Who Am I?

Ranting, venting, and a long story

April 4, 2007

In order for you to understand the extent of my frustration ( I know, did you ask to hear about it? lol) I'm going to start back about 3 1/2 years.

At about 8 months J got his first sinus infection.  Up to that point he'd been relatively healthy.  That was in August of 2003.  From August to Dec of 2003 he had sinus infection after sinus infection and was on antibiotics for pretty much the entire time. During this time he was also diagnosed with Reactive Airway disease (baby asthma kind of).  We tried different antibiotics, different lengths of time, different meds to dry him up.  Sometime in Dec of 2003 we were sent to an ENT-his ped really couldn't do much else. The first ENT was an idiot who put him on another 21 day spread of antibiotics and told us if he got sick between then and our next visit to him, to call the ped.  He got sick, the ped was ticked that he'd told us to call her and sent us to another ENT.  This one continued the antibiotics..and after 2 more sinus infections in 2 months, scheduled my then 14 month old son to have his adenoids removed.  They did so in Feb of 2004.  We did well for about 6-8 months.  In the fall of 2004 he got sick again..this time with his first ever ear infection-it responded to antibiotics and we moved on.  Then over the winter the sinus infections hit again.  and again and again and again and again.  In the last 2 years, since Feb of 2005 he has been on antibiotics almost every month.  Not quite..but almost.  In June of 2006, after doing this over and over again I finally convinced our ped, who believed it was all allergy related, to send him for allergy testing.  Which she did. 

Those test results..all of them, were negative.  They tested him for all the normal stuff and a few things they wouldn't normally test for...food and pets and such..at least at his age they dont' normally check it. ALL OF IT CAME BACK COMPLETELY NEGATIVE!  So then I asked..if he's not allergic to anything why is he having these problems.  There statement was this-either he's allergic to something they can't test for yet because of his age OR he just has very small nasal passages, he gets a cold and because his passages are so small, he ends up with a sinus infection.  Our goal then being to keep his nasal passages clear, be proactive when he starts to get sick and keep any possible allergies under control.

Yeah, that worked for a while.  For about 4 months we seemed to be doing ok.  Then in September of 2006, even with 2 allergy meds being taken, he got a sinus infection.  At that point things started getting nasty within Medicaid, the kid's insurance provider (state run).  My husband lost his job and his insurance making medicaid the primary insurance for my children.  I contacted our caseworker immediately to advise of this.  2 weeks later my son, 3 at the time, came down with a sinus infection. My husband took him to see Dr. D, his allergist, and he was prescribed some medications. 

When we went to fill the medications we were told medicaid denied them because we had a primary insurance.  The changes in the computer had not filtered down to Molina (provider) from Medicaid.  Finally 3 or 4 phone calls and 2 days later to Molina and the Hoosier healthwise helpline I finally got someone who pushed through an emergency authorization for 10 days..so we could get the antibiotics for our son. Then Molina refused to pay for the medicine because it was not a tier 1 med.  Finally the next day they and the dr's office came to an agmt and we got meds.  Approx a week later, I tried to fill a different medication and again was told we had a primary insurance and they wouldn't pay.  At that point I and the pharmacist at the local drugstore contacted Molina to try to straighten out the mess.  An entire afternoon of phone calls and we were able to get the meds.  A week later, trying to schedule a ride to a dentist appointment for my kids, because our van was down, I was told Molina wasn't even our insurance company..Caresource was..(Molina was infact our insurance company and it was straightened out.)

In late Dec I went to refill my sons allergy medicines and was told by the pharmacist that Molina was refusing to pay for one med, had only paid for a few days worth of another because as of Jan 1 the would no longer be in existence and didn't want to be billed.  I also received a letter in the mail at this time, telling me that because I hadn’t chosen a dr for my kids one had been chosen for them. Now they had been with the same dr for 4 years.  I had received info about the changeover Jan 1 but no where did it say we needed to choose to say with our dr. The dr. they chose for us was 90 minutes away in Worthington. When I tried to get information (the first time I called the hoosier healthwise helpline about this) I was told it would be no problem, the dr's office they'd been at would just need to do a full panel add on.  The dr's office informed me that medicaid over filled their office and they werne't DOING full panel add ons.  So back I went.  Between the prescriptions and dr's office issues, about 4 phone calls to hoosier healthwise and getting attitude and different answers every time...I called the governor's office who put me in touch with a lady within the state medicaid office.  With her help, I was able to get my sons medicines taken care of and get information so that we could choose a dr closer to home..it would take 2 months for it to be effective but it was the best she could do.  I accepted it.  In Feb when I still hadn't received anything from mdwise about the new dr, I called hoosier healthwise back.  They advised me that for whatever reason it was still pending and they pushed it through.

In Feb I refilled my children's allergy and asthma meds with no problem.  The provider was anthem.  At the begining of March we were transferred to Dr. E's care.  The dr I'd chose back in Dec...She is a md wise provider.  I went to try to refill meds and they were all denied. I called the allergist, who could do nothing because we hadn't seen the new ped and had to be referred back to the allergist.  I made an appt and my son was seen on March 6.  Since then both dr's offices have been trying to get prior authorizations on my son's (and now Dr. E's office is working on my daughter's as well). They are getting the run around.  We've been denied stating they've not been on preferred medications-though they both have.  Dr. D's office has been giving me samples to get him through. .  I've finally contacted the governor's office for help again...and they are supposedly working on it and are calling me back. 

I have jumped through every hoop I could find.  I've contacted each insurance company, worked with dr's offices, and tried medications when it's been necessary even with reservation.  I've contacted hoosier healthwise and worked with the governor's office to try to fix the issue (most recently spoke to a different lady this time). I have copies of pharmacy records showing they've been on the particular meds in question, have made it known I have them and have offered to fax them.  I've called asking for what else I can do. When I asked this of the customer service person at mdwise I was told to let the dr's office handle it and when they had, they would call me.  I did that.  A month ago. 

This afternoon I filled in a form at the local news station Call 6 for help is the name of it.  Some of what is above is in that form.  It also asks what you want them to do to help resolve the issue...this was my response "I'm not sure what you can do.  Part of this is not about us.  While I would love help in getting my sons medications-getting someone to listen to me and tell me what I need to do to make this happen-I am willing to put forth every effort to do it.  The biggest issue here is a lack of communication between medicaid with it's providers and among those providers.  We are FAR from the only family facing these issues.  My son's allergist/asthma dr has several people that are dealing with the same issue and when I go into the pharmacy I also hear I am not alone in this battle.  Medicaid and it's providers need to be held accountable.  Just because we are poor does not mean we don't deserve respect and dignity.  We are trying to take care of our families the best we can.  I don't like having to rely on the government to do so, but financially at this time, to take care of our children, I have to do so.  I understand this is a service we get without having to pay for..but I have worked and my tax dollars went into this as much as anyone else's.  I know all insurance companies have rules and regulations that need to be followed.  I realize many have policies on medications that must be observed.  But the lack of communcation, assistance, and general compassion that I have dealt with over the last 6 months has been appalling.  Help me be a voice for those who have none.  My children, your children, the elderly.  Those who have no choice but to sit and wait on the wheels of beauracracy."  I'm fed up.  I'm done fighting with them.  On top of that..

The lab work they ran last week on J...most of it came back yesterday.  It's normal. They were checking for an immuno deficiency.  His levels are all within normal ranges..his IGEis low at 4.2...but that one is supposed to be..what is it..an allergy level in the blood..the lower it is, the less allergy issue there is...basically,the way I understand it..ok WTF...he's on 3 allergy meds...but has no allergies. Yet if we go off the meds he gets worse,stuffy and can't breath..and even on the meds he gets sick. So are they doing ANY good.  HECK if I know. 

There is one test we are waiting on..it's the pneumoccal titer.  And it very well COULD be responsible for the recurrent sinus infections.  His tetnus titer (from his immunizations) was also low.  If the first one IS low, they will booster both at the same time.  But the allergist, who has been very proactive with this, has said if it all comes back negative, we just ASSUME he will outgrow it.  Ok, pardon me for one second..but BULLSHIT.

I'm not comfortable with that..I'm really not.  IF he's not allergic to anything and he's not got an immunodeficiency and his white count and cbc are fine (which they are) dont' we need to figure out what's going on anyway?  I mean...don't we like, need to go back to the ENT...do a scan, a culture, see if his sinuses are full?  Culture it and find out if it's viral, bacterial, whatever?  Am I the only one that sees this?  WAIT AND LET HIM OUTGROW WHAT?  I'm stressed, confused and concerned.  The ped is more than willing to follow the allergist on this one.  It's not that I want to do test after test..and I don't want to put him through any more than absolutely necessary...but this last sinus infection he ran a temp of 106, until 2 days ago, he was taking 5 meds in the morning, 3 in the afternoon, and 7 at night.  We are now down to 2 in the morning, 2 in the afternoon and 4 or 5 at night, depending on whether he's been complaining of his head hurting.  To me this is FAR too much for one little boy.  And the antibiotics they have to use are strong..Biaxin and Omnicef are the drugs of choice...again..while I want to get rid of the infection...we are using them over and over..what happens when they no longer work...sit and WAIT for him to outgrow it...it's possible the sinus infections are viral-which means antibiotics don't even work!  It's possible it's a bacterial strain that is resistent to those meds..in which case he needs a different one.  It's possible that his sinuses are just too full and need to be cleaned out...none of this can be found out unless they go in to his sinus cavities, look around and culture what they find. Not a comfortable thing...not something I would want to put him through if I didn't have to...but something that seems like it needs to be done before we just sit on our hands (which is what I feel like i"ve been doing anyway)

This last bout has really kicked me in the pants.  We had been on an antibiotic that finished at the end of Feb.  Less than a month later, without symptoms he spiked a high temp.  AFTER the temp, we saw symptoms...This is scary for me...and it makes me wonder if the allergy meds are masking issues, not taking care of them.  Any thoughts on any of this???

I know he is in God's hands..and for the most part he's a pretty happy go lucky kid.  Until he's running a temp of 104 and miserable...you'd generally not even know he's sick...(I do, I'm mom...and I quickly notice the green crud and the complaining of his teeth, cheeks and eyes hurting (sinus pressure) but the general population would assume the runny nose is just a cold or allergies  and he's pretty easy to get along with.  But I'm very frustrated, fried and ready to cry. 

I plan on talking to the allergist about all the questions and things I voiced above when he calls with the results of the final lab...and I keep trying not to stress over the rest until we have that result...but I can't help it and I'm at a loss as to what to do if they refuse to send him back to the ENT....say some prayers for me..and for my little man...who is definitely on the mend and is almost back to his silly self.  There are still times you can tell he doesn't feel good.  But for the most part he's doing ok. 

If you made it this far, I thank you for reading.  If you have a thought..even a disagreeing one...please pass it on to me...I just dont know what to do anymore...

I'm grateful for friends!

hugs
Vicky