Day 5 – Wrapping Up

Today’s Agenda: Official NIH badges pick up (all), pulmonary testing (Rick and Eddie), biofeedback (all), ENT (Eddie only), wrap up with Dr. Pam (all)

Today’s discoveries:

  • Dr. Pam did her residency with Dr. Dietz and was the one who discovered and published a link between LDS and increased allergies.
  • More medical research is done here than anywhere else in the world.
  • We are the 4th family in the LDS study.  They want more.  If you are an LDS family, let me know and I can put you in touch with Dr. Pam.  She totally gave me permission for this.
  • Many of the specialists and staff we saw this week will be at the LDS conference in Baltimore in June!!!!  Yay!!!!  If you are an individual with LDS, you need to do whatever it takes to be there!
  • The Americans that contracted Ebola were treated here and the NIH is currently working on a vaccine for Ebola.  Nobody can even get off the elevator on that floor without the proper clearance.
  • The NIH has 19,000 clinical trials going on at the moment.
  • A teen who has lost his charger and is is managing without a phone is miserable and will make everyone else around him miserable.
  • Pulmonary functioning tests take a looooooooooooooooooong time to do on a pediatric patient with LDS and a history of asthma.  Seriously.

    One of the pulmonary functioning tests Eddie had this morning was in a chamber much like this one.
    One of the pulmonary functioning tests Eddie had this morning was in a chamber much like this one.
  • The technician who gave Eddie his pulmonary functioning and nitric oxide tests this morning has worked at NIH for 2 years.  Her name is Miranda.  Her last name is pronounced the same as Dr. Pam’s but spelled differently.  They are not related.  She is not an actual employee of NIH, but is a contractor.  Therefore, she does not have all the password clearances as if she was a government employee.  One of the things she does not have the password to is the printer.  Therefore, she depends on her colleagues in the office a lot.  This is the nicest office she’s ever worked in and they technically have even more space than they need.  Seriously, that test was freaking long.  She and I had plenty of time to chat.  I feel pretty confident I could complete an online dating profile for her with ease.
  • One of Rick’s favorite appointments this week was biofeedback.
  • Rick’s pulmonary functioning tests did not take nearly as long to complete.
  • One must take a nitric oxide test before the pulmonary functioning tests or the PFTs cannot be completed.  I have no idea why.  I’m just taking their word on this.
  • Having badges are going to allow us to speed through security on our next trip.  Security here is like one step beyond airport security.  See ebola bullet above to figure out why.
  • Biofeedback is going to teach all of us how to manage the stress of life and dealing with chronic medical illness.  This is good stuff.
  • Biofeedback has some amazing leather recliners.  You push a button and determine how much to recline and lift the foot rest.  Plus, when we get to use music therapy on our next visit, the chair vibrates to the rhythm of the music.  So excited about this!
  • Zentangle is a suggestion Julie from biofeedback had for Eddie and I.  This is a type of art therapy.
  • We hope biofeedback can be a way to help Rick and Eddie manage some of their pain without medication.
  • When you are breathing for relaxation, placing one hand on your chest and another on your gut will help you to determine if you are in fight-or-flight mode.  If the chest is moving more than the belly, you are stressed.  If the breathing is coming from your belly instead, these are deep relaxing breaths.
  • It takes about 2 minutes after you begin deep breathing exercises for your entire body to respond and calm itself.

    We were all taught how to use deep breathing techniques to slow our heart and respiration rates.
    We were all taught how to use deep breathing techniques to slow our heart and respiration rates.
  • In talking with Julie, Eddie stated he has pain much more often than he tells us.  He has began to just accept it as part of life, but it does cause him stress and makes school difficult.
  • Eddie has a great deal of anxiety and finds it near impossible to relax.  He is almost always fidgeting.  When he has to be still, his anxiety builds and he feels “jumpy”.  Biofeedback and breathing should help.
  • Much of the reason Eddie has a hard time sitting still is because his knees get stiff and uncomfortable quickly.
  • We will have more biofeedback sessions when we return.  The plan is to schedule them as one of the first appointments to help give all of us techniques we can use throughout our appointments here.
  • Eddie’s ear infection is an outer ear infection.  The nurse practitioner in the ENT department here believes it is really a result of not totally clearing up the swimmers ear from July’s vacation.  She wants him to see an ENT to have his ears looked at next week.  Seriously.  Next week.  Did she know today was Friday and all the offices were already closed?  Does she know we’ve been out of school for an entire week?  Ugh.
  • Eddie is allergic to every single environmental allergen tested.  All of them.
  • Nasal sprays are better than any other medication on the market for treating environmental and seasonal allergies. Zyrtec is fine, but if all of us are to use only one medication on a regular basis for allergies, it needs to be nasal sprays.
  • We are to keep a rough food journal for Eddie.  He needs to cut back his milk to 1/4 cup in baked products.  He needs to avoid egg for the time being.  Because he has LDS, we can not approach food allergy challenges and building a tolerance like everyone else.  He will continue to eat only this until he has absolutely no reaction — mild or otherwise.  Then we will progress from there.  However, building a tolerance for him may take longer than other children who have such food allergies due to the increased mast cells we know he has as a result of the LDS.
  • Eddie has a mild deficiency of vitamin D according to the blood work.  However, we will receive a plan from endocrinology after she sees the DEXA scan.
  • They will receive the blood work back on the food allergies in a week or two and then contact us with more direction regarding a plan for increasing his milk and egg.  Regardless, he has to stay at the stage of the food plan until he has not as much as a stuffy nose.
  • He cannot try to build a tolerance to milk and egg at the same time.  We have to focus on one at a time.
  • If he has a reaction to any food, we are to contact them so they can reevaluate the plan.
  • He and I were trained in epipen use and Eddie will now be responsible for carrying an epipen at all times.  I will also have one at all times.
  • Eddie’s pulmonary functioning tests were picture perfect.  There was absolutely no trace of any remaining asthma from childhood.  However, he is to keep an inhaler just in case.  With LDS, we want to cover all our bases.
  • Dr. Pam said every single specialist articulated a need for Rick to have a sleep study for suspicion of sleep apnea.  Sleep apnea is very, very common in LDS patients — even young children.  Rick is to talk to his doctor about a referral for a sleep study as soon as we return home.  She said this needs to be the top priority for him.
  • Rick needs to return as soon as we are able and everything can be scheduled for more GI studies.  This is not a simple feat as it will require him being off coumadin for 5 days prior.  He also will need cervical spine xrays before the procedures (there are several of them).  He will have to spend 2 nights in the inpatient hospital here.
  • The GI specialist here — Dr. Strongin — is very interested and fascinated by LDS.  She wants to be Rick’s longterm GI doctor so she can follow him, learn more about the disorder, and eventually become an expert in LDS.
  • We will be connecting with Dr. Pam and Marjohn, her nurse practitioner, often about both of them.  Eddie does not need to be seen again for a year unless things change.

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