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Raising Special Needs Kids Raising Special Needs Kids

my little man is having issues again :( updated in replies

Posted by on Apr. 30, 2012 at 11:12 PM
  • 13 Replies
OK where to begin... Lifeson had a doc apt today he lost weight. He was 16 lb 6.5 oz in Feb and today he was 15 lb 12 oz. He has always had constipation issues but it was well controlled with miralax until about a month ago he get so bound up and has not been the same sense. So his doc prescribed a liquid stood softener as he doesn't take anything orally and is totally tube fed. So the issues is none of the pharmacies within 50 miles have it in stock and would have to order it and the insurance wont cover it in liquid form and it will cost me $50 a bottle and its not even a full months worth. Then his doc also prescribed a higher concentrate melatonin but again the problem is that no one has it in liquid form in a higher concentrate. They have it in a small bottle of 1ml concentration and it was $10 a bottle and it would only be 10 days worth. So now I'm trying to get the insurance to at least cover his stool softener as I know they wont cover the melatonin.
I'm just so frustrated. If we can't get his constipation under control he mite have to have surgery to put in a poo bag to bye pass his intestines and bowel and if he don't gain weight he mite have to have TPN (total parental nutrition) its a central line placed in his chest and I would have to give him IV fluid with nutrition and proteins in it daily. I hope we get all this figured out and I pray he don't need surgery again he almost didn't wake up after his last one. It took over 4 hrs and it was supposed to be about 45 min for him to wake up and after every surgery it progressively got harder for him to wake up and he also had breathing issues after each one that progressively got worst with every surgery. I'm a nervous reck I don't know what to do I don't think I could handle watching him go threw another surgery.
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by on Apr. 30, 2012 at 11:12 PM
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Replies (1-10):
letstalk747
by Joy on Apr. 30, 2012 at 11:37 PM
1 mom liked this

oh man , im praying for your  little sweetheart

mandee1503
by Amanda on May. 1, 2012 at 2:02 AM
1 mom liked this

Have your dr call your insurance. Their should be someone within the group he can talk to, and have him discuss about the fact that your son has the tube, and has to take things that way in liquid form. Don't take no for an answer momma, hang in there. I hope things turn around soon.

darbyakeep45
by Darby on May. 1, 2012 at 6:00 AM
1 mom liked this

Totally agree here!  Stay strong mama!

Quoting mandee1503:

Have your dr call your insurance. Their should be someone within the group he can talk to, and have him discuss about the fact that your son has the tube, and has to take things that way in liquid form. Don't take no for an answer momma, hang in there. I hope things turn around soon.


sammygrl77
by on May. 1, 2012 at 8:23 AM
1 mom liked this
(((Hugs)))
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sayres
by on May. 1, 2012 at 8:28 AM
1 mom liked this
I hope your doctor can get this worked out with the insurance company! You and your son are in my thoughts.
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i.heart.myboys
by on May. 1, 2012 at 8:43 AM
1 mom liked this
Prayers for you. Austin has been loosing weight and gaining it here and there. It's frustrating
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CameronsMommy23
by on May. 1, 2012 at 9:54 AM
1 mom liked this
I hope he's doing better asap! Keep trying with the insurance, sometimes if your doctor writes a letter stating how important the medicine is they can approve it.
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JeneneRose
by on May. 1, 2012 at 11:52 AM
Updated: I never take no for an answer unless its the answer I'm looking for. Thank you ladies for all your support and prayers. So far today hasn't gone to good Lifeson didn't sleep well last night then early this morning my phone rang and my uncle had a heart attack and is in the hospital then my grandpa called he is supposed to have a heart valve replaced in a few weeks but he woke up with severe chest pressure and could breath good so my mom is taking him to the er. I will he calling life's doc and incurace as well today and hope we can get this figure out with his medicine today. Thank you again for your support!
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jjamom
by Michele on May. 1, 2012 at 2:35 PM
Quoting JeneneRose:

Updated: I never take no for an answer unless its the answer I'm looking for. Thank you ladies for all your support and prayers. So far today hasn't gone to good Lifeson didn't sleep well last night then early this morning my phone rang and my uncle had a heart attack and is in the hospital then my grandpa called he is supposed to have a heart valve replaced in a few weeks but he woke up with severe chest pressure and could breath good so my mom is taking him to the er. I will he calling life's doc and incurace as well today and hope we can get this figure out with his medicine today. Thank you again for your support!



((Hugs)) you have a lot going on today. Hang in there! I would get the doctor to write a letter of medical necessity, you could probably fax it over. It's absurd that they are refusing a liquid version for any young child, let alone one who is tube fed.
darbyakeep45
by Darby on May. 1, 2012 at 6:58 PM

Wow mama!  Lots going on for you!  HUGS and keep us posted!

Quoting JeneneRose:

Updated: I never take no for an answer unless its the answer I'm looking for. Thank you ladies for all your support and prayers. So far today hasn't gone to good Lifeson didn't sleep well last night then early this morning my phone rang and my uncle had a heart attack and is in the hospital then my grandpa called he is supposed to have a heart valve replaced in a few weeks but he woke up with severe chest pressure and could breath good so my mom is taking him to the er. I will he calling life's doc and incurace as well today and hope we can get this figure out with his medicine today. Thank you again for your support!


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