Special Needs

Peyton's MRI & H got a new job (gah!)

So, H got a new job and he starts on the 30th.  It's $7 more an hour and the out of pocket max is $1000/person $2000/family instead of $4000/person $8000/family.  BUT it's a private plan, not group plan, and all of the specialist are over 70 miles away from here! 

I'm losing it over thinking that we are going to have to find ALL new doctor's and drive practically to DC to see them!

Peyton's MRI showed that her cord moved a minimal amount so she has not re-tethered!  They want us to see physical medicine? I think at the Spina Bifida clinic next Wed since she's having pain.

 ETA: we are going to have to cobra for 3 months too ($1400/month!!) I hate insurance.

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: Peyton's MRI & H got a new job (gah!)

  • I would definitely call the insurance company up.  I know when I had my chest surgery for cancer the only insurance providers were about 45 miles away.

    My mom called (I was on their insurance at the time) and they said they had to provide a doctor within a close commute (I was in NJ and it had to be incounty) and I could pick whomever I wanted to see.   Maybe they'll be able to work out something like that with you?

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • imageToastieSimons:

    I would definitely call the insurance company up.  I know when I had my chest surgery for cancer the only insurance providers were about 45 miles away.

    My mom called (I was on their insurance at the time) and they said they had to provide a doctor within a close commute (I was in NJ and it had to be incounty) and I could pick whomever I wanted to see.   Maybe they'll be able to work out something like that with you?

    I hope so, it just doesn't seem fair.  I do know their HR department told me they had no out of network coverage as of 1/1/12 so I'm not sure if that will make a difference or not. 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • imagerealisticdreams:
    imageToastieSimons:

    I would definitely call the insurance company up.  I know when I had my chest surgery for cancer the only insurance providers were about 45 miles away.

    My mom called (I was on their insurance at the time) and they said they had to provide a doctor within a close commute (I was in NJ and it had to be incounty) and I could pick whomever I wanted to see.   Maybe they'll be able to work out something like that with you?

    I hope so, it just doesn't seem fair.  I do know their HR department told me they had no out of network coverage as of 1/1/12 so I'm not sure if that will make a difference or not. 

    No idea, but I was on a true HMO at the time, 0 out of network coverage, you either saw their doctor or you paid out of pocket.

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • I would definitely call the insurance company and talk with them.  I've had different info given to me on the insurance website from when I called and talked to an actual person.  We've been able to go to quite a few MDs that didn't even show up online because I made the call.  BTW we're practically neighbors, I live in Prince William County so hi neighbor :)  GL with the insurance.
  • I was *just* about to start a thread about insurance, because I figured some of the SN moms would totally understand.  We've had cobra for 16 months (DH lost his job 10 days after #3 was born).  It's a hard enough fight to get him his growth hormone each month and now the plan administrator changed pharmacy administrators!  So I've spent 2 weeks, hours each day trying to figure out how to just get our two vials of growth hormone sent. 

    Yes, insurance is a blessing and a curse all sent to make me tear my hair out.  

     

    I hope that you can find closer doctors or work something out with the current ones.  I definitely know that stress.  GL! :)

    Our Little Fur Family
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    My Three Sons
    #1: 2.06 #2: 1.08 #3: 9.10

    DS #3 diagnosed at birth with panhypopituitarism - lack of pituitary function. He is treated with thyroxine, hydrocortisone, growth hormone and testosterone.

  • imagelauraandlee:

    I was *just* about to start a thread about insurance, because I figured some of the SN moms would totally understand.  We've had cobra for 16 months (DH lost his job 10 days after #3 was born).  It's a hard enough fight to get him his growth hormone each month and now the plan administrator changed pharmacy administrators!  So I've spent 2 weeks, hours each day trying to figure out how to just get our two vials of growth hormone sent. 

    Yes, insurance is a blessing and a curse all sent to make me tear my hair out.  

     

    I hope that you can find closer doctors or work something out with the current ones.  I definitely know that stress.  GL! :)

    We are going to have to cobra until May 1st or June 1st (i'm waiting from their HR dept because one person said "training period" doesn't count towards 90 days of coverage.  I was thinking about a short term policy but Morgan's immune testing is so expensive and if they are starting infusions next month that will be ridiculous.  So 3 or 4 months of paying cobra is going to suck, I can't imagine how you are doing it.  

    I think i'm going to be on the phone a lot on Monday.  Sigh. 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • imagelauraandlee:

    I was *just* about to start a thread about insurance, because I figured some of the SN moms would totally understand.  We've had cobra for 16 months (DH lost his job 10 days after #3 was born).  It's a hard enough fight to get him his growth hormone each month and now the plan administrator changed pharmacy administrators!  So I've spent 2 weeks, hours each day trying to figure out how to just get our two vials of growth hormone sent. 

    Not sure if this would work for you or not, but when DD first came home to us out of foster care, she was on a growth hormone. Her meds (genotropin) were coming from Pfizer as part of an out-reach organization. I can't remember the name of the organization and can't seem to pull anything up in google, but maybe you could contact them (or your drug manufacturer if its different) to see if they have something similar? The brochure talked about how they felt that it was really important for everyone who needed meds to be able to receive them or something like that. I know this isn't your exact same situation, but it seems like something worth looking into if you become at risk of not getting the meds your LO needs. Good luck. 

    And realistic- blah! Aside from how annoying it is to drive any further than you have to in the traffic around here--are you going to have to switch all of the girls doctors? Or will you end up going back to old doctors? So frustrating that our children who are medically complex would have to switch to even ONE extra doctor with as many as we go to already and having to re-explain stories and things (information and time) getting lost in the process. *hugs* 

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  • imageMummyGruetzie:
    imagelauraandlee:

    I was *just* about to start a thread about insurance, because I figured some of the SN moms would totally understand.  We've had cobra for 16 months (DH lost his job 10 days after #3 was born).  It's a hard enough fight to get him his growth hormone each month and now the plan administrator changed pharmacy administrators!  So I've spent 2 weeks, hours each day trying to figure out how to just get our two vials of growth hormone sent. 

    Not sure if this would work for you or not, but when DD first came home to us out of foster care, she was on a growth hormone. Her meds (genotropin) were coming from Pfizer as part of an out-reach organization. I can't remember the name of the organization and can't seem to pull anything up in google, but maybe you could contact them (or your drug manufacturer if its different) to see if they have something similar? The brochure talked about how they felt that it was really important for everyone who needed meds to be able to receive them or something like that. I know this isn't your exact same situation, but it seems like something worth looking into if you become at risk of not getting the meds your LO needs. Good luck. 

    And realistic- blah! Aside from how annoying it is to drive any further than you have to in the traffic around here--are you going to have to switch all of the girls doctors? Or will you end up going back to old doctors? So frustrating that our children who are medically complex would have to switch to even ONE extra doctor with as many as we go to already and having to re-explain stories and things (information and time) getting lost in the process. *hugs* 

    I called ALL of their doctor's office's today (well except a couple like ENT and Asthma/Allergy because we only see those like once a year anyway) but...the best part is that, ALL OF THEIR DOCTOR'S TAKE IT!!!

    My doctor's don't (local Gi, Surgeon, gyno etc) but I don't even care.  They said the whole VCU health system and UVA  take it and it was listed on CNMC in DC's website so their neuro should be good as well.

    I cannot say how relieved I am, I was literally flipping out!

    I do not know if we will need referrals or not with the insurance and I wish I had a better idea of if Morgan is going to get the medicaid waiver or not.  That would kind of change my mind on doing a short term policy vs. cobra.  

    ETA: just realized I put $4000 as our OOP max, it's $4000/person $8000/family now so a $6000 difference/year is going to be incredible!

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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