Saturday, May 31, 2014

A follow up with Dr. Blotter

Today we went back to visit with our ENT.  The appointment was scheduled as a follow up to B's prick allergy test last week and discuss the CF test/Immunologist appointment.

When Dr. Blotter first came in and asked how we were doing I just looked at him and said, point blank, "Please.  Do not EVER send anyone back to that immunologist.  Ever again."  He looked at me kind of surprised and said, "Really?  That bad huh?"  I proceeded to tell him that Dr. Firszt was the more arrogant, rude person I had met in a very long time.  I told him about how he was so rude about the food allergy testing, etc.  Dr. Blotter said he had only ever had to send a handful of people to immunology over the years and he hadn't ever gotten a bad report.  He did however have a friend that's a nurse at LRH that took her daughter to Dr. Firszt on his referral and she didn't care much for him either.  I told him if she was treated the way I was I don't blame her a bit!  He told me he was glad to get that feedback and would keep that in mind in the future.  Hopefully I saved someone a very aggravating experience.

Dr. Blotter checked both of B's ears.  In her left ear she has one tube open but the other is blocked.  Both tubes in her right ear are blocked.  However, even with 3 of her 4 tubes being blocked her ear drums aren't bulging.  Which happens to be a VERY big deal for little sister because her ear drums are ALWAYS bulging.  I told Dr. Blotter that since we had taken her off of all dairy that she has shown huge improvements - the perpetual rattle in  her chest is all but gone.  After looked in her ears he agreed that she has made huge progress.  Yay!

So, we have a couple options now.

Option #1:
Allegra, singular, continue strict no dairy diet, special drops under her tongue (explanation in a second)

Option #2:
Allegra, singular, continue strict no dairy diet, remove malfunctioning tubes, place new tubes in ears

Let me explain the drops.  I asked Dr. Blotter if B was a candidate for allergy shots.  I assumed that's what they would do since she had reactions to so many airborne.  He told me that right now she's too young so she's not a candidate for shots.  Apparently, in Europe, most people don't do allergy shots, rather they do this drop under their tongue.  This drop is a special mixture that acts like allergy shots.  Dr. Blotter said he believes that B will have a better response to it, it helps with some food allergies and it's safer for B than an allergy shot.  Here's the kicker.  The FDA hasn't approved the drops in America.  This means that they aren't covered by insurance and cost roughly $1,200/yr.  I'm assuming that he has other patients that do or have done them because he said that they have them made special at their lab.

And this folks, is why I LOVE my ENT and won't go anywhere else.
After thinking about our options, Dr. Blotter says to me, "You know what?  I'm going to make you a deal.  I will PERSONALLY pay for the drops for her if you will use them."  I told him I'm willing to try about anything with this child of mine.  He looked at me and said, "Ok.  I'll get the drops ordered."

Option #3:
The other option we have on the table right now is a little scary of an option but still one to consider.  This option is called a mastoidectomy.  According to the website medline plus: A mastoidectomy is surgery to remove cells in the hollow, air-filled spaces in the skull behind the ear. These cells are called mastoid air cells.  The way Dr. Blotter explained this to me is that they cut an opening behind the ear and go in and cut out a section of bone in or near the middle ear.  This surgery is a 2 1/2 hr surgery.  It is an outpatient surgery and they do have to put a compression wrap on after surgery for 24 hrs.  This option, however, is a much more permanent solution than yet another set of tubes.  I asked Dr. Blotter what would push us from yet another set of tubes to a mastoidectomy.  He said that if B has chronic ear infections or blocked tubes this winter that that is the route he would suggest rather than put another set of tubes in.  

Dr. Blotter did say that doing a mastoidectomy on a child is rare.  Doing a double mastoidectomy on a child is even more rare.  Apparently they do these an adults with chronic ear problems rather regularly, they just generally don't have kids like mine come across too often because tubes generally work for kids!

So, right now we are doing option #1.  We will begin a daily dose of allegra and singular,  We will continue to stick to a very STRICT no dairy diet and we will begin the special drops as soon as they are ready.  We did get word back from PCH that the CF test was negative (as we figured it would be) so that's great news.  We are still waiting on test results from Dr. Firszt's office so we are still playing a waiting game.  We did schedule a follow up for 6 weeks from now to check and see how things are going so hopefully we will get more good news at that visit!

Tuesday, May 27, 2014

Brooke's trip to SLC for testing

Today was the day we headed down to SLC for Brooke's appointment with the immunologist and cystic fibrosis test at Primary Children's Hospital.
First of all, the immunologist was a moron.  And a very cocky moron at that.  Dr. Firszt was his name and I would NEVER go see that man again.  We waited for 30 minutes past our appointment time plus, we were there early!  The nurse took us back and started asking questions I had just answered on the paperwork that I filled out in the waiting room and handed to HER!  Duh.  After the nurse left an intern for internal medicine came in  She too proceeded to ask me questions that had answers written down on the paper work AND typed into her file which was PULLED UP ON THE COMPUTER IN FRONT OF HER.  Duh again!  At least she was nice.  She checked B's ears, nose and throat.  No comment on any of that.  Listened to her lungs and said they sounded good.  Looked at her eczema and no comment on that.  She told me she would talk to the dr. and be right back.
Dr. Firszt walks into the room and the first thing he says to me is "Who referred you?"  Not a hi, how you doing, nothing.  When I told him it was James Blotter that had referred us his comment was, "Well I don't know him."  I just sat there thinking, "Um, so?"  Dr. Firszt spent 10 minutes tops with us.  He asked if B had been allergy tested and I said yes, her prick test was last week and her blood test was several months ago.  He started asking what she had reacted to so I started ticking all the things off.  He asked how allergic of a response she had had to milk so I told him a 4 mm reaction.  I kept ticking off items and came to dog.  He asked how big of a reaction that was so I said 4 mm again.  I told Dr. Firszt that Dr. Blotter's office had asked us to take B off of all dairy at her appt 3 weeks ago and since I had done that the rattle in her chest had all but disappeared.  This man then tells me, "Well, I can't make you do anything but if you're going to take her off of all dairy then you should eliminate the dog too since they had the same reaction."  He proceeds to tell me that people who are allergic to dogs are allergic to their saliva not there dander but if I don't eliminate the dog then I need to bathe it at least 2 times a week and definitely don't let it in her room.  Um, did you just listen to yourself?  She isn't allergic to the dander but I have to bathe her 2 a week?  WHY?  He also proceeded to tell me that he never tests for food allergies unless the patient has a direct correlation between the food and a reaction because you often times get a lot of false positives so then people end up with a list of 15 foods they think they are allergic to but really aren't.  I told him that her brother has the same issue with diary.  Apparently, I'm still the moron who doesn't know what she's talking about.  Dr. Firszt tells me that he can do a test but, "Are all her immunizations up to date."  Um, yes.  He has to draw blood and then he puts an immunization into the blood sample and if the blood reacts appropriately to the immunization as it should for someone who has been immunized then it's just allergies.  If it doesn't give the appropriate response then she will have to have a booster to that immunization and then come back in four weeks and do it all again.  Seriously?  Yea, cuz I totally want to deal with this guy twice.  So, off we go to the lab.  The nurses there were great.  There were two of them and they helped hold B and they got her on the first stick.  I felt bad because they took like 7 vials of blood.  Supposedly we will have results in no more than seven days.
After that fun experience we went and had lunch with Grandma Terri at Sizzler.  Once we finished there we headed to our next adventure over at Primary Children's Hospital.  Mind you, the nurse that made my appointment at PCH never told me who to see or where to go, just that we had a 1:00 pm appointment for the sweat test for cystic fibrosis.
We made it to Primary Children's just in the nick of time.  We went on a small wild goose chase until we found out where we were suppose to be.  The lab sent us back to registration so we could get registered.  Then registration sent us back to the lab.  That lab took us up to the second floor to the outpatient lab.  The guy and girl that took care of us at that lab were fantastic!  They explained everything they were doing to B as they were doing it.  Mind you, B has had her 50 prick allergy test last Wednesday and just had seven vials of blood drawn so she's pretty skeptical about specific blue chairs with large arm rests.  Poor B figured she knew what she was in for when she saw the chair and tried to make a break for it.  I assured her there would be no owies.  Didn't matter.  Poor sister screamed her little guts out for a solid 5-10 minutes.  They cleaned her arms off (yes ARMS).  They put some sort of chemical on a piece of gauze and then placed it on her arms about an inch or so above both wrists.  After the gauze was down they placed a copper cuff on her arm and secured it onto her like a bracelet.  At this point they hooked her up to a battery - no, I'm not even joking.  They turned the battery on and proceeded to shock her on both wrists for a good FIVE minutes.  The girl said it feels like your arm is going to sleep but just in that one place.  I find it a little difficult to believe that's all it feels like.  After that five minute torture was over they unplugged her and took everything off.  Then, they wiped her arm down and dried it off.  At this point they place a clean dry piece of gauze on the now red square patch she has on her arm.  They wrap plastic around said gauze a good two to three times.  The plastic is secured in place by some awesome pink and purple corban.  A heating pack is then secured to the corban on both arms.  At this point, she was given, "a princess blanket" aka a heat blanket and a timer is set for 30 minutes.  We got to go to the Forever Young room so she could play while we waited it out.  Poor kid could barely bend her arms so she didn't get to play much.  Plus, she was pretty skeptical about what we were doing in a new location.

We were told that our timer was set for 25 minutes instead of the full 30 because once the 30 minutes was up they had exactly 60 seconds to collect the sweat for the test.  So, we headed back five minutes before our timer went off, just to be sure because heaven knows we did not want to do this a second time.  We made it back to the outpatient lab in plenty of time.  Sister knew they were removing everything that was making her hot so she didn't freak out when we walked back in.  Actually, to my surprise, she climbed up on my lap in the chair and tuned into Monsters University that they had playing on the tv.  Once that 30 minute timer went off all of her stuff came off in about 10 seconds and the sweaty gauze was collected and placed into little vials.  I was then told, "Hold on while we weigh it to be sure we have enough."  Yea, didn't see that coming!  They had to get .7 grams (I'm guessing grams) and they got .82 so we barely had enough sweaty gauze and didn't have to do it all over again.  Whew.  They didn't tell us if they'd call with the results or mail them or anything so who the heck knows when we'll hear/see these results.

My poor girl was so good today even after being poked and prodded so much.  She was even attached to my side.  I figured she wouldn't want anything to do with me since I was the mean one holding her down but she did NOT want anything to do with Grandma today.  I'm sure glad Grandma went with though because it would have made for a super long day without the extra help!

Here's to hoping we don't ever have to go back to PCH or that immunologists office EVER again!

Thursday, May 22, 2014

Brooke's Allergy Test Results

Well, it's really no surprise over here that sister is allergic to.....pretty much everything.  She is by far the worst one of the bunch!  Caleb was only food allergies.  Sam & Nash were a mix of the two.  Brooke, well, she reacted to nearly every food (21/30) and nearly every airborne allergen (15/26) they stuck her with.  Poor baby.  Not sure what they're going to do.  The thing I thought was weird was that her milk allergy only registered a four.  Corn and lettuce registered at a SEVEN.  Yes, corn and LETTUCE.  Who the heck is allergic to lettuce?  Oh, right, Caleb and Brooke!  That's who!  Was I really surprised by this?  Actually, yes.
The foods that this poor girl is allergic to are cows milk, egg yolk, egg white, almond, yeast, lettuce, corn, wheat, rye, banana, beef, cacao bean, carrot, green pepper, honeydew, lettuce, oat, onion, pork, rice, strawberry, tomato and whole wheat.  Wondering what kind of milk that leaves for her to drink?  Maybe goat milk?  Soy has almond in it.

Her airborne allergens are aspen, birch, box elder, elm, juniper, alfalfa, bermuda, rye, grain, cocklebur, pigweed, plantain, mucor (mold), penicillium and cat.

Good thing we go see that immunologist next Tuesday.  Meanwhile we scheduled a follow up with Dr. Blotter for Friday May 30.  I'm willing to place money on him wanting to do allergy shots.  This means we are back to weekly visits.  And I was so happy to have both the big kids on every other week finally.  Oy!

Here's to hoping that when we go see the dentist and the orthodontist on June 4 we get some good news rather than "you have 3 kids who need braces and btw they have cavities that need fixed first."  The joys of motherhood!

Monday, May 12, 2014

My Mother's Day Babies

Here it is almost half way through May.  Holy cow!  Where did that go?!

Our online auction raised close to $100.  The yard sale/boutique we did on May 9-10 brought in another $517.  Wahoo!  We still have lots of stuff left from the yard sale so we're gearing up to do it again about the second or so week of June.  Hope we can make more money for our Relay team!

Today is this beautiful boy's birthday!  I can't believe he is NINE today!  Nash is such a fun boy.  He is so thoughtful of everyone around him.  Really, the only person he tends to butt heads with is Caleb.  He still loves building things and taking things apart.  I see an engineering job in his future!  He has also recently discovered a love of reading.  I figured it would happen eventually, it just took finding the right series.  He's reading Conspiracy 365.  There are 13 books in the series.  Each book is roughly 182 pages and they are about a mid fifth grade reading level.  It takes him 3 days to finish a book and he gets 100% on the comprehension tests at school.  So glad his reading skills have finally caught up to his math skills!  This boy is like his father in the math department - numbers just make sense to him.  He is going to be baptized on May 24th by his dad.  We are all looking forward to that.  I hope we have some nice weather so we can have lunch outside!  Since he has started his ADHD meds this school year I have seen a huge improvement in Nash's performance and attitude.  He no longer comes home from school frustrated and near tears. He doesn't fight with his siblings nearly as often and he's much easier to spend long periods of time with!  He started tumbling in January and has loved it.  I'm looking forward to getting his class pictures this week and their review on Saturday.  He may not be too coordinated, but he sure has fun with it and that's really all that matters!  Sure do love this boy!

A few of my other favorites of his baptism pictures by Silver Stem Photography

This sassy little thing turned 3 on Friday!  Boy does she keep me on my toes!

This little girl LOVES to dance!  She wears tutus with every sort of outfit you can imagine.  Not only that, but she rarely leaves home without tap or ballet shoes on her feet.  She takes Grandma Terri by the hand each times she comes to our house and holds her hostage in her bedroom so she can dance for her.  But Grandma can't dance with her - no, only Brooke dances.  Everyone else must only watch!  She loves to dress up in any outfit she can find.  She got light up Minnie Mouse shoes for Christmas and more than once I've found them on her feet or nestled tight in her arms when I've gone in to tuck them in bed before I go to bed myself!  She has got an attitude a mile wide and ten feet tall this one.  She tells you like it is and doesn't hold anything back!  She sure loves each of her siblings though.  Nash is affectionately referred to as "my Nash".  Brooke and Caleb tend to butt heads but I think that's because they are so much alike.  Unfortunately for Caleb she weighs more and is only 3 inches shorter than him.  They wear the same size clothes and she's just as stubborn as he is!  Brooke will start summer dance in June this year and she can hardly wait.  Shes also officially potty trained!  She even gets mad about having to wear a pull up to bed rather than panties.  Wahoo!  No more diapers at this house!  Sure do love this sweet girl!

And speaking of that sweet girl above, we've got more medical issues with her.  I took her into the ENT last week because I knew that at least 3 if not all 4 of her tubes were blocked.  The audiologist did a pressure check and he said the same thing.  When the dr. walked in and asked how we were I said, "Well, pretty sure all four tubes are blocked, one ear is infected and we're looking at a new set of tubes."  She winced and said, "That's actually what I was going to tell you."  I promptly asked why she gets paid then instead of me!  She joking said, "I'll give you this one!"  We scheduled another surgery for May 29th.  When I talked to Travis about it he wasn't happy.  He feels like the tubes are a waste of time and money because they don't work - we got 6 months out of these and they should last 12-18 months.  So, I called back to ask what our other options are.  I was told that our only other option is to go to Primary Children's Hospital and see an immunologist.  When I had gone to the appointment the day before I had asked when we could do the prick test for allergies and was told now so we got that set up for May 21st.  The dr. asked if B had ever been tested for CF.  I told her no.  She said that she thinks it's like a million to one odds that she has it but that every time she sees B she has mucous in her lungs that we can't seem to get rid of no matter what we do.  We've done Singular 2 different times, benadryl, limit milk intake to little or none, chiropractor, and prescriptions all to no avail.  So, the dr.'s office called PCMC to set up an appointment with an immunologist and to have a CF test done.  Apparently all the immunologists were booked until August (big surprise there).  However, one of them has their own clinic so we'll be going there first and then over to PCMC for the CF test.  Should be a fun filled day for B and me on May 27th.  In the meantime the dr. wants to eliminate ALL dairy from her diet.  We know she has a milk allergy because of the blood test they ran for that.  They are wondering if perhaps she has a dairy allergy and that's part or all of what's causing the mucous in her lungs.  So, here we are about a week from our appointment - totally dairy free - and girl friend is super sad and bummed out every time she asks if she can have something in particular because I have to tell her no it has milk in it.  She's really been a very good sport but she sure tells me she's hungry all the time.  Poor girl!  I sure hope it isn't a long term deal - she loves her dairy products!