and they thought she had Leptospirosis. After one bag of fluids and IV antibiotics, she was good as new, but her Alkaline Phosphatase was through the roof (3,000, an it should be under 100). Her Parathyroid hormone was also low, although her blood calcium was normal, to their surprise. Brother got tested and his AP was almost 900.

Both kids are small, have dental enamel hypoplasia, and the 6 yr old complains of headaches and "growing pains," and has some trouble in school (classic symptoms).

Now they must enter a rollercoaster of genetic and autoimmune testing to determine the cause, and be followed by an endocrinologist forever, not to mention looking for any damage caused by low and irregular calcium levels.

I'm so sad for them, mostly because this was not caught sooner. I thought for sure they had celiac disease!

Post by **tex** » Fri Jul 18, 2014 5:30 pm

Zizzle wrote:I thought for sure they had celiac disease!

I don't understand why you decided that they don't?

Malabsorption with idiopathic hypoparathyroidism responding to treatment for coincident celiac sprue.

Hypoparathyroidism and coeliac disease: a potentially dangerous combination

Tex

LindyLou · Post by **LindyLou** » Sun Jul 20, 2014 8:49 am

Hi Zizzle!
You might want to check out this group. Most of these group members are surgically hypo however there is a wealth if information available there.
https://www.facebook.com/groups/4414552 ... ts&fref=ts

Linda

Zizzle · Post by **Zizzle** » Wed Jul 23, 2014 12:52 pm

Ugh, now the 3 yr old girl has high cholesterol (223) and LDL (162). She's little and still breastfed and doc says to only eat lean meats and skim milk. Are you kidding me!? There is no way diet has to do with her high cholesterol. Does anyone know what this might mean in kids? Liver issues? Metabolic disorder?

Someone screwed up and they forgot to retest her PTH, but her AP is still sky-high at 2,599. They want to wait and retest in another month. Meanwhile NO ANSWERS!! How can they let this wait!?!?