I will never forget the first time we had to travel across the country to see a specialist with our daughter. I couldn’t understand what this doctor was going to be able to tell me that I haven’t already heard from 26 others. I was nervous, semi pessimistic, and hopeful because I had no other choice. I was desperate. At that time Olivia’s behavioral issues were still pretty severe so traveling 8 hours from Houston to Little Rock seemed down right terrifying. We had yet to make a successful trip anywhere over 2 hours without having to stop to clean vomit, feces, or urine. However, there wasn’t a doubt in my mind we would get kicked off a plane so, driving was our only other option.
I remember being so angry when I finally heard her ask if we were in “AR-PAN-SAW” yet for the last time at 3am. Angry that we hadn’t received the appropriate care for almost a decade. Angry that I allowed a disgusting amount of vaccines to be injected into my gorgeous, healthy baby. Angry that we were in this crappy ass hotel because we couldn’t afford something better. A few short hours later when we were expected to arrive for labs the entire family was showing signs of a seriously short fuse. It didn’t take much for me to exchange words with a nurse. Especially when it was painfully obvious that it was going to take 5 different sets of muscles to hold her still. Olivia sensed Daddy’s pity from a mile away and decided this would be her chance to fight.
I’m sure you can visualize the fantastic first impression we left with the doctors by the time we left the consult that immediately followed the extreme lab pandemonium. The word frazzled doesn’t even begin to cover it.
I vividly remember leaving the office with my head spinning. I had no idea what the heck just happened in there. I had plenty of time to reflect on the 8-hour drive home and quickly came to the conclusion that the only person to blame was me. The mental list of could haves and should haves was getting more brutal by the second.
1. Get organized. Hopefully most of you are already requesting records following every visit. If not, you should start doing this immediately. Check with each office regarding their records request policy, but remember you have the right to your medical records. Some offices may have a copying fee or specific request form but please do not accept no for answer. If they refuse to comply they should be reported to the medical board. Period.
I remember being so angry when I finally heard her ask if we were in “AR-PAN-SAW” yet for the last time at 3am. Angry that we hadn’t received the appropriate care for almost a decade. Angry that I allowed a disgusting amount of vaccines to be injected into my gorgeous, healthy baby. Angry that we were in this crappy ass hotel because we couldn’t afford something better. A few short hours later when we were expected to arrive for labs the entire family was showing signs of a seriously short fuse. It didn’t take much for me to exchange words with a nurse. Especially when it was painfully obvious that it was going to take 5 different sets of muscles to hold her still. Olivia sensed Daddy’s pity from a mile away and decided this would be her chance to fight.
I’m sure you can visualize the fantastic first impression we left with the doctors by the time we left the consult that immediately followed the extreme lab pandemonium. The word frazzled doesn’t even begin to cover it.
I vividly remember leaving the office with my head spinning. I had no idea what the heck just happened in there. I had plenty of time to reflect on the 8-hour drive home and quickly came to the conclusion that the only person to blame was me. The mental list of could haves and should haves was getting more brutal by the second.
1. Get organized. Hopefully most of you are already requesting records following every visit. If not, you should start doing this immediately. Check with each office regarding their records request policy, but remember you have the right to your medical records. Some offices may have a copying fee or specific request form but please do not accept no for answer. If they refuse to comply they should be reported to the medical board. Period.
If you already have these records at home you can choose to file them in chronological order or by specialty. Find out whether your doctor wants all of your records before your visit or if they only want certain specialties. Many doctors would prefer they review the bare minimum before seeing the patient and then request specific records be sent afterwards.
To save yourself a lot of time scanning and emailing records I strongly recommend you invest in an AIM Care bracelet or keychain. All of your documents, pictures, medications, allergies, and videos for every family member will be ready and available to plug into any computer for the physician to review. This eliminates the need to drag around the 3-inch medical file binder EVER AGAIN!
2. Plan ahead. Unexpected things happen. There is no way you can plan for everything, but take the time about a month before to put together a checklist. Does your child get carsick? Do you have enough movies downloaded to an IPad? Are there any labs that your primary care physician is willing to order prior to your appointment? Does your hotel have room for you to stay an additional day if necessary? For children that will fight the labs I encourage you to grab a shoe box and fill it with 5 items from the dollar store. Leave it in the trunk as the prize box for successful lab draws ONLY. We eventually did graduate into this phase and it's better than spending $25 at the hospital gift shop.
Snacks/Food. Most of us are juggling dietary restrictions so packing your own food might be necessary. Plan for food and drinks during the car/plane ride, hotel and for the long doctor visit. My child specifically needs to eat every few hours or her behavior can get ugly. If you would rather grocery shop when you get there make sure you
plan extra time to visit the nearest health food store or Whole Foods to your hotel. If you would rather eat out there are a couple apps that I’ve found extremely helpful. Find me Gluten Free and What’s Around Me? is also good for tracking the nearest Emergency room in case you need it while you are in route. (Speaking from experience here.)
3. Use available resources. Not everyone has the finances to take off work and jump in the car several times a year to travel for medical care. Thankfully there is a list of excellent resources available. Plan ahead. It can take months to get all your ducks in a row. Ronald McDonald houses are available near most major hospitals. Medical flights are available with the appropriate planning. Mercy Medical Angels, Air Charity Network, Angel Flight, and National Patient Travel Center are a few to get you started. Grants are available to help with the financial strain. TACA, ACT Today, Autism Cares, NAA – Helping Hand Program, and TMR are a few. Please verify if your family qualifies.
4. Use your time wisely. Remember to use your doctor for their specialty. If they are a neurologist stick to neurology. If they are an immunologist stick to immunology. Take this opportunity to pick their brain in the area they claim expertise. You will never find a doctor that knows EVERYTHING. Our children require a team approach. (This might have been one of the most difficult things for me to accept.) Also, I would recommend bringing an adult with you to help with the children. In our case my husband had to take off work. Like thousands of families we do not have any support from our family. Many times you will wait hours to get into a room. Plan ahead for this. These small humans will get tired, hungry, and need to use the restroom. There’s a very high chance ALL of these needs will need to be met at the exact moment the doctor enters the room! You might also consider checking if there is a fellow warrior in the area at the same time as you. Maybe someone lives in the area that can help for an hour or two. It can’t hurt to ask around.
5. Make notes. You think you’re going to remember every detail from these major doctor appointments but I promise you will not. Take the time to jot down your top 5 discussion priorities before you leave for your appointment. Then while you are discussing those topics take notes. If the doctor doesn’t object I would request to audio record the visit. It is so difficult to wrap your head around everything and remember it while you have a child trying to run down the hall while stripping off their clothes. (Speaking from experience again here.)
6. Display confidence in your decision. Last, but certainly not least. If you have a family member that can’t hide their facial expressions my best advice is to LEAVE THE PITY PARTY IN THE CAR. You have most likely waited over a year for this appointment. You have sent records. You have trekked across the country. This is the moment you’ve been preparing for because this is what your child needs to get well. Yes, we feel sorry that our children have to do labs and of course we want to take away all their pain. You have made the decision that this is a stepping-stone to reach your goal. The process is by no means always pleasant, but it IS necessary. Let’s just say my husband hasn’t been allowed in a laboratory with Olivia since that very first visit. His presence alone is just not what’s best for her. I’m happy to let him manage the prize bin and high fives at the finish line.
I’m happy to share that Olivia has been a huge responder to medical treatments despite the fact that we didn’t begin until she was almost 10. Yes, I said 10! I can’t even believe I’m talking about the same child that we have the pleasure of raising today. We have since traveled an additional 8 trips for appropriate medical care. Our last trip I decided to attempt solo for the first time and found myself not having a single concern. Olivia was a joy to travel with. We had a great conversation in the car about how this driving nonsense was for the birds. We decided we were both ready to fly from now on. She also sat by herself for her labs. She made sure she told the nurse exactly how she felt but the usual army that’s been required in the past to “keep her still” was able to stand down and instead offered support by cheering her on.
If you have a child with a chronic illness, development issues, or autism you might find yourself needing to travel out of state to visit a specialist. The need for the visit can be stressful enough but the travel doesn’t always have to be. Many of us travel around the country to ensure our children receive the best possible medical care only to find out when we get home that we could have made things a little easier for ourselves. Traveling can be emotionally, physically, and financially draining but it doesn’t have to be with a little preparation. The most important thing to remember when traveling is that you are doing an amazing job. You made the appointment. You got in the car. You are one step closer than where you were yesterday. I feel very confident in saying that it is NEVER TOO LATE!
I’d love to hear from everyone else. What tips can you share for a smoother travel experience? Please leave your ideas in the comments below.
To save yourself a lot of time scanning and emailing records I strongly recommend you invest in an AIM Care bracelet or keychain. All of your documents, pictures, medications, allergies, and videos for every family member will be ready and available to plug into any computer for the physician to review. This eliminates the need to drag around the 3-inch medical file binder EVER AGAIN!
2. Plan ahead. Unexpected things happen. There is no way you can plan for everything, but take the time about a month before to put together a checklist. Does your child get carsick? Do you have enough movies downloaded to an IPad? Are there any labs that your primary care physician is willing to order prior to your appointment? Does your hotel have room for you to stay an additional day if necessary? For children that will fight the labs I encourage you to grab a shoe box and fill it with 5 items from the dollar store. Leave it in the trunk as the prize box for successful lab draws ONLY. We eventually did graduate into this phase and it's better than spending $25 at the hospital gift shop.
Snacks/Food. Most of us are juggling dietary restrictions so packing your own food might be necessary. Plan for food and drinks during the car/plane ride, hotel and for the long doctor visit. My child specifically needs to eat every few hours or her behavior can get ugly. If you would rather grocery shop when you get there make sure you
plan extra time to visit the nearest health food store or Whole Foods to your hotel. If you would rather eat out there are a couple apps that I’ve found extremely helpful. Find me Gluten Free and What’s Around Me? is also good for tracking the nearest Emergency room in case you need it while you are in route. (Speaking from experience here.)
3. Use available resources. Not everyone has the finances to take off work and jump in the car several times a year to travel for medical care. Thankfully there is a list of excellent resources available. Plan ahead. It can take months to get all your ducks in a row. Ronald McDonald houses are available near most major hospitals. Medical flights are available with the appropriate planning. Mercy Medical Angels, Air Charity Network, Angel Flight, and National Patient Travel Center are a few to get you started. Grants are available to help with the financial strain. TACA, ACT Today, Autism Cares, NAA – Helping Hand Program, and TMR are a few. Please verify if your family qualifies.
4. Use your time wisely. Remember to use your doctor for their specialty. If they are a neurologist stick to neurology. If they are an immunologist stick to immunology. Take this opportunity to pick their brain in the area they claim expertise. You will never find a doctor that knows EVERYTHING. Our children require a team approach. (This might have been one of the most difficult things for me to accept.) Also, I would recommend bringing an adult with you to help with the children. In our case my husband had to take off work. Like thousands of families we do not have any support from our family. Many times you will wait hours to get into a room. Plan ahead for this. These small humans will get tired, hungry, and need to use the restroom. There’s a very high chance ALL of these needs will need to be met at the exact moment the doctor enters the room! You might also consider checking if there is a fellow warrior in the area at the same time as you. Maybe someone lives in the area that can help for an hour or two. It can’t hurt to ask around.
5. Make notes. You think you’re going to remember every detail from these major doctor appointments but I promise you will not. Take the time to jot down your top 5 discussion priorities before you leave for your appointment. Then while you are discussing those topics take notes. If the doctor doesn’t object I would request to audio record the visit. It is so difficult to wrap your head around everything and remember it while you have a child trying to run down the hall while stripping off their clothes. (Speaking from experience again here.)
6. Display confidence in your decision. Last, but certainly not least. If you have a family member that can’t hide their facial expressions my best advice is to LEAVE THE PITY PARTY IN THE CAR. You have most likely waited over a year for this appointment. You have sent records. You have trekked across the country. This is the moment you’ve been preparing for because this is what your child needs to get well. Yes, we feel sorry that our children have to do labs and of course we want to take away all their pain. You have made the decision that this is a stepping-stone to reach your goal. The process is by no means always pleasant, but it IS necessary. Let’s just say my husband hasn’t been allowed in a laboratory with Olivia since that very first visit. His presence alone is just not what’s best for her. I’m happy to let him manage the prize bin and high fives at the finish line.
I’m happy to share that Olivia has been a huge responder to medical treatments despite the fact that we didn’t begin until she was almost 10. Yes, I said 10! I can’t even believe I’m talking about the same child that we have the pleasure of raising today. We have since traveled an additional 8 trips for appropriate medical care. Our last trip I decided to attempt solo for the first time and found myself not having a single concern. Olivia was a joy to travel with. We had a great conversation in the car about how this driving nonsense was for the birds. We decided we were both ready to fly from now on. She also sat by herself for her labs. She made sure she told the nurse exactly how she felt but the usual army that’s been required in the past to “keep her still” was able to stand down and instead offered support by cheering her on.
If you have a child with a chronic illness, development issues, or autism you might find yourself needing to travel out of state to visit a specialist. The need for the visit can be stressful enough but the travel doesn’t always have to be. Many of us travel around the country to ensure our children receive the best possible medical care only to find out when we get home that we could have made things a little easier for ourselves. Traveling can be emotionally, physically, and financially draining but it doesn’t have to be with a little preparation. The most important thing to remember when traveling is that you are doing an amazing job. You made the appointment. You got in the car. You are one step closer than where you were yesterday. I feel very confident in saying that it is NEVER TOO LATE!
I’d love to hear from everyone else. What tips can you share for a smoother travel experience? Please leave your ideas in the comments below.
Nikki Tomczak is co-organizer of the Autism Is Medical Houston support group, webmaster and social media director for autismismedical.com, and mother to three children ages 19,14, and 12. Previously a patient coordinator, Nikki now spends the majority of her time researching and coordinating appropriate medical care for her youngest daughter Olivia. Olivia’s complex diagnosis consists of Mitochondrial Disease, bowel disease, autonomic dysfunction, sleep apnea, and developmental encephalopathy, which are a result of a severe adverse reaction to her vaccine schedule.
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