Defense Health Board Seeks Comments on Pediatric Care

Military Kids Health Care

Have you faced problems getting your child an appointment at your military clinic? Had TRICARE deny a claim for services your child’s doctor ordered? Faced obstacles in finding pediatric specialty care providers who take TRICARE patients? Now is your chance to provide feedback to the Defense Health Board!

The Defense Health Board (DHB) is a Federal Advisory Committee charged with providing independent advice to the Military Health System. The DHB just announced a December 14 meeting where they will collect public comments regarding pediatric care. 

We encourage you to share your stories so the DHB can understand the challenges families face with getting appropriate, timely health care for military kids.  

Share your detailed story or experience with pediatric care in the comments section below and NMFA will incorporate it into our written statement, which will be shared directly with the DHB.

The DHB looks at the entire Military Health System and want to hear your experiences at military clinics and hospitals, and your experiences in getting care with civilian providers in the TRICARE network. 

NMFA is aware of numerous challenges military families face in getting the best health care for military kids. For the past several years, our Association has been part of the TRICARE for Kids Coalition fighting for improvements to pediatric care within the military health system. We know that personal stories have a huge impact and thank you in advance for taking the time to share yours! 

Posted November 30, 2016


From: Angela on: December 10, 2016
My only complaint is the recent changes to the Tricare remote distance rules. In terms of our Pediatric Care, we were referred to a place that would take more than an hour and a half to drive to each direction. This forced us to switch to standard, because our son had broken his arm and between the travel and a 10-day wait to be seen, the availability of care was not appropriate to the injury. I think that removing travel time from the prior Tricare remote rules has a negative impact for people with children. Now we are forced into the situation of paying for coinsurance.
From: Jodi on: December 10, 2016
Our biggest issues have been getting services when we are pcsing. My son has autism, when we move next summer, he will wait over 6 months to see specialists. He regressed so much last time that he was at grade level and started functioning at an 18 month level. Also the military does not consider education as a factor in moves. We have moved with medical services, but the schools are horrid. With special needs it is cumulative education is as important as medical.
From: Jane on: December 2, 2016
We have had many problems getting appointments when needed with the kids but 2 of the major ones are when my daughter had her finger lacerated and broken and we went to the ER she had it stiched back on and was supposed to follow up on Monday. This was on a Saturday that it happened. Of course she could not see a dr until her physician sent in the referral and then it was approved so it was Thursday before we could see them. Thank God her break was clean and they didn't need to do surgery or rebreak it to straighten it. Next case is my daughter was diagnosed with severe scoliosis in 7th grade. Was sent to a specialist then we moved over seas. While over seas her curve worsened. 2 drs in the country where we were recommended surgery as did her specialist in the states when sent him the records we then were sent to Landstul 13 hrs from our base where we were told that she was now out of puberty and had outgrown scoliosis and would never need surgery. She's fine. This is our care. Moving every few years it's hard to get a dr to take you seriously and to really care. Makes you not even want to go to the dr.
From: Lindsay on: December 2, 2016
I've had countless personal experience and heard others accounts of the lack of same day appointments for little ones and being forced to use Urgent Care that is often sub par care. Pediatric care is a specialty and urgent care/ emergency department providers often refer you back to the pediatrician. In my own personal experience, my 2 year old son had open blisters on his leg, because of unavailability I went to an urgent care center. They said it appeared to be a viral rash akin to chicken pox and to see how he does and follow up with my pediatrician. I called the pediatrician and told them I was willing to wait all day to be seen if need be because I wasn't comfortable with the diagnosis. Upon being seen by a pediatrician they told me it was a bacterial infection common in childhood that required antibiotics immediately. Children come with a host of their own unique heath care needs.
From: Robin on: December 2, 2016
We were given an efmp assignment for my son because he needs a pediatric psychiatrist. We get to our new base and none of the off base doctors were accepting new patients. To make matters worse because we had been assigned an off base pcm, that was less than helpful, the base didn't want to help us. I ended up having to drive to the mental health clinic on base and refused to leave until we had an appointment and a refill for my son's medication. It's been extremely stressful especially because we were assigned here for his medical needs!
From: Diana on: December 2, 2016
I would like to address both issues. First our son was born at a Naval Medical Center San Diego. After being very ill I delivered my son at 34 weeks. He was rushed to the NICU, that’s when it started. My husband was deployed, I was told that my son had an intracranial hemorrhage, and it was normal for a baby who was premature. At that point as a new mom I was like okay, they are the doctors they know. He was also having trouble with keeping food down, I was told this was normal because he is premature. There was no support system during this time, no social worker it was me figuring it out alone. After he aspirated on breast milk; a very sweet nurse told me “If you want to get him out of here give up on breast feeding, he has to eat to gain weight.” He went on formula. Upon discharge, they did his circumcision, I called 4 times to talk with them about the about he was bleeding. Again, was told it is normal he is premature. Shortly thereafter only to be brought back for aspirating and not breathing. It was decided then at 13 days old that he had severe reflux and we should start him on cereal. Upon discharge, it was daily weight checks, and checking in with the PCM, we never seen the same doc twice. We had test after test including a barium esophagram. They said structurally he was fine, just severe reflux. We like many others had no choice but to take him to the ER when there were no appointments available. We would report to the various PCM’s about our concerns with him bruising, and were told that little kids bruise as they are learning to walk. We still thought the doctors had all the answers. We finally began chucking it up to the fact that he is very fair skinned. He would get high fevers. We had taken him in at the 11 month point again to the ER at NMCSD, they said he had a respiratory infection, they did a chest x-ray. A month later he was back again with a fever, and another chest x-ray, The ER doc walked in and said your son has a possible Cardiomyopathy, go home, and don’t worry about it. Cardiomyopathy is where the heart muscle becomes enlarged it is a cardiac emergency. Cardiology will call you on Monday. We were besides ourselves. Cardiology never called. We called and were seen, they did an emergency echo and at that point were told they did 92% of it they couldn’t find one artery and he had a coarctation of the aorta. We were becoming more educated. At the 16 month point he went limp, we were told go back to the ER. We met with the cardiologist and were told, he is fine. We asked for a second opinion. We were upset at this point and were told he is fine. When my husband who is active duty questioned this, he was told “You can tell me what is wrong with your son when you have enough rank on your shoulders.” That was it. We were over it. We left Tricare prime the next day. Our sons care was taken over by civilian providers at the local children’s hospital. Within months of transferring we met with a civilian pediatric cardiologist. It was the first time someone had taken the time to listen. He was a third year and said “hold on I need to go get the attending.” After several tests including the barium esophagram (same test done by the military) it was found our son had an aberrant right subclavian artery, (an artery came off the opposite side of his heart and was wrapped around his esophagus. It wasn’t reflux it was structural. He was unable to eat, and was barely on the weight charts. He had cardiac surgery to repair his artery on Valentine’s day that year. He had to have his tonsils out, and nosebleeds started. The difference was that instead of military health care we had civilian and they listened, we had the same pediatrician. They sent us to hematology. He had a bleeding disorder. Looking back, we should have questioned his care much earlier. After transfer we were on prime again, this time the doctor tried to help, but finally looked at us and said nope we can’t see him here it is too much work, and we do not have the staff. He fell and hit his head at school so off to the ER we go. They requested a CT scan, and found an abnormality. The neurosurgeon felt an MRI was necessary, so they put in the referral. I received the approval and was on the way home from the hospital and stopped to grab the mail. There was a denial for the same procedure that we had just completed. I called and the customer service person said its fine no worries. I received a bill for $5300.00 from the hospital. I appealed and appealed. He does in fact have a confirmed diagnosis of a brain abnormality from this MRI, but even with an approval Tricare never paid it. It took a while but we were able to pay it. Next duty station, the clinic flat our refused to take our son at all, but they didn’t bother telling us that. We tried to get an appointment for referrals and were told we won’t see him. We had amazing care there. It was constant fight with tri-care. The transition process was a mess. We lost our case manager and were re assigned to an Autism case manager, who told me she had no idea what we were taking about. Fighting to get what he needs every step of the way. They decided that the needed to do his genome sequencing to figure out if there was more going on. Tricare doesn’t pay for that. So we did. Now to our current duty station. Moving was terrible, we could not get specialty appointments for the new hospital until we were her and on Tri-North. This made several delays in his treatments. Calling cross country during a bleed was not an easy thing to navigate through. We me the team at Walter Reed Medical center. During a several hour-long appointment, the leading doc assured us we would have a point of contact who would be consistent. A few minutes later told us she would be interning at several of the local hospitals. Then we went on to talk about his history and diagnosis. The doc made a comment “if this is even real” That was it. Our son has had some of the best doctors in the world working on his case. Stanford, UCSF, Seattle, UC Davis, and to hear a doctor who has only worked at the military hospital says this I knew this was not the right place for our son’s care. Back to Standard we went. Now we drive past it almost 80 miles for each appointment, but at least I know that he is getting care, we are dealing with the same team.
From: Heather on: December 1, 2016
First, I want to know why you recommend that we have a physical every year? You even require my soldier to, yet my boys because 2 are over 12 can not have a yearly well check physical even if school requires it (sometimes it has nothing to do with sports, but with changing states to a new school system due to a PCS - thus your fault, yet Tricare wants me to pay!). My oldest is a T1, so we go in to see out ped for a "diabetic well check" and my #2 got his this year for a "diabetic check." You grow so much and change so much in your teen yrs, it shouldn't be something I have to search ways to get a well check. They say you get them if an immunization is needed, but how am I suppose to know? I've heard they are adding them, yet our ped office said it has not been fully approved and talk about Tricare cutting them for even those 6 and up now instead of 12. - - I haven't had issues w/ finding providers for my boys. In fact, I know the radius they have to be in and check it with every set of orders my husband receives to Tricare's website. The issue with that (and that I see with comments above) is the branch managers DO NOT EVER check with EFMP before writing orders. When we bring it up for posts that we know do not qualify, they end up checking and EFMP denies the orders and branch has to rewrite new ones. Why do we have regulations and all the extra paperwork with EFMP if they are not going to follow them? - - On post we do well as long as there is a connection from our PCM to our endro (my oldest is a T1 and my youngest is a pre-T1). Problem with that is there are only 4 ped endros in the entire military and finding a PCM that is friends with 1 of the other 34 in the nation (we had that 1x) is very rare. My child has almost had his appendix removed, was misdiagnosed with several issues which were then check out to be false, has been treated for T2 instead of T1, and more. Learned where the patient advocate office was quick. We ended up being moved off post to a PCM who was able to communicate with our specialist. At our current post, we are Tricare Prime, but we are still off post with a PCM who is in the same hospital network as our endro. Communication is so much better as both specialists (he has 2) and his ped can see what each other are doing and make correct decisions. Communication from on to off post is almost non-existent and it takes forever to pass records. We are suppose to see a nutritionist 1x a year. When I tried to here at Hood, we had to see one on post instead of at the endro's office. She had no clue what to do with us and couldn't even find my boys in the computer. Was unable to get copies of his records since he hasn't been seen on post for about 7yrs now. - - Prescriptions are becoming a joke! Why would you take the lower # of a prescription and count it for the total for a 30 day supply? I've talked to several pharmacist including on post and they all say if the prescription says "1 to 2", you get 60ct for a 30 day supply. Express Scripts says you only get 30. So, for my son's test strips that come in packages of 50 or 100, we have to pay double the copay for 5 or 6 boxes or get way under the amount of only 4 boxes because at 8 to 10 tests a day they say we can only have 240 strips. His doctor changed the script to 10-12 just so we could get 6 (300 strips for 10 per 30 days) at a time. I have several other friends with the same issue, especially w/ inhalers because they have more than "30 puffs" of treatment, yet are also not carried on post as an option. Not sure how they want the pharmacy to split an inhaler. I've taken the issue as far as the head COL who still hasn't got back with us and I think is not going to. It went that far, because everyone we have talked to (pharmacy, Tricare Benefit office, Advocates, etc.) all agree this is wrong, but don't know how to fix it and send us to the next level above them. Also, I shouldn't HAVE to pick up insulin on post only. Our endro was furious over that. Our only choice under Tricare policy as of last year is a MTF or Express Scripts. Express Scripts can't send insulin through the mail. Even w/ dry ice, it doesn't keep it cold enough, doesn't get here fast enough, and then you are going to place it on our door step in the TX sun. Having 1 provider to pick up a prescription that is life or death is unacceptable! When we retire, we are going to have to drive around 2 hrs just to get to the nearest MTF to pick it up. - - Lastly, if you want to save money, why do they keep sending me "Personalized Health Information" forms every month almost? They tell me the same thing every time, nothing new that I don't already know, and to have things done that Tricare already paid for. They're trash, so save the $ discontinuing them.
From: Whitney on: December 1, 2016
We are at Fort Hood and have been here for for years now. When we got here there were three or four pediatric clinics that you could only get in a month from the date you were calling if you were super lucky if your kid was sick it was impossible to get in. Now four years down the road we are down to one clinic for all family members not just children and it takes almost as long to get in still. If your child needs to be seen by a specialist of any kind we are sent to a completely different hospital that is 45 minutes to an hour and a half away depending on traffic and the time of day. Then with this alternative hospital they will bill you wrong so that tricare doesn't pay all of it and wanting you to pay a major amount of money because they are billing from the hospital not the specialty clinic you were seen in. They just built this giant brand new hospital here at Fort Hood the least they could do is bring in more medical staff so that we aren't having to wait 2-3 weeks to be seen sometimes longer depending on the time of year. We never see our actual PCM in fact I don't even know what our current provider looks like.
From: Kami on: December 1, 2016
We are at Tinker AFB in OKC, OK. Tinker has a brand new clinic that is even LESS efficient than the old one. My kids and I were forced back to using a base PCM when our off base civilian PCM passed away unexpectedly in Nov 2014. Since then we have not had the same PCM for more than about 6 mths. Every quarter my daughter, seen in the Peds clinic, has a new PCM. How are we suppose to get continuity of care if she never sees the same doc twice even in the same year. The worst part is we all see base CIVILIAN docs, so it is not like they are deploying all the time! So what gives? We have to get approval to go to Urgent Care or the ER unless it is nearly life threatening and even when we do and are told to go see a specialist for whatever issue or injury that occurred, we are then made to get an appt with our on base PCM before they will even submit a referral to the specialist! It took ELEVEN days from our recent ER visit for a broken wrist to get to our off base orthopedist!! By the time we did get into them, they were not thrilled with how long my son had been in a splint! All this when the base ortho had no available appts for if that was the case, why make us come in at all when you KNOW you have no available appointments! The idea that Tinker Med Group cares about quality of care for ANYONE is a joke! My active duty husband has been forced to go to a med board for the same issues repeatedly even though he has been cleared multiple times to go back to duty. Then they demand he run all over the place getting them records, documents and other such nonsense and tell him that he HAS to bring it all to the clinic so it can be sent to the med board people immediately and then call and tell him he has to come to an appt with his PCM so he can give the same info to her so she can give it to the med board??? Why are they making him make 2 trips to base in the middle of the day (by the way he works nights and sleeps during the day and they complain that they can't reach him by phone....HE IS SLEEPING!! He has told them multiple times that if they call before 8am or right at 4pm then they will reach him or if they would bother to LEAVE A MESSAGE that he will call them back, but they never leave a message or better yet call me so I can help them! Guess what the number one issue he is being med boarded for??? SLEEP APNEA! Not to mention his off base doc for his sleep apnea is a jerk and refuses to listen to him about anything. He switched his sleep apnea machine to one that makes it impossible to sleep and he has begged repeatedly to go back to the old style and the doc refuses even though the old ones is HALF THE PRICE as the new one.) I would be here all day if I keep going, but the main point is that Tinker has NO continuity of care at all for anyone. Civilians, Active Duty, Retirees, doesn't matter. Tinker Med Group is a joke.
From: Melissa on: December 1, 2016
Fort Bliss has been by far the worst in regards to specialists accepting Tricare in general, even for adults. I'm not sure how many times I've called an office hoping to make an appointment only to be told they don't accept the insurance. Oddly, Tricare approved an authorization to a pediatric neurologist that didn't even accept Tricare! I'm not sure how that would have even worked, but we didn't want to risk having to pay and instead, chose another neurologist. Here, there are only two in the area so if we weren't happy with the care or if he decides to leave, we don't have any other option without traveling and being on Standard, it would be out of our own pocket which we cannot afford. The pediatric dermatologist doesn't accept Tricare and the dermatologist that I found that offers the treatments he needs only accepts Standard. My son needs to see a dermatologist, ophthalmologist, and neurologist because of a vascular birthmark on his face that could affect his brain (seizures and learning disabilities) and eyesight (glaucoma). It was 5 weeks to see the dermatologist, 7 weeks for the ophthalmologist, and 3 for the neurologist and that is after the week waiting for authorizations. I know since there aren't many pediatric specialists, wait times can be long, but when so many of those don't accept Tricare, it makes things that much harder.
From: Gaelle on: December 1, 2016
For me, my WORST experience with trying to get my daughter medical care was when she began vomiting in her sleep around 5am one morning in March. She was throwing up every 10-15 minutes, so I called Nurse Advice Line. After taking a detailed statement they advised me that Tricare don't count vomiting per episode, but per every 20 minute time frame. So as my daughter was vomiting twice within a 20 minute time frame it was counted as ONE EPISODE of vomiting, which meant she wasn't entitled to an urgent care referral -and I was told that ER wouldn't be able to help her as she wasn't classed as an emergency... I was advised to wait until a 9.30am appointment with her PCM. By the time we got to her appointment she had been vomiting every 10-15 minutes for OVER 4 hours, and within minutes of her PCM walking into the room my daughter lost conciousness and had to be hooked up to an IV for four hours. Being a first time mum, i trusted the NAL to give my sufficient advice about my then 1yr old daughters well-being. Upon speaking to my daughters PCM during her extended stay at the on base clinic, I was told that we should have been advised to call an ambulance and get her to the ER.
From: Megan on: December 1, 2016
I have two children with special needs specifically a rare progressive neuromuscular syndrome. Our doctor was at Eglin AFB. We loved our doctor but every time they got sick we had no where to go but the ER. To get an appointment with our pediatrician was 3 months out. The ER at Eglin did not have a pediatrician on staff so. It only did they have this complicated medical history they wouldn't even see a pediatrician. We switched 2 years ago to Tricare Standard and go off base now. We get an appointment with a pediatrician in the same day. We have been to the ER once that required an ambulance ride. All their medical history is in the same computer system at the pediatrician even if we see another provider at the same clinic. The continuity of care is always there and they have Saturday and Sunday hours too! Military care for our sick children is so behind the times. I would not recommend it to anyone. Also the base pediatrician did not know how to put in a Rx to Express Scripts. He was head of the pediatric department. So huge disconnect between what the politicians are trying to do to save money and what is actually being done at the clinic level.
From: Jessica on: December 1, 2016
We are stationed at the NRO in Chantilly, VA. The MTF was full upon arrival so we see a civilian pediatrician which is amazing since it is so close to our house (The closest MTF to us is Fairfax and it's about 25 miles away and an hour in traffic). I successfully self-diagnosed my child with Tethered Cord Syndrome when she was 14 months old. It is rare and convincing pediatrician's that she had this was tough. It took threes different appointments with three different pediatrician's to acquire a referral to a pediatric neurosurgeon. That first neurosurgeon said her MRI was normal- tethered cord is rare and can go undiagnosed for years when not detected. We sent her scans to top rated neurosurgeons in Boston and Chicago who both said that Sadie has a tethered cord and needs surgery immediately to prevent paralysis and incontinence. Tricare Prime and Tricare Prime Travel authorized the referrals without issue. Our insurance has been amazing! It was acquiring the proper referrals that was difficult. The whole process could have moved along much faster if it wasn't for that! Thanks, Tricare!
From: Erin on: December 1, 2016
There are three installations here in Beaufort, the air station, Parris Island, and the naval hospital. They have ONE pediatrician at the naval hospital to serve everyone here. Needless to say we never know which doctor we are going to get. Which is extremely frustrating having to explain your child and their history everytime to someone new. They also have no baseline to compare when treating our children. My son recently had pneumonia. Took three days to get him on a treatment schedule, mainly because he didn't see the doctor who diagnosed him til 48 hours after the initial diagnosis. Had he been able to see his pediatrician the next day we would have been 24 hours sooner in getting his regimen started. But he saw someone else who had never seen him before and didn't want to "overstep". 24 hours of extra fluid in his lungs. We are very lucky his was a mild case. One pediatrician is not enough for this area. Especially when they are bringing in more members. How can we qualify for DODEA schools at but only one pediatrician? That math just does not work, and our children do suffer from lack of inadequate care, and not at the fault of the doctor. The pediatrician is excellent, this is the best care they have received in the past 3 or 4 years. They did have an NP but after comparing to an actual pediatrician there is no comparison. However, one is not enough, and the hospital either needs more pediatric staff or they need to do away with the department altogether and send us out in town.
From: Denise Mahala on: December 1, 2016
First let me say getting an appointment at the lower 48 bases is way easier now then it was 20 years ago. That being said my first problem started in getting an appointment while stationed at Eielson AFB, AK. There isjust not enough staff there. The fastest appointments were in two weeks, which doesn't do any good if your child is sick now. There are no specialties and even if there were I was told there were a lot of hoops to jump through before I could get a referral. My son had chronic sinus infection and migraines and missed 3/4 of the school year but he still was not able to get a referral for an ENT. He did however get a Neurology referral after 7 months and after the doctor at the base clinic refused to see him anymore. My second problem came when we PCS'd to Quantico. Like I said it is easier to get an appointment down here, usually within 48 hours. However once we got here we were told we would have to start the diagnosis process over again with new doctors even though by this point my son had a diagnosis and was on EMFP. After having a headache for 5 weeks straight we were finally able see a Pediactic Neurologist. But before we even sat down in his office he told us he did not have time for us and before he would even try to help my son he had to see a Psychiatrist , the closest of which is two hours away, because without even talking to us he made the diagnosis that my son has been faking his illness for the last year. So now my son is in his 11th week of the same excruciating headache that keeps him his room until the sun sets, he is unable to attend school, and we are traveling 8 hours a week to a headache specialist and paying out of pocket because no one here is willing to help. Tricare does not cover any headache treatment except Botox which only masks the pain for a little while. They do not cover any treatment that actually treats the cause of the pain. My son was diagonsed with TMJ which is not covered at all.
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