Latest on Bed & Observation....

We rescheduled Camerans preschool Observation for this Wednesday. So I will update about that later this week.

As far as the bed goes I feel like we are making progress but not before I lost it with the Medical Company. I spent all day Friday on the phone with them and insurance trying to get to the bottom of this. At first they told me they cant even order the bed without an approval from the insurance then I have another person telling me they can. I felt like I was getting no where. Then to top it off the City calls me and tells me that they(MC) said I had signed a piece of paper stating that if the insurance didn't cover the bed I would pay for it. I had no memory of signing any papers from them. So I requested it to be faxed. Well there it was me in dis-belief my signature at the bottom of the page with a guy witness. Hummmm I thought the only papers I could think of that I signed that had anything to do with the bed was the delivery papers. Gotcha!!!!! Sneaky rats! I feel like we where misled here I was signing for a delivery and in all actuality I was signing something that I thought was already paid for but would later be charged for!
So first thing this morning I got back on the phone with Insurance again, where I confronted them about their approval letter. As states here: 1 Canopy bed being approved for an order between 1/17/07 to 3/31/07 but states at the bottom that it does not guarantee payment! WHAT? I said how can you approve the bed and let them order it but not pay for it...I'm confused! The woman says I don't know I see where they approved it and then says oh the note here states they needed the Letter of Medical Necessity(which they got). Then she says wait they cant even give approval if they don't see the letter of necessity so they had to have seen it for approval! THANK YOU......awwww I can breath now! My goodness people come on give me a break here! Well she has sent this claim off for an Urgent Review so 15 days.
In the mean time I sent our Neuro an e-mail requesting he call the insurance physician for us and to help out any way possible. He is so wonderful because not long after my e-mail I already had one back from him letting me know he had just spoke with them! He said they approved! So we will see what happens next.....Fingers crossed!

Missed the Observation

Well all this anxiety worked up on the school meeting for Cami and then 4:30 Thursday morning Caleb wakes up with a temp of 102.9 an no other symptoms besides him telling me he had a brain ache...I said a head ache he said "No not my head my brain"....LOL he is so funny. Then come 7:30 he is on the role with a virus that just wiped the little man out! He couldn't keep anything down including meds for the temperature. He was so pale and cried from the belly aches. I called his Pediatrician and they called him some Phenegran that you rub on your wrist to help with his nausea and it did the trick. Thank goodness for that stuff. He ran temp up till 4:30 yesterday so he had to stay home again today! He is back to his old self today still not eating very good though but he will come around. But out of all days it had to be yesterday all these set backs keeps my nerves so worked up! I've sent an e-mail in with them requesting to observe on Monday! SO fingers crossed that no one else comes down with Calebs bug or I'm liable to go crazy of the unknown so close to her transition....Not enough time to prepare! Acckkkkkk

Update on bed

The latest is just as confusing to when we started. Basically what it boils down to is the he said she said game. The Medical company did get an approval from the insurance, they cant order the bed without it. BUT it was a verbal not a letter of approval so the company should have never ordered the bed! But the insurance should have never said they approved it and then deny it. Then then insurance says they don't think it is being used for "Medical Purposes" they think when she has seizures she goes paralyzed.....What? Anyhow the insurance said they requested medical files on Cameran which they never received guess the Medical Company overlooked that! Also the MC(medical company) is dealing with a middle man who they relay stuff to and then they got to our insurance...Its all kinds of confusing. So now the city is looking into the "Middle Man".
Our insurance says we can have our Neuro call and talk with their physician to maybe work this out...MAYBE! BUT a biggy is that currently Cami isn't having seizures.....Will the insurance be able to overlook that...probably not even though the bed was for last year when she was having them.

We got a bill from the MC yesterday for the bed. If the call to the Neuro doesn't work I guess they will just have to come and get the bed. It just feels so overwhelming right now. Don't really know what to do. I want to fight them on this and file an appeal but I just don't have it in me right now. I have enough to deal with Cami soon starting school. Then what happens if this takes a long time and we don't a make a payment it makes our credit go bad. Or if we do make payments till its settled and then we have to fight for the reimbursement of the payments. UGgghhhhhh!

Had a bad day

Sorry about not posting in a while but last week was a little overwhelming for me. Not only am I try to build myself up for Camis transitioning into preschool but we got a phone call from someone who we thought we would never hear from again. Who would that be you might ask? Well it would be a Medical supply company that we got Camerans Pediatric bed through last year. When I saw the caller I.D. I was thinking why in the world they would be calling me. This is when it got bad! Turns out they said they have been fighting our insurance for a year on approving the bed. Mind you they are calling me Jan. 17th the exact day last year that I got an approval from our insurance. Good feeling gone, jaw drop! She continues to say if you cant get your insurance to cove it we will have to bill you.....Are you ready......$5,345.00.....Yes you read right!

In the back of my mind I'm wondering why in the world she waited a year to call and tell me this and then also why in the world they would bring a bed to us let us keep it for a year and it had not been approved! Oh she says sometimes insurance say they approve stuff but they actually don't.......What? I'm now confused!

SO I hang up with her call my husband tell him the situation and he told me to call them back and tell them they can just come pick it up because he isn't paying $6,000.00 for a bed! Then he said no go ahead and call the insurance. So I get on the phone with them and they try to pretend ignorant to the whole situation. Asking me if I still have the approval number they gave me last year for the bed. I kindly said that was a year ago...Then a light came on and I asked them to wait one minute while I pulled out a notebook. Little did they know that I have always kept notebooks of Camerans use to be seizures that where dated with every day notes. Luckily there it was written Jan. 17th of last year and who I even spoke to! Imagine this they where like oh now I see it! Come on people give me a break here.
Well then the woman tells me well I see where we approved it and I also see where we denied it.....What? I didn't even know they could do that! She said we needed a letter of medical necessity which we did from our Neurologist the list just goes on! Anyhow she said they would have to send all this info off to another dept and it could take up to 30 days and to call back next week.
Well that night we decided to pull our claims up off the Internet and there it sat but there were only 2 claims found on the bed. Now remind you the woman I talked with from the Medical supply said they had been fighting them all year for an approval. Well let me tell you why she never called us any earlier and that's because the dates on these claims were for Dec of 07 yes just last month and then 1 filed Jan. 16th of this year the day before the company called me!!!! Sounds to me like our file got lost. Needless to say we have involved the city(Jason works for the city)and they are looking into it, she told us they cant approve something and then deny it..Just doesn't make sense! What a stressful week.




On top of all that drama, Cami will be starting S.N. Preschool in 2 weeks. This is going to be extremely hard on me. I have cried many times of thinking that she will be spending her days at school and not with me. It just doesn't seem fair sometimes, here I got to keep Caleb at home with me till he started K-garten and Cami just feels like she is being ripped from me. Typically when your child starts school you get to walk them in, spend a little time with them, drop by if you like to check in. Well at this school its the opposite! They want to cut it dry, no dropping in, Basically NO PARENTS ALLOWED! Is the way I feel, I understand that its probably better for the kids BUT its so hard on the parents not knowing what they are doing. Its a totally different feeling that I got with Caleb yeah I worry of the everyday dangers of school for him BUT with Cami different surroundings is a danger to her! We know she is safe here at home. I want this badly for her but I cant get that warm gooey feeling about it. Is it because she cant talk or communicate with me if something happens? Is it that I know that there is no way they can keep an eye on her at all times? Or is it that I feel like a failure because I cant do these things on my own with her. Why cant I teach her these things, why cant I be more firm with her! I already know the answer. I want her to be free to do what she wants I mean after all 2.5 years of her life she sat doped up on meds and still had seizures everyday. So I want her to be happy at all times I want her to explore! Whats more upsetting to me is that I know she is gonna cry why she is there because they are going to make her sit and learn more of a structured life. Which will be great but just knowing what she will go through to get there tears me to pieces and not being able to be there to comfort her. So yes I see why they try to push the parents out for that reason but I just wished they would give me one day with her to watch her routine! Reassuring me that it will be ok :(
We do have an Observation tomorrow morning with them so we will see how it goes! So please please keep us in your thoughts!

Trouble Sleeping.....

What a week....and by that I mean of NO sleep! Camerans no sleep is really starting to wear me down, I feel like my body is ready to hit the floor. I have no idea where I find the energy to stay up just a little bit longer.




Last Thursday night was the worst night by far, I don't believe she slept longer than 10 minutes at a time. She was all over the bed flipping and whining then sit up scream at us then we would fight with her to get her to go back to sleep. And imagine this, come 6:30 she was running the floors out and my feet where dragging. How in the world does she keep going like this? You might be saying to yourself well she must get a great nap and that too would be a NO! Man do I wish. If I want her to sleep good I have to hold her and the minute I move she pops up. Or if I just get her down the phone rings waking her and forget that nap she has just now had the best 5 minute cat nap and she is good to go!

This sleeping behavior is only getting worse so I find myself constantly counting down the days till she can have a sleep study done. And I worry of that because any one who has kids know how unpredictable they are. You know, like taking the kids to the Dentist and say oh I just know they are going to scream and then your normally screaming pitching fit child will lay there like a perfect angel and make us look like total dummies! Well I just pray this is not how it goes but our luck would be the night of the study she would have the best sleep of her life!

The earliest they could get us in is mid March and mind you this is just for the Evaluation type deal Dr talking with us about her issues and then they will set up her study which usually takes 2-3 weeks he says! So we are talking another 2.5 months with little to no sleep! I often wonder if she sleeps with her eyes open because for the life of me I just don't know where she gets her energy from....think I need to borrow some!

Now for some more bad news and that is we think she is having seizures in her sleep again. I mentioned this before however I believe its more so true now! The night she was tossing and turning so bad(last Thursday) she did 1 stiffing of her arms again while they raised up and she held it there for about 15-20 seconds....Just like her old ones she did in her sleep. Before we where seeing lots of flinching in her sleep like she also use to do( those kinds read as seizures on her EEG back in Spring last year). I did mention these to her Neuro so we are moving her med around again to see if it helps. If not we might have to add back that weaned off pill or another med. She doesn't do that movement every night, So far I have probably seen 3 of those real stiff ones but we have seen lots of the flinching in her sleep specially when she first falls to sleep. Yeah people flinch in their sleep but when she use to do this when she had the seizures and then became seizure free and we haven't seen any of those for 6 months and then in November we start seeing her do it again it raises a flag. So while we wait for the sleep study we are gonna try to video tape one night of her sleep to see what it shows.

I had voiced a concern last week to her Neuro about how odd it is for her to have theses "movements" only in her sleep and not during the day and his response was not so odd! He said actually its not so uncommon for a child who's seizures come from the frontal lobes to have them more in their sleep. Which in Camerans case would be so true, specially in the last few months of her seizures seemed like she had more in her sleep than during the day.

I took Cameran to the Peditrican Friday to make sure she didn't have anything else going on to cause her to stay awake. Shes had a cough off and on since Christmas but it started sounding kind of croupy again with runny nose. But she came out with just having a head cold. Well go figure that today it looks worse we went though 2 boxes of tissues on her nasty nose and she looks like she doesn't feel good sounds like it too. SO I guess if it gets even worse or comes with a temp we will be back to the Dr.s again! Minus well give them straight access to our bank account.....LOL! Poor gal her little face is so raw from even the lotion tissues. I gave her some Benadryl to help clear it out and maybe help with her sleep as well!

Well that's it for tonight I better head off to bed before she wakes before my head hits the pillow!
Oh one more thing....I did find out about more about her MRI. He answered our questions we had about the Lesion in her Cerebellum. It has NOT grown in size nor has it decreased! So I asked of its size and he said it is smaller than a centimeter. Still unclear of why its their, from birth, seizure????

Cami's MRI and Blood Work results...

Well yesterday went very well she did end up getting the MRI but I have to say leading up to it she was not happy. She did lots of screaming because she was hungry, tired and wanted to run around by herself. So while we waited for her turn back they gave her some nasal spray stuff to relax her and what is suppose to take 5-10 minutes to work took 25 minutes on her, the nurses couldnt believe the fight she was putting up. Little Stinker, they wouldnt even attempt an IV till we got her back in the MRI room. THey had me sit on the MRI Machine table holding her, by this time she was lots more calm, soon as they put that IV in we heard half a cry and she was out like a light..man that stuff is quick! Her scan lasted about 25 minutes then we got to go back and see her again, we couldnt touch her right off cause they wanted her to sleep it off so she wouldnt wake up screaming mad. So after waking she did really well but she ripped off all the stuff they had attatched to her so we gave her some of her fav cereal and some drink to calm her and they watched her for about 15 minutes and then we where on our way home. Simple enough!
I was shocked to have woke this morning and her Neurologist had already e-mailed me her results they are just all so wonderful!

So here is his e-mail with the results:


Results of the tests.

The Depakote level is 86(normal 50-100) so continuing dosing 125AM and 250PM. This might help with sleep and Dr C is setting appt for you in sleep clinic.

MRI- shows myelination is normal-(normal complete myelination/No significant change or new abnormality).

***So just wait for the sleep appt with DR C and they will likely set up overnight sleep study that may be able to capture some events to determine if these are seizures and to help with sleep problems w/ Cameran.

If we don't capture any events and she continues to have the stiffening and raising of the arms(the thrashing about I'm not so worried about) then we can admit her for a few days to the EMU(Epilepsy monitoring unit) to try and capture some events to see if these are seizures.

Let me know when you complete the sleep study and if you need anytyhing else.

rw


The only thing her Neuro recommended was switiching her meds around giving her 2 pills in the p.m. and 1 in the a.m. we were doing the opposite.

Thank you all for thinking of us during this time, as most know it can be so stressful and it helps knowing you have such good family and friends there lending support.

Karen