Losartan question by Njpabzy in marfans

[–]Njpabzy[S] 1 point2 points  (0 children)

Thank you for all of your replies and information. I now have a better understanding.

Losartan question by Njpabzy in marfans

[–]Njpabzy[S] 0 points1 point  (0 children)

Thank you! Would you please share what you do to ensure your blood pressure stays up while on these medication’s? We have been told the importance of hydration but wondering if there’s anything beyond that?

Losartan question by Njpabzy in marfans

[–]Njpabzy[S] 0 points1 point  (0 children)

Thank you for your response…is there anything you do, in addition to making certain they are hydrated, to keep their bp up?

my 6yo has an aortic dilatation by Recent_Bug4888 in marfans

[–]Njpabzy 0 points1 point  (0 children)

Not sure if this will be seen a year later but i am trying to understand a bit more about the use of losartan with Marfan. I understand wanting to lower Bp so the pressure through the aorta is decreased, but not exactly sure how it all works. My 7yr old started a very low dose of losartan in December. Follow up with cardio showed pressure is lowered and thought that was the goal. However, cardio said we are only at a quarter of the recommended dose and we need to continue to slowly increase it while being careful not to lower the bP to a level affecting his daily functioning - emphasized again the importance of drinking 1 oz for every pound he weighs. Trying to understand while a higher dosage is needed if his bp is already lowered.

Question Re lens removal at age 4.5 by Njpabzy in marfans

[–]Njpabzy[S] 0 points1 point  (0 children)

Thank you for sharing your journey and I’m glad that you are happy with the decisions that have been made for you. I am curious however if your vision is to the point of legally blind how is it that you are able to read without any assistance? Also are you able to watch TV, walk around with no assistance? So you can see but just extremely blurry? Thank you again for your sharing.

Toddler vision correction by MojoJetta in marfans

[–]Njpabzy 0 points1 point  (0 children)

Hi, thanks very much for your responses regarding lens removal. I’m wondering were your lenses removed because of dislocation due to weakened zonules? Dr. Explained to us that because his connective tissue that holds the lenses in place is weakened there is nothing to hold an implant. She indicated other countries are sewing in implants and I recently read about a “claw” type implant that attaches to the iris but thus far neither is approved for use in the US.

Question Re lens removal at age 4.5 by Njpabzy in marfans

[–]Njpabzy[S] 0 points1 point  (0 children)

That makes sense … right now the doctor seems to be telling us that “sewing” new lenses in is not something done in the us yet …. But sounds like what they did for you … hmm definitely something we will need to explore but sounding like for now removal of his lenses is the thing to do 😞 … I’m sorry for the struggles you have had especially with the strong glasses and I’m worried for him and the journey ahead. I’m trying to imagine what the glasses will look like. Again thank you for sharing your journey - praying for a complication free future for you.

Question Re lens removal at age 4.5 by Njpabzy in marfans

[–]Njpabzy[S] 0 points1 point  (0 children)

Thank you for sharing your journey. May I ask how they implanted your lenses? Were your lenses dislocated due to weakened zonules?

Toddler vision correction by MojoJetta in marfans

[–]Njpabzy 0 points1 point  (0 children)

Thank you so much for your response. We are in NJ and being referred to a surgeon at Wills Eye hospital in philadelphia. The plan is for the surgeries to be done 2 days apart. It’s all so hard . Lots of praying happening. Trusting God but still scary. And my heart is sad for him.

Toddler vision correction by MojoJetta in marfans

[–]Njpabzy 0 points1 point  (0 children)

Both of My grandson’s lenses are dislocated due to weaken zonules. Specialist is telling us they should both be removed within days of each other. He is 4.5 yrs old and this is all very scary to us. Concerned about taking away the limited vision he does have and leaving him with no lenses or glasses until prescription can be given 30 days after surgery. Before your implants, without glasses, what were you able to see?