Tuesday, May 20, 2008

Keeping a Medical Journal for Your Special Needs Child

This weeks Theme: Lorenzen Family Feat week. In other words, this week I'll be blogging about projects I am working on in response to my son's special needs. My guy has ASD and kidney ailments. Most of my posts this week will be related to autism. Tuesday's post relates to both of his conditions.

One of the first suggestions I'd make to parents of newly diagnosed children with special needs is to start keeping a medical journal right away. I'd also suggest this to parents who haven't started one yet. Keeping a medical journal for your child will allow you to track medication changes, doctor suggestions, key dates of diagnosis and other important information.

Keeping the journal in a notebook is the first of five recommendations that a nurse, Catherine makes in a post about keeping personal medical journals on her blog titled Be the Change You Want to See in Yourself. (Note to self: Print out post and paste it on the first page of the notebook.)

One of her commenters mentioned keeping an online blogging diary which is also good idea though I'd suggest keeping it private rather than public. On this blog, for example, I'd rather not mention some things because I'd prefer to respect my son's privacy.

Another idea is to check out this book by Sharon Larsen on Amazon. It is titled Your Child's Medical Journal: Keeping Track of Your Child's Personal Health History from Conception Through Adulthood. The drawback to this book is that it is expensive ($34.93)--especially for a paperback.

The upside is that the book allows you to record these details: Family medical history, Pregnancy record and calendar, Delivery and postnatal record, Routine doctor visits for preventative health care, short-term illness record, Complete medications record, Complete immunization record, Growth record and charts, Allergy record, Vision and hearing records, Injury, radiological, hospitalization, and surgical records, and Dental and orthodontic records. It looks like Larsen's journal helps one to keep track of everything that is important. I'd give it a try, if it weren't so pricey.

This Blogger's Confession: Today I'm blogging about the importance of keeping a personal medical diary for a child with special needs because I really need to start keeping a medical journal in a notebook! I have tried to keep word files on the computer, which worked for a little while until we bought a new computer and I forgot to back up the files. I lost four pages of doctor contacts and well as documentation of a few appointments this way.

I can recreate the doctor contact page by finding the information online and I do remember a lot of my son's past medical history. However, I am coming to understand the benefits of a notebook (if I don't misplace it.) In my own self defense, I do have key papers from doctor's offices in a filing system, so I'm not completely incompetent in this area.

Story behind this post: Yesterday we went to Grand Rapids again to see the pediatric nephrologist (kidney doctor). We have to visit his office every two to three months. Yesterday we were lucky to only have one appointment. Sometimes he has to have an ultrasound and visit his pediatric urologist too. I am usually exhausted at the end of days like those because I also have drive four hours (round trip) and shepherd my son through lunch and sometimes dinner if we have a lot of appointments.

Thankfully my young patient's appointment yesterday went well. His kidney condition has been stabilized. Since we only had one appointment we brought his little brother, who is five. This actually worked to my benefit. The patient actually allowed his blood to be drawn without me there to hold him still and calm him down!!

What helped? His little brother gave him one of his Ty Beanie baby kitties to hold during the blood draw. My little guy decided to do this as a result of the reminders I was giving his older brother on the two-hour drive to the appointment. It worked wonders!! Why didn't I think of that...

Afterward, my youngest son helped (without knowing it) by playing with his brother during the extra long wait in the doctor's office. The doctor was behind yesterday and it seemed to take forever before we saw him. Anyway, my little guy helped keep my oldest one from getting into too much trouble.

Ornery behavior like turning the lights on and off or getting into the drawers, etc. often occurs during appointments. These behaviors are often driven by anxiety and they drive me crazy! As long as we only have one appointment, I don't mind taking my other child. However, if a lot of testing and more than one appointment is to occur then I'd rather leave him home with a sitter.

1 comment:

sara said...

Thank you so much for stopping by and commenting. I have been real busy with school the last few days and had not had the few minutes to update my blog and check for comments until today. I will get to the things about meme as soon as I can!!
Sara