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momtoty
July 17th, 2004, 12:49 AM
Okay, does anyone here have trouble with their child's blood pressure???? Ty has had intermittent elevated blood pressure, mostly before his shunt- which goes along with elevated ICP. However now he seems to be having more regular high blood pressure. Is this something MPS or is this just due to another problem like the sleep apnea?? For his age and height Ty's pressure should be about 80/50 but no more than 104/57. His pressure the past couple days (at the dr office) has been between 122/58 and 130/60. From what I am told this is not only a high systolic level it is also a "wide pulse pressure" which means that usually the dystolic is 2/3 of the systolic and that is normal but Ty's dystolic is less than 1/2 of the systolic which is considered a wide margin???? anyone with experience in this?? He is scheduled to have a echocardiograhm and an EKG soon will this help us to figure out the reason for the abnormal BP??
Thanks for your help.
Love,
Kim

July 17th, 2004, 08:47 AM
Kim,
Seth's BP is always in the ranges that Ty's are in now. I have checked with Muenzer and he said those were fine readings and not to worry. However, Ty is a couple of years younger than Seth and when Seth was 2 or 3 he had the same BP issues that he does now, in his younger years they were worried about it and we watched it very closely (2x a day) he was neer put on meds or anything for it. I cant help but wonder if it is an MPS thing.

aaronsmom1027
July 17th, 2004, 10:01 AM
Aaron has high blood pressure and is currently taking two different medicines to keep it under control. Of course that is nothing because he used to take 4 differnet medicines for blood pressure each day. We had to experiment with different meds until we came up with a regime with only 2 different types a day. I was told Aaron's blood pressure was only high because of a certain other medicine he was on during transplant but here we are over a year later and he still has high blood pressure. The noraml for Aaron is supposed to be 90/60 but without his meds he will go all the way up to 130/80 or higher. We are slowly trying to wein him off of one of the BP meds but it is a painstaking process.

I hope for your sake you will be able to get it under control without prolonged medication because it gets to the point where I don't know if Aaron will ever come off of the meds.

Sharon Cochenour
July 18th, 2004, 11:11 AM
Andrew has moderately high blood pressures. He will run 130-140 for his systolic. The highest I have seen it is 210/120 and he was in the hospital and they were worried he would have a stroke. I believe his pressures run high because all of his heart valves are damaged and the blood gets backed up in his heart and it gets overworked. I have to keep a close eye on them because the cardiologist is worried about him developing pulmonary hypertension. He is now on Lasix (water pill) daily and it has helped alot. His pressures are lower and runs around 100/50 as a baseline. The doctor is pretty sure it is related to the heart damage caused by MPS.
Because of this we have an EKG and Cardiac echo 1-2 times a year. This is what Ty needs to have for a baseline. With the echo they can tell you right then if Ty has thicken or malfunctioning heart valves. Keep us posted.

aaronsmom1027
July 22nd, 2004, 03:07 PM
Kim,

I wanted to let you know as a precaution that when a child has high blood pressure you don't want to overload them with fluids. Too many fluids will make the heart pump faster and that can lead to problems. Aaron is supposed to take in no more then 40 oz. of fluid a day but remember that his BP is really high (or would be if not for the meds) and has been that way for a long time.

momtoty
July 22nd, 2004, 09:53 PM
Thanks Tricia, I did not know that. :?

Love,
Kim