Livvi's new treatments


#1

Hi all,
Livvi just got home a few days ago from the hospital. I took her to the ER with 104.3 fever & lethargic- very sick. It turned out to be Influenza B & she was severly deydrated, so she stayed until Tues. for lots of IV fluids, Tamiflu & antibiotic, (because we think she has another sinus infection too. They didn’t want to do another CT scan because of radiation). I’m so glad we got home in time for her first Pulmonoligist appt. at U of Mich. We met our Pulmonogist for the first time , and we were very impressed. He’s part of the pediatric cystic fibrosis clinic at U of M, and he actually treats several other PCD patients. He spent LOTS of time with Livvi answered tons of questions and made it very clear that he was determined to keep Miss Livvi OUT of the hospital for a while. That’s our goal! He gave us an extensive plan of daily treatments and
medications for Livvi, and if she gets sick again, we are to call him right away and take her to Ann Arbor instead of the local hospitals, so he can treat her. Her daily treatment plan looks something like this:
How does this compare to everyone else’s plans, (children)?

Every morning: * Pulmozyme (with the nebulizer and a mask)

  • This is followed by about 20 min. of chest
    physiotherapy, (“poundings” for now, but he
    said we may be getting “the vest” soon.
  • She will also take Bactrim every day
    as well as Zyrtec.
    Every night: * Sinus rinses followed by steroid nasal spray
  • If having any problems, she would do more Pulmozyme
    and chest physiotherapy.
    All of this is her routine when she is WELL. When she is starting to get sick, we are to do all of this, (increasing the Pulmozyme and physiotherapy) ,and we are also to add Albuterol in the nebulizer every 6 hrs. and double the antibiotic.

We will have a physical therapy appointment next Wed.
to be trained in the physiotherapy. Livvi has a lot to
get used to right now. Tori, my 14 yr. old, was also seen by the Pulmo. (She has a long history of lung problems and coughing.) He decided not to do a biopsy right now. He wants her to try a couple daily medications for a few months first to see if they make a difference in her symptoms. Tori was pretty happy with his decision.
It’s a big relief to finally have a clear plan of treatment and to
have one main Doctor, (the pulmo.), who is charge of Livvi’s care. We have never been quite sure which Dr.to call first when she has problems. I’m sure I’ll have lots of nebulizer, physiotherapy & vest questions over the next few weeks.
My first question is does anyoe have any tricks for getting a 2 (almost 3) yr. old to cooperate and not cry through her nebulizer treatments? We have put movies and TV on for her, tried talking and singing to her. She hates it! If she hates this, I’m anxious about how she’ll act with the “vest”.
Thanks in advance everyne for your
help! Take care, Missy, (mom to 4 girls: 14, 13, 6 & Livvi, 2-PCD)


#2

Is she using a mask for it? Many children positively HATE the mask, but will take a treatment if it is just blown in their faces, especially if you don’t blow it directly into their faces, but come at a bit of an angle so it doesn’t go right in their eyes.

In reality, she may be getting more medicine in when she’s crying, since she has to take a deep, deep breath in in order to cry. But then there’s the argument that she’s exhaling so long when screaming that it may not be worth it. Personally, I think a crying child, while not nice for HER or for YOU, may be getting the best treatment she can get, short of understanding what she needs to do, and cooperating to do it. Another thing that crying does is really exercise the lungs, which tends to make her cough more junk up.

But it’s traumatic for all concerned, and that’s not good, because she’s going to have to do these for the rest of her life. So having her learn to be as cooperative as possible really counts.

You could try giving yourselves a treatment with just saline first, and then try having her do it with HER meds, telling her it’s her turn to show her favorite bear or doll what it will be like, and how to take it, and then have her give a ‘treatment’ with a tiny bit of water to the toy. You can also use “pound” on each other a bit, first, then on her, and have her learn to do CPT on her toy. It often helps us feel ‘grown-up’ and able to tolerate more than we think we can, if we have to take responsibility for someone else. If she has to be ‘responsible’ for taking care of her teddy bear’s PCD, it might help her to get through her own a bit more easily.

All that said, in 23 years of pounding on babies and kids, I have to say that there were just SOME kids who simply had to be held down and treated, in spite of everything we could think of to help make it easier for them. Not many, but as it happens, Livvi is right at the age where many of those kids happened to be—there may be something about the year between 2 and 3 that makes them that way, I don’t really know. But there are just some kids who cannot STAND to have anyone mess with them in certain ways.

In that case, you might have to resort to bribery, and see if that works. My stepsister’s granddaughter went, at age 5, from perfectly healthy to having a liver transplant in less than 2 weeks, and the poor kid had to take adult-sized doses of TEN anti-rejection drugs twice a day. She had to drink so much fluid to get it all down that she would be full before she even finished, poor thing! Needless to say, after a few weeks of it, she went hysterical on them one night, and they wound up having to take her back to the hospital, where the docs managed to convince her to try a little longer.

I went to the dollar store and bought a whole bunch of little interesting toys, wrapped each one up in bright paper, and packed them all off to my stepsister. Each time Kaitlyn took her meds with no fuss FIRST, she would then get to reach into the box and grab a package. The toy was then hers to do with what she pleased (I was careful to check acceptable toys with her grandma first!)

I tried to be really inventive—a feather boa, a ‘princess’ tiara, a ballet skirt, bubbles, play-doh, finger paints, wind-up bathtub toys, a miniature human skeleton (THAT turned out to be a huge hit!!), a bug-collector’s kit, a little stuffed fish, colorful stickers and a sticker album, little stampers and an ink pad, ‘tattoos’----anything and everything I could find there that I thought might engage a 5-year-old.

Well, that did the trick! Once that box full of surprises arrived, there were NO more problems with taking meds. Luckily, within a couple of months, they were able to decrease many of her meds, and now, three years down the road, she only takes two of the original ten. But that box of surprises helped a stressed little kid and her family get through a rough stretch, until they all felt a little stronger—strong enough to do without the added incentive.

This might not be the best idea for you, since Livvi is only not-quite-three, and would not really understand why she got toys SOMETIMES for doing her treatments and then didn’t get them any more. It might only create more problems than it solves. I don’t know if a bribe of a different type would work, either, but it might be safer that way----maybe you could say you’d all go to the park (or some other cost-free treat) as soon as she finished doing her treatments “nicely”. She’s young, but she knows what that means, I’m sure. If necessary, you can tell her it means sitting relatively still, not fussing/crying/screaming, etc.

I hope someone else has better ideas for you—keep us posted.

Regarding Tori’s biopsy, personally, I would rather know, if it were me (if they CAN get a definitive diagnosis, of course). If she does have PCD, fertility may be a problem to contend with, should she ever want children, and knowing that ahead of time might be a good thing; in vitro fertilization is not cheap, even with insurance covering a lot of it these days, and many of us PCDers need that in order to have kids.

A few of us manage to conceive without any help at all, but an awful lot of us don’t. Had I known that I had this, I might have made an effort to save enough money to try in vitro years ago, when the couple had to pay ALL of it themselves. I would also probably have tried a lot earlier than I did.

Another thing she should know about is that many of us who DO conceive naturally have a much higher rate of ectopic (tubal) pregnancies, and an undiagnosed ectopic pregnancy can kill you. So I would DEFINITELY want to know.

At least the doc it treating her for the symptoms she has, anyway, which is really what the treatments for PCD are. The most important part—saving her lungs—is finally beginning. But there are other factors to think about, and I feel both you and she should be aware of them, so you can think and talk and plan for them.

Let us know how they’re both doing!

Laurel (52, PCD/SI, diabetes, SC)

momto4girls kartagener-cpt8666@lists.careplace.com wrote:


#3

Was there a particular reason for Zyrtec? Does she have allergies or is
this a protocol for PCD?
Shelagh

-----Original Message-----
From: momto4girls [mailto:kartagener-cpt8666@lists.careplace.com]
Sent: Sunday, April 20, 2008 7:35 AM
To: shelagham@cox.net
Subject: [kartagener] Livvi’s new treatments


#4

Hi Shelagh, I’m not sure why he gave her the Zyrtec. She doesn’t really have any allergies except for eggs. I’ll see him tomorrow, (pulmo), so maybe I’ll ask why. Missy


#5

If you get a chance to ask, it would be good to know. It sounded like a
protocol, so I was curious.
Shelagh

-----Original Message-----
From: momto4girls [mailto:kartagener-cpt8666@lists.careplace.com]
Sent: Tuesday, April 22, 2008 9:59 PM
To: shelagham@cox.net
Subject: Re: [kartagener] Livvi’s new treatments