Captain's Log - Medical Log Book To Track Doctors' Appointments

Do you have a medical log book for your kids? If not, you should seriously consider starting one today! I think this is my #1 mommy suggestion because it’s important for all kids – not just those that have special medical needs like my daughter and my son with more than just a pediatrician to keep track of. Think about it. How many times have YOU changed doctors over the years? General practitioner, OB-GYN, other specialists…and how many tests have you gotten done? Blood work, x-ray, MRI, etc. Unfortunately our health care system is not digitalized yet so our doctors can’t access your past medical history unless you know who that doctor was, where they’re located and their fax number in order to request previous records. And that’s only possible if you even REMEMBER if you’ve gotten that test. You can’t make a request for a record at some doctor’s office if you don’t even recall having a record!



My son's Medical Log Book

So, now that I’ve got you wondering how many doctors you’ve forgotten and how many work-ups or scans you don’t recall, let’s not let that happen with your kids! I went to Wal-Mart and got a cute 3-ring binder so that I can save all of my son’s doctor visit records in it. What I do is, at every doctor appointment I request a copy of their notes (we see them write down everything from the temp, BP, height and weight to the nature of the visit and their recommendations). Then, I punch holes in the paper and stick it in the binder! How simple! There are some offices that won't give you a copy so I keep track of every appointment on my “Log Sheet” where I write in the date, doctor/location, and remarks for quick access. This way if I’m looking for the last time I took him to, let’s say, his pediatrician, all I do is check the log for “Pediatrician” and see the date. Then I’ll know exactly where to look so I don’t have to flip through the whole binder (which can get pretty big!) If you’re super organized (like myself; I love the office aisle in any store) you can use section tabs for different things like “pediatrician”, “GI”, “health insurance records” or whatever your organizational heart desires!

 

Aside from the fact that it’s fun to do (you see how exciting my life has become?!?), there IS an alternate reason to start this project. You just never know if something will go wrong and you need to look back at your child’s history to see when it started. Or maybe your pediatrician missed something that she should’ve caught and now you have the notes to prove it.

Enjoy your trip to Staples!

My Son-shine - A journey into the world of Primary Immunodeficiency Diseases

Today it is hitting me that I am part of another community I never asked to be in. My beautiful son-shine looks absolutely perfect but he is not. Not medically, anyway. He has Bruton's which is a Primary Immunodeficiency Disease (PIDD). I still have to look that up to make sure I’m writing it correctly. As of right now, half of his immune system is missing. His B-cells are pretty much non-existent which means his body does not produce antigens that fight off viruses and bacteria. What would be a slight cold to you and me could mean pneumonia to him.

It all started with feeding issues. He would be hungry but then would cry, arch, turn away from the bottle when I would try to feed him. There was a lot of spitting up & vomiting and a lot of feedings because he would take in so little each time that he would be hungry very soon. At first glance, the GI thought my 3 month old was suffering from reflux but when a change to his formula showed no improvement and there was a serious weight loss GI ordered us to the ER to make sure there were no obstructions or other internal issues. The ER doc noticed his breathing was kind of fast and x-rays were kind of cloudy but his lungs sounded so clear that pneumonia was not a thought in anybody’s head. Well, 2 ER visits, a 5-day stay in NICU, 2 more ER visits, another hospitalization that lasted a little over 3 weeks and yet another ER visit later we finally got the confirmed diagnosis of Bruton’s; or Agammaglobulinemia; or X-linked Ag; or BTK. They are all the same and half of them are not even recognized by my spell check. So here I am, a member of the primary immune deficiency community. Oh, Holland, why do you hunt me down while Italy evades me? 

So now I have to be my son’s nurse along with my daughter's. Every week he needs two infusions of a medicine that contains the antigens his body does not naturally produce. Yes, I have to stick him with a needle. Every week.
 

This will be a life-long issue for him. There is no cure as of yet.

2 kids. 2 chronic conditions.