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salem's story

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Salem's Cardiologist Appt - 2/3

2004-02-11 10:58 p.m.

Her appt was long. We got there at 1:45 and didn't get home til after 6. She was real playful and just played and walked and took a nap around 4:30. We really thought we might be surprised and it go well (Brian managed to go with me thank God). She was asleep when we started which we thought was good but she woke up hysterical (worse than ever). So 10 minutes into the echo Dr. F came in and took a brief look and then we got her up.

He said that even though the measurements were rudimentary there was nothing on the echo that alarmed him to make her go through it. He does do conscious sedation but only at his office in Dallas. He said if the next one turns out like this we will have to do the echos there for a while.

We talked about her extreme constipation. And when I say extreme it's pretty bad. She strains through EVERY BM even if it's soft. And she recently went 8 days with barely getting anything out.

We have since found out that this is common in Noonan kids and can be a side-effect of her beta blocker.

So we are going to try two things:

1. Change her beta blocker to atenolol. It's formulated differently but it's still a beta blocker so it may or may not help. He said some people have fewer side-effects just by being on something different. Also - it's setup where I can give her a dose every 12 hours (2 a day) as opposed to every 8 hours 3x's a day which is GREAT. With the other I was having to wake her up at 11:30 every night to give her her last dose.

2. While we were in the waiting room we talked to two moms who brought their kids there for CranialSacral Therapy. One mom specifically said her daughter was having regular bowel movements without the aid of miralax within a month. So we asked the cardiologist about it. It's an alternative therapy but our cardiologist is trained in it and as it is not invasive or painful we figured why not? The lady in the waiting room said it has been a miracle for her 2 year old.

He said sometimes it works and sometimes it doesn't but in his practice he has seen it be helpful with problems like Salem's constipation and especially with developmental delays, sensory problems, etc.

So the plan is to go back in 4 months for an echo. In between now and then we will go 1 a month when he comes here just for the CST. Not have it relate to an echo or anything at all. He said we may consider coming to Dallas at least 1x a month for another treatment or to find someone locally (if we can). He said a lot of massage therapists are trained in it but he thinks it should be done by an MD when the person has specific medical problems. So I will check into all that.

Anyway - she weighed 18'10' which means she did gain someweight! Whoo Hoo! She's so cute!!!

She's walking and talking and LOVES music. If music comes on TV (even the Law & Order Theme) she stops what she's doing and claps and dances! So cute!!!

October 11, 2006 - 2006-10-11
Back from Vacation - 2006-07-18
July 3, 2006 - 2006-07-04
Parenting is Hard - 2006-06-30
Update June 23, 2006 - 2006-06-23