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Forum: Children with Special Needs

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  #1  
April 14th, 2009, 01:09 PM
Ditzzy's Avatar Stupid Lamb;)
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Is your LO on a lot of meds? I know it can be hard to keep track of. At one point Ava was on 12 meds, which is way too much.
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  #2  
April 14th, 2009, 01:14 PM
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No. He is only on Zantac for his reflux. He was on Lasix after his heart surgery but has been off of that for awhile now.
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  #3  
April 16th, 2009, 08:13 PM
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my boys are both on 4 meds a piece. Between them and myself and my hubby I organize 20 pills a day and 3 liquids. too much for sure
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  #4  
April 16th, 2009, 08:28 PM
kittycat's Avatar Platinum Supermommy
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Kyle came home on 18 combined doses of various meds and nebs/daily. Thankfully - we're down to 3 seizure doses/daily, 3 nebs (done in a single sitting) - extra as needed, then two daily 1/2 doses of Zyrtek.
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  #5  
April 18th, 2009, 08:41 AM
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Milo has at least 8 meds, sometimes down to 7, but has had 12 or so at different times. He has 3 nebulizers-6 times per day, 2 nebs at a time. He has an antibiotic right now, 2x day. Steroids 2x day. Zegerid 2x day. Baclofen 2x day. Growth hormone 1x day. Miralax 1x or 2x day. A lot of these can't be given at the same time, have to wait 2 hours between certain types, etc. He also has oxygen and a feeding pump. It takes half an hour every time we give the nebs, and I have to pump at least 8x day, which takes half an hour each time. We're spending 8 hours per day just on pumping and nebulizers. Sheesh. 2 hours to prepare formula (for the overnight feeds) and meds (from powder to liquid-can't be done ahead) and give them, an hour or more to clean everything throughout the day, an hour of exercise and massage for him every day, and an hour (average) to make calls pertaining to Milo. This isn't including the 5 or so appointments he has every week, picking up meds and supplies, and his basic cleaning, etc. I feel so sorry for Kannon. So much atttention to Milo.

Sorry...not really off-track, though. Meds are time-consuming.

Last edited by iamkc; April 18th, 2009 at 10:57 AM. Reason: more meds, explanation
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  #6  
April 18th, 2009, 10:24 AM
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Lets see here
6MP (daily, m-f lower dose, sat/sun higher dose))
Methotrexate (weekly)
Vinblastine (day 1 of 21 day cycle)
Prednisone (days 1-5 of 21 day cycle)
Bactrim (2x day on Monday, Tuesday, Wednesday)
Fluconazole (1x daily)
Colace (1x daily, 2x if needed)
Zofran (as needed)
Pepcid (2x daily days 1-5 of 21 day cycle and as needed other days)

They may be adding a pain med as well, but we will see.

I have a 3 week schedule and we are down to 4 dose times at the most each day. I just put up the schedule, complete with dosages, and cross of each dose I give.

Last edited by docsmomma; April 18th, 2009 at 10:26 AM.
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  #7  
April 18th, 2009, 10:55 AM
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HA! I KNEW there was another one! Miralax. Um, given with apple juice...yet we still have issues. Traci-I saw Colace. Did you ever try Miralax? I have a feeling that it's not working, and when we up the dose, it's not working properly. I was going to ask about switching to something else...
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  #8  
April 18th, 2009, 11:14 AM
Daisyfields's Avatar Platinum Super Mega Mommy
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The only kids that are on medications are my older children. They have yet to put my LO & toddler on Rx's, the ones they have suggested aren't FDA approved & I am also in the process of finding another/new neurologist for him. Perhaps they will decide that an Rx is worth it. I hate Rx's, I myself take almost 20 pills per day, I have medical problems of an 80 year old lady, so for me, I know what it can do to you & how you feel on them. I try to keep my kids on natural foods, take multi-vitamins, Omega-3's, do the "natural" stuff...organic. But... "if" a doc told me that my kids could benefit positively from an Rx and it wasn't black boxed (as most are), I'd give it a try.
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  #9  
April 18th, 2009, 12:35 PM
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Ava's meds right now are:

Prednisone 2x daily (day 4 for this cycle)
xopenex for neb as much as needed
Pulmocort for neb 2xdaily (maintenance)
hydrocortisone 2xdaily
c-phen drops as needed 4x/daily and at bedtime (maintenance)
veramyst 2x daily
prevacid compound 2x daily
L.N. decon w/ phenylenphrine
amoxil 2xdaily (day 4 of 10)
albuterol for neb as needed

I'm hoping to get rid of some of the steroids soon. She's so swollen.
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Last edited by Ditzzy; April 18th, 2009 at 12:38 PM.
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  #10  
April 18th, 2009, 03:23 PM
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Quote:
Originally Posted by iamkc View Post
HA! I KNEW there was another one! Miralax. Um, given with apple juice...yet we still have issues. Traci-I saw Colace. Did you ever try Miralax? I have a feeling that it's not working, and when we up the dose, it's not working properly. I was going to ask about switching to something else...
Melanie was on Miralax, and still is sometimes. It has onyl worked for her at the "adult" dose and takes 3 days to work. The Colace works great for Joey, we have to give it daily because his meds make him constipated but it has really made a big difference.
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