Tuesday, November 23, 2010

Moral Dilemma

I feel like a horrible mother for even typing this post, but I have been struggling with this for a couple of weeks now and I need other opinions.

Addison is on Sildenafil (Viagra), a medication to help expand her blood vessels leading to her lungs to reduce the effects of her pulmonary hypertension.

She has been on this medication pretty much her whole life. We have faithfully filled the prescription and given it to her as told to once again...her whole life. (at $40 a bottle after insurance...this takes dedication to keep up with, believe me)

For most of her life, she has been critical- on oxygen with careful instructions to watch her breathing and stats. Now, she is no longer critical. She is off oxygen and her stats aren't even a question any more.

Her cardiologist told her that he wanted her to stay on the Sildenafil and just grow out of the dosage (which means that we're looking at continuing to give it to her another 9-12 months at the rate she is currently growing)

Here is my dilemma...and I hesitate to even share this next part.

A couple of weeks ago, when I was playing in Peter Pan and was crazy busy out of my mind...I called in her prescription refill (it takes 24 hours to fill only at one pharmacy in the state...sigh) and forgot to pick it up.

For the first time in her life, she went without the medicine at all....for a week.

I am ashamed to admit this. We have been so careful about this- including fighting pharmacists to get it on time so that she wouldn't even miss one dose.

During that week, Aaron, myself and Addison's PCA all noticed something.

Addison was more alert- she wanted to sit up- she was talking more- she was happier-she worked harder on her physical therapy-her appetite increased, she couldn't get enough of the solid foods.

I thought it was just me, but when I asked the PCA if she noticed anything weird about Addison's behavior the last few days, her observations mirrored mine exactly.

When Addison would have days of just wanting to lie in her crib and stare at her bumper pads for hours or would refuse to sit up even though I knew she could or would refuse to do certain therapy things- I blamed it on the Down syndrome.

I thought back through the last few months. She does her best sitting up/therapy work/talking/interacting with us at night- right before bed- right after her morning dose has worn off and she is about to get her night 2 ml of Sildenafil.

I am no medical professional (believe me), but my thought was that the medicine was somehow changing her personality- changing her desire to be upright. The only thing that the bottle says is - "May cause DIZZINESS" in large cap letters, just like that.

So this medicine that is helping her breathe is causing her to be miserable the rest of the time until it wears off?

I didn't even think to question the doctor's choice of the medicine. He prescribed it- we gave it to her.

As far as her breathing during the week without the medicine, it was still really great for the first half of the week and then I did notice a slight change towards the end of the week- so the medicine is still obviously helping her somewhat. Although, during the Cath, they labeled her current Pulmonary Hypertension level as mild.

How can I keep giving her a medication that is holding her back physically and emotionally? How can I keep giving it to her now knowing that it is causing her to be extremely DIZZY? She can't tell me that she is dizzy, but now as I look at her responses to different activities, especially right after she gets the medication, I know realize that she has been telling me this for MONTHS and I haven't been listening or watching.

I'm afraid to call her cardiologist and 1. admit that she went a week without the medicine and 2. ask if we can give her a smaller dose or whatever because I known what they'll say. (You don't work with a doctor for 9 months without being able to anticipate an answer like that) He is extremely conservative and afraid to change something that seems to be working (why do you think that we were on oxygen for SOOOOO long even after I knew that she didn't need it any more)

My thoughts are maybe I should just give her her dose at night and let her sleep off the dizziness but not give her any at day so that she can feel OK....but it scares me to do something differently than we were told to do.

I am Addison's advocate. What does that mean in this situation?

HELP! What would you do? Anybody else have a baby on Sildenafil?


  1. Deanna,
    My immediate thought is that you should seek a second opinion from another doctor. Do you have any friends who work in the medical field who know anything about this medication? Anyone who could recommend another GOOD doctor for a second opinion? It just seems SO important that the doctor listen carefully to everything you tell him and weigh all of that in making his decision about this medication (or possibly an alternative medication) and the dosage. Also, have you done any research on the internet about this medication. That might give you more insight, as well. Wish I could be more help to you, Deanna! I will pray that this gets resolved!

  2. I would get a second opinion but if they both agree she needs to "wean" off of it then I don't see why she couldn't cut the dosage in half and have it at night? Makes sense to me, but then again I'm not a doctor either!

    Regardless I think it is something you should talk to her Dr. about ASAP. Never forget that you know her better than anyone and if you think she would benefit more from a smaller dosage then she most likely would! Follow that motherly instinct, it's rarely wrong! ;)

  3. But wouldn't the doctors in Boston count as a second opinion? They agreed on this medication as well. Who disagrees with the Children's Hospital in Boston? This is part of why I feel so confused.

  4. I agree with Becky- get a second opinion. A third even- I would go with your gut. And not that you have all the time in the world, but I would research it like crazy- go on every forum you trust (Babycenter is my favorite- thousands of moms!) and ask all these questions. Of course you would go (ultimately) with what a medical professional says over a random stranger on a forum- but I have found that many times moms do know best, and a lot of medicine, procedures, etc. is based on liability, KWIM?
    My twin nephews were put on a certain medicine at birth, because they were premature. Their kidneys were underdeveloped, and it was a preventative med, to make sure they didn't develop infections. After 6 months of yeast infections from the med. my SIL questioned the doctor- he said they HAD to stay on it. She got a 2nd opinion and that dr said she could take them off if she felt she needed to. She was so torn, but her gut instinct was that the med was causing more harm than good, so she took them off and they never had a problem.
    Of course that story is purely anecdotal, but I just think you should go with your gut and pursue that train of thought- that Addison seems to be doing so much better off without it.
    I agree with what Wren said, the cutting it in half and giving it only at night seems like a good option.
    Keep us posted!

  5. Hmmm, this is a tough one, wish I could help you out. I strongly feel if you are seeing a difference in Addison you should tell the Doctors about it. Doctors know all about medication, but you know all about your daughter and you are the one seeing first hand how it is affecting her...the Doctors need to hear this so they can think of how they can readjust it... Doctors sometimes rely on parents to tell them how exactly they feel a certain medication is working with their child, if they dont hear anything from parents they assume everything is fine and just stick with the dosage they have given. It never hurts to bring it up with them.
    Good luck :)

  6. Even if it is embarrasing, you should explain to the doctor what happened (maybe down play the length of time she was off it if you need to - it sounds like the difference was noticeable pretty quickly now that you know what to look for). Bascially, you have good evidence that the side effects are causing your daughter discomfort and interfering whith her physical progress. Ask if there is a different medication that she could be given instead, something that might help her breathing but does not have to same side effects? You might need to point out bluntly that if it affects her ability to sit or otherwise be upright up and she is supposed to continue taking it for 9-12 more months, that will potentially have a HUGE impact on her motor skills & physical development. The doctors may react differently if they know that the side effects are an issue vs. when to the best of their knowledge there aren't any. I don't know anything about PH medicines though so I'm not sure what else might be available - do some research online & find out, and then if there are other medications available you could ask about them specifically.

    Good luck with this! Our daughter with Ds is 18 months old now, never had any breathing issues, but her share of other medical stuff (resolved now, fortunately).

  7. As far as forgetting the prescription - it happens! I've left my daughter's heart meds at my in-laws at least twice now - they have to be refrigerated, so I can't just pack it again right after it give it to her. I have to go the the local Children' hospital to get a refill (fortunately not too far away - much closer than my in-laws in any case), so that alwas takes a couple of days as well. At least ours are generic, so they don't cost too much even when the ensurance won't cover a replacement bottle.

  8. You (and Aaron)are Addison's only advocate(s); try not to fear the Doctors or what they will think of you. You ultimately only answer to your husband and the Lord for your actions. I know adults who cut back or eliminate BP meds because they dislike the way they make them feel. In a little baby, you can only know what you observe since she cannot tell you what she is feeling. As long as changing the medication will not harm her, I would see what you can do to allow for good health AND overall developmental well being. Pray pray pray!!

  9. I really think that you have nothing to be ashamed of and see it as a blessing that by forgetting to pick it up, you got this glimps into your daughters wellbeing. I don't think that was an accident! P's never taken this medication but yesterday I took him in for symptoms I was sure I'd be told I was crazy. But I was right. I then took the chance to run through a list of concerns and procedures I've been wondering about for Porter. Everything I brought up his Doctor said, "You're right that would be good." His doctor didn't think of those things, I did, they would never even have been considered if I hadn't asked, these things can seriously alter the quality of my sons life. We're the only voice our kids have, and while I wish there was someone to walk me through his health needs I'm his Mom and I have more insight than any doctor that sees him.

    Prayers- that her doctor listens and comes up with a good solution!

  10. I would talk to her doctors. Even though they are recommending the med, there is now new information to consider. You know that it is adversely affecting her, and that needs to be taken into consideration. Follow your instinct!

  11. Both my daughters were on meds for seizures, and I weaned them a lot sooner than the doctors said after their EEGs came back with no problems. I however, didn't tell the doctor because I also knew he would be upset with me. I KNEW they didn't need it anymore, and I was right -- they never had anymore problems! HOWEVER, that is a lot different then breathing problems. So... I can't really offer a professional option, but I like your idea of just giving it to her just at night, or the idea of asking the doctor for a different med option. I'll pray that you have God's wisdom in this tricky situation!

  12. contact the DS Dr. who visited Addison on Boston. Run the entire scenario by him......he seemed levelheaded and knowledgeable.

    I agree that you know Addison best of all and if you see a significant difference in her overall well-being after being off of the med, then I'd follow my gut on that one.

  13. Mothers instinct - Go with it! Explain it to him and if he doesn't listen, explain it to the next Dr. If this was you, you wouldn't stop complaining to Drs. that you were dizzy all the time and couldn't function well upright. You'd keep looking for a solution...or you'd wean yourself off of it. I'll be praying. I know the Lord will provide a solution.

  14. just reading your blog today...I would definitely talk to the dr...get another opinion, or even just talk to her pediatrician (depending on how your relationship is with them) or you could even contact another pediatricians office (or pediatric specialist) there are lots of great ones at vt specialty....it sounds like miss addison is yet again surprising everyone with her awesome abilities...Great job noticing the differences in behavior on and off meds...don't beat yourself up about forgetting....we all do it, remember you are only human! :)
    if you need names of other dr's email me..I know a few in the peds department :)

  15. Sometimes mothers know best! I would go for the second opinion. However, educate yourself before you go. I grew up with a lot of health problems and I have learned that if you know what you are talking about and can give more than "I think the meds are making her dizzy" the drs are more out to listen to you. Write down everything you want to tell the dr and take the list with you. Be confident. No one knows Addison like you do...and don't be afraid to tell the dr that. Praying for ya!!


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