Allergist Take Two

The kids and I left the house at 10:20am. Our first stop was a McDonald's where I dropped Nadia off with Paul's parents at 10:45am. She played in the playland there, had lunch, took a short nap in their car, went to Hooplas (playland plus she bowled half a game of mini bowling), etc. She had a very fun day! Ian was in the car a total of 5 hours, and during that time he slept for 55 minutes and watched VeggieTales for the rest of the time. What would we do without a portable DVD player? Actually our first one broke on Mother's Day, and I just bought this replacement last Monday a few hours before we drove to MD. It's worth every dime that is for sure! We made one other stop en route to the Allergist (for lunch and a diaper change).

It turns out that the allergy group Ian first saw in March (it's a group of 13 pediatric allergists) doesn't follow the same protocol for treating EE as the CHOP allergists do. He said that if we follow the protocol of the CHOP Allergists/GI doctors, Ian will undergo many endoscopies (possibly as many as 15) and a lot of patch testing and a very restrictive diet. Over the years he has treated 30-40 other infants/toddlers who had EE. He has found success with a very different protocol. He gave us a prescription for Pulmicort (taken orally twice a day with Splenda rather than the usual medium via a nebulizer), Singulair (once daily mixed in his EleCare), and said that we need to eliminate milk, egg, and peanut from his diet. I am to call him in one week with a report. He said most parents report an improvement within 2 days. He said the improvements we should notice would include: increased weight gain, less vomiting, and less crying when we try to feed him solid foods. He also wrote a Rx for the EleCare in case our insurance would need that. He said that medical food is in a different category than medications, and that our insurance might cover it even if we don't have Rx coverage. He also gave me 4 cans of EleCare (and I paid $21 a can on eBay for the 6 cans I bought last week so even at eBay's prices that was worth $84), and he gave me a coupon I can mail in to receive one more free can of EleCare from the manufacturer. He also gave me 24 days worth of free samples of Singulair. I told him we didn't have any Rx drug coverage. Once he feels that Ian's esophagus has healed (maybe a month or two) then he'll give us the okay to go back to the GI for another endoscopy. If that one comes back clear, then we'll gradually start reintroducing some of the foods we've eliminated to determine exactly which one Ian is allergic to. Then Ian will have one last endoscopy to prove that even with reintroducing some or all of the foods that his esophagus is still clear. He said his protocol only involes usually 3 endoscopies, far fewer than CHOP's protocol. I was grateful he gave us all the free samples because otherwise I was wondering why we drove all the way there to recieve an Rx he had already determined Ian should be on last Friday after he read the endoscopy lab report. However, it turns out it was good Ian went in person because he has a double ear infection. We started the antibiotic tonight. Thankfully the generic only cost $21. Whew.

I have time to research where to buy the Singulair since he gave us 24 days worth of samples. CVS said one month's supply will cost $150, and the doctor is expecting Ian might be on it for 5 months. I intended to fill the Pulmicort Rx because when I called them (before I went) they said it would cost $200 (compared to $350 that Walmart quoted me). However when I went there they said it would cost $400. I decided to do a bit of research before I placed that order. If I went to CVS for his Prevacid, Pulmacort, and Singulair (using generics for the first two), the bill would come to a little more than $700 a month. If I purchased EleCare at a pharmacy, I am guessing I would probably need at least 8 cans a month (I'll get a better idea how quickly we go through a can over the next few days). If I needed 8 cans that would be another $400/month if I bought it at a pharmacy (thankfully it's cheaper on Amazon and eBay). I called the insurance company, and if the doctor faxes them a predetermination letter they might cover the EleCare. That would be a blessing although we now have 10 cans on hand and I'll send in the coupon for the 11th can so we won't need that for several weeks. The Allergist said that every time we go to his office he can give us free samples of EleCare.  I wish there was a way to just get Prescription Drug insurance. I asked my HR dept if that would be possible in the fall, and they said no. Someone on facebook recommended that I contact the companies who make the drugs. I'm going to contact AstraZeneca tomorrow. They make the Pulmicort. From the research I did online I could get it for about $120 a month (vs. $400 at CVS) from Canada or about $200 a month from Costco (I think I can make that purchase without having a Costco membership). Costco has a 2 day shipping option (for an extra $14) so I am thinking that if I can't get it through the company, I'll order at least the first month's supply through Costco as the shipping from Canada is slooooow. This situation is ironic in two ways: #1 during the past 10 years of marriage we've hardly been on any Rx aside from fertility meds. We had Rx drug coverage and hardly used it. Now that we don't have any, we're using lots of medications! #2 The insurance would pay for all these endoscopies and allergy testing. That would be FAR more expensive. We are going a route that is far cheaper for the insurance company and yet we're getting hit with a much higher bill because we've made that choice.

Leaving the appointment I felt rather conflicted because the GI is telling me get patch testing done ASAP and the Allergist is saying he doesn't find patch testing to be beneficial. He wants Ian to be eating a wider not more restrictive diet. He wants us to start using the Magic Bullet so Ian is getting meat, etc. I of course do not know which is the better route although fewer surgeries is certainly appealing to me as it's nerve wracking every time he goes under anesthesia. So I called Dr. Williams as although he's a psychologist (PhD) he works in the GI dept at Hershey. He called me right back and said he's had many patients with EE and has seen both protocols used. He said the other one definitely involves far more endoscopies. His suggestion was that we give Dr. Anolik's protocol a try with the exception that he said we should also eliminate soy (along with milk, egg, and peanut). He said that if the next scope doesn't come back clean (the one we'll do after Dr. Anolik gives the okay), then he suggests we switch to a CHOP allergist and switch to their protocol. Dr. Anolik said that CHOP is known as the most aggressive group for treating EE in the entire country, and they have received criticisms in journals over their protocol. He said he has seen many of their patients have NG tubes for 1-2 years because of EE. I am very grateful that Ian likes the vanilla EleCare so we don't need to contemplate an NG tube. Dr. Anolik thinks they go the NG tube route too hastily.

Well it's past my bedtime so I need to sign off. Had I known I'd be heading to CVS tonight, I wouldn't have taken the kids there yesterday. Yesterday I was buying grocery items to take advantage of their deal where if you spend $30 on certain products (like Doritos) then you got a $10 gift card for Exxon/Mobil. The items that were included in the promotion were on sale (such as a 2 liter of Coke for 99 cents) so I was very happy to buy $30 worth as with all these trips to the Philly area I can make good use of the gas cards. I think CVS will be running this program for a few weeks so hopefully I'll get several $10 gas gift cards from CVS. If anyone has input on which allergy protocol I should follow OR how to get medications for reasonable prices when you don't have drug coverage, I am ALL ears!