Wednesday, March 14, 2012

The Quest for Amphotericin, or, United Healthcare Doesn't Care if My Child Can Pee

You would think getting a prescription would be easy. Someone wants my money, right?  Not when the prescription you want it Amphotericin and your insurance company is United Healthcare.

Hayden has had minor trouble urinating in the past, but two weeks ago Monday before school he told me "the pee is stuck."  I was really scared for him, and was going to take him straight to the doctor, but he ended up going when we got to daycare.  As soon as I dropped him off at daycare I called his DAN doctor (who wasn't open yet.)

I was working in two different schools that day, neither with cell reception, so I had to give out the number for the land lines of the school rooms I was in.

Call number 1:  I gave them the phone number for the science office at Perry High School.  On the message I told them I needed to fill the script for Amphotericin, but was there anything else I could do in the meantime to help him?

[The doctor had told me about Amphotericin before, but asked me to fill it with a compounding pharmacy called Lee Silsby.  A few months ago I filled Hayden's B12 script through Lee Silsby and my insurance denied the claim because they were not a participating pharmacy.  So I knew I needed to call United Healthcare and find out what pharmacy they did approve of, but hadn't done so yet because it hadn't made the priority list.]

Call number 2:  As I hang up the science teacher says, "I don't think the number you just gave can receive outside calls." We test it.  It can't.  I called the nurse voice mail back and gave them a different teacher's number.

Call 3:  After lunch I went to work at a different school, Perry Academy, and called to give them that  number.  Since this was the third call, I didn't leave Hayden's birth date, just my new work number and my cell.

4. I received a voicemail on my cell from the nurse at 5 pm saying that they had received my last message (someone had deleted the first two) and therefore I needed to call back with Hayden's birthdate.

Since I knew I needed to call United Healthcare anyway, and it was 5 pm and they were closed, I decided to wait until Tuesday, call United Healthcare and get their answer about the compounding pharmacy, and then call the doctor back.

5.  The doctor's nurse called my cell in the morning because they were worried that I hadn't called back. I told them that Dr. Hulseman had suggested at his last appointment that he take amphotericin.  They said they would ask the doctor and get back with me.

6. I called the number on the back of my insurance card and told them I needed to know what compounding pharmacy was covered under insurance. They said they needed the name of the script in order to give me a pharmacy name.  I gave them the word "emphaterasin."  "It's not on our list."  What does that mean?  "Well, that means it's not a specialty prescription. Have you tried calling Walgreens?"  Really?  Why would my doctor tell me to go to all this trouble if I could just go through Walgreens?!?  But I said, Ok, I'll call Walgreens.

7. The doctor's nurse called around 2.  They had called in a script to Lee Silsby pharmacy for amphotericin. (I had been spelling it wrong.)  I told her that insurance had told me to try Walgreens.  She said "No, it does need to be compounded.  Ask them if they take another specialty compounding pharmacy, like Nora, Apothecary, or Dr. Aziz."  Right. Will do.  "You also need to give Hayden 1/4 tsp of baking soda in a tsp of water once or twice a day. Stop his calcium supplement until his urination improves.  Call us if he gets worse, and call us in a week regardless."  [Side note, I made poor Hayden eat the baking soda.  If you ever want to eat something really terrible, try baking soda. Poor guy.]

8. So, the next day, I called the number on the back of my insurance card again.  They told me I needed to call their presciption service, Medco.

9. Called Medco.  They told me I needed to call their Specialty Scripts service, because it must be a specialty script.

10. Called the specialty scripts number. They told me, again, to call Walgreens because it still wasn't on their list, even with the correct spelling.

11.  Called the Walgreens on Southport Road.  "We don't compound here. You need to call this number to find out which Walgreens in your area does compounding. Their number is  1 866....

12. Called 1 866...  They said the Walgreens on 31 does compounding, so I should call them.

13.  Called Walgreens on 31.  "We don't do compounding."  Um... I was given this number and told that you did.  "Let me transfer you to pharmacy."  Yes, please do that.  "Pharmacy." Yes, I need a compounded script and was told to call you. "We don't do complicated compounding.  What script is it?" Amphotericin. "Hmm. I've never heard of that. You'd better call our compounding center on Raymond Street. They open at 9."  (It was 8 am).

14. Waited until 9, called Raymond Street Compounding Center.  "I don't know if we can fill that or not.  We need your doctor's office to fax the script to us at this number so we can look at it."  Geez!

15. Called doctor's office back. The nurse was not happy [with my insurance].  "You need to call your insurance back and tell them that you can't get it compounded at Walgreens unless they can guarantee that it is gluten-free.  Tell them he needs it compounded by a specialty pharmacy that can guarantee the script is gluten-free because of ICD9 code 112.85 candidal interitis."  Got it.

16.  Called United compounding pharmacy back. They told me to call the number on the back of my card, not the compounding pharmacy. You need the regular United Healthcare number.

17. Called number on back of card. "Have you tried Walgreens?  You probably need to call Medco scripts again."

Now, I'm the kind of person who tries to be polite on the phone because I know it's not going to help my cause to piss anyone off. But at this point, I flipped.

"Listen.  I have called those numbers, and I have called your specialty pharmacy, and I have called Medco.  And I have called Walgreens, who told me to call another Walgreens, who told me to call another Walgreens, who told me they don't even know what this script is.  But the specialty pharmacy Lee Silsby could have filled this prescription for my son on Monday.  My son needs this prescription because he can't pee. And I need to figure out how to get it for him. And it needs to be gluten free because of ICD9 code 112.85.  But apparently you won't pay for me to take it to Lee Silsby, so I need to know who you will pay for, and I need to know today." (At this point it was Thursday.)

The lady said, "well, you could just fill it through them and submit it to us afterward."  Yes, last time I did that for his B12 nasal spray and you denied the claim, and it was for $75. This one is $90.   "If it is denied you could file an appeal."  Alright, fine.  I'll just do that. [Silence.]  What is the address for appeals?  "PO Box 30432...."  Ok, I will do that. Thank you. {click}

18.  Called Lee Silsby. They could fill the script today. "Do you want liquid or pill?" I asked how big the pill was, knowing that the liquid probably tastes terrible, so if the pill was small enough it would be easier. "I don't know, but I can find out."  Can you please just fill it!  If you find out the pill is large, just switch the order to liquid, but don't call me back! I just want to get this filled! "Ok. But, since it has to ship cold, and won't ship until tomorrow, which is Friday, it would have to wait and ship Monday.  So he should get it Wednesday."  Sigh.  Ok.

"We'll include a paper for your insurance."  Last time they denied it.  "Yes, you need to make a copy of it before mailing, because they will try to deny it and say the form is not filled out correctly.  If you have a copy of the form, you can resubmit it."  In other words, this happens a lot. Not that I'm surprised, as this is not my first run with insurance, but the insanity of the system infuriates me.

So, the following Wednesday the medicine arrived, and Hayden has been taking it since, twice a day.  Within a few days I could tell he no longer had to push to urinate. (The doctor had originally told me this was a result of too many oxylates in his diet, forming crystals in his urinary tract.)  He told me after  maybe three days, when I asked, that it wasn't stuck. "Nope, it's not stuck!  And it doesn't hurt in my diaper anymore!"  So at least this has all been worth it, and we didn't have to go to the emergency room.

And, I just want to say how much I appreciated the kind people at Lee Silsby pharmacy and Dr. Hulseman's office. The doctor's office called me a week later to see how he was doing when they hadn't heard back. I thought that was really nice.

Coming up in my next blog post:  Rylie's Poo Adventures  or  What nearly drove Sheila over the edge

Sunday, March 11, 2012

What Autism Looks Like: Repetitive Speech and Motions

The past few weeks I've been trying to catch Hayden in the act when he displays behaviors typical to Autism, and video tape them.  

This video is an example of repetitive motions. In the Autism world, this is called Stimming, originally named for the idea that the child is self-stimulating, or entertaining himself. It is also often a self-soothing behavior, meaning that he is calming himself down.  Hayden usually displays stimming when under stress, at the end of the day, or when he has nutritional imbalances going on. He used to stim all day;  now it is off and on during the day, some days not at all.  

Stimming is often exhibited by shaking the hands back and forth, spinning in circles, or flapping the hands.  This is how Hayden usually stims, by shaking a toy back and forth.  He used to do this for hours.  Now you can see that it is in short bursts.

This next video is an example of repetitive speech.  Similar to stimming, the behavior gets in a cycle and usually won't stop without intervention.  You can see that when I interrupt him, he responds, but it did take some time to get him to the point where he would respond to me.  This has been accomplished by his therapists at Cornerstone through ABA (Applied Behavior Analysis).  They made sure to require him to respond when spoken to, rather than ignoring the person speaking to him and continuing in his own world.  Of course this didn't happen over night but was one of Hayden's early goals at the center.  

In my opinion, a little bit of stimming is ok because it's good for kids to self-soothe.  But when the child gets into a spiral of behavior that they can't get out of, that's not good.  There are different opinions about stopping Autistic children from stimming.  I think as they get closer to introduction to elementary school, they need to be taught more socially appropriate ways of self-soothing so they're not bullied.  At Cornerstone they've been teaching Hayden several of these, such as talking himself through his emotions, or asking to take a break when he's stressed. I also think that stopping the child after a minute of stimming is a good thing, to teach him that there is more to the world than observing the spinning of his hand.  When he is introduced to interesting things going on around him, he is able to see that he can interact with his environment and his peers.  The world contains more than just him.

Too much stimming is a sign for me that something is off with Hayden.  When I see a lot of stimming I think about what stressors he may be experiencing this week, or what changes may be happening with his diet. Often if I feel he's had a stressful day, I will squish his arms or body to help him calm down.

Why am I posting these videos?
Several reasons.

I hope that they will help educate people about what Autism is and isn't.
I hope they will help parents realize that their child may need to be diagnosed for Autism.
I hope they will help parents already dealing with Autism learn ways to cope with its symptoms.
I hope that some day Hayden will be recovered from Autism, and these videos will be evidence of how he once acted, and that Autism is treatable.

Tuesday, March 6, 2012

Rylie's Trip to Riley

Rylie had an appointment yesterday at Riley Developmental Peds.  It was kind of awkward going to Riley Hospital and saying your daughter is named Rylie.  She kept trying to wander off while I was trying to talk with the intake person or fill out forms, and I felt kinda silly saying "Rylie, come here please! Rylie...  Rylie!"   They said she was a beautiful girl and her height is good so she will just be skinny, which is ok.  They said it was good to check, since she was close to the cut-off range where it would be "too skinny". If she was just a little smaller (4 percentile points) they would be concerned, but for now I just need to work on getting her more calories. This is the answer I was hoping for but didn't expect to be lucky enough to get. Her percentile for weight has fallen for several months now, and I was afraid we would need to test for her thyroid or other physical issues.  It was also a bit of a wake-up call to travel to Riley hospital. I've been so worried about the things my kids can't do, that I've forgotten all they can do.  That's not entirely true, as I know my kids are both beautiful and wonderful and awesome, but I do probably worry too much.  Going to Riley and seeing kids with CP and cancer made me grateful once again for my two beautiful children and all that they can do, and for the fact that God gave me 1. children who are curable and 2. the means to cure them (an education, the Internet, TACA, Dr. Hulseman, a dietitian, etc.)  If I lived in another country, these things might not be available to me. I am so grateful for the resources available to me, and the opportunity to share what I've learned with others.

The developmental pediatrician was great:  nice, not condescending, reassuring, willing to listen, willing to let Rylie roam the room while we talked.  She had me speak with a dietitian who had a lot of good ideas. She said to try things like putting milk-free butter on things, syrup, chocolate chips, peanut butter (try on her skin first and see if she reacts; there is a high likelihood she'll be allergic since I am, and she said the first two exposures are often fine, then the 2nd or 3rd exposure results in a reaction, so you have to be careful).  Try having her dip foods she likes (muffin, potato chips, fries) into different dips to get her to try things: like french dressing, ketchup, frosting, caramel (just making sure that they are milk-free and wheat-free) and then dip a new food in that same dip. The key is not more food but making the foods she does eat more calorie-rich. Try different kinds of potatoes which are high in calories, like fried potatoes, cut up with fake butter, sweet potato fries... since she likes the protein muffins, try banana muffins, applesauce muffins, etc. This is called food chaining. Think of the foods she likes and then find similar foods to try. My friend Maranda also told me about this idea.

Putting a little protein powder in her milk is a good idea too.  Also she said that we should try to eat as a family to let her see what different foods Hayden and I are eating, the process of chewing, let her and Hayden try one new food per meal (try one bite).  She said to only put three foods on Rylie's plate, two that she likes and one new one, and only a tablespoon of food per age. Many kids get overwhelmed if there is too much food on the plate.  This is why she throws all her food on the floor sometimes. Each meal I should try to give her a protein, a starch, and a fruit or veggie.  If I can get either kid to try avocado, like in a banana smoothie, it's a great food because it's high in fat. Bananas are good for both kids since they're both having diarrhea problems right now. Limit peaches. She needs an iron supplement for slight anemia.

They should eat in the highchair/ at the table but only for 20 minutes, then they can go regardless of how much they ate. For snacks give her two food choices, not just one. Avoid letting her eat constantly all day, have set meals and snack times.  They are going to sign her and Hayden up for a feeding evaluation with speech therapists.  We all sit at the table and they demonstrate how to use dipping sauces and different techniques to get both kids to try new foods.

Rylie has had diarrhea for two weeks now. Last Tuesday she ate her friend's graham cracker at lunch at daycare and has been messed up ever since. So wheat apparently does affect her and I will be more vigilant about keeping it away from her. I did the blood test IGG on her (finger prick test for food allergies) but it came back Saturday as insufficient sample, so I'll have to try again.

I cancelled her Ortho recheck for April because the doctor yesterday checked her and said it is the kind of in-toe that is common and will straighten out by age 8. I can continue with the brace and getting her to walk on her own will help, but she is on the right track.

She and her brother love to tickle, wrestle, and cuddle.  When Rylie naps Hayden notices she's missing and says, "where's Rylie?"  When Rylie goes to a doctor appointment without Hayden in the car, she looks at his empty car seat and says "Bahbah?" or "A-den?"

In the second video you can hear some "nonsense" talk from Hayden.  Sometimes he speaks a bunch of words that you can't understand. This used to be much more common and now only occurs if he is under stress or has some type of nutritional imbalance, like high yeast or phenols.