At My Wits End with doctors...help!

That is so awful! Good thing you insisted on the specialist. Are you Tricare Prime? Where is Suffolk?

I too understand the military medical problems. The best advice that I can give is to be the best advocte for your children. If no one is listening to you, you make them listen. If they don't listen go up the chain of command until someone does. It is sad that we have to fight so much for our children's health issues. The more that you can get refered to civilian care the better. Good luck!

I am so glad you got good advice and are going to hold them accountable!! That is just crazy. I am also in the tricare system and this is all very new for me. I went from having a Civilian pediatrician in Oregon to seeing a new Ped every time I went in. It is just crazy. With two little ones I finally started writing down who I didn't mind seeing for pediatricians as there have been 2-3 I like or don't mind. And now I only book appointments on-line and choose who we see. I too am sick of the tricare system. While some aspects of the care are good others are not good at all. I look forward to hearing how things go. I am sooooooo sorry your little guy had to go through that pain for that long!

I hear ya, girl! My husband is in the Air Force so I know what you mean about the military docs- some are very nice, others don't know what's wrong so they just tell you your child is fine rather than admit that they don't know and refer you for further investigation. When my daughter was about 5 months old, she began spiking these mysterious, VERY high fevers(103-105) with no other symptoms. This continued every few weeks until she was two and a half- at the time, I was working in a Peds office and had one of them take a look at her, and within a few minutes of looking at her, they said it was tonsillitis. I took her to the base clinic for another check and antibiotics- that doc NEVER mentioned all the white spots in the back of her throat, that were clearly visible! She finally had her tonsills removed and is doing great. Had it not been for the doc I was working for, she may still be getting sick.
I know AF insurance is through TriCare and there are different types- TriCare Prime patients have to use the base facilities. However, TriCare Standard patients are allowed to use civilian doctors with no referral. It might be worth it to look into switching to another insurance, or see about getting a secondary insurance. Granted, the coverage isn't always as comprehensive, but if you can get a more competent doc, I'd do it in a heartbeat! Best of luck!!

We are a military family fed up with Tricare as well. We switched to Tricare Standard and got supplemental insurance through MOAA (which is a Marine Officer's Association, but I'm sure the Navy has something comparable). Anyway, we pay MOAA $38 every three months and they cover everything Standard doesn't. AND we get to choose our providers.

We moved from the Naval Postgraduate School a year and a half ago!!

J. I would contact an attorney (I can suggest one in the VA Beach area) and in the future take your son elsewhere even if you have to pay out of pocket! My sister in law was in the Navy and stationed in Virginia Beach. She became sick and the doctors at Portsmouth told her she basically was making it up for some time and then they misdiagnosed her with fibromyalgia. When her conditioned worsened (persistent high fever) they had to admit her and after months of treating her as a guinea pig (trying all types of drug regiments because they had no clue what they were up against) they threw up their hands and confessed that they didn't have a clue what was affecting her. Finally, she was referred to John Hopkins University Medical Center, where she was finally properly diagnosed with Dermatomyositis. Sadly, Tiana passed away Dec. 21, 2006 (only 7 months after getting sick) from complications caused by the Dermatomyositis. I can't help but to blame Portsmouth for waiting so long. Had she been properly diagnosed, she would properly still be alive and her 3 year old daughter wouldn't have to grow up without her mother! SEEK LEGAL REPRESENTATION!!!!

Hi J.,

I read your story and had to respond. I don't have boys, I actually have 2 girls, but I just had to commend you on being such an awesome advocate for your son!!! In my life before children, I was a social worker and too often I met parents that did not advocate for their children or their best interest. I just had to thank you for listening to your gut and insisting on seeing a Urologist. Your son will thank you to, when he truly understands what you had to go through in order to get someone to listen to you!

As for having to return to your doctor's office, I can't imagine how you must feel. I hope they realize how wrong they were and apologize to you for making you think you were crazy! I'm sure it will be difficult for you, but try and be the bigger person when you have to see them again, but I would stick to what your gut tells you, because you haven't been wrong yet. If a diagnosis doesn't sit well with you in the future, continue to fight for your son and that is pretty much all you can do. It's a shame that there isn't another practice that you could see. Are you sure they are the only ones? I know for my insurance, there are several options. If you are military though, then I understand not having choices!

You will get through this and it will only make you stronger!

God bless,
D.

Go talk to Tri-care. If the clinic is almost full you can request a civilian Dr. My daughter had a civilian pediatrition because the hospital clinic was full. There is a Tri-care office right there at the hospital, and I promise, it is easier to go there then it is to try to deal with it over the phone. I'm so sorry your son went through this. My heart goes out to both of you. I'm with you for not liking the Navy hospitals. But there is always a way around everything if you are willing to look for it and work at it.
-a sympathetic Navy Wife/mother

i am a military wife as well and honestly do not like military doctors. the only thing i can suggest, which is what we did, is that you switch to TRIcare Standard and go see a regular pediatrician. yes, it does cost more but to me it was worth it. my boys always got to see the same doctor and it was great experience for the. we have now taken them off since they are older and see the doctor less but our 6 month old still goes there. if you think this is something you might do i can recommend a great group. i hope this helps. i'm really sorry your son has to go through this.

Good Morning J. P,
I am not sure of your religious faith, but I always seek GOD's help in those type of situations. Majority of the time if your gut is telling you something is wrong, it is! That feeling is the Holy Spirit letting you know to move on what is nudging at you. It is better to be safe and know what is going on, then not to know. Children a lot of times can't express what is going on, especially at such a young age. Mind you they don't come with instructions! They can write a lot of books on how to raise, deal, and train your child, but everyone has there own unique characteristic that will make you just throw the book away! As far as the insurance is concerned use it every chance you get! The military has good insurance benefits. If you think something is wrong and the doctor says everthing is OK, demand to see a specialist right away. You can't be frustrated with them because you still have to take the children to get their shots and regular check-ups. I pray that this will help you get through this time with the doctors. My prayer goes out to you and your son on his surgery! GOD BLESS YOU!

HI. I am also a sahm w/ 4 wonderful kids! we are military as well but go to a civilian hospital and civilian doctors! This was after all the problems i had w/ child #3 who was a premiee. i had more answers w/ the civilian hospitals when they would transfer me out due to over crowding in the NICU. my dughter was born at an army hospital but after 2wks the nurosurgen told me to take her home when he found out she was my 3rd child! have your husband goto tricare there at portsmouth and have you transfered to a civilian dr asap! that was the best thing my husband could have ever done for his family.
i wish you luck-A.

Kudos to you on your perseverance!
I'll echo the other poster:
*Write it all down - documentation is key when you start trying to bring attention to it. Everything you remember, every appointment, test and doctor's name.
*Bring this matter of mis-diagnosis and medical malpractice to the attention of the ombudsman, the Chief Medical Officer, the head of the Department, your insurance company (with names of doctors), and, if you are getting military medical care, to your congressman. Choose one person to send it to (the CMO/dept head?) and send it cc (carbon copy) to everyone else.
It is inexcusable that doctors listened to him scream when he urinated and then just let it go after a urinalysis said it wasn't in the urine!
I would also recommend checking with your insurance to see if you have other options of providers, and I would definitely never take an appointment with any of the doctors who saw & ignored your son's issue.
My husband also had surgery as an infant to open the urethra and while we have only daughters so far, that family history should be a HUGE indicator to any doctor that a problem might be structural and not bacterial if we were to have a son with a similar issue.

Strength to you, girl! Keep on top of this, especially the possible kidney issues that may have been caused by the malpractic of the original doctors. Document everything!
Good luck on your little boy's surgery this week!

Hello! I just wanted to tell you that you can change your medical facility to a different one just go to:

https://www.hnfs.net//ProviderDirectory/search.aspx?Porta...

fill it out and it will tell you other facility's that are near you. After you figure wich one you want I am not for sure if you can do it or your husband has to. I hope everything goes good with your son.

I'm sorry to hear about the ordeal you have had to go through with your son. As previous responses have said- you have to fight and stand up for your kids with the military medical system. No one is going to look out for them but YOU! The doctors and staff may "care" but not on the level that parents do and sometimes you have to keep at it. My best advice has been stated before- GET ON STANDARD!!! My husband & I are Navy brats and he is active duty, almost 20 years. I have almost always been on standard. yes it does cost more-but you make the choice of who you go to and can see the same doctor. Also, if you want to see a specialist you don't have to wait to be referred through a primary care doctor. There are tricare supplements that you can get that help with your portion for standard- ours is with USBA. It is worth every cent and gives you a great peace of mind. I hope this helps.

We are also Navy. We are in Chesapeake. There are definitely pros and cons to the whole system. We moved on of our children to standard instead of prime in order to have him seen by a dr. we liked instead of the dr.(specialist) we were sent to at Portsmouth. It costs more but some times free is just not worth it. I have found in general that with Navy med. I must be very informed and do what you have done. Demand for my child. I am the kids best advocate. Too many Dr. will treat you like you have an IQ of 10 just because you are a SAHM. I would say continue to fight the good fight Navy med is ok for most stuff as long as you stay very informed. There are some good dr. in the system. I have also been through surgery with little ones. I know it can be very stressful. The more you act like all is well the better your child will take it. I would also say make sure you have something to do while you wait. It is hard to wait. I have also always insisted on being brought back before my kids wake after surgery. It is nice for them to see mommy as they wake. Being at CHKD should be a good experience since they are so accustomed to dealing with little children. As for the incompetence you have dealt with you might consider filing a formal complaint. it can be worth the time to spare others what you have dealt with. Also don't forget the wealth of resources you have as a Navy wife. If you need some extra support on surgery day you can contact the command and ask for a chaplain to come over and be with you during that time.
love,joy,peace,etc..,

Trust your mommy instinct! You did right although I know how frustrating it can be not getting the Dr. to see what you feel. My son was dx with leukemia after 3 long weeks of me taking him to the dr. every day for his symptoms. We now go back to the same practice but I refuse to see one Dr. there. One thing I have learned is that if you ask a question and the Dr. does not understand what you are asking, think of another way to ask. If you keep asking the same question they keep giving you the same answer. I tell our Dr.’s I don’t understand and ask for more of their time so I can fully understand the procedure, etc.

It will be hard as you have to stay at PNH but keep on track of your son's health - you are his advocate! You did right demanding another opinion. Feel safe at CHKD my son has had two surgeries and they do wonderful with the kids and the parents.

As a child I had the same problem; seeing different doctors and none of them paying enough attention to my history to realize I needed my tonsils out. You need to make contact with the Patient Representive. They should be able to get you going in the right direction as to who has the authority to fix it. Write EVERYTHING down in chronological order (get a copy of his medical record) and have it ready to go. If you do not get a satisfactory solution, lobby for an exception so you can take your son to a civilian pediatrican. Good luck and be prepared to fight on.

Hi J.. So sorry your little man had to go through all that. It's heart wrenching to hear. I don't know if it's an option but can you get seperate insurance for him? A plan that would allow more flexibilty in choosing his doctors. It may cost more but if you can't trust his drs that may be the best option. I know you stay at home, but I know Macys gives PT people the option of insurance, so if working a couple days a week is an option maybe you could do that. Good Luck.

J., as a prior provider in the military health care system and then a dependent, I can relate to your frustration and disappointment. I recommend a few things. First, there should be a patient advocate available to you. If you have not yet seen them, I recommend you do. Next, request a meeting with the Chief of Medical Services, over and over again if you have to, so your case can receive its proper attention. Also, you should write your congressman or call the office and ask them for guidance in the matter. I applaud your aggressiveness during the entire matter and I'm happy your son has finally received the appropriate medical care. Your next steps to bring attention to your case may be just as frustrating, but I believe that cases like these can be learned from and prevented in the future. Good luck!

Military families that want to choose their own providers can opt out of TriCare Prime, and go to the Standard plan. You have to pay a co-pay, but you get to choose your provider. You can also pay a very small premium for supplemental insurance through MOAA (I'm sorry I don't know what that even stands for) and then they cover your co-pay. I personally have not had to go this route as we have been blessed with good peditricians, however, I've had friends who have done this and were quite pleased. Unfortunately it will take some leg work to figure out the system. Good luck.

Tami

I do have to wonder if there isn't any possible way to call your insurance company and explain what has been going on...that you haven't been listened to by the physicians there, and that now your son is having real health issues with his kidneys and needing surgery and see if they can't recomend a different practice to go to...I don't know if that's possible...

The other thing I always tell myself and other mommies--YOU MUST LISTEN TO YOUR MOMMY INSTINCT...and good for you for advocating for your son to be seen by the urologist...

Now, I know what I would do in this situation--aside from spitting brass tacks at them...I would demand as gently as possible to have a meeting with the assigned physician...explain your concerns, the fact that you've gone many times for him to be seen--AND that you told them about your hubby needing this surgery...and all of these voiced concerns were basically ignored...

Hopefully there isn't any permanent damage to his kidneys...I know how PISSED off I would be through all of this...they must know that they've wronged in this situation...get copies of all of his records...request them...bring with you to the meeting the records from the urologist. Maybe the uro will write a letter on your behalf to be able to switch practices.

Despite anything and everything, the well-being of your son is the MOST important factor here...I don't know that I'd be comfortable staying with that practice--even if it meant driving to the next county to have him seen...

I know how mad you must be, and hurt...to not be listened to by a physician is the worst...I hope everything works out well for your son...I am so sorry he has had to go through all of this....Best to you and your family...M.

My heart breaks for you. First thing is to sit down, gather records and document this experience as best as possible. Secondly, having faith in this new urologist, I would now insist all visits pertaining to this issue be with her. I am sure she will back you up by writng a docs order that is it imperative that she do all follow ups. She is aware of your sons absolute needless suffering and will probably do this for you. Because of his history of seizures I also think he qualifies to be seen regularly by a specialist and not just a general pediatrician.
Get tough Mom. Fight this battle for your son. I know you are in ths NAVY and hierarchy prevails, but this is your kid. I would be going above peoples heads. This is out and out bad incompetent care. Go to the people at the top and let them know this is not going to happen again. I would terrorize the insurance company. Ask all the right questions. But I would not take him back to the pediatric practice. If you must return to it, ask the nurses which is the best doc. They usually know and then see if that doc you will back you up on exclusively seeing your son. Do battle!

J.,
This is an issue that needs to be addressed through Tricare...because this is one of THEIR doctors. Actually, I would put in a formal complaint with the clinic, and keep going up the chain of command, as far as you need to, if you get no response. That kind of non-help is not a good option, and should be addressed immediately.
Good luck with the surgery! Let us know how it goes!
L. in VB
(Navy hubby, stationed at Little Creek)

I'm soooo sorry to hear about your son. That is truly heartbreaking. Thank goodness your instincts got him the help he needed. I was a Marine brat & then married a Marine, so I'm familiar with the "system" although my husban's been out now for 3 years. I believe you can still take your son out to a private practice, as long as it's approved by Tricare. Whenever we were in areas that couldn't accomodate us w/the military we went to private, but I know of other families that would opt to do that anyway, even when we were close to a military hospital. I'd call Tricare, explain your situation & then see if there's a list of approved pediatricians who you can see. Best of luck to you. I'll keep your family in our prayers!

CJ

hi J.,
I would not let this drop with the clinic and their inability to correctly diagnose your son.... I would request a copy of his medical records and have them reviewed by a civilian doctor.... I would also have the sugeon who is dealing with your son review them as well... I would then ask for letters from these physicians and then present them to the head of the medical clinic.... this is almost like you could OWN that clinic for misdiagnosis.... this simply unacceptable.... and I would not care how much it cost...I would try and find a civilian MD to take care of my son from now on..... If you are in the service, then you should have tri-care insurnace. if that is the case.... then there should be civilian Doctors who accept this insurance out in the real world...
Any way, I wish you the best of luck I will say a prayer for you and your son and wish him well with his surgery...
Rose

Keep forging ahead. Stay strong. Unfortunately it truly is left up to us to advocate for our children and stay one step ahead of their doctor(s) who sometimes miss very important symptoms and brush of issues as "minor" when indeed they require further testing/investigation.

I am glad that you insisted on seeing a urologist. Be proud of yourself. It is tragic that your son has had to endure so much pain. Glad that his surgery is scheduled for tomorrow. Look ahead to a more positive future and keep advocating for your child - you know better than anyone what is best!

I would change insurance to STANDARD!! You have to pay some when you see the DR but you can go to whatever DR you want as long as they take TRICARE!!

God bless your little guy. I hope all goes well on Wednesday. Hopefully, he's too young to remember this when he's older.

Hi,
I'm so srry to read all this about your son.
1. Educate your sel AS MUCH AS POSSIBLE it will pay back to you.
2.Regarding his over all health, try to get a naturopathic/homeopathic Dr. you should have some where you live. I have been educating myslef in both allopathic medicin as well as homepathic medicin and the later is the one that cures the most overall.
3.If you want me to, can I get you some more info regarding homeopathic remedies and try to help you find a ND/HD for your needs.

Good Luck,
L.
____@____.com

My husband is Navy too and we use a civilian dr for our kids. You have to get a civilian Primary care Dr who is part of the Tricare network. I forget the Tricare term for it, but if you call Tricare and say you want to a civilian Primary Care Dr list for your area and ask how to go about switching your child's care to their office. We have Tricare Prime with a great Ped office and we get great, convenient, consistent care with very little out of pocket costs. If they give you a hassle say you want to file an appeal to get civilian care at an approved Tricare Network Dr because of your failure to recieve proper care through the Navy Hospital.
Good luck!
~P.

J.: I fully understand how you feel. I also single parent due to the military life. I have switched to Tricare Standard. It is more money out of pocket but you can go to any doctor you want (that accepts Tricare) and you don't need referrals. It is crucial that a person (you or your children) see the same doctor to establish a knowledge and history of your health. I can't figure it out for the life of me why military doctors as a whole are so bad. I will keep you and your son in my prayers for answers, peace of mind and for a safe operation. Don't beat yourself up over this. You did all you could do. They just wouldn't listen.

Your experience sounds very frustrating and I can certainly empathize. I have had similar experiences at Naval clinics and have been frustrated with the Pediatrics Clinic. I would like to offer some advice. First, ask to be seen by Primary Care Manager, one Pediatrician. If you are not satisfied with the care you are receiving at the Pediatric Clinic, ask to see the Quality Assurance representative to voice your concerns, to include the problems you've had thus far. If after your provide detailed information they are unable to provide assistance or address your concerns, ask to see the Clinic's CO and/or XO. As you know, the CO/XO can certainly address your concerns and provide resolution in a very timely manner.

G.

I am a Navy wife and I do sympathize with you! Why didn't you go to NPS with your husband? We were there for almost 3 years and loved every minute of it, it is still our favorite place we've been stationed. We live in Carrollton now, not too far from you. I hust want to say that I have taken my kids to the portsmouth ER for various things and the last time was the kicker. My youngest had been wheezing and had a croupy cough (of course it was the weekend, we actually go to CHKD in Hampton Roads - love it there) anyway the triage nurses went back and forth to each other saying such things like "I don't hear anything, have you even heard her cough, I haven't heard her cough! I was there with my two other daughters if that wasn't bad enough decided that after no sleep the previous night that I was just going to go home and wait for Monday to see her doctor. They ended up calling me late that night after realizing that she was never seen and asked if she was okay because of the symptoms I listed, they were concerned. I flat out told them that I was very disappointed in how the nurses handled things and I have had other things bothering me from previous visits. They said they would make a note of it, that was all. I don't know how the rest of that hosp. works but I will definitely avoid the ER. Can you not see anyone else? My husband is stationed at the Newport News shipyard as the weapons officer of the USS North Carolina and I guess because we are in this area we were allowed to see civilians. I would try to see someone else if at all possible. I pray that your son will improve greatly and his surgery goes well. Sorry, I know I kind of vented but I definitely have been in your shoes!!
Please keep us all posted.

Oh the poor little guy!!!! Ow. I wanted to let you know that you did the right thing by insisting.

I think that is the way to go in the future. Take notes on what the urologist said. Do as much reading on the subject as you can. Write down a list of questions to take with you when you go into the clinic. Ask questions, questions, and more questions. "Why are you doing that? What is that medicine for? How much are you giving him? Will you spell that for me?" "You said that the hole was big enough. Did you measure it? How wide is it? Do you know that it isn't narrower further down?" "You said X... but so and so said Y. I am confused. Can you please explain why I am being told two different things?" Take notes. If they insist on doing something that your gut tells you is wrong, ask for a copy of the written order. Ask them to call in a specialist.

Meanwhile, see if your insurance company can give you ANY alternatives. Use their appeal procedures.

You might want to research your legal options (might not be any if this is a military facility though). This can eat up a lot of time and energy, so it isn't necessarily the best option. But if your son has lasting damage from this, you might very well need the extra money to take care of him.

Good luck...

J. All I can say is that I congragulate you for keeping on the doctors. As a parent you know when something is wrong withyour child. You will just have to keep up on the doctors and research your sons condition well. Our 3 year old has always been very sick and we had similar situations with the doctors but we just kept on them and even transferred to another doctors office. Hang in there!!

I would take in the new diagnosis as well as make sure to have all records copied and added to his pediatrician file. I would make it a point to have the new diagnosis given to (and a conversation had with each if possible) the doctors he had seen previously and let them know that you are not happy with the "service" they provided and that you would appreciate being listened to in the future because obviously you were right and they were not. I'm sorry you are dealing with this. If you are particularly frustrated with these doctors, you can always file a complaint with the hospital commander. Good luck!

Hi my husband is a marine and we live Va off base thank God...so we go off base to see my son's doc because like you we would had to see different docs each visit to the base hospital...I'm not sure but check with your insurance about going off base...also you need to find a way to make copies of records and log everytime the docs on base has seen your son..there should be a way to make a formal complaint...I uderstand where you're coming from. I use tri care prime off base because my son is a high risk born at 27 weeks so he has to see special docs we did not change it to standard and there is no co-pay to see the docs...tri care local office should have a list of doctors who take our insurance...I don't know if this helps...you are in my prays..N. D

Do you have any other choices with your insurance? Do your research and find out. Even if it means driving a longer distance, try to find a group where your son is the priority. In my experience, if you, as a mother, feel that something isn't right, it probably isn't. You manage your children every day. Trust your instincts.

My son has a moderate hearing loss that requires him to wear a hearing aid. I went to three different physicians before I found someone who would take me seriously when we first began to notice a problem. Once the third physician looked at my son's records--about a day after we had actually seen him in his office, he actually called me at home after 10pm at night to apologize for the run around I had gotten and to say that he intended to move forward more aggressively than he had originally planned. In the beginning, he had assumed like the others, that I was simply a mother who was over reacting. Then, when he saw the evidence in black and white, he was genuinely surprised that no one else had bothered to help my son. It took me two years, but we finally had found someone who would take action.

Today, my son is 11 years old, speaks clearly and is at the top of his class at school. I still have to fight to ensure that he gets the services he needs, but it has been worth it. Even if you have to take money out of your own pocket to pay for a provider, stay on top of your sons' health. And don't let the docs push you around. Stand your ground. Read the internet and request tests based on the knowledge you gain. If you raise enough of a stink, they should respond if for no other reason than to move you on to someone else.

It's not easy or fun, but sometimes it's necessary. If you find a nurse or a technician that you trust or have a friend with medical background, don't be afraid to pick their brains or to ask to see a particular physician. Learn how to work within the system to get what you want. Again, not easy, but worthwhile. I asked questions, called people who had seemed sympathetic to get their off the record feedback, asked nurses who they would take their children to, etc. If you have access to child care, you might even consider "volunteering" at the hospital. When you become a part of the family, it often changes the way you are received.

Good luck. . . and I am so sorry that your little one has had to endure this.

I'm so sorry for your son, the poor little guy. I spent 8 years in the military and, by and large had very negative experiences with their medical professionals. That aside, they owe you a service, and as much as it stinks, YOU have to be the one to CONSTANTLY hold them accountable to "do their job"! Sad, but true. I've been a civilian for 10 years now, and found that it isn't THAT different out here (better doctors, but you STILL have to hold them accountable to do their job!). Here's my advice on what's worked for me, although, it's some serious effort:

- LOG EVERYTHING! I used MS Excel on my computer, but you can even use a notebook and just handwrite everything. Have columns for Date, Issue, and Details. I included every single doctor's appt. I had, every time there was an illness or concern, and the names of each doctor I saw, tests that were done, and the results. I gave the more specific details under the details column. Before EVERY doctor appointment I would print out a new copy of the log with the latest information, and GIVE it to them. That did TWO things for me: 1) It showed them that I'm tracking every move they make, and 2) It showed that there really ARE issues and they cannot just blow me off!

- Get copies of EVERY single test or medical appointment you have. After EACH test and medical appointment, I'd request a copy of the report/documentation and results. For instance, for bloodwork, sometimes I'd have to go back to the office a week later to get a copy of the results, but they HAVE to give you a copy if you request it. Same with Cat Scans, X-Rays - everything. They HAVE to give you a copy of these tests (they give me my actual test pics on CD's, so I can make as many copies as I need through my computer at home and give them to other doctors I might be seeing, etcc - they may give you the films instead, if they don't have the CD burning capability).

These two things alone have SUBSTANTIALLY improved the medical care my entire family receives. The doctors know I'm tracking everything, and they can't blow me off when I have a clearly documented history of concerns. It still isn't perfect, but it has made a big difference! And... you know your kids better than ANYONE - don't take NO for an answer. DEMAND further tests, etc. - tell them you're not leaving until you get answers or a referral for more, etc, etc.
Best of luck to you and your little guy - I hope the surgery is the last of it - for both of you!