(This discussion was started in the comments under a previous post but it is very important so I am making a post out of it.)
Helen Harrison wrote: "About 20 years ago, a friend of mine was sent to psychotherapy because of her infant preemie son's eating disorders -- which the docs felt was due to her failure to bond with him. The child's feeding problems were finally solved after gall bladder disease was diagnosed and his gall bladder was removed."
Terri w/2 wrote: "Helen - my best friend was also sent for psychotherapy because of her daughter's feeding issues. The hospital videotaped her attempting to nipple feed her daughter and then told her to go home for a few days while they took over. They had no more success than mom did, however, they still blamed mom for the baby's feeding issues.
She was later dx with cerebral palsy, had a fundoplication done (twice) due to severe reflux and a g-tube placed at age 2.
I hope that medical care in this area involving preemies has since changed, as this caused this very devoted mom a mountain of anguish."
Joan wrote: "I've been thinking about this story since reading it last week. It's one more example of what preemie parents go through over and over and over - dealing with so many issues that don't have appropriate identification or treatment - in the context of the health care system - and enduring treatments or attitudes that inadvertently become abusive, although the abuse is stemming from blatant ignorance rather than intentional cruelty.
Lack of real help is SO prevalent for the many issues our preemies face."
Chris and Vic wrote: "There is this doc on public radio--Zorba Paster (The Longevity Code), who always says, "You've GOT to get a diagnosis". I don't agree with everything Zorba says, but I think he is dead-on with insisting that people who call in have got to go back to their docs and get a diagnosis.
In the case of our ex-preemies, if there is no diagnosis, what Joan says happens will happen again and again. Blaming parents. Yes, it is an abusive practice--and I would not let any doc off as easily as Joan lets them off. I think it is abusive, and ignorance does not absolve . . .
Instead, if a diagnosis is doubtful or long-in-coming, those docs should document, document, document what has been ruled out; what parents suspect; what docs suspect but cannot prove with conventional testing. Docs should go on to write, to document, that they do not blame parents, that they believe that the parents have some insight into the problem, etc.
The docs should write a tentative diagnosis. They should write into the record the lab error rate for the tests that have been done. They should write that they have referred the child on for a 2nd or 3rd opinion to such-and-such specialist. They should write in the record (a commitment) that they will follow up in 6 months or a year, repeating the tests, or giving the child a trial on a med, or giving the child more time to mature or show additional symptoms, or whatever.
Often enough, the parents are sent home with their child having symptoms, even worsening symptoms, and the parents have to figure out a way to deal with it on a day-to-day basis. And the docs get to blame them for their creative solutions, or for whining about the problems, or for their angry or depressed reactions to the lack of a solution.
Come on!!! Play fair!!! Follow up. Keep sleuthing till you find a diagnosis. Repeat the tests. Refer to a specialist. Do whatever needs to be done. Don't dump on parents and then blame them for the difficulties they have in coping."
For me, this is a very sensitive subject and one that still makes me tear up. Many of what has been talked about, happened to us. I think I've blogged about this before but forgive me if I am repeating myself.
Many times, through many preemie issues, hubby and I were accused of everything from being nervous parents all the way up to Münchhausen's. A few examples that really stick out in my mind.
# 1. When Paige was about 3 weeks away from turning 4 she passed out on a swing, twice. I talked to the doctor and described Paige's behavior before, during and after. He tried to convince me that Paige was just being silly. When I asked about seizures, he chuckled and said that she clearly did not act as if she had a seizure.
The next day we had a scheduled appointment (unrelated) with another doc in the practice. We brought up our concerns about the swing incident. She looked hubby and I in the face and told us that we are going to have to stop treating her like a preemie.
2 days later Paige's OT told me that she had concerns over Paige's behavior. When I told her about the swing incident, she told me that I was not over reacting.
I called the doctor and demanded that he order an EEG. He refused. I told him that I felt that he was being irresponsible. He was quite angry with me. The day after the EEG, he called me, apologizing up and down, while telling me that he EEG was the worst he had seen.
2 days later we went to another neurologist, who repeated the test. He told us that the original test must have been performed incorrectly. As the tech was hooking Paige up, the neuro even commented that she looked too good to have an EEG that severe. He felt that we were looking too closely at her because of her prematurity. After the test the neuro came in, shaking, telling us that he didn't understand how Paige was walking and talking. He showed us the tracings... continuous spikes. We left with a diagnosis of Epilepsy.
#2. When Paige was about 4 she had an odd fever. We aren't ones to freak out over fevers so we just kept an eye on her. About an hour later I checked it again and it was higher. I gave her Tylenol. She started complaining that he joints hurt. She laid down on the couch. Then I knew something was wrong. When Paige was that age... she NEVER sat still. After a few hours I called the doc, explaining that I gave her meds-alternating Tylenol and Advil but her fever was 105, and she had joint pain. He told me that kids get fevers and made me feel like a fool for calling.
2 hours later I called him back because she was very out of it, despite being hydrated. Doc told me, "listen, if you bring her to the hospital they will have to do a lumbar puncture and you don't want that."
About 3 hours later Paige was fine. Fever gone. But, she was not the same. From that day forward, she lost the ability to walk without being fatigued. Other odd symptoms came on but the docs would say, "well she is a 25 week preemie-what do you expect?" After a year filled with begging docs to help, they all gave up. More than one of them suggested we head to mayo clinic but would always follow that with a reminder that she is a preemie. Ugh. My point was that she changed after that fever.
A friend mentioned the possibility of Paige having a mitochondrial issue. I talked with docs and a few of them agreed that she fits the criteria. We finally got an appointment with a geneticist. I came very prepared, huge typed packet of info. He agreed that her issues were indicative of mito, he even pointed out a feature that we hadn't noticed. Paige was 5 by this time. He spent a short amount of time talking to her and then turned to me and said, "she is too intelligent to have mito." I tried arguing that not all mito issues present with cognitive delays but he stopped me and said, "do you know what test would have to be done?" Of course I did... a fresh muscle biopsy. By this point, after quite some time researching it all, I even knew where to go for it and how you should not waste time getting a frozen biopsy-which meant we had to head to Cleveland. He then said something that caused me to fall apart as an advocate... "Mom, why would you want to put her through that? It's very painful."
I gave up. I talked with 2 docs who were not in the mito "field" but were very interested in it and had spent some time researching. They both said that the best thing we could do was wait until she crashed again and then push for the test. They both also told us that she may not "crash" again until puberty.
There are so many other instances that docs have dismissed our concerns over the past 9 years. I've learned to fight for help but it is very draining. I shouldn't have to fight.
On the flip side, in recent years, doctor's attitudes seem to be getting better. I didn't figure it would happen since we moved from one of the largest cities in the U.S. to a state that is lacking in pediatric care. But, it seems that Paige's docs, here in our current state, believe that there are long term effects of prematurity and do not turn up their nose when we walk in. It still isn't perfect, but it's better.
I wish I could say that our new positive experiences are the norm but I know better. I read, on the preemie groups, about the troubles others are having and how they are not being taken seriously. Since starting my blog I've gotten a few emails on this very same subject.
I do agree with Zorba Paster and Chris who say... "Get The Diagnosis". I just wish it wasn't so hard.