I Pit Myself! And "Some" Doctors!

Miscellaneous and Personal Stuff I Must Share
1

Last year my wife found out the cancer she had in remission re-emerged. After not wanting to go through everything again and letting it run its course to her passing away, I convinced her to fight for our childrens sake. Right or wrong she chose that path. After aggresive treatment we found out in December it is in remission… again.
This is great news! We celebrated and looked forward to a Merry Christmas and a Great New Year!
Now onto my wonderful children. My daughter was speaking at 11-12months old, mama, dada, waving and speaking byebye…then she stopped. We brought this up to her doctor three times, three different appointments, everytime he said “She is not around other children her age, its typical yadayadayada” We would point out she digs, tugs at her ears a lot, he would say “Its just a baby exploring her body”
Fast forward to December our son who is 9 developed migraines for which we went to the doctors for, got prescribed some meds that do seem to help. Then on a follow-up appointment for my son, with another doctor in the same working group I decided to take our daughter for an “unofficial” second opinion. On December 16th he took all of one minute to look at her records and realize something was wrong.
Doctor: It says she was speaking at 11 months
My wife and I: Yes
Doctor: She is no longer speaking?
MWAI: Nope.
Doctor: We have a problem.

After a referal to Pittsburgh Childrens Hospital, for a possible diagnosis of autism my heart sank. But she is our daughter and we have fought battles for years so this was just another mountain we have to climb together, as a family.
Then I start thinking, her hearing doesn’t seem to be that well, but she does seem to hear, I think. I do my home test, as she went to sleep I went over her head and banged a wooden spoon on the back of a pan. No response. I called her doctor, the one who insisted nothing was wrong, and got a referal to a local audiologist.
The local audiologist appointment, was fairly quick as he was unable to get her to accept the earplugs for either the tympanometry(sp) or the otoacoustic (sp) tests, and was not set up to do the visual/behavioural audio testing. So he refered us to Pittsburgh as well. After making an off-the-cuff diagnosis. He said he was 99% certain she had hearing problems, and by her behavior he didn’t think she would be autistic.
Good news? Bad news? I didn’t know and I didn’t care, I just wanted to know what was wrong so we could start the appropriate therapies.
We finally have our Pittsburgh appointment. After a many hours drive we arrive with her and visit the behavioral section, where after a few hours of questions, tests (MCHATS ect) and playtime with her. The Doctor is fairly confident in saying she in fact does have something in the PDD range (autism aspergers ect). Head a few blocks down to the audiologist, and she gives us more news, after running all her tests she is fairly confident in saying our daughters hearing loss is somewhere between severe and profound and they will have to sedate her in a few weeks to find out for sure.
We go back down the street with these findings and ask the behavioral doctor if that changes her assessment, nope.
It was like a fucking two-fer a kick in the nuts and a eye gouging for good measure, one or the other would of been easier to deal with, but both! We have to live with it, and we have to work through it. But it pisses me off to no end, that we could of had help starting a good eight months ago, when we first brought her ear pulling, tugging digging up to her doctor. We know she heard at one time, how she lost it we may never know.
But fuck me for allowing her first doctor to tut tut our concerns and fuck her first doctor for tut tutting our concerns.
I contemplated suing the first doctor but won’t do that, he missed something, its just as much our fault for not pressuring him each time. But I cannot help but wonder, if it was one of his friends children or a relative, would of he proceeded differently. But suing him, chastising him will not change the fact that our perfect wonderful, beautiful daughter is not normal, she is beyond normal she is unique.

2

Wow! You’ve been through the wringer - I am sorry for all your troubles. I think your best path right now is the one you’ve already recognized - that is to keep your family close and work together to find ways to adjust.

That is a mountain of unfairness, Abbie Normal. I don’t know what to say except to focus on the good things. Hopefully in time there will be solutions to minimize your daughter’s difficulties and you will be able to take it in stride.

On another note, I was diagnosed with MS about 4 years ago. I started looking for answers more than 10 years ago. By chance I recently found a radiologists report from my first test in 1995 that clearly stated I had early stages MS at that time. My neurologist sent me away then, saying there was nothing wrong.

It took the next six years of worsening symptoms and thinking I was crazy to get back for retesting, where, what a surprise, they found I had a progressive form of MS. I certainly wanted to sue the neurologist. There are treatments that can modify the progression of the disease that I was denied because of his failure to diagnose.

The lesson I learned is that I must be my own health advocate and tenaciously pursue answers if the one I first get doesn’t make sense. I am that way with all who I love now - I don’t count on the medical profession to acknowledge what I say the first time.

My heart goes out to you. I wish you strength to deal with all that’s on your plate.

3

Thank you Heckity for your kind words, and I wish you the best of luck as well. Through-out my life I consider it like a ladder, one which I can never reach the top. Everytime I am climbing fast, reaching for the top, everything going my way, the rungs must break and take me down. But thats okay, I fix the rungs and start climbing again.
I still feel the bile in the my throat, the anger at the doctor who could of did a better job, the anger at myself for not pushing the issue, pissed off beyond thinking. Crying myself to sleep like a child, but through it all I know I have to compose myself, for myself and my family.
I go from one minute of calm, to the next with anger beyond words, I actually cannot explain it as its something I have never experienced before in my life. But I do know that no matter my emotions, life must go on.

4

Aww, I’m sorry to hear of your troubles, Abbie Normal.

We made those same rounds with our son, except we get to check the eyes frequently, too. Sometimes he passed the hearing tests, sometimes not. He is diagnosed as having apergers, but that is just one small part of who he is.

5

Wow, Abbie Normal, you’ve gotten more than your fair share, it sounds like. But you also sound like you’re doing a great job of dealing with it.

I share your frustration and anger over doctors who don’t tell you the whole truth. I have a child with a very rare form of dwarfism, and yet we were never told that in plain English; we were told she had a “bone growth disorder” and that they “hoped” she’d make it to a normal height. Never mind the odds of that happening were very, very slim indeed. (Not impossible, strangely enough.) We were never told that she’d be eligible for or need special services because of her physical limitations; we had to learn by struggling through. It was a painful process. It’s only today, 25 years later, that we’re learning by talking with others with the same condition about some of the common physical problems that often crop up later in life. But we made it thus far, and are better people for it.

I’ll be holding your family in my good thoughts. And you as well, Heckity.

6

My words may make it seem as though I am doing a better job dealing with it then I actually am. Just typing some of those words in my OP I did it with tears in my eyes, I did it while practically stomping my fingers into the keys, feels like I am banging my head against a brick wall. But I know for certain I cannot let my emotions win. I cannot lose, because if I lose, my daughter, my whole family loses.
I let everything go during my wifes treatments, my friends, my job everything. I didn’t think of anything else but helping my wife and my family. And when that was “won” I dreamed of my life returning to normal. I guess not.
It is a comfort, knowing others are dealing with the same, and worse problems and coping well.
The truth is, it hurts, and it hurts even worse because it happened at a time that we where elated at my wifes success.
I thank everyone for there concern, it does mean something to me, lets me know I am not alone. I say “I” because my wife, love her dearly, is not accepting the diagnosis as of yet. She is still in denial. And yes that is hard to deal with. But she is coming around, and when the therapist gets here next week, she will have to face what we both knew deep down for months, our daughter is unique.

7

It takes time to adjust to these sorts of “losses”, Abbie. While I cannot compare my health issues to your wife’s or daughter’s, it was still a blow to what I’ve come to call the “implied contract of good health” (ICGH).

The ICGH is uniquely North American I believe. We grow up knowing of remarkable strides made in health care and diagnosis and live longer than other generations. We eat properly, get immunized, and (for the most part) have all the right conditions for a long and healthy life. If we were lucky enough to grow up in a family that had few health issues, it’s as if bad health can’t touch us. Then something comes along and whacks us upside the head and messes with our perfect world view.

There are stages to accepting this new concept of some one you love having less than perfect health. You can expect to be strong at times and overwhelmed at times and in denial a lot of the time. No one goes through precisely the same stage at the same rate. Sadly, some never move through them to acceptance.

Your task is more difficult still because you are the healthy one - yet powerless to change what is. Be kind to yourself. Realize that you are grieving the ICGH and it takes time to get used to the idea. Do your best to ferret out the best and most knowledgable in the field. And hold on tight to your wife.

You’re in my thoughts.

And thanks, Mamma Tiger

8

My apologies Mama Tiger one too many ‘m’ s.

9

Gosh Abbie, I hate to do this to you, but there is a disorder called Rett syndrome (RS), and your daughter sounds nearly textbook. Please have a doctor look into it. It’s rather easily diagnosed by genetic testing. This is how I know of it.

10

Already discussed that as well as some other misdiagnosed as autism problems. Retts usually has problems with using hands ect. My daughter is quite adept at using her hands, walking, running. No seizures, abnormal breathing or anything other that points toward Retts other then the loss of langauge once acquired.
Our daughter is going to be a “lucky” one, in that she is most likey going to have high functioning autism. But combined with a lack of hearing, barring it being correctible will make therapy all that much harder.
Its not that my daughter is hearing impaired that pisses me off, its not that she has PDD spectrum, it is that I cannot come to the rescue… If that makes any sense?

11

That makes perfect sense to me, Abbie Normal. It’s really hard when you realize your child is going to be different from “normal.” Whatever that is. When you just don’t know what you’re going to be dealing with next. I was lucky that a friend with a child with cerebral palsy, who wasn’t accurately diagnosed till she was nearly 10 years old, sat me down and talked to me about how there comes a point where you just have to accept that what is, is, and try and move forward the best you can.

But the pain of watching your child go through stuff and feeling powerless to change it or make it better is very real and impossible to describe to those who haven’t been through it. My situation is actually pretty easy compared to yours, or those of parents I know today with children with far more severe medical issues.

Yes, it’s possible to walk through it all gracefully . But you wouldn’t be human if you’re hurt and angry. Just remember that you can move beyond hurt and angry and learn to channel those feelings into seeking and following through on the best help possible for your child. Your wife will have to go through her own process, but I really do urge you to try to find a parental support group of some kind, even if it’s online. Today there’s an email list for parents of kids, and older kids, with the same type of dwarfism as my daughter, and it’s amazing how helpful it is to people when faced with a truly distressing diagnosis to find other people who are there and can offer concrete suggestions on what to do/where to go/how to find the help you need.

12

I completely agree with Mama Tiger . I joined an MS message board during and after diagnosis and the people there were invaluable in helping me find perspective and just knowing I wasn’t alone.

I was there constantly for three years until I felt like I could go it alone. In fact, joining this board was like a graduation of sorts for me. I found I could live without it being “all illness all the time”.

13

Ah. I misunderstood the “tugging at the ears” to be ritualized, but I see now, that you are saying it’s indicative of hearing loss.

I understand what you’re saying about wanting to help your daughter. You want to absorb her pain and future troubles. When she gets older, I’m sure you will be able to. Hang in there, and Good luck.

14

You know, there seems to be a common theme among people complaining about doctors, and it has to do with the difficulty of getting a correct diagnosis. It has always bugged the hell out of me that doctors don’t make it a point of professional pride to get a correct diagnosis the first time. I don’t know whether diagnosis as a discipline is understressed in medical school, or whether doctors just find it easier to pass you along to someone else. Ironically enough, I’ve found that Nurse Practitioners are often better “doctors” than the doctors themselves. They seem to have less attitude, and more willingness to take the time to actually find out what’s wrong with you. Don’t know if this is helpful advice in your case, but still. Anyway, I think you’re doing the right thing – trying to be informed so you can talk intelligently to the doctors about the possibilities. Hopefully you’ll happen on the right person at some point and be able to get off the merry-go-round.

15

Has anyone told you whether your daughter’s hearing loss could have been prevented or at least stopped short of severely deaf? That if your pediatrician had paid attention to you in the first place and started appropriate treatment it wouldn’t have been so bad?

16

The first audiologist we went to did suggest negligence in the delay in ordering testing. Apparently in Pennsylvania a child at 18months is supposed to be referred if they cannot say so many words, regardless. (Not sure if it is a law, or common practice or what)
This was at a little past 20months old when we took her for the second opinion. He did say that if she heard at one time then stopped being able to hear it could come from high fevers, undiagnosed ear infections (tugging, pulling, digging in her ear, all things she did, and brought up to her first doctor) as well as many other causes.
He also made me aware that the common symptoms of ear infections are not always fever, drainage out of the ear ect and that he should of referred us to a ENT with our concerns as soon as they where made. This was an actual shock to me, all the years of doctors, hospitals never a once did a doctor “tattletale” on another doctor.
But the thing that has me up in arms about him “missing” the problems is that she could of already been in therapy, and/or had surgery (cochlear implant), hearing aids ect already. I know autism is uncurable*, but sometimes hearing loss is curable. And if it is possible to eliminate one of her problems, it would make helping her with the other much easier, both on her and us.

  • Though I will be trying the gluten free diet along with Nystatin(sp) as there have been some small studies that show some improvement in late onset autism children when doing so.
17

Abbie, you have my sympathies, as well. You and others have mentioned it, but it bears repeating - we are all responsible for our own health. If the GP tells you something that just doesn’t sound right, don’t accept it until it sounds right TO YOU. We used to be so comfortable with doctors all up on their pedestals and us mere humans listening to their pronouncements as though they were gospel, but that just isn’t good enough any more.

No regrets or recriminations for you, Abbie. I am sure you never did anything that you thought would harm your daughter - you were doing the best you could do with what you knew at the time. It’s easy to look back and say all the "could have"s and "should have"s knowing what you know now, but you didn’t have all that information then. Now that you do know, you can move forward armed with more knowledge and make better future decisions.

18

So very, very true, should have’s and could have’s ate away the last month of my life. It was a difficult time my wife was in and out of the hospital, our daughter was with my in-laws, my family, on and off as we made trips for her treatments so there was a lot of things I may of spotted but missed.
I think sometimes that if our world was not already spinning, I would of been more forceful in getting another opinion earlier, but would of I? I don’t know and I cannot dwell on the past. It cannot be change, we relied on the doctor to take care of our child in a manner that served her best, hindsight shows we where naive. And my own personal lack of parental responsiblity is more then at fault.
That being the reason I only “thought” about suing, never really going past the “thought” part.
But absolutely none of that can change the what ifs. But now armed with the vast knowledge Google has given me, I am not so naive and will demand the doctors do what they are paid to do, help my daughter as if it where there daughter.

19

You go, boy! With your attitude, I think you are all going to do just fine, regardless of what life chucks at you. What’s that saying, life is 10% what happens to you and 90% what you make of it?

20

I’m so sorry to hear that you’re going through all of this. It is absolutely natural to want to rely on the word of a trained professional over your own concerns – who should know better, right? You absolutely cannot blame yourself in any way for not pursuing your concerns further or quicker. You asked and were told it was nothing to be concerned about. You asked again and it was reiterated. And with everything else you and your family were going through, it’s completely understandable that your focus would be diminished on something you were specifically told not to worry about, when there were obvious serious issues that you did need to focus your concerns on.

I understand your reluctance to sue, probably because you’re accepting so much of the blame on yourself. And truthfully, you may not have much of a case, anyway (though I am not a lawyer, this is not legal advice, yadda yadda yadda). However, I wouldn’t for a moment hesitate to report this guy to the State Board of Medicine in whatever state you live in. Even if you don’t go after personal compensation for his negligence, allow the licensing board to review the case and determine if he should be disciplined in any way. Maybe it’ll prevent some other family from going through what you are.

Best of luck – I hope your family’s health continues to improve.