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Sharon Cochenour
March 13th, 2004, 11:39 AM
I just got the results of Andrew's heart echo. It went from an ejection fraction of 80% down to 50% in one year. He has Hunters and I just woundered if anyone has had seen that big of a drop in their child.
My other questions is if anyone has gotten ERT, if they have seen improvement. Just woundering for when ERT is avaliable for Hunters. :D
Sharon

Laura Brodie
March 13th, 2004, 12:29 PM
Sharon, I'm sorry if that result is bad news for Andrew.
We also have a heart Echo comming up -his last one was 2 yrs ago when we were told nothing was wrong but no results such as you describe were given to us.I am very apprehensive about this as I know that the heart is one of the major problems as the children get older. I hope someone has some answers for you Love Laura

ChrisMPS2
March 15th, 2004, 07:18 PM
Sharon,

When William got his baseline echo, the heart doctor said he didn't expect to see any degredation until William was 12 and in fact he still doesn't have any changes at 14. There are so many variations amongst the kids.

Chris

Priscilla Raftery
March 15th, 2004, 09:13 PM
Joey had his echo done last week...he see's his cardiologist this coming Saturday. I will post the results. Joey's condition(heart) has been worsening over the past year. He is now 15. Priscilla

3coolkidsmom
March 16th, 2004, 02:20 AM
Spencer's yearly heart exam was last week. Our cardiologist said that he has not seen any further progression of Spencer's mitral valve thickening in the past few years. I would like to say that it is because Spencer has been receiving ERT for the past six years, but we heard different news after Laynie's heart eval last year. She has always had the most cardiac involvement of my three kids. Sometimes I wish that I didn't think about every medical situation we face as if my kids were my own personal clinical trial..... " This just in from the Channel 5 Health Watch, In a study performed by the Holland family, results show that ERT may link children to macaroni and cheese..."

Jessica
March 16th, 2004, 09:30 AM
:lol: <---- Amy

Sharon,
I'm sorry the echo had poor results. :(

The Rea Family
March 16th, 2004, 12:23 PM
Sharon,
I'm so sorry about the test results.
I hope things get better soon.

Sheila George
March 16th, 2004, 03:34 PM
Sharon,

Sorry to hear that Andrew's ECHO showed signs of his heart function worsening. Hang in there.

March 16th, 2004, 04:31 PM
Amy......Thats funny, I think my kids ARE somehow linked to mac-n-cheese LOL they eat enough of it to ACTUALLY turn in to some.......I wonder if I should store my kids in the fridge and cover them with a lid!!!!!!
Misty
[/quote]

DarlaMay
March 16th, 2004, 11:49 PM
Brandon and Christopher both have mitral and aortic valve regurgitation. At first they though Brandon had a Bicuspid (2-flap) mitral valve instead of the 3-flap, but a clearer view and film found that to be a false conclusion. Since we have been watching them, both have very slowly gotten worse. Chris had trace mitral and minimum-trace aortic while Brandon was just the opposite. Last year both were mild with Chris's Mitral being slightly worse than his Aortic. Brandon's Aortic was slightly worse than his Mital; and Brandon's Aortic root was slightly larger, but still within the high normal range. Their next checkups are in a couple of months.

Sharon Cochenour
March 17th, 2004, 09:56 AM
Thank eberyone for your imput. It is hard because I knew that the heart was one organ that the MPS could affect, but I didn't know it could be this early. Andrew's echo also showed all valves are thickened now and his mitrial and tricuspid valves have prolapse. He also has pulmonary and aortic insufficency is now moderate. The cardiologist is now worried about pulmonary hypertenion or cardiomyopathy, both are not good. Of course on top of all that he reminded me that a child with Hunters could recieve valve replacements, but not a heart transplant if they were really bad. :cry:
Hurry up with the enzyme
I know it won't reverse damage, but it could stop more damage. :(
Sharon

zachiesmom
March 17th, 2004, 04:03 PM
Hi Sharon,
I'm so sorry you got such discomforting news about Andrew's heart. I Second that opinion on ERT!!!

Keeping you and Andrew in my thoughts and prayers.



Brenda

Barbara Pryor
April 15th, 2004, 01:43 PM
The cardiologist told us yesterday that Andrew will probably need to have his aortic and mitral valve replaced. They wil reevaluate in 6 months to see if he is any worse. If he does have the surgery the doctors are concerned about his health afterwards, he might not do too well. Over the next 6 months Sharon has to decide whether to have the surgery or not and whether to have mechanical or human tissue valves. Decissions, decissions.
After that news we went to ENT and they said that Andrew's sinus' were infected and the pulmonary doctor wants to have the ENT doctor scrape and clean out his sinus'. The ENT doctor doesn't want to do that because of Andrew's heart. He said that he actually looks pretty darn good to him. Andrew's tubes are plugged and one of them is out, possibly. He said that this may cause some of the infection that he has or it could be due to the allergy season. He is going to try to adjust his medicines to see if those will help. He really doesn't want to do surgery.
Then today Andrew is getting his IVIg and the doctor wants to put him on IV antibiotics for the next 10 days. Thank goodness she got the stuff and it can be done at home. YEAH!!! We just hope that he doesn't have a reaction to this IV.
My goodness all of this in two days just makes your head spin. Keep Andrew in you thoughts and prayers and lets hope that this antibiotic works on his sinus infection.

momtoty
April 15th, 2004, 02:04 PM
We are praying for Andrew. I am so sorry for all that he and Sharon are going through.
Give her our love. :group
Kim and Ty

The Rea Family
April 15th, 2004, 03:16 PM
I will be praying for Andrew and for Sharon.

THEmps2mom
April 15th, 2004, 05:45 PM
(((HUGS))) Sharon and Andrew. I'm sorry to hear all of this, it's so hard making those type of decisions. We'll be praying that the IV antibiotics do the trick for the sinus situation.

April 15th, 2004, 09:02 PM
Dear Barbara.

I am so sorry to hear about Andrew. I need to just add something here. Chase has 4 leaking valves in his heart,all at about 2.8. My cardiologist says that when he reached 3.2 that is the valve replacement stage, but that Chase would not be a candidate for a valve replacement for a few reasons. Number one,because he has a shunt.(bacterial reasons) And because he felt he would not do well after that surgery. It would be too risky.Any time he said you put in foreign substances into the body you are almost expecting trouble especially the heart with a HUnters child. He would not reccomend a valve replacement for my son nor would he ever do one on my son. He did say whe nit got close to the 3.2 he would put him on a medication but I don't remember the name of it. There is a medication they use first before valve replacement.
He does do valve replacements on other children but said it was too dangerous on a Hunters child because of all of the issues the Hunter kids have..
THis doctor is very familiar with Hunters from way back when. He was the Chief of staff of the pediatric cardiology dept in Bethesda Maryland.His name is DR.Thomas Connor. It was my understanding that you wouldn't do a valve relacement unless you saw that the heart was kicking back blood into the lungs. Or was in danger of doing so.I will do some more homework on this one , can you give me the numbers on Andrews leaking valves. All I know is how they said it to me, 2.8. and 3.2 was valve replacement stage.
Can Sharon get another opinion?

Love Rosemarie

Laura Brodie
April 16th, 2004, 09:28 AM
Sharon, I do so hope the new Antibiotics start working and Andrew is more comfortable soon.
For what its worth the heart consultant over here would not operate either on a Hunters boy although it has not got to that stage yet for Will. However they do take a very non-interventionalsist approach over here. Love Laura

rickys1mom
April 16th, 2004, 12:38 PM
Dear Sharon,
What a difficult time this must be for you. We will be keeping you and Andrew in our thoughts and prayers. Hope the antibiotics do the trick for the sinus infection and buy you some time from considering any surgery for that problem. Hang in there.
Hugs,
Anita

aaronsmom1027
April 16th, 2004, 02:02 PM
I am sorry to hear about the echo results. Aaron has mitro valve prolaspe and a leaky aortic valve as well. If his heart was any worse they would not have let him go through transplant. Now we have to watch how much fluid he drinks each day because too much fluid will make his heart have to work harder and we don't want that. We also have a special card we have to show the dentist before he can work on Aaron because of his mitro valve.

I know what you mean about being afraid of heart problems and I will be praying for you!!!

Sharon Cochenour
April 17th, 2004, 07:22 PM
Thanks for all the thoughts and prayers. The problem with Andrews heart is that his ejection fraction went down from 80% to 52% in one year. All his valves are leaking and the Cariologist is afraid he will develope cardiomyopathy or pulmonary hypertension. He is already getting tired more frequently and short of breath. Sorry Rosemarie but I don't the actuall numbers. He told use that we probably have 6 monthes to think about valve replacements, but not more that that. If nothing is done he would probably deteriorate significatantly after that. I am to the point where I am thinking about what quality of life I want him to have. The ENt doctor won't do the sinus surgery because he is sure Andrew will have a trach and be ventilator dependant. So we are going with the IV antibodics. He has only had them a few days and seems to be acting like he feels better. Please keep him in your prayers because I'm not ready to give up the fight.
Sharon

Priscilla Raftery
April 17th, 2004, 08:57 PM
Joey also has a leaky aortic valve and his cardiologist is watching him closely (echo every 6 months). He hasn't given us any numbers, but he shows us on a graph where Joey's situation is now and how far he has to go before he might consider valve replacement. He, too, said his concern was not for the surgery itself, but for the recovery period. Joey is taking enalapril to help his heart not have to work so hard. Since he has been on it his condition has actually slightly improved! My husband and I have talked about what our decision would be if faced with valve replacement...and our decision is that we can't decide...sigh...my prayers are with you, Sharon, and with Andrew. Priscilla

April 17th, 2004, 09:46 PM
Dear Sharon, Just for comparison, Chase has had 4 leaking valves for 2 yrs now. And yes he has slowed down alot. But it has been 2 yrs with all four leaking. I am just saying that to let you know that Chase is still here and has good days as we watch his heart closely too.I am copying your percentages and going to call my cardiologist on Monday to give him the picture and see if he can give me any information that may help you okay? Hang in there, and know all our prayers are with you and Andrew.
love Rosemarie

Sharon Cochenour
April 23rd, 2004, 06:33 PM
I took Andrew for a upper GI and during the procedure they called another doctor in and then Cardiology to consult with because of vessel compression and valve problems. After whispering for a few minutes I told them I already knew about the valve damage and heart functioning with a low ejection fraction. They seemed to be relieved that I already knew. Of course my child is covering in purple spots again from being held down and screaming. :mad:
Sharon

Laura Brodie
April 24th, 2004, 01:58 AM
Sharon- Poor Andrew -I do hope thats all he needs for now-Those hospital exams are just dreadful. Give him a big hug and :kiss: from us! Love Lauraxxxx

Priscilla Raftery
April 24th, 2004, 08:13 PM
:kiss: 's on all of Andrew's purple boo boo's :( ~ Priscilla

Sharon Cochenour
April 25th, 2004, 01:56 PM
I took Andrew to the Ohio State Buckeye's spring game yesterday and took his wheelchair. The people at the Stadium where very helpful and we got great seats and were able to park really close to the stadium. He really enjoyed all the noise and excitment of the people, cheerleaders and especially the band. Now he has a sunburn on top of purple spots. :lol:
Sharon

ChrisMPS2
April 26th, 2004, 04:00 AM
Sharon,

That is such sad news and purple spots on top of it. I'm hardly one to make suggestions when I am dragging my feet on getting William's cavities fixed because of the anesthesia, but what if they gave Andrew a little Valium or chloral hydrate with the help of an anethiesiologist? Seems like they would get better test results if he was relaxed???

It's too bad there isn't a computer program to plug in all of your risk factors and see into the future about the valve replacements. There is the hope of the ERT in the near future and the ERT for the severe children also being discussed.

The dentist called me Friday to let me know which anesthesiologist he wanted since we are using his hospital instead of the Cleveland Clinic. He sounded so cheerful like everything is going to be fine. It has been in the past with anesthesia, but William has gotten so weak since in the last year that he usually can't even turn over. It has been giving me bad dreams like I never had before. I can only imagine what things are like for you with even bigger decisions. :group

Chris