Lance and the neurologist

I finally decided that I have had enough of Lance’s headaches. Daily headaches are no fun for anyone. I know, I have experienced them before. To watch them in your child is just brutal. It is heartbreaking. You want so badly to take that pain away but when everything fails to help, there is nothing you can do except pray and take action.

I had previously asked my neurologist, Dr. Pamela Blake, the last time I was in there office (just a couple of weeks ago) if their office saw children. Unfortunately, they do not. I would have just taken him there as I have had very good results with her. They start seeing children in their late teens, but they do not see children as young as Lance. They referred me to a doctor down at Texas Childrens Hospital in the Medical Center but they were not certain that he was still working out of that particular location. I could not find him on our insurance.

So I had to start a search for Pediatric Neurologists and Child Neurologists as they are sometimes called if they see older children. I thought this would be an easy task as seeing with live in the far north west out skirts of the major metropolitan Houston area. At the very least I should be able to find some in the Medical Center even if I wanted to avoid the drive.

I figured I would start with our insurance as this would be the most affordable option going in-network because we have a relatively high deductible for the year. The only time we have met it is when Lance had 2 ER/urgent care trips within a week of each other about 3 years ago. He met it by February 1st that year. That being said, I am well versed in what a neurologist costs because I make regular visits to mine and they are not cheap. I also knew that they often request up front tests for their preliminary work-ups. I knew that this could be a costly undertaking to take Lance to a neurologist. This is one of the reasons I have not changed neurologists yet because finding a new one is not as easy as it may seem. It can cost you time, money, and frustration so unless you are getting no results at all staying is often less of an headache.

In spite of all of this, I knew that Lance was going to need more help than our family doctor was going to be able to offer him. I know they were trying, but I also know that after researching childhood migraines that Lance was going to need more. I was surprised at what I discovered when doing the research. Many of his illness symptoms over the past years that we could not really explain with other things could be explained by childhood migraines. It actually saddened me quite a bit and I knew I could not let my 9 year old little boy suffer any longer.

So the search began. It actually took me a couple of days of searching to narrow down the results from the few that I did find on our insurance. Believe it or not in the city the size we live in, there were only maybe 15-20 pediatric/child neurologists listed with our insurance. Of those half no longer had working numbers on the insurance website. I had to turn to the internet and do a bunch of Google research to find some of these doctors. I found an handful at Texas Children’s Hospital in the Medical Center, about 3 in The Woodlands, about 3 in Katy, and 1 in Tomball. Of the ones in The Woodlands, they also practiced out of the Medical Center so they do not count twice. The ones in Katy also worked out of the Medical Center so they also do not count twice. Ultimately I had it narrowed down to a handful of pediatric/child neurologists that I had access to with my insurance. With my Google search I was not searching for those limited to my insurance, these were general pediatric/child neurologist searches. There are just not that many around.

I had to pick. How do you pick? I know from experience being on my 4th neurologist that it is not that easy to pick a neurologist. Sometimes you just pick wrong. Okay you do not pick wrong so much as you just may not be a right fit for a particular neurologist due to their expertise. It is nothing personal, it is just what they happen to specialize in. I kept getting referred to a different neurologist until I was referred to the one I am at now. I wanted to avoid that with my child if at all possible. I wanted results, not referrals.

I also really wanted to avoid the drive down to the Medical Center if at all possible. Lance has missed a lot of school already because of this and various other illnesses and any appointment in the Medical Center means an entire day of school missed. I wanted to avoid that if possible. I really wanted something close to home.

I called the office in Tomball. They had an appointment on May 30th. That was a little further out than I wanted to wait. I explained the situation and asked to see if there was any way we could get in sooner. They said they would have to talk to the lady that normally does that stuff but she was on the phone. They would call me back. They would see about double booking an appointment, etc. I was actually discouraged but I was trying to stay hopeful.

I called down to the Medical Center and they had an appointment on May 1st. It was in 2 days. My concern was that Lance’s Field Day at school was either on the 1st or the 2nd and I could not remember which day. I did not want to pull him out of school for the “fun stuff” because he was looking forward to it and he has missed some of the fun stuff in the past due to being sick. I asked for the next available appointment. That was May 9th. I took that appointment. Everything was fine until they asked for the referral. I am not sure why I let that bother me so much but I did. Our insurance does not require referrals for specialists. I try to get them when I can, but it is not required. This office down at Texas Children’s however requires that all of their specialists offices receive referrals. I asked them quite frankly, “why?” I received the response, “We require it of all of our specialists in the office.” Okay but all of the doctors in the neurologist office are specialists! Good grief! I was glad that I took the appointment on the 9th instead of the 1st because our family doctor was out of the country on vacation. At least I still had the option of the other office calling me back and I could cancel this one, but he had an appointment on the 9th at the very least. Remember I was trying to avoid driving to the Medical Center in the first place.

About 2 hours later, the office in Tomball called me back and said that they had an appointment for me on May 12th but it would be in their Cypress location. I was fine with that as Cypress is not too far away. It is definitely closer than the Medical Center. I took the appointment and confirmed that they would not need a referral after the experience with the Medical Center office. She verified that they did not appear to need it but she would call me back if they did. They did take our doctor’s information in case they needed it but they did not appear to need the referral with the insurance information they had. After getting off the phone with her, I immediately called back down to the Medical Center and canceled the appointment I had down there. I had this huge feeling of burden lifted from my shoulders it felt like – almost like it was the wrong fit and this was the better choice.

Of course that was not the end of this, a couple of hours later the Tomball office called me back and asked if I had received the “new patient forms” to fill out so we could have those done before arriving. I had not. She resent those via email. Then she said that they had a cancellation and they had an appointment on May 2nd at their Tomball office if I was interested in that appointment. Of course at this point I had found out that Lance’s Field Day was on May 2nd. Fortunately, the events for Field Day would be mostly in the morning and the appointment was at 2:00pm. He would only miss the very end of the activities. I jumped on this appointment….of course this meant I had to scramble to go get his CT Scan results from the imaging center and print out other things that would relevant to the appointment so that they would have them.

Here is Lance waiting for the doctor to come in…

You would never know that Lance had an headache start while we were in the office, would you? Of course, he has a hard time convincing most doctors that he is all that sick most of the time because he is just one active little boy. 
I have to admit that I was getting an headache waiting for the doctor to come in as well. I do have to give my own neurologist credit for the comfort level in her office. They use natural and soft light whenever they can. They keep the room temperature very comfortable. Everything is very comfortable for “headache” sufferers. I cannot say the same about this office.
He has this fascination with the stools in the doctor’s offices. Today he made a big discovery and realization: “Oh look it is a screw.” Thus he had to “screw” it all the way up and all the way down.
Of course he does get bored easily…he then proceeded to use it as a steering wheel and make driving noises. Reckless driver…yes…I do believe so.
The diagnosis?
Genetic Migraines
You are welcome, Lance. I am glad that I could contribute to your problems in life. The statistics and research show:
  • 80% of the time, migraines are genetic
  • if the mother suffers from migraines, each of the children has a 50% chance of developing migraines 
  • children of migraine sufferers have a 90% chance of also suffering from migraines if both of their parents suffer

It is not a fun diagnosis. It is not a diagnosis I would like for my 9 year old son to have. It is also not one that I would like for my 17 year old son to have (he was diagnosed at 16). The truth of the matter is, however, genetics are what they are. I come from a long line of migraine sufferers. My children will carry those genetics on with him. I am doing my part by taking action to get them help now so that they do not have to suffer the way that my mother and grandmother did. I am truly grateful for modern medicine and the relief and that brings me. I do not suffer like I used to. It is not perfect, but it is better than it was. I still have my bad days, but I have more good days.

At least we have a plan of action now. He goes back for an EEG in a couple of weeks. We are playing with the dose of the medicine he is on currently. He was only taking a small dose of what he was allowed to take. We are adjusting the dosage to see if we can find what works knowing that we can go all the way up to the maximum allowed dose. If we get to the maximum dose and it is still not working, then we go back and try something else. Otherwise he goes back in 6 months for a follow-up.

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