Tuesday, March 22, 2011

it's quite a long story...part 2.

so on part 1, i left you with news of me getting a second opinion, and ashlyn having an awesome visit with a dentist who totally "gets it" when it comes to dealing with children with sensory issues. which reminds me, i still need to write a note singing her praises.

didn't mean to leave everyone hanging for so long.

moving along now, a week and a half ago, we had an appointment to take ashlyn for allergy testing. why allergy testing, you ask?

well, because for the past 4 years (or more) she's been dealing with a headache disorder. her pediatrician kept saying she thought they were sensory related so we continued to treat them with ibuprofen and called it good thinking as she grew out of some of the sensory issues, she'd also grow out of the headaches.

well, no such luck. they're just getting worse.

so we got ourselves a visit with a neurologist at Children's Hospital. during that visit, by questioning ashlyn and her symptoms, he determined that she's suffering from pediatric migraines. he believes they are sensory and anxiety related, but scheduled a CAT scan just to be sure and told us to continue doing what we were doing. we were also referred for a behavioral health consult to treat the anxiety.

the CAT scan showed enlarged adenoids blocking the entire nasopharyngeal opening and mucosal thickening in the para-nasal sinuses. which landed us a referral to an Ear, Nose, Throat doctor.

we chose to take her to the same one who's been treating emma---the same one who's done 3 of her 4 surgeries.

he didn't want to rush into surgery to remove her adenoids immediately and wanted us to get her allergy tested because of the family/sibling history.

so, that brings us to this appointment.....the day she was to have her allergy testing.

she was a hot mess in the days leading up to the appointment. sensory issues, anxiety issues, headaches, meltdowns, the whole nine yards.

she remembered seeing this photo on doug's phone after emma's testing a year ago taken within seconds of the pricking. it got a whole lot worse from here.

buuuuuut. mama had a plan. today was the perfect time to put that valium to use and she didn't like it at all. 2mL is all she had to take. less than 1/2 of a tsp. you should have seen the meltdown that ensued over having to swallow it. OY!

i kinda expected her to get all sorts of loopy, but there was none of that. just chill. no meltdown upon seeing the doctor.

we have a new friend for medical procedures.....his name is valium.

she just laid there, calm and mostly content. and the good news is, she isn't allergic to anything at all.

the bad news is, allergies isn't what is causing the mucosal thickening as suspected by the ENT doctor. or the headaches. so now we wait until the repeat CAT scan, mid-April, to see if they'll remove her adenoids.

as i mentioned, emma goes to this same allergist office, but sees a different doctor. while ashlyn was getting tested, emma was in the shot room getting her weekly allergy shot. she's been getting these for at least a year now because she's allergic to everything under the sun.

but, today, after her shot she had a 6-month followup appointment.

because she has allergic reactive asthma attacks (meaning she has asthmatic symptoms when exposed to her allergens) they test her lung function each time she has a follow-up. she does this here and also when visiting the pulmunologist at Children's.

she's been doing great and been well under control with her daily meds. occassionally she'll get itchy eyes, dry cough, etc, but we haven't had to rush to the hospital for breathing treatments in over year.

but, after the nurse tested her, the doctor came in for his evaluation and asked how she was doing. i proudly proclaimed she was doing better than ever!

then he took a listen to her and asked "hey, emma, why are you wheezing?" she shrugged her shoulders as if to say, you're the doctor not me silly.

he took a quick look at her chart, noticed she had gotten a shot from a new vial, then listened again. this time with a concerned look on his face. then she started saying her throat felt weird.

then i heard the words "anaphylactic reaction", i'll be right back, she needs a dose of epinepherine/adrenaline and a breathing treatment right away.

in a matter of seconds, we went from a routine check up, to chaos.

not sure if anyone out there has ever seen their child get a dose of epi, but it's kinda creepy. they immediately turn white as ghost, get very shakey, elevated heartrate, and proclaim over and over that they don't feel so well.

mind you, doug was with us when ashlyn had her appointment, but then left to go back to work when all this was going on.

in the meantime, ashlyn is freaking out because "emma looks weird and it's scaring me mommy." clearly, the valium had worn off at this point because her anxiety was in full-force. all she wanted was daddy to come back and rescue her from the scene unfolding before her eyes.

after a little stay in the patient rooms and lots of nurses checking in on her, we were able to take her home. all this excitement got her a free-pass to stay home from school to rest off the icky feeling.

being mom to a special needs child and to another who has had a long history of illness in her short 6 years can be very taxing emotionally and mentally. not to mention dealing with my own issues.

which brings me back to that second opinion appointment.....

they drew 8 tubes of blood. it wasn't until weeks later.......because they couldn't find my results......that i found out i was being referred to yet another doctor because my vitamin D levels were as low as people living in third world countries--10, when they should be above 50 and i have rheumatoid factor in my blood.

after a visit to the specialist to see what exactly i need to do about all this information, a rheumatologist, i'm now taking 50,000 IU of vitamin D once a week, in addition to 1,000 IU daily. to put it into perspective, the recommended daily intake of vitamin D is only 400 IU daily.

oh, and they are treating me for rheumatoid arthritis. so, altogether that makes 5 more daily pills added to the fistful i already take. :(

but i skipped over:
  • January 13, the initial dental appointment where we were referred for an ortho consult for her open bite and cross bite issues, and....
  • February 4 when we went to see the pediatric skin & cancer doctor, and...
  • February 9 when she started 30 days of steriods; and...
  • when both girls started round 2 of antibiotics for raging sinus infections; and...
  • February 10 when we waited one and a half hours at the Ear, Nose, Throat doctor, and..
  • February 14 when i cried all night long; and....
  • February 24 when the stomach bug hit our house; and...
  • February 25 when i saw a new specialist; and....
  • March 4 when ashlyn started getting daily headaches/migraines that aren't relieved by medication.

i'm thanking God for the strength to deal with all this.
i'm thanking God i still have hair and i haven't turned to drugs or alcohol to cope.
i'm thanking God i'm now on i'm on the right medications, i feel better than i have in a looooong time. :)
i'm thanking God i survived ashlyn taking 30 days of steriods, and lots of sleepless nights as i worried about her as she ran to her room screaming "i just want to kill myself" several times during the week of steriods.
i'm thanking God my sweet Spidergirl is in excellent hands with her allergist.
i'm thanking God for a flexible work schedule.
i'm thanking God for good medical insurance.
i'm thanking God we aren't dealing with fatal illnesses.
i'm thanking God for compassionate blog readers who check on me often.
i'm thanking God for those who send up prayers on our behalf.
i'm thanking God i don't have to do it all alone.

i'm still praying that the chemo will start responding so we don't have to get more aggressive in treating the morphea.
i'm praying that the rheumatoid flares will decrease as the medication builds in my system.
i'm praying ashlyn's daily headaches will quit plaguing her.
i'm praying we some get moved up on the waiting list to get her evaluated for the anxiety sooner than their 4-6 month wait.
i'm praying that this reaction spidergirl had doesn't set her back into a pattern of asthmatic reactions now that spring is here and she'll be outside more.

*deep sigh* now, i can think a little more clearly. happy posting will resume as usual tomorrow. :)


  1. You are an incredibly strong person. Thank you for being such an example.

  2. {{{{HUGS HUGS}}}} You are a strong person to deal with all these different issues in your every day life. So glad you have a wonderful husband to be by your side and your girls' side. That is a blessing.
    I can understand what Emma was going thru. Man that is scary, been there done that. Here hoping that she will be fine this Spring. So glad that she had a follow up appointment that day instead of going home.
    {{{{HUGS HUGS}}}} to Ashlyn, she is too young to have to deal with all of her issues. I hope you/Dr come up with a solutions.
    I am glad that the Dr found out about the rheumatoid factor and you are being treated for it.
    Thank you for being so open and sharing your life with us and hopefully it is helping someone else who is dealing with the same problems as you and your family.
    {{{{HUGS HUGS}}}}

  3. Damn, you are brave, but stories like this are the reason I don't go to church anymore. Don't get me wrong, I believe in God. I pray. I teach my children to pray and we do it together. I teach them that God listens and leads, but I get so angry at church when I hear of babies who get sick and people who die unneccesarily and then I hear your story of a good family who is continually plagued with illness and hardship and I wonder...why? What is the lesson? Why do good people have to suffer? Argh! I'm sure I am preaching to the choir here. It makes me sad and angry and disappointed, but you remain so positive and I truly want to believe that your faith will get you through it, but why??? Why?

  4. Okay, so not a 'laughing' matter ... but solvable! Yeah!
    Oh, yes, Vitamin D ... I am on those now too ... I swear, in two weeks you will not feel like yourself. I am 'happier' now being on them! Feel more in control. So I hope they do the same for you!
    Hugs to you and so glad at least you are getting answers. And I don't think the reaction will make her allegies worse this spring either! I hope i am right!

  5. Dude. I have no idea how you maintain sanity through all of that. I seriously admire you for it and would hug you and take you shopping or something fun if I were closer. ;)

  6. Wow, you do keep busy. I know it can be scary when you hear them say anaphalactic reaction. My dd did it when she was just over a year old. She quit breathing and everything, it was very scary.
    I'm praying you get it all worked out for all you have going on. Sending hugs and prayers your way.

  7. MAJOR HUGS!!! I will be sending you these hugs daily as well as continuing to lift you all up in prayer. You are an example of one strong woman - even when you do not want to be.

  8. tessa, martha, shel, melanie, amanda, and rhonda....thank you. i appreciate every one of you taking time to read and comment. :)

    shel, i don't have a good answer for you. i wish i did. i know God has a plan for my life and it amazes me all the time that he'd use little ole me to show His mercy and grace.

    amanda, i'm hanging on by a thread girl. i'd loooove a day out with you.

  9. jenny....thank you. i appreciate your prayers.

  10. Dear lord, I don't know how you deal with all that...and still blog, and craft, and work and teach a class about dealing with loss. My mom had a Vit. D deficiency and was on the same treatment, she made out fine and feels better now. Praying things get easier, you're new meds will continue to make you feel better and your girls will outgrow some of their conditions. As you tell us in your class...take care of yourself.

  11. miss kathy.....blogging, crafting and helping others is what keeps me sane. :)

    thank you for the reminder. i'm trying to not be so hard on myself when things don't turn out how i think they should.

    when all else fails.....i scrapbook. :) thank you for your kindness.

  12. Holy moly! You and your poor girls! My D levels are low (30ish) but I've been taking 2000 units daily for a few weeks now.

    Hope that they figure out the headache issue....my friend's daughter has them but she had them, too, growing up. Another friend's daughter had her tonsils and adenoids taken out but that was more for recurring ear infections than sinus issues.

    HUGS to you all!


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