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NEW TO GROUP ANYONE LIKE ME?

Posted by on Jul. 25, 2007 at 9:12 PM
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MY SON WAS BORN WITH CONGENITAL HYPERTROPHIC CARDIO MYOPATHY W/ PULMANARY STENOSIS I AM HAVING TROUBLE FINDING OTHER PARENTS OF THIS CONDITION PLEASE HELP?
by on Jul. 25, 2007 at 9:12 PM
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KBearWith2Cubs
by Group Owner on Jul. 25, 2007 at 9:19 PM
I know the docs are watching out for cardiomyopathy in my daughter since it is a symptom that is seen in children with the genetic condition she has which is Noonan Syndrome. Has your son ever had genetic testing done?? Im just curious because since my daughter has PS & ASD (2 other heart defects seen in Noonan Syndrome children). Does he have any other issues, develop delays etc??
BAMANESSA
by New Member on Jul. 25, 2007 at 9:24 PM

THEY THOUGHT HE HAD NOONAN'S AND WE WENT THROUGH THE WHOLE GENETICS THING TOO TURNED OUT HE DOES NOT HAVE ANYTHING THEY HAVE NAMED. THE ONLY CONDITION IS THE PS AND THE MYOPATHY AND SEVERE REFLUX. HAS YOUR DAUGHTER HAD TO HAVE ANY PROCEDURES YET FOR HERS? HOW OLD IS SHE?

KBearWith2Cubs
by Group Owner on Jul. 25, 2007 at 9:28 PM
Last year we got her diagnosis for NS. She's 3 1/2 years old and had a balloon valvuloplasty at 5 months old for her Severe PS(75% blockage) which is now considered mild-moderate(45%). She still has her ASD but they are waiting til school age to determine what they will do, they say there's a chance it could close on its own since right now she is not having a problems and they dont want to go in and do anything since she is doing sooo well. She continues to be followed by the cards and the genetic dept as well. She has to take antibiotics for any surgical or dental procedures.
BAMANESSA
by New Member on Jul. 25, 2007 at 9:43 PM
SO FAR HE DOES NOT HAVE DEVELOPMENTAL DELAYS THAT THE DOCS THINK ARE DELAYS TO ME THEY ARE HE WONT PUSH UP ON HIS ARMS. HE IS TRYING TO WALK TALK HE EATS OFF THE TABLE HE SITS UP ALONE ALL THE NORMAL THINGS. DOES SHE HAVE ANY DELAYS PER SE?
KBearWith2Cubs
by Group Owner on Jul. 25, 2007 at 9:49 PM
Oh yeah she does and so does my son. The both have a slew of delays. Jacob receives Speech Therapy, Occupational Therapy, Vision and Education all at special needs preschool. He was also diagnosed with PDD(Autism). Kylie currently receives Occupational Therapy, Physical Therapy, Speech, Behavioral and Education at home until they can fit her into the right class for special needs preschool. Jacob and Kylie also have what is called Sensory Integration Dysfunction. Kylie is hypersensitive. She will avoid being touched or touching things when at all possible(although it has gotten better). She is also being evaluated to see if she falls on the autism spectrum which we suspect.
BAMANESSA
by New Member on Jul. 25, 2007 at 10:12 PM
THE SENSORY THING (I CAN NOT REMEMBER A THING EXCUSE ME I DON'T MEAN TO SEEM INSENSITIVE) IS THAAT LIKE WHERE BUTTONS TAGS AND ZIPPERS BOTHER THEM LOUD NOISES SUDDEN MOVEMENTS THINGS LIKE THAT? DAKOTA HAS THAT WE CAN NOT PUT ANYTHING ON HIM W/ NUTTONS IN BACK ZIPPERS IN FRONT AND HAVE TO CUT THE TGS OUT OF EVERYTHING. WE HAVE TO LEAVE THE ROOM TO COUGH OR SNEEZE. DID EITHER OF YOUR KIDS SPEND TIME IN NICU? DAKOTA SEEMS TO HAVE SEPERATION ANXIETY AND HAS SINCE WE BROUGHT HIM HOME FROM THE HOSPITAL AT 2 WKS? NOT TO BE TOO NOSEY BUT WERE THEY IN EARLY INTERVENTION PROGRAMS?
KBearWith2Cubs
by Group Owner on Jul. 25, 2007 at 10:26 PM
You got it, that's exactly what it is. As soon as my son comes home from school he strips just so he can be in his underwear. Niether of them have been in the NICU although Ive read "most" kids who have SID are ones that spent time in the NICU, not the case for us though. They both have been in early intervention since they were 5 months old and since they are over 3 years of age the IU(school district) takes over and they get their services that way now. The IU provides services in the home to my daughter because they cant get her into a class and my son is in a class so he gets everything at school.
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