Picture Evidence

When you think about things you take pictures or videos of I bet rashes, swollen knees, and seizures are the top of your list. Why would you have your kid grab a video camera while you keep her kid brother safe so she can film the meltdown? Why take pictures of gross, scary moments?

Because you may not be able to explain the issue to the doctor with the same impact as a photo or a video. Sometimes parents or caregivers are dismissed because the real problem doesn't show in the words. The swelling can go up and down and just not be there when you get to see a professional. The rash clears up before the office opens on Monday but take the picture with your story and you may get a bit further.

You don't need pictures of every dribble of snot. But a sample of moments that need to be looked at will help. Remember that list of stuff that you should take to the doctors? This is on there. Include any information that may help them figure out what is going on. For a rash, include the foods that the patient ate, any new things introduced into their environment, anything that might be a clue.

It you can print them for their records great, if not that's ok. But at least show them to the doctor, and any specialists that may be able to help. It is amazing the little detail that you think is nothing will strike something in on of the doctors.

If they don't see it as important the first time, keep updating the records with more until someone can put you at ease that it is dealt with. Don't give up. Stay on top of things because you are the one who has to deal with it.

Don't feel bad for taking a minute out of the crisis to take a picture or to have someone take a video. It is an important addition to treatment.

Know Your Medical Orders

I have a story to tell and it proves to be a good lesson. My son's doctor wanted some diagnostic testing done on my son. When I was in her office she made sure I knew one (of two) important fact. The blood had to be drawn at a hospital that will process the blood without waiting.

So, I do the leg work and find the proper place to go. I give the script to the woman in reception but not until I have read it over. I made note of the large number of draws and the instructions written across the top:

 "Free Flow, No Tourniquet for ...."

We wait our turn. They place us in this little room with the script placed on the table, along with a whole long list of labels that will at some point wrap my son's vials of blood. I sit with my son on my lap and they bring in one lady to hold him, which is in no way necessary. There is the vampire herself, and a third lady who joins us after a few vials have been drawn.

I went out of my way to explain what the doctor had said and asked if I had come to the right place. I was told that I was.

I watch and listen as they do what they. The main lady is drawing vials while the third is splitting it into the different tubes and applying labels. At one point my son's blood slows to a crawl so she decides to cap that spot off and re-poke him. While they are reading to switch arms, they are talking about the other blood and how this one is going on ice and that one needs more and what label goes on what color tube.

Then the main lady gets ready to take more blood but I stop her. I HAD to point out that they needed to get a tourniquet free flow tube. I had to move a wrapper from the script to point it out when the label woman said that it didn't show it on the labels that she had. 

Three pokes and no apple juice later, we had it done. But you know I told everyone involved what happened including the doctor who did the ordering. I told her that if some of the blood work came out a little funny, it was their fault.

My point of the story? It is up to the patient and or the caregiver to know when to speak up and in order to do that, you must know all that you can of the orders, the medications, and the procedures. 

You can't come across as a know it all, but concerned and informed is a great way to be. You don't have to be pushy (to start with,) but stand your ground if you aren't sure they are handling things correctly. They may know a lot and have been trained but they are also busy humans. If nothing else they should be able to tell you in a reassuring way, why or how they are doing things.

Ask questions. Be informed. Double check and ask again if you need to. You are the advocate to the patient. When they can't or shouldn't have to, sty on top of it, you are there to do it. A hard but important job.

What to Give Your Doctor

 What to Give Your Doctor...

No, not a cold, not a gift, and only sometimes a piece of your mind.

You are taking your child to the doctor and there are bags to juggle, kids to direct, and things to remember while the doctor is trying to fit things in to as short of a time as possible. Make life easier on yourself and be ready. If you walk in there with a plan and everything you need laid out for the doctor you are saving time and energy for you both. 

The most important thing I have found is that you should write or copy the important stuff down so you and the doc each have one. There are a few that you to take to each appointment and some just as they change.

You should have an updated medication list with dosage and the number of times it is taken. Make sure it includes any diet supplements and OTC medications. Make or write up a copy for the doctors office to add to the record.

Have a list of the patient's specialists and recent tests that include the date and place. You should try to have fax numbers as well as telephone numbers and names, because this may help the exchange of information.

And the thing you must give to you doctor to help you the most, is a list of questions. You can move through things smoothly without forgetting key things you need answered. Use your copy to take notes. I have found that this is one of the most important steps to take when you deal with multiple doctors and ailments.

On your question paper, write down any important information that goes with the question. If you are asking about the side effects of a certain drug, include what you think the side effects that may apply to the patient. Or if you see a certain behavior after a seizure, describe the timing and other factors that may play a role. I must add that you should be brief so choose your information wisely.

If it is a visible condition that may not be visible when you get to the doctor, it is a great idea to take pictures. My son has swelling on his knee that comes and goes, so I took pictures to show his doctors. I have also taken videos of his seizures for the same reason. And I also took pictures of the rash he gets from certain foods. It gives us all a very visual record to see and use.

The bottom line is that you should walk in the door with paperwork for the doctor that is  informative and complete without being too long winded. You want a copy for yourself and a pen to make notes as you go through it.

If I have forgotten anything please share it so we can all learn.

What I didn't know then...

You learn a lot in a very short time when you become a special needs caregiver. The first thing you learn is how much you don't know about things like medical conditions, insurance nightmares, and just how stressful other people make an already stress filled situation.

I have been taking care of special needs children, of one form or another, for 20 years. I still have a lot to learn. I hope to share with you the practical, the frustrating, and the comical lessons that I have gone through to help ease you on your path. Maybe we can learn together.

Please remember that anything I share comes from the parent side of care giving, not the professional side. You should always check with those folks for specific to you information.

Also remember that I am human and make mistakes. I also have my own opinions on certain matters. If you disagree with them, we can work it out in a reasonable fashion but don't think that I will change my views on things just to suit a crowd. 

I will try to include links when I can. If you met up with one that doesn't work, please let me know so I can fix it. If you need more information on a topic, mention it in the comments so either the other readers or I can see what we can find.

I am willing to answer questions or help on a specific topic if you mention it to me and I have the ability... if not maybe another reader can.

Nice to meet you, by the way. I hope we grow to be great friends.