Thursday, February 28, 2008

I Hate The Wait

Dealing with medical stuff seems to come in waves in our house. When Paige was little we were at a different specialist every week. At one time she had 9 different "ologists" and we were hit with scary news constantly.

But, since she has gotten older, the shit hits the fan in waves. Unfortunately, when it does... it splatters. I have my shield up but I'm worried.

We are in a holding pattern right now. Paige had her bone age x ray done a few weeks ago. She was 9 years 3 months at the time and the scan showed she was delayed up to 2 years. We are going to see the pediatric endocrinologist in 2 weeks.

Yesterday she had her bone density test. Not only is she at risk for osteopenia of prematurity, there is some new information out that being on some SSRI's can cause rapid bone loss. Of course she is on one of the SSRI's on the list. I watched the monitor, as the scan was in progress, wishing I was a doctor so I could have an immediate answer.

Now we wait.

I hate the wait.

11 comments:

Anonymous said...

Helen Harrison comments:

I recently heard from a friend of mine whose premature triplets are now adults. One of them has severe bone problems which were just discovered.

I heard Maureen Hack speak about poor bone growth and mineralization at a meeting of Society for Pediatric Research some time back. I'll see if I can find the abstract or see if it has been published. I seem to recall that Dr. Hack suggested a contributing factor may be lack of exercise (secondary to motor problems) and exposure to sunlight (Vitamin D).

Osteopenia is fairly common in preemies as neonates/infants, and it will be important to see what this may mean for them as they grow up.

(Off to have a bone density test myself).

Helen

Anonymous said...

Helen Harrison, posts yet again (sorry):

I forgot to mention one possibility for encouraging bone growth -- the vibrating platforms that you may have seen advertised in magazines.

Apparently they have been used by the US and the Russian space programs to help astronauts get their bones back into condition after long periods of weightlessness.

Experiments with mice also suggest that 10 to 15 minutes a day on one of these platforms may help people with metabolic syndrome (which has a bone component, apparently.

There are also some small studies and anecdotal reports showing their usefulness with the elderly who cannot exercise and are suffering from bone loss.

I bought a Soloflex but haven't had enough time to notice any effects. My OBGYN was interested in getting information about these platforms to her patients at risk for osteoporosis. It's worth a try, and the platforms do not need to be hugely expensive, though some are -- shop around.

Helen

23wktwinsmommy said...

Wishing the very best for Paige.

Anonymous said...

Stacy, when I am waiting on pins and needles, I ask myself:

What will change if the diagnosis is X?

What will change if the diagnosis is Y?

Will my child be any different if the diagnosis is X or Y?

Lastly, what if we were living in another time in history, and these tests that yield these diagnoses were not available? Which would mean I woulnd't know the diagnosis? How did people like us carry on in those other times in history, when they didn't have a diagnosis/therapy? Were they more or less at peace? Was ignorance bliss?

Your peace is worth a lot to you and to Paige . . . Above is my "self-talk" to keep myself in a peaceful place. Maybe you can develop some self-talk to keep yourself calm as you wait.

There is an OLD prayer:
Let nothing disturb thee.
Let nothing afright thee.
All things pass away.
God alone is unchangeable.

Stacy, you could alter this prayer to suit your needs/values. Plug in different words, especially in the last line, if the that line is not in keeping with your values . . .

It is NOT about analyzing and strategizing to get Paige a diagnosis and appropriate treatment. It is about adjusting your outlook on whatever is ambiguous or troublesome in your life.

The unknown is definitely troublesome--more than that, it is fearsome. Strong emotion, FEAR. Those who can say "Whatever happens (the unknown), we will be able to handle it. We will be able to cope. We will find a way." Thereby, hitting FEAR hard at the kneecap level . . . You are above fear. You are better than fear.

You go, girls!!!

Chris and Vic

Chris and Vic

The Preemie Experiment said...

Helen wrote: "I forgot to mention one possibility for encouraging bone growth -- the vibrating platforms that you may have seen advertised in magazines."

I have seen these Helen. Admittedly, I had a good chuckle and thought they were a bunch of hooey. Hmmm, maybe I shouldn't have been so quick to dismiss the idea! lol

Stacy

The Preemie Experiment said...

Chris wrote: "The unknown is definitely troublesome--more than that, it is fearsome. Strong emotion, FEAR. Those who can say "Whatever happens (the unknown), we will be able to handle it. We will be able to cope. We will find a way." Thereby, hitting FEAR hard at the kneecap level . . . You are above fear. You are better than fear."

I am definitely a fear driven person. But, it's not the fear of the outcome but rather the fear that I will miss something, or dismiss something, that will adversely affect Paige later and be more serious than if I had caught it right away.

Also, I am so sick of seeing my baby go through difficult medical issues and all of the treatments that go along with it. It all goes back to what I've said before... I can't hug it away. And, it crushes me.

Anonymous said...

Helen Harrison, in response to Stacy:

I'll send you the articles I have on the vibrating platforms.

One is from the New York Times, Science Times, Oct. 30, 2007, by Gina Kolata, entitled "Low Buzz May Give Mice Better Bones and Less Fat."

I also have an article from _Science News_ on this topic.


Here are some excerpts from the NY Times article:

"[Clinton T.] Rubin, director of the Center for Biotechnology at the State University of New York at Stony Brook, is reporting that in mice, a simple treatment that does not involve drugs appears to be directing cells to turn into bone instead of fat.

"All he does is put mice on a platform that buzzes at such a low frequency that some people cannot even feel it. The mice stand there for 15 minutes a day, five days a week. Afterward, they have 27% less fat than mice who did not stand on the platform -- and correspondingly more bone...

"Bone is notorious for 'use it or lose it,'" Dr. Rubin said, 'Astronauts lose 2% of their bone a month [when weightless]. People lose 2% a decade after age 35. Then you look at the other side of the equation. Professional tennis players have 35% more bone in their playing arm...'

"[Dr. Rubin] discovered that in mice, sheep and turkeys, at least, standing on a flat vibrating plate led to bone growth. Small studies in humans -- children with cerebral palsy who could not move much on their own and young women with low bone density -- indicated that the vibrations might build bone in people, too...

"'This is very, very cool' said Dr. John B. Buse, a diabetes researcher at the University of North Carolina who is president for science and medicine at the American Diabetes Association. If it turned out to hold for people too, 'it would be great for diabetes,' he added. He noted that people with Type 2 diabetes were likely not only to be overweight but also to have problems with their bones.

"Still, Dr. Buse awaits more definitive studies in humans.

"'It is almost too good to be true,'" he said."
***

Anyone who would like the full text of the articles can email me at Helen1144@aol.com

Helen Harrison

Anonymous said...

Helen Harrison posting again with more studies:

I saw this recently in _Science News_ and thought it might help contribute to the benefit/risk decisions regarding SSRIs:

"[Prozac] makes new neurons mature faster" (by Tina Saey,_Science News_ Vol. 173, Feb 9, 2008)

A summary and some excerpts:

A new study published Feb 6 in the _Journal of Neuroscience_ suggests that the time lag most people have in reacting to SSRUs
(2-4 weeks) may be due to the fact that the drug acts, at least in part, by helping grow new neurons and neuronal connections in the hippocampus [a part of the brain often abnormally small in preemies, btw].

Neuroscientists at Columbia University, bred a special strain of particularly nervous mice, and treated some of the mice with Prozac.

"Inside the brains of the mice treated with Prozac, the resarchers found many more neurons in the dentate gyrus of the hippocampus, a part of the brain involved in learning and memory.

"Not only did the Prozac-treated mice have more young neurons than untreated mice, but their neurons had more branch-like extensions, called dendrites, than did the neurons of untreated mice. Those branches are important for making connections with other neurons and wiring cells into the larger network of the brain.

"The researchers gave the mice a behavioral test to see whether having more newly mature neurons was important for changing how the brain works. For the test, the mice don't get any food for a day. Then researchers place the mice in unfamiliar cages with food pellets in the middle of the box. The mice usually cower in the corner, but after about 2 weeks with Prozac treatment, the rodents approach the food. Neither untreated mice nor Prozac-treated mice whose hippocampi have been irradiated with X-rays to prevent new neuron formation seek out the food. The results indicate that the birth and maturation of neurons in the hippocamplus is important for Prozac to do its job..."

In other words, SSRIs may be building parts of the brain, even while they are harming the bones.

Anyone wanting the entire article can email me at Helen1144@aol.com.

Helen Harrison

The Preemie Experiment said...

Thank you Helen for all of the information.

We are still waiting for the results (which were supposed to be in our hands on Thursday).

Anonymous said...

Helen Harrison

To Stacy,

The waiting and anxiety is for sure the hardest part (I personally feel it has taken years off my life).

Why is it, I wonder, that these results take so long? I'd bet a great deal of physical harm is created by the stress of waiting. You would think caregivers, who profess to care about the health of the people and families they serve, would understand this and keep patients and their families more informed and invovled throughout the process.

This kind of inexplicable delay seems cruel.

Helen

The Preemie Experiment said...

Still waiting.