Forums > Special NeedsPage 1 2 3by: Meg ღ ღ

re: ...

posted 27th Oct
Quoting Meg ♥:" Thank you. :hugs: It's not for 2 weeks, but I'm just blah. Monday is a dentist appointment. Such FUNNNN times around here. I feel like a freaking failure of a mom. Sorry, just having a bad night. "



You are NOT a failure or a bad mom. A bad mom wouldn't care enough to get her tested and let everything slide.

You are doing the absolute best that you can do for her and she'll appreciate it (sooner or later   )
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I have 1 child & live in Rochester, New York
posted 27th Oct
Quoting Meg ♥:" Pseudo-parahypothyroidism and any and all auto-immune disorders that may be making her calcium levels drop to a dangerous level along with making her PTH spike to an abnormal level.... "

REALLY? thats weird. my kid has congenital hypothyroidism and low serum calcium levels   (well not smiley-- but small world) he also has a heart defect, so they were thinking digeorge, even tho his CHD is not normally seen with that and his FISH test was negative. theyre still doing tests, but all chromosomes are normal, and its definatly not digeorge.
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I have 3 kids & live in Zambia
posted 27th Oct
Quoting Kelly&Coralie:" You are NOT a failure or a bad mom. A bad mom wouldn't care enough to get her tested and let everything ... [snip!] ... let everything slide. You are doing the absolute best that you can do for her and she'll appreciate it (sooner or later   )"

Hopefully sooner, these blood draws are killing me and making her hate me (not really... )
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I live in Ohio
posted 27th Oct
Quoting Ailey+Lennon+Renner's Mom:" REALLY? thats weird. my kid has congenital hypothyroidism and low serum calcium levels   (well not ... [snip!] ... that and his FISH test was negative. theyre still doing tests, but all chromosomes are normal, and its definatly not digeorge."

Wow! Interesting. DD was diagnosed at 1 yr old with a hypothyroid. Her calcium levels have always been in a great range, but last checked in 2008... her endo checked them 2 months ago and found her levels to be dangerously low.

She is on calcium carbonate and calcitrol daily and synthyroid. Her endo thinks it's the Pseudo-PHT and is treating it as such.


I hope your LO is okay! Is he on Synthryoid?
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I live in Ohio
posted 27th Oct
Quoting Meg ♥:" Wow! Interesting. DD was diagnosed at 1 yr old with a hypothyroid. Her calcium levels have always been ... [snip!] ... and synthyroid. Her endo thinks it's the Pseudo-PHT and is treating it as such. I hope your LO is okay! Is he on Synthryoid?"
he is on levoxyl and a calcium suppliment (off brand with vit D) they are kinda thinking he will outgrow his hypothyroid (his might have been due to his traumatic birth-- he is still only on 25mcgs and has been since diagnosis-- so 9lbs to 22lbs and no increase needed) but they wont try and wean him off until age 3.
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I have 3 kids & live in Zambia
posted 27th Oct
Quoting Ailey+Lennon+Renner's Mom:" he is on levoxyl and a calcium suppliment (off brand with vit D) they are kinda thinking he will outgrow ... [snip!] ... 25mcgs and has been since diagnosis-- so 9lbs to 22lbs and no increase needed) but they wont try and wean him off until age 3."

Marissa was attempted to be weaned, but she will be on synthyroid indefinitely now.

I would imagine she will be on the tums (calcium carbonate) as well as the vit d supplement indefinitely as well....
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I live in Ohio
posted 27th Oct

Quoting Meg ♥:" Marissa was attempted to be weaned, but she will be on synthyroid indefinitely now. I would imagine ... [snip!] ... now. I would imagine she will be on the tums (calcium carbonate) as well as the vit d supplement indefinitely as well....

what hospital do you go thru? ohio is actually one of the best states to have sick kids in if you want to look at it that way.. we have 5 top 50 hospitals within our state. --- it wouldnt let me get out of the quote box and im being lazy... lol
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I have 3 kids & live in Zambia
posted 27th Oct
Quoting Ailey+Lennon+Renner's Mom:" "

I live in Cleveland so we go through University Hospitals. Rainbow Babies and Children's Hospital.
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I live in Ohio
posted 27th Oct
Ailey+Lennon+Renner's Mom: Sorry don't know your name. What hospital do you go through?
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I live in Ohio
posted 27th Oct
*hugs* Praying for you guys.
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I have 2 kids & 1 angel baby & live in Indiana
posted 27th Oct
Quoting Meg ♥:" Ailey+Lennon+Renner's Mom: Sorry don't know your name. What hospital do you go through?"

my names Krystal   we go thru Akron Childrens for endocrinology. he had all his heart surgeries at Motts at university of michigan tho, and thats where he was originally diagnosed with the hypothyroid and hypocalcemia. rainbow babies is great tho! it was one of our choices for open heart surgery  
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I have 3 kids & live in Zambia
posted 27th Oct
Quoting Ailey+Lennon+Renner's Mom:" my names Krystal   we go thru Akron Childrens for endocrinology. he had all his heart surgeries at ... [snip!] ... with the hypothyroid and hypocalcemia. rainbow babies is great tho! it was one of our choices for open heart surgery  "

Do you mind if I PT you? It's rare to find people who have children with similar conditions to talk to.

Akron Childrens is great as well! UH is a teaching hospital so it's makes me crazy sometimes but it's an amazing hospital.
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I live in Ohio
posted 27th Oct
Quoting the grace life:" *hugs* Praying for you guys. "


Thanks Dee! I appreciate it.
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I live in Ohio
posted 27th Oct
Quoting Meg ♥:" Do you mind if I PT you? It's rare to find people who have children with similar conditions to talk ... [snip!] ... Akron Childrens is great as well! UH is a teaching hospital so it's makes me crazy sometimes but it's an amazing hospital."
not at all   motts is a teaching hospital too.. its quite annoying students using your kid as a teaching subject, but unfortuantly necessary. i got a TON of that because his heart murmur is so "interesting" . ill PT you too  
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I have 3 kids & live in Zambia
posted 29th Oct
Kind of an update: Riss had a dental cleaning today. No cavities and her enamel looks great the dentist said! So thankful due to the low calcium levels... I was so afraid.
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I live in Ohio
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