For those that asked, update on Christopher...

[CC]

I talked to his heart Doc today and the 24 heart monitor showed the same results off the meds as they did while he was on the meds. So we do know his heart issues are NOT from the meds.

Doc said lets take the wait and see bout doing a Pace Maker at this time, since never has anything ever gone easy for Chris. Basically he wants to wait till Chris has a symptom like passing out Not sure I feel comfortable with that but on the same hand... What to due What to due

As for the meds we are in the same What to due... Physically he has been back to his old self being off the meds, riding his bike 20 miles the other day, back to wanting to do all the physical things he used to LOVE to do BUT mentally OMG he is not in a good place

Colin and I are talking, thinking and searching our soul bout ALL of this but I can honestly tell you at this very moment I wish someone would just tell me what is best for Chris.

I am sure we will come up with the right answers that are BEST for Christopher but Man oh Man tonight I just wish we didn't have to deal with any of this, KWIM?

Thanks for letting me share and vent

CC ~

[Googsmom aka Jennifer]

{{{{{{{CC}}}}}}}{{{{{{{CHRIS}}}}}}}}

[Emilysmom]

I guess it's a bit of a relief to know that Chris's heart wasn't responding negatively to the medications, right? I know it has to be a very tough decision, and I wish you didn't have to deal with it either. Hugs to all of you.

Susan

[damarasmom]

I am sorry...I can hear that you are down in your post...It sounds like you all have been through so much in a short period of time. It's good that the meds are not the source of the heart issue. I can understand just wanting someone to tell you what to do that would be best...it's so tuff when there isn't a clear answer. I pray that you and your family find what is best for Chris....I will keep you all in our prayers!

[mollysmomma]

Praying for your guidance in these decisions...and for your Peace.

[laurasnowbird]

I know you'll work out what's best for Christopher, CC. I think your dilemma may be the hardest part about being the parent of a child with special needs. The ultimate decision about procedures and medications rests with us, and it's a huge responsibility.

You chose the meds for good reason, the results Christopher got from it were good, and they've been cleared of culpability for his heart issue......

Are you afraid that there are other side effects that you haven't yet identified? Is Christopher able to tell you whether he feels better when he's taking them?

That can be such a tough one....I'm never completely certain what Ethan understands, KWIM? He will come and ask me for his reflux meds though, so I think he noticed a difference when we took him off them last summer to do his pH probe. Has Chris verbalized anything about how he feels off them?

Good luck, many prayers going out to your family.

Laura