Thursday, January 31, 2008

And the verdict is...


We met with the neuro's PA today. Obviously she cannot diagnose, but she has dysautonomia herself and said that all of Paige's symptoms fit, along with her prematurity. She did strongly suggest that we get a 2nd opinion with a different cardiologist. She would like Paige to, at the very least, have a Holter monitor. She did mention that another option would be for Paige to wear an event recorder, which would be worn for a longer period of time in order to increase the chances that it would catch some activity.

She said that most kids grow out of it by the time they are finished with puberty or into their early 20's.

As far as medicine goes... since Paige is not passing out or falling, we can hold off on medicine. Obviously this may change if any cardiac issues are involved. She also felt that there is no reason to push for a tilt table test if the cardiologist doesn't see a need for it. She said... "if it looks like a duck, and sounds like a duck... let's call it a duck."

I found myself reflecting on the discussion under the previous post. Could we have skipped this appointment and continued to play the "wait and see" game. Yep. Do we need to do anything different in Paige's life? Nope.

Could I have relaxed if I would have waited? Nope.

Do I feel at ease now, confident that the diagnosis is correct? Nope.

I have this constant nagging, gut twisting feeling that I am going to be under-responsive to something and Paige is going to suffer because I didn't act quick enough.

Why is this?

Sunday, January 27, 2008

A Day at the Doctor

Friday was doctor day at our house.

First up... Tyler (20 months old).

A few months ago hubby found a lump on Tyler's leg. It is located approximately 3" above his knee, in the middle of his thigh, and was about the size of a pencil eraser. It seems to coming through the muscle. A few times, as I was feeling it, it almost felt like I pushed it back through the muscle. There was days when I didn't feel it at all. When we first found it we decided to take a "wait and see" approach. We waited so long that we forgot about it. On Friday, as I was getting Tyler into his high chair, the lump was obvious. It has gotten bigger.

Off to the doc Friday morning who felt it was not in a spot that would be indicative of anything scary. When he felt it, he said that it was not elongated. But, there was a few times when I had felt it that it did seem oval. I wasn't sure if I was feeling the muscle or the lump, but at times they seemed to be one piece. Doc chose to play it safe and send us to a pediatric orthopedic surgeon. The soonest they could get us in was at the end of Feb.

Next up... Paige.

After Paige got out of school we headed back to the doc. We talked to him about her dilated eyes and how her fatigued has returned. He felt that her eye issue was due to the Zoloft. He says that he is seeing it more and more in adults. He does not agree with kids being on Zoloft (he's not a pediatrician) but we have no choice. Paige's anxiety disorder and OCD is too severe at this point. But, since we've seen this before (eyes, fatigue, dizziness, palpitations, etc) he suggested seeing her neuro. Seeing the neuro is what we had wanted to do but getting an appointment in less than 4 months is impossible. Doc told us that he would call him personally and see if he can speed up the process.

We also talked to him about the recent info coming out about SSRI's and bone loss.

Although I realize that the studies only discuss older adults, and do not mention pediatric patients, the results still have me concerned. Preemies, especially those born before 30 weeks, are at higher risk for osteopenia.

Since Paige was born at 25.5 weeks, had TPN, many doses of various steroids, diuretics, etc., I asked the doc if it would be worth it to do a bone density test. Since he hadn't heard about the correlation between SSRI's and bone loss he said that he would see what he could find and then send us for the test.

With all of the talk about Münchhausen's, and with our past experience (not with this doc), I decided to have my mother in law come with me to both appointments. It was comforting having her there and a huge help. When it came to Paige's appointment, she let the doc know that she was the one who was very concerned about Paige's eyes. She had a great suggestion to bring pictures of Paige, with other children, to show how different her eyes are compared to the other kids. It's sad that I had to use energy to worry about what other people may be thinking, but I sure am glad that she is so supportive!

Now we wait.

Friday, January 18, 2008

Get The Diagnosis

(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.

Waiting sucks.

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.

Friday, January 11, 2008

Where Did *I* Go?

Last year I wrote about hubby, in a post titled "Where did my husband go?"

Recently I've been thinking... where did I go?

It all started a few weeks ago. Hubby and I were watching T.V., after the kids were in bed, when he tickled me. I laughed and hubby said, "I love hearing you laugh." I loved it too but it seemed a bit foreign. Since we entered into the world of prematurity we have had many good times as a family. It hasn't all been hard. But, I do remember when I use to laugh all of the time. I was that person who woke up in the morning with a smile on my face and ready to go. You know the type, tries to spread morning sunshine to everyone. (now I want to strangle that type of person)

Many people change after having (typical/healthy) children, but their "core self" seems to stay the same. You drop your child off at the babysitter (or put the kids to bed); you and hubby then jump back into your former selves and have a nice time while out to dinner or even simply watching television together. Yes, you are not the exact same person that you were before kids, but you can get back to that place in your lives with a bit of ease.

When you have a child born under different circumstances or have a child with long term issues, the lines surrounding your "core self" change. Blur, if you will. The blurred perimeter gets wider as the years go by until the core itself is also blurry.

Who was I? What did I do with my time before doc visits, research, kissing boo-boos, med management, etc.? I know I used to laugh a lot.

What did I do before prematurity was my focus? I know I had other passions. I know I cared about other causes.

Last night I spoke in front of the school board. It was unscripted (something that never makes me nervous-I know, I know, I'm odd). As I was talking, it started to come back to me. Wait a minute, maybe *I* am still in here somewhere!

The past 9 years have changed me. There is no denying this. Some areas of change were for the better and some were not. I love my children and would gladly accept the typical change one experiences after becoming a parent.

But, after experiencing the fun and laughter alone with hubby and the rush of publicly speaking about other passions, I'm hoping the blurred perimeter of my core self continues to narrow!

Tuesday, January 8, 2008

One Year Later

Today is the one year anniversary of the day I started my blog. I still can't believe that one whole year has passed.

I started this blog driven by extreme emotion.

Extreme sadness-after 9 years of listening to new preemie parents at the beginning of their journey. I was, and still am, so very shocked that the preemies of today seem more affected by their prematurity, while they are still small. A diagnosis of cerebral palsy seems to come much sooner than it did 9 years ago (Paige's generation). I'm amazed at how many kiddos have brain bleeds now, compared to 9 years ago. Kids coming home on oxygen seems to be more common too. Why is this? Why aren't preemies coming out of the NICU in better shape than they did 9 years ago? Hasn't technology improved? Why are preemies still being diagnosed with cancer? Cancer that is a direct result of prematurity. Why can't this be stopped?

Extreme frustration-in our daily dealings with living life with a preemie and the long term issues related to prematurity. Not being able to get help for our child, in many areas, due to the lack of knowledge that the medical community possesses regarding older preemies, crushes our hearts. We are not alone. Preemie parents have little support as their child ages. School issues, breakdown of marriages, insurance issues, financial woes, sibling stress... the list is much longer and affects the extended family and the entire community as well.

Extreme disgust-at the media for painting a picture of prematurity that is so far from the truth that it is a crime.

Extreme anger-after hearing not one, but many neonatologists, talk about how preemies catch up to their peers by age 2/3. Hearing them speak to parents about their child breezing through the NICU and how that criteria means that they will be fine later in life.

And, the most disturbing aspect to prematurity that caused me to go over the deep end and start a blog was learning that no one, on a large scale, is following preemies to see what they are facing. How can treatment in the NICU improve if the current experiments are not being followed? Honestly... can someone fill me in as to how parents and doctors are making informed decisions if the long term (beyond age 2/3) outcomes are not studied.

I just went back and read my first post, written one year ago. Until today, I had not read it, since the day I wrote it. Wow, it was pretty raw. I can still remember the all of the above emotions running through my fingers as I typed.

I've learned a lot over the past year, about others and myself. I've learned that the world needs balance. We all don't feel the same way on every issue and that is ok. We are passionate about our kids and prematurity. That passion fuels our emotions. I've learned that I had a lot to learn. I encourage all to read the blogs that are listed on my side bar. Each and every one of them has brought something into my life and allowed me to continue on my journey, in an enlightened manner.

This blog would nothing with out all of the people who have commented here over the past year. As much as I would love to thank everyone by name, I am sure I would accidentally leave someone out. Whether you have left your mark here once, or hundreds of times, please know that I appreciate all of you!

I have received many sweet emails from parents who were thankful to have found this blog. I have shed tears reading your letters and hearing how you thought you were alone and how you have been helped by all of us here.

Then there are the letters from adult preemies who are now able to understand why they feel the way they do... I am so very glad you found your way here! And, you all have helped me to better understand Paige. I have made changes to the way I parent her after hearing your stories. Your voices and experiences are incredibly needed. I am honored to know all of you.

Finally, my hope for this blog is that it can be used as a tool.

If you are a parent of an older preemie who has not caught up to their peers, you will find that you are not alone.

If you are an adult preemie, I hope you that you will find some answers here.

If you are a member of the media, please notice that prematurity does not end at the NICU doors.

And, if you are a neonatologist, please spend some time reading about the long term issues that our kiddos deal with on a daily basis. Please use this information to help future preemies. Please don't just focus on getting them healthy enough to go home. They have their whole life ahead of them and deserve improved care based on outcomes of preemies past.

Saturday, January 5, 2008

No More Pictures On My Blog

I knew better than to put pictures on my blog. I really did. Against my better judgment, I decided to do it anyway.

Shame on me.

But, to the person who used Paige's picture in a YouTube video without asking me..


I will be spending time removing all of the pictures from past posts. I do not have the time or energy to adjust the wording though, so some posts will be a little confusing to readers who do not see this post first.