I care what people think, a lot!
It’s a blessing and a curse.
For those new to my blog I’ll quickly recap. My 8 year old son, Brian, is an amazing little guy that happens to be nonverbal, autistic, has a partial duplication on chromosome 16 at 16p11.2, has OCD, ADHD, Pica, Epilepsy, Hypotonia, and an incredible amount of awesomeness.
I have 8 years experience finding the best specialists for my son. When we were stationed in Germany, I flew back to the United States several times and took my son to see some of his first specialists at The University of Alabama in Birmingham and was very pleased with his geneticist and neurologist. We were then stationed at Ft. Drum, NY. We saw several specialists in Syracuse but when I wasn’t pleased with a neurologist there, I started taking my son to Golisano Children’s Hospital at The University of Rochester Medical Center. It was almost 3 hours away from our home in Watertown, but it was worth every single mile when I knew I was taking my son to see the best of the best. Brian saw a geneticist, developmental pediatrician, neurologist, and a pulmonologist in Rochester, NY, so you can imagine how many long trips we took for doctor’s appointments and procedures.
The neurologist in Syracuse wasn’t my first experience with a doctor I didn’t think had Brian’s best interests at heart. The first doctor I wasn’t happy with was his 1st pediatrician in Watertown. Unfortunately I was more concerned with hurting the doctor’s feelings than doing what was best for Brian. This is where the curse appears. NEVER put someone else’s feelings higher than getting the best healthcare for your child!!! I can’t stress that enough!! Many times parents are bullied by egotistical physicians that talk down to you as if you are some insignificant dust lurking on the floor. If you happen to come across one of these doctors, RUN AWAY AS FAST AS YOU CAN!!! One of the most admirable qualities I find in a physician is when they admit they have no idea what is going on with your child but they will help you search for answers to provide your child with the best healthcare possible. With Brian’s 16p11.2 duplication being so rare, most specialists have never heard of it besides the occasional geneticist. I have to educate them on what I know about it and give them information of where to go to learn more and that’s ok. Physicians that want to educate themselves on my son’s duplication impress me even more!!
The final straw I had with the 1st pediatrician was when he told me early intervention was a waste of time and worthless!! My son didn’t walk until he was 21 months old and he still only says a handful of words at 8 years of age. Brian received early intervention from the time we arrived in NY (before he started walking) until he started an integrated preschool for special needs children. He received speech, occupational therapy, physical therapy and later a toddler social skills play group. Early Intervention makes a HUGE difference and is critical for our children!!
After that comment, I decided to change to another doctor in the same practice. I was happier with this pediatrician but ran into another roadblock when I mentioned that Brian’s Developmental Pediatrician gave us information after she diagnosed him with autism on December 22, 2009. She told us there were a number of things families try, to see if it makes improvements in their child. One of the things she mentioned was a gluten-free, casein-free diet (GFCF). With a science background, I was hesitant to try anything that wasn’t ground in scientific evidence. A GFCF diet seemed innocent enough to me and I decided to try it to see if I noted any change in Brian. I tried it for 7 months and didn’t notice any significant change so I put him back on a regular diet. When I mentioned trying the GFCF diet to his 2nd pediatrician, he said he was going to write in Brian’s medical records that he was against the GFCF diet and didn’t agree with me trying it. When I tried to discuss how easy and noninvasive it was, he immediately cut me off. I knew then it was time to look for a new practice and a new pediatrician for my son.
To let my readers know that are also autistic parents, besides the GFCF diet, ABA therapy and social skills groups, I have never tried any other interventions with Brian. He’s had music therapy and hippotherapy as well, but we’ve never taken him to a DAN doctor (or whatever they are called now) or tried biomedical treatments. While they may be the right path for some people, I don’t believe it is for Brian.
For those living in Watertown, NY, I’m about to give you the name of the best pediatrician EVER! Dr. Josiree Ochotorena at Child & Adolescent Health Associates is worth her weight in gold. She always went above and beyond with Brian and Molly and we miss her terribly! Since Brian was an infant, I’ve been trying to tell the specialists that I thought Brian was having seizures. The only people to witness Brian’s absence seizures were Brian’s teachers, aides and myself. I took Brian to Dr. O’s office one day when he was lethargic and in and out. Every time he would come to, he would be combative and cry as if he were in pain. She realized he was having seizure after seizure that day and called an ambulance to pick him up from the office and take him to the ER because she didn’t have medication to stop the seizures. She called us at home several times to check on him and had always done that if she knew either child had been really sick. Beyond figuring out that he was indeed having seizures, she was so attentive to details and remembered the history of both of my children no matter how involved it was. She was an advocate for Brian and insured that Brian received everything he needed to be healthy and succeed. So far, she has been irreplaceable.
Just one more thing in regards to traveling to great lengths to find the best specialists for Brian……As many of you know Brian had a growth on his face that started after we began patching one eye before he had eye surgery for strabismus. We saw so many specialists to figure out what the growth was on his face and didn’t get an answer until we traveled to NYC to meet with one of the top vascular surgeons in the country. Dr. Milton Waner looked at Brian and wasn’t sure what was on Brian’s face until he operated, took a biopsy and surgically removed the growth. It ended up being a lymphatic malformation.
After everything we have been through, I will never stop fighting for and advocating for my children!!!
I refuse to let the feelings of others get in the way of making sure I have the best doctors taking care of my children!
I waited way too long to switch doctors the 1st and 2nd time with Brian, and I’m not making that mistake again.
All of that to get to the original topic of this post……Fox Army Medical Center needs MAJOR improvements!!!!
The history of Brian’s care at Fox Army summed up quickly:
We lived off post in NY and were given the option of being seen on or off post. We chose to be seen off post. When we moved to Huntsville, I requested that we be able to be seen off post and my request was denied. I explained to Mrs. B that Brian had a rare chromosome disorder and that he would need to see several specialists. While I’m sure the Army physicians receive adequate training for their jobs, seeing a patient like Brian is rare for them. That’s why I was asking to find a pediatrician off post that had more experience with special needs and the different issues Brian has. I begged and pleaded to be seen off post but was denied.
Brian was assigned a Primary Care Manager (PCM) when we arrived in Huntsville at the end of July 2012. We’ll call this pediatrician, Dr. W. Brian NEVER saw Dr. W because Dr. W was apparently on her way out (I’m not sure if she was moving or retiring). Instead we always saw Dr. X. Dr. X didn’t work full-time but she was always good about getting referrals put in for Brian and seemed to listen to me. I believe Dr. X realized I had done my research and I knew what issues Brian might be facing in regards to his 16p11.2. Luckily that is because a research group has been researching 16p11.2 duplications and deletions. There is also a group of families that talk on Facebook and we compare notes and share them with the researchers so they know what areas might be good to research. They have a little over 100 individuals registered with Brian’s 16p11.2 duplication in the entire world. Even though that is the case, Brian’s duplication is larger than most and is only comparable to one other person’s genetic makeup in the NCBI’s database. He’s rare indeed!! So Dr. X was great with referrals but I didn’t feel as though she had a good bedside manner with Brian. She didn’t seem to have much patience with Brian’s autism traits of not sitting in his chair, trying to take her chair, moving nonstop, etc. Still, she got things done and I liked that!
Then Dr. Y comes to Fox Army and becomes the new full-time pediatrician. Seeing as Dr. W has never seen Brian and is leaving and Dr. X is only part-time, Brian and Molly’s PCM was changed to Dr. Y automatically without my knowledge ahead of time.
I take Molly to see Dr. Y first. Molly was having issues with her stomach and was chronically coughing and had a horrible chest cold that wouldn’t go away. She was also complaining when she went to the bathroom. Dr. Y tested Molly’s urine and everything came back fine but she was still complaining. He decided to look into celiac disease and tested several other things. Unfortunately Fox Army’s lab lost Molly’s blood sample for celiac and we never got the results. The blood draw had been really traumatic for her (they missed the vein and stuck her several times and moved the needle around to try to get it in the vein), so I decided not to have her blood drawn again for another celiac test. Dr. Y did prescribe inhalers for Molly and they have greatly improved Molly’s breathing and coughing. I am very grateful for that!
One thing that drives me crazy is that whenever I take Molly to see Dr. Y, he never remembers her history and we have to remind him what he’s done in the past. I’m not sure why Dr. Y doesn’t review patient’s records before he calls the patient into the exam room, but this is a HUGE waste of time for everyone. Maybe Dr. Y is overworked because he’s the only full-time pediatrician that Fox Army has? Or maybe he just thinks that most children are there for the typical cold, flu, etc and reviewing their records isn’t necessary? I’m not sure, but not reviewing the patient’s chart is unacceptable, especially when one of my children currently sees almost 10 specialists! Molly went to see Dr. Y because she had a rash that was on her face and several things had been going around her preschool including strep and Hand, Foot and Mouth disease. The nurse took a sample for a rapid strep test and Dr. Y didn’t have the results when we left his office. He told me he would call me that afternoon to tell me the results. He never called. I was irritated but figured he was probably busy. He didn’t call the next day either and I assumed maybe it was because it was negative. The third day she was feeling worse and complained about her throat hurting, so I called Fox Army back and requested the results of her strep test. I was told Dr. Y would call me back. He didn’t. The 4th day I called again and insisted that someone call me with the strep test results. I finally got a call back from the nurse saying it was negative.
Getting test results shouldn’t be that hard.
Last week I knew I had to call in a refill for one of Molly’s inhalers because it was running low. I finally got around to it on Thursday evening and realized that the inhaler didn’t have any refills. Friday I was so busy and finally got around to calling Fox Army at 3:45pm to request a refill on Molly’s prescription. I had enough to last until the next Wednesday night. When I called at 3:45pm, I was told I was #1 in the cue and so I waited on hold for 15 minutes and it kept saying, you’re #1 and we will get to you as soon as possible. No one answered. The clinic closes at 4pm and I imagine the operators might have gone home a little early. This is the SECOND time this has happened to me on a Friday afternoon. If everyone goes home at 3:45, then don’t advertise that you’re open until 4pm.
Monday and Tuesday were holidays at Fox Army.
Today, Wednesday, November 12, 2014, I called the Fox Army line and told them what I needed. I was told the doctor has 72 hours to respond to messages. I told the operator that my daughter needed a refill for her inhaler by tomorrow. I was told that didn’t matter, the doctor still had 72 hours to respond to my message. She then told me I could go into Fox and fill out a medication request form that they could give to the nurse. I went to Fox Army at 11:40am today. I filled out the request form and then was told the doctor had 72 hours to respond to my request. I reiterated what I had told the operator on the phone. The receptionist then told me she would give the message to the nurse. The nurse told her to tell me that Dr. Y was with a patient but would get to it once he was done with that patient.
I’m waiting and around 12:30pm the nurse comes out to talk to me. She said sorry but Dr. Y was at lunch and it would be after 2pm before he would be back. I explained that I HAD to get my daughter’s inhaler and that I had tried to call on Friday afternoon, etc etc etc. I told her I was most likely submitting an ICE complaint and she went back to see what she could do. I’ve never submitted an ICE complaint before in my husband’s 11 1/2 years of service, but I ended up submitting my first one tonight regarding Dr. Y and Fox Army Medical Clinic.
In the meantime, I went to the pharmacy to pick up other prescriptions that I had called in to be refilled. If anyone is taking note of ways they can improve Fox Army Medical Clinic, why does it take 4 days to get a prescription refilled? Several of my son’s seizure medications and OCD medication are not available at Fox Arm, so I fill them at Target. Target takes a few hours to fill refills, not 4 days.
One of my main problems with Dr. Y is regarding Brian. I finally take Brian in to see Dr. Y. I explain Brian’s history and that Brian is nonverbal along with so many other things. He has seen Brian several times. Every time I take Brian to see him, it’s like we’re seeing him for the first time because he doesn’t remember any of Brian’s history. I know Dr. Y is probably busy since he’s the only full-time pediatrician at Fox, but a doctor should be given enough time to review the patients medical record before they see the patient. I’m not sure if Dr. Y isn’t given this time or if he just doesn’t review it.
During Brian’s recent visit, it was crystal clear that Dr. Y doesn’t read the reports sent to him from all of Brian’s specialists. I took Brian for a well child checkup since he recently turned 8. Dr. Y said Brian was growing great and looked good. I told him that he may be growing but he is currently being seen by a gastroenterologist, an endocrinologist and a geneticist to determine if there is a fixable cause to his slow growth and short stature. He is being tested for Hirschsprung’s Disease to see if that could be a cause for his slow growth and bone age being so behind his chronological age. I asked Dr. Y if he had read any of the notes from Brian’s specialists? He began looking through his records and it was abundantly clear that he had no idea what specialists Brian saw and for what reasons.
This is what I find most unacceptable about everything!
Fox Army Medical Clinic needs some major improvements before I will feel like they are adequately equipped to care for my children.
Do I have the choice of being seen off post? Apparently not!
In the meantime, I asked for a new PCM for both of my children. Brian and Molly will now see Dr. Z who is only part-time. She works 3 days a week. God forbid my kids get sick on the two days she’s not in the office…….
If Dr. Z doesn’t work out for my children, I won’t be silent until I’m given the option of taking my children to a pediatrician off post!