Has a Doctor Diagnosed Your Child and Provided Little to No Information?

Managed health has limited doctors' times with their patients. It is really your job to go in with some knowledge and be prepared with questions. This really varies from doctor to doctor, but often they will provide only minimal information unless you ask specific questions. This is true for all types of doctors/specialists. You must always be your own advocate and an informed consumer of your own healthcare.

Many times doctors have limited time but see if there is a nurse, nurse practioner or social worker who can take some time to answer questions for you. My daughter was seen by a specialist and the nurse practioner was able to take more time answering my questions. Since your one son is in a group home there may be a social worker or case manager there who can either answer questions or help you sort out who to ask a question to. If you can do a little research to ask informed questions and then write them down to bring to an appointment maybe you can get better answers from the doctor. At the very least if your child gets a prescription the doctor should tell you what the medication is supposed to do, how to tell if it is working or not and maybe side effects to be concerned about (a pharmacist may be able to help on specific drug questions). Also, sometimes different specialists will give a different diagnosis to the same person (which can be confusing). Usually the psychiatrist is the person to ask about the choice of a medication for a mental health problem, especially if it is a choice between different medications that treat the same thing.

My son was diagnosed with CAPD and ADD. He has been give two medications and the second one worked. Capd is an central auditory processing disorder. It means he can not process what you are telling him. He was not diagnosed until he was 11 and that was after he saw a neurologist. I kept wanting a name to what he has so I could figure out how to help him best. The only medicine he is on is for his ADD. There is no medication developed for CAPD. I do however know he has inherited it from his father, who is diagnosed only as being dyslexic. He processes information a lot like our son does. Our son is just more severe with the capd than my husband is. Capd means you learn visually only. That is about the extent of what we know. No one else has any more information, which to me is really sad because I know he could achieve a lot more than what he can do on his own if there was something out there to help him.

My son has 25 medical diagnoses, I think by far the worst experience that we have ever had (he is 11 so we have had quite a bit) was when we went in and saw the neurologist for a follow up, he told us that my son has a smaller than normal brain and his brain stem to brain ratio was way off, and that he has a fat tissue lipoma along his lumbar region. All I was told was to consult with a neurosurgeon to see *if* they will remove the lipoma. At that visit he didn't even exam my son, it was like he was afraid of him (my son's 1st diagnosis was Down syndrome when he was a week old) and this neurologist works at Children's St. Paul. Never mentioned anything about doing a follow up to make sure the lipoma isn't growing into dangerous territory.

Without the urologist knowing this I also diagnosed my son as having a neurogenic bladder, they kept saying he was incontient and I knew that was wrong in order to have incontience you have had to been contient for at least 6 months, he has never been.

Now I am trying to get in with a specialist that deals with complex complicated kids like my son, but everyone that I have been told about isn't taking in new patients. Its hard going from appointment to appointment and having to tell a story all over again, going over family history and lack of family history. I even called up the Down syndrome clinic last week and they told me since I haven't seen one of their providers in a while (we used to but she mainly deals with behavioral problems in special needs kids and went to a different clinic chain) that we would have to go through the whole evaluation all over again starting with genetics. I told her I don't need genetics, I have 2 identical twin daughters who are 5 years old and their only problem is lactose intolerance. Just so frustrated with everything!!

Wow you must feel really lost at this moment. It's hard enough getting a diagnosis but not being well informed would drive me crazy. First let me say my daughter is autistic and my nephews have behavioral issues. I'm not certain what doctors diagnosed your kids but I would get a second opinion from a Pediatric Developmental Specialist. If you happen to be in Madison I would highly recommend the Waisman Center. If not then look around. I've found that by going with a ped. specialist I've been armed with all the information possible. Also they will give you information on how the drugs will work, why they work and what to expect. Drugs aren't something I've had to deal with but one of my nephews recently started on some and his parents have seen a vast improvement. You really need that open line of communication with the doctor. Drugs are never 100% all the time. Some may not work well for your son or some may work too well. It just blows my mind that any doctor would give something and then send you off with no information. My only guess is that since both your boys are older the doctors have assumed you know all about these disorders. I would also suggest getting on a message board with parents who are dealing with similar problems. I've found the information from boards to be so helpful. First hand accounts on how deal with the system or schools or just other parents of "normal" kids. If you have any questions feel free to message me. I'd be more than happy to help if I can.

Excellent idea of pulling together information that can be a resource for others.
Something that many people don't consider is treating physical or mental illnesses with nutrition. Drugs are not always the answer in any case but sometimes it works and hopefully no side effects.
I am part of a food science company that has the best nutrition in the world and it has been nothing short of amazing how it has positively affected peoples health. Worth checking out if you are going to have a resource for people :)
Blessings,
L.

Not really... but

1) Being adhd myself... &
2) Working in healthcare...

I know the "drill".

Which is:

1) That you never depend on a PCP / Family doctor for any mental issues (you need heart surgery you see a cardiologist & a surgeon... you have cancer you see an oncologist & radiologist... you have x you see y & z). Yet for some reason it doesn't occur to many people that for your BRAIN -which is what is going on in psychological matters- you would see people who specialize in the brain... aka a psychiatrist & and psychologist.

2) You have to "shop" for a good psychiatrist/psychologist team. Moving every 2 years I have this process DOWN. Start off with referrals & the web. Come up with a "short" list of about 10 psychologists (the important people to click with since they're the ones who you'll be talking with and working with... the psychiatrist just provides the medication and med management). Call ALL of them. Do a quick phone screen (aka to see whom you might like, & their real area of expertise), and then make "interview" appointments with any (in my case usually 3 or 4 meet my reqs). Then have sitdowns. Pick my favorite, but keep any other "maybes" in the wings if after a few weeks it's determined that choice #1 isn't working out (happens sometimes). At that point the good psychologist usually has 3 - 5 psychiatrists that they work with on a regular basis. Find out which accept my insurance... and then use one of them for med management.

I diagnosed my own daughter when she was 5 years old with Sensory Processing Disorder (SPD), which the Childhood Specialist we were seeing at the time (the tantrums had gotten so bad, we had no choice) said, off the record, was what she had. The Pediatrician was absolutely no help. Not only did the Ped not take my concerns about my daughter complaining about bright lights and headaches (she got eye glasses when she was 3 years old, is far sighted and has Strabismus), she also totally dismissed my concerns about all of her symptoms that eventually led up to the SPD diagnosis.

No Pediatric ENT or Pediatrician said anything to us about my daughter's inability to talk when she was younger, or where we could go for help (I finally took her to the school district when she was 3, and she was put into speech class. They couldn't believe that the Pediatric ENT hadn't mentioned anything to us about getting her help in speech, or where we could go ourselves.).

I got her help with her speech, because I pushed and pushed and pushed, knowing that there was something wrong and it needed to be fixed. While she was in speech and then Early Childhood, it was mentioned that they wanted to test her because they noticed certain "things." Testing came back stating she had various states of Hypotonia; she was in OT/PT through the 4th grade. If she hadn't had continuous help during the school year, I doubt my daughter would be able to do half the things she can now. She will continue to take Speech this fall, in the 5th grade.

My daughter also had/has issues with weight. Again, no help from the Pediatrician. I finally, with the help and intervention of the Childhood Specialist, got my daughter into the Pediatric Wellness and Fitness Program. There, I finally found a doctor whose son has SPD and understood the many different issues my daughter (and us) were facing. We did the program for about a year, but ultimately, it's up to my daughter to "help herself." Because we weren't getting cooperation, we finally left the program.

However, there is a happy side. My daughter is now aware that no one can do for her; she has to do for herself. We are teaching her about good nutrition (we eat organic) and being physically active (she's been in dance since she was 4 years old and last year particiated in Girls on the Run of Dane County, in which she's been learning how to run and have confidence in herself). She still sees her Childhood Specialist once a month, and that helps her talk to someone about her problems and not dump everything on dear ole mom.

I must confess, I didn't get much of anything from doctors; not a diagnosis (I figured it out) and certainly, not any help on where to get help and/or how to help her. I bought a few really good books, read them, and have figured out how to help her myself. The Childhood Specialist has been my lifeline; I feel she's as much my helper as she is my daughter's. Yes, Madison does have the Waisman Center; however, the Waisman Center is horribly expensive, and we couldn't afford their prices. Besides, my daughter is on the high-functioning end of the Autism Spectrum; unless you live with her 24/7, you have no idea she has "issues" if you meet her and spend just a few hours with her. Many of her issues are emotional, with some anxiety and OCD issues thrown in, as well as weight-related anxieties.

I commend you on pulling together some basic information to give to your doctors, but I have found that very few doctors are really interested in the information or in helping you cope. With all the various issues my daughter had growing up, some really bad ones as a baby, I never had a Ped who was genuinely interested in "getting to the bottom of it." To do that, I had to be a detective and a "doctor" myself.

And I'm still doing it, as now we have gone over to the Alternative Medicine side of the field, as we are discovering that healthier, cleaner living--and doctoring--is helping us better than anything. It is very possible that the genetic liver mutation we discovered that we all have is or could be partly to blame for a lot of my daughter's issues. The mutation doesn't allow our bodies to detox or metabolize correctly. The allopathic doctors don't know about, won't acknowledge it, and won't help us with it. However, the alternative medical community knows all about the mutation and are more than willing to help us get well. And from some very simple tweaks--like eating organic, doing away with gluten and dairy, and drinking reverse-osmosis water--my daughter is world's better now than she was just two years ago (she is now 10 years old).

If you want know more information, feel free to contact me.

Family doctors have little medical training to treat many illnesses, that's why there are specialists in just about every field. A specialist who knows your children's illnesses is where they need to go.

I feel the same way about medication, Doc's get samples, they give them to people who they think might benefit, they have little first hand knowledge about that drug,much less any possible side effects with other things. I never believe a Doc when it comes to meds, I always ask the professional, a pharmacist.