DownSyn Forum

Vicki89 · Posted: November 19 2009, 10:37 PM Post subject: Furosemide- heart meds

Kole is now on meds for his vsd and asd, called furosemide. He has been on them for a day and a half now and we can not really tell anything yet. the cardiologist told us to give it a few days. but it seems to make him more fussy than normal and not wanting to sleep. i was curious if anyone has had experience with this meds and if so did it make your child fussy or not wanting to sleep? any help/advice would be great! thanks

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Mommy to Kole 10/7/2009 (Down Syndrome, ASD & VSD)

AuntieM · Posted: November 20 2009, 7:22 AM Post subject:

More commonly known as Lasix, this is a diuretic, causing the body to excrete excess fluid. It's used to decrease the heart's workload because of a decrease in blood volume that has to be pumped around. It can prevent or treat mild cases of heart failure. It is a very, very, very common drug.

I've never heard of any behavioral effects. Well, other than a need to go to the bathroom more often for those who are potty trained, and even that dissipates with time.

You truly might not see any obvious changes in Kole... it just may keep him from going into failure.

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Mary, retired Pediatric Clinical Nurse Specialist
Great-aunt to Tarryn (DS, 5 years old)

Courtney · Posted: November 20 2009, 8:03 AM Post subject:

Lucy was on this from about 3 months old until a few months after her heart surgery. We never "saw" the effects of being on the meds, except that she never went into serious heart failure and that was part of the reason why.

The only thing I ever noticed was that her urine had a very strong odor while she was on the Lasix, and I think it was just because of the increased output. Also, when she was on her strongest dose, just prior to surgery, we would sneak in and do a diaper change just before we went to bed, otherwise she'd wet through her diaper in the night.

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~Courtney
{Lucy, 5, Ds, AVSD repaired 1/08; Brodie, 3}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

burnsun · Posted: November 20 2009, 9:36 AM Post subject:

i NEVER REALLY SAW ANY PHYSICAL CHANGE WHILE mIRANDA WAS ON THE LASIZ (FUEROSIMIDE) ...... I know it tasted terrible ( i had some in liguid form last year) ....... and Miranda always mad horrible faces!

I would give it in the morning and that way I could catch most of the diapers..... since it is doing its job if you see more urine out put!!!! And I liked them in the morning

(it is to keep excess water from building up because that water would make her work harder to eat, breath and all the other things)

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Vicki89 · Posted: November 20 2009, 10:56 AM Post subject:

ya kole had to take it 2 times a day so we have to do it at night... so im just getting up twice and changing him. he has been given it because he has a few signs of heart failure and because of the slower weight gain. we will be going wed to check his weight. hopefuly he has put some on. thanks everyone for the replies it makes me feel alot better that you all have had experience with what i am going through.

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Mommy to Kole 10/7/2009 (Down Syndrome, ASD & VSD)

eroch · Posted: November 20 2009, 12:50 PM Post subject:

He may actually have initially lost weight due to the diuretic effect of the med. That's what happened when my daughter started on it. But then, it started going up again.

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Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)

Kara · Posted: November 20 2009, 2:35 PM Post subject:

My son took Lasix, too, from about 2 weeks old until after surgery. I didn't notice any behavior changes, but I know he just plain didn't feel good with his heart issue. I think the spitting was the worst for him. The only thing I really noticed from the Lasix was super soggy diapers.

Vicki89 · Posted: November 20 2009, 10:21 PM Post subject:

thanks everyone! what is all your experiences with the actual surgury? he will mostlikely have it once he hits a good weight and i just want to be ready for all of it.

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Mommy to Kole 10/7/2009 (Down Syndrome, ASD & VSD)

ajbest · Posted: November 21 2009, 7:08 AM Post subject:

Kara wrote:

My son took Lasix, too, from about 2 weeks old until after surgery. I didn't notice any behavior changes, but I know he just plain didn't feel good with his heart issue. I think the spitting was the worst for him. The only thing I really noticed from the Lasix was super soggy diapers.

same experience as above - Janna was on Lasix from baby until July of this year (although heart was repaired at 4 mos. she still has a leaking valve). when i have more time i will send you links to our heart experiences. i'm sure Kole will do great!

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Momma to Janna Macie (CAVCanal/Mitral Valve Repair-T21-02/02/05)
Wife to Joseph (TOF & still thriving)

"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi

"God has not always answered my prayers. If He had, I would have married the wrong man several times." Ruth Bell Graham

Courtney · Posted: November 21 2009, 7:09 AM Post subject:

This is a page from my blog where I talk about the day of and those immediately following Lucy's OHS.

http://cremcd.wordpress.com/ohs/

Also, on my blog, in the "category cloud" (all those random words), there is a category of "Congenital Heart Defects". There are a bunch of posts that I have written since her surgery that deal with that time.

I'm always happy to answer any questions you may have.

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~Courtney
{Lucy, 5, Ds, AVSD repaired 1/08; Brodie, 3}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

Kara · Posted: November 21 2009, 8:55 PM Post subject:

Surgery....well, I won't lie. It was scary. But, he did great. He had his when he was 5 weeks old and wasn't gaining weight even on an NG feeding tube. He spent 13 days in the hospital, most of that in the PICU. He also had pulmonary hypertension, which made things a little more complicated. It was all very much worth it, he was absolutely a different child when we brought him home. Much more full of life, engaged, even better muscle tone. It was amazing the transformation. We took pictures of him day by day following surgery, if you'd like to see them, I'm happy to share by email.

Tigger · Posted: November 22 2009, 8:02 AM Post subject:

Talitha lost weight initially on the lasix. She struggled to gain the weight they wanted her to for the surgery in spite of being tube fed with additional calories. They were still waiting for her to gain when she went into severe heart failure and they had to schedule her operation. Our first attempt was cancelled because she was vomiting blood because of severe reflux. A week later that had settled and she went in for surgery. It was the scariest time of my life and she had complications which were also very scary. But once she stabilised she recovered quickly and had so much more energy, started gaining weight and was much more alert and active.

This type of surgery is done on a daily basis and they are very good at it. They will give you the worst case scenario to cover their butts but it is very rare for kids to have any significant complications and they usually recover amazingly quickly!

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

MegansMom · Posted: January 04 2010, 8:45 PM Post subject: surgery

Megan had a shunt (closed heart surgery) at 5 weeks old and that went fine. She recovered very quickly. Then at 6 months they did the complete repair for her defects (complete AV canal and Tetrallogy of Fallot) and I will admit the recovery was rough. She spent some very scary nights in ICU where things did not look good, but she is fine. She had some complications (from the Tetrallogy component) and she was in the hospital for almost a month. We saw a lot of kids come through the cardiac surgery unit and most seemed to recover quickly and go home (I was jealous of those families at the time). Kids are amazing. Even with complications Megan was playing on a mat on the floor at the hospital after a week. She just still had IVs and a chest tube in. Now at almost 10 months she is doing really well. She is off the charts for size (onto the typical kid chart) and acting interested in crawling.

I will say that I thought that once she made it through the actual surgery the worst was over. The worst ended up being the ICU time. Feel free to contact me if you want to talk. It's all very fresh for me because it was just a couple of months ago.

Wishing you the best!
Katie

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ElijahsMom · Posted: January 09 2010, 11:42 AM Post subject:

Eli was on Lasix and 3 other meds before surgery. The other one is Enalapril and he is still on it even 3 years after surgery. They are trying to wean him from it now, but he is going yearly. Hopefully at our next appointment in March he will be able to come off of it.

Yes, don't be suprised if he loses weight while on the meds, and I was told to not expect Eli to have significant weight GAINS until after the surgery. He gained about 5 lbs in the first month and a half after surgery. Before that, it took 5 months to gain 5lbs. He was 4 lbs 14 oz at birth and he was just at 10 lbs when he was 5 months old for surgery. He picked up weight fast after his surgery.

He was in surgery for 14 hours, and only stayed in the hospital for 5 days. He healed really well and quickly. He did so well for how difficult the surgery was.

Good luck, and you will really be suprised!!!! Smile

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Elisha
Mommy to Elijah Thomas, 4 1/2 years

and RaeLynne Ruby Lee, 2 years