ALEXI

Alexi Korrine (aka, Lexi, Doodle, Bugaboo, Bug, China Doll, and for a few months Spike) was born on June 19, 2000 - 3 years and 4 days after her older sister. 

Fighting to Conceive

Alexi was truly our miracle baby!! 

After my older daughter was born I began to experience many different strange symptoms. Although I was under the care of an OB/GYN, he was unable to explain my symptoms or the fact that I was unable to conceive again. Finally after a very stressful visit with this doctor - who went so far as to say that I was a hypochondriac and needed to see a psychiatrist, I decided it was time to find another doctor. When I finally saw the OB/GYN who was over an hour away, but had come highly recommended to me by friends, I was a nervous wreck. But he sat me in his office asked me to tell him all about what was going on and seemed to really care. To my utter amazement he told me that this was not all in my mind and that all the symptoms I was describing were a part of a disorder known as PCOS (PolyCystic Ovarian Syndrome), and he felt very strongly that this is what I had. He ordered a bunch of tests and it was confirmed that I did indeed have PCOS - the #1 infertility disease that affects ALL woman. After I was diagnosed with this infertility disease my husband and I feared we would never have another child. Miraculously, after 1 round of fertility drugs, I became pregnant. 

Houston, We Have a Problem

My pregnancy was horrible. The fact that I was a much higher risk for miscarriage required me to visit the doctor on a weekly basis for the first few months to have blood drawn to evaluate my hormone levels. But finally we reached the point where the miscarriage threat was over, and the weekly blood draws could stop, and then I was informed that something was wrong with my blood work.

I was advised to see a Hematologist/Oncologist, which I did. I will never forget sitting in that office and being told there was a possibility that I could have cancer - specifically Leukemia. At that point I was 6 months pregnant and had only gained 2 pounds. I was paranoid that the baby my husband and I had wanted so much, was going to die because of my body. I was told that I should have a bone marrow biopsy to determine the cause of my very elevated blood levels. After researching the pros and cons I realized that having the bone marrow biopsy could put the pregnancy at risk - I was told there would be nothing that could be done, regardless of what they found, until after the baby was born, so we decided to put off the biopsy until our child was safely in this world. That was one of the best decisions that I ever made!

Our Miracle Arrives

My daughter was safely delivered - thankfully with a very mild labor - the day after father's day (my older daughter was born on father's day). And strangely enough once my daughter was delivered, my blood levels began to return to normal so I thank my lucky stars we did not risk a bone marrow biopsy.

I cannot express the joy that my husband and I felt when Alexi was born. She was beautiful!!  Everything we had been through was worth it....never in a million years did we think that our fight for a proper diagnosis for me, would prepare us for what we would go through with Alexi.

Something's Not Right

When Alexi was 8 weeks old I noticed that her eye had suddenly become swollen.  I had made an appointment at Sears to have pictures taken and I was worried that her eye would not go down in time for the pictures. I waited a couple of days and there was no change, and I realized the more that I looked at her, the more her face did not look right to me. I suddenly realized the ENTIRE side of her face was swollen. I was frantic!! I immediately called the Ped and told him that we were coming in. My husband met us at the office and the Ped looked Alexi over. Yes, it appeared the whole side of her face was swollen and it could be Hemangioma so we should keep an eye on it. Hemangioma? I had never heard of such a thing. Upon arriving home I immediately looked up Hemangioma on the internet and knew that was not what she had. One of the links that I had found also mentioned Craniosynostosis, I clicked on that link and was immediately brought to a picture of a child with Coronal Synostosis and began to cry......my daughter's face looked just like that little girl's face!

My husband and I began to check Alexi's head and noticed for the first time the flatness on the back right side.....how could we have missed that?! After researching on the web, I finally came to information about Positional Plagiocephaly.....after seeing the pictures, I KNEW this is what my daughter had. The flatness was on the same side of her head as the swollen face, so it had to be Positional Plagiocephaly.

A few days later we went back to the Ped. I arrived armed with information. After speaking with the Ped, it was decided that my daughter should see a Pediatric Neurologist. I tried making an appointment with a Ped Neurologist that was local to us, but they would not see us for 3 months. I was not happy about having to wait that long so I called another office 1 1/2 hours away. This office said they would see us the following week.

The Peds Neurologist did a full neurological evaluation on my daughter. She told us that Neurologically Alexi, was fine, but we should have some further tests run. The doctor wanted to rule out Craniosynostosis and there was a possibility, given the size of Alexi's head and the rapid growth that it was having, that she might also have Hydrocephaly. I could not believe it! Now another condition that I had never heard of was being thrown at me.

I immediately went home and researched Hydrocephaly on the internet. After finding information about that disorder I prayed to God that she did not have it. Why couldn't my sweet baby girl just be healthy, like most other peoples' children? Why were all these disorders I had never heard of being thrown at us?!

A few weeks later we had our appointment for the tests that Alexi would have. She was scheduled for an MRI and X-Rays and would have to be sedated. Although I was paranoid the day of the testing and I cried when I handed my tiny precious sleeping China doll over to the big burly X-Ray tech, it went very smoothly and there were no complications. When the tests were complete the Diagnostic place was ready to send us on our merry way, but I insisted that they tell us what we are dealing with. My prayers were answered, Alexi did not have Hydrocephaly - just a big head :o) - and we were only dealing with a Positional issue!

A few days later the Ped Neurologist called me and went over the results. Yes, Alexi had Positional Plagiocephaly, but now we needed to see a Craniofacial Plastic Surgeon. So much time had passed since we first noticed the problem so I was crestfallen when I was told we had to see yet ANOTHER doctor.

This time I decided to take control of the situation. I was NOT going to sit around and wait months to be fit into a doctor's schedule. After placing a few phone calls, no office would see us anytime soon. I found the Cranial Tech website and decided to call the doctors listed in CT over at Yale. I figured if they were listed on Cranial Tech's website, they must know about Positional Plagiocephaly and how to treat it! Luckily for us they accepted our insurance and agreed to see us in a couple of weeks.

My visit with Dr. Persing, was probably one of the easiest visits he has ever had. I knew all about Plagio - from countless hours of research and from talking to other parents whose children had Plagio - and I knew exactly what we wanted.  Although we had received good results with our efforts to reposition, I hadn't seen any further improvement in a few weeks and her facial asymmetry was still pretty significant. So when he suggested DOC Band therapy, my husband and I both agreed and needed no further persuasion.

It Was SO Worth It! 

It took almost a month for United HealthCare to reject our pre-approval (got to love speedy service!). Once the rejection was official we went ahead and had Alexi casted for her DOC Band.  The DOC Band arrived within a few days and on November 31, 2000, Alexi was an official DOC Band baby.

The progress of Alexi's asymmetry was amazing. We were seeing rapid results.  And on April 19. 2001, after only 4 1/2 short months, Alexi graduated with over 90% correction and close to 100% correction of the facial asymmetry.

We are VERY pleased with the results that we have gotten! Our insurance company UHC continues to deny the treatment saying that it is cosmetic. We plan to fight until the bitter end, but we know that we will probably never see our  money again....................but was it worth it? ABSOLUTELY! Now my little girl is as beautiful to everyone else as she always has been to me. No one will ever look at her again and tilt their head - wondering if they are seeing things or if her face is really lopsided. Although Alexi will always have an indented area on her skull (this was something that she was born with, probably due to her arm being positioned behind her head while she was developing in my womb) no one but my family (and now you ;o)  will every know that it is there

Update:  As you know, United HealthCare continued to deny our insurance claim for the DOC Band on the grounds that they considered Positional Plagiocephaly to be a "cosmetic" disorder and there was "no functional impairment present".  We lost our first appeal against UHC and decided for our second appeal to go externally to the NY Board of Insurance.  Much to our surprise and delight, the NY Board of Insurance is well informed on Positional Plagiocephaly and found in OUR favor, overturning United HealthCare's denial and stating out right that Positional Plagiocephaly is NOT a cosmetic disorder. To see a copy of the letter that we received, please click here If you do not have a PDF reader, please go here: http://www.adobe.com/products/acrobat/readstep.html to down load one for free.  If I can ever be of assistance in fighting against insurance, please feel free to contact me and I will help in any way that I can. 

 

Alexi, 2 days old.  Facial asymmetry was apparent here, but we did not see it until she was 8 weeks old
Taken at about 3 weeks of age - Alexi's Torticollis is very apparent in this picture	Taken at 13 wks of age.  Facial asymmetry is apparent here.  Note the fullness of the right cheek, the mismatched and misplaced eyes.
Taken at 13 weeks of age.  A top view of Alexi's head.  Note the flattened area on the back right side and the prominence of the right side of the forehead	13 weeks of age.  The circle on top of her head is where the indent is.  The circle on the right side of her head is where her head is flattened - notice how the right side does not have the nice contour that the left side has?  Lexi was a side sleeper so her flatness was a little different then back-sleeping Plagio babies.
Alexi at almost 4 months old - several weeks after reposition therapy.  Despite our efforts, facial asymmetry is still apparent.

12/00, taken 3 days after receiving the DOC Band.  You can really see how mismatched her eyes are here
After only 1 month in the Band, Alexi has lost the big "goose egg" that was on the upper right temple area, and her right cheek is now on the same horizontal plane as the left cheek	After only 1 month in the band, you can see her ears are now on the same horizontal plane
Alexi's first Christmas picture.  Interestingly enough, as you look at the next pictures you can see the gradual improvement of Alexi's eyes
Valentine's day of 2001	End of 2/01, hanging out at Me-Ma's and looking cute
March of 2001, counting down to graduation.
That's my girl, Spike!  :o) April 16, 2001, three days before graduation.  In this picture you can see that Alexi's face is just about 100%  symmetrical.........THANK YOU LYNN AND HEATHER!!
May 13, 2001 almost 1 month after graduation.	December 2001, 8 months after graduation.

Alexi Today (10/01/03)

Alexi is now 3 years and 4 months old, and she is doing wonderful! She is going to Nursery school and fits in wonderfully with her peers. Lexi's current dream is to grow up to become a doctor, a Mommy and Cinderella! :o) 

As you can see from the picture below, she still has slight fullness of her right cheek - but that's okay. Actually it's sort of a trade off because she has a lovely dimple in that cheek, more then likely because it's slightly fuller, but it's endearing if anything! Her right ear is also still forward, but it's not something that is of much concern because most people will never notice, unless it's pointed out to them.

Amazingly the indent in her head is almost gone! There is a slight dip in the skull, but nothing link the in-ground swimming pool that used to be there! We actually hope that we will see improved correction with Lexi's ears, now that the indent is almost just a memory. We were told at one time that the indent might have been holding everything in place --- so hopefully now that it's just about gone, some shifting back to normal positions can occur.

Our experiences with Lexi's Plagio taught us so much and the lessons that we learned continue to help us to this day. Lexi suffers from severe eczema and moderate asthma, and because of our prior experiences with Lexi and myself, we are able to get Lexi the best treatments available for her conditions. We have developed wonderful relationships with her doctors and never fear to ask questions or voice concerns.

We don't know for sure if our Plagio journey is totally at an end. We plan on having Lexi's jaw evaluated sometime in the near future, to be sure she has no jaw issues. Lexi tends to cock her jaw to one side, and our dentist also noticed this and said it was something that if it continues as she grows, we should have it looked at. But if there should be issue, we will deal with it........

That's actually the biggest lesson that we have learned through all of this - if something happens, we'll deal with it! It may not be what we planned, or what we expected, or what we wanted, but the love we have for our girls is what gives my husband and I, the strength to do what is needed to ensure they have the most healthy, happy, "normal", life that we can give them!

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©Craniosynostosis And Positional Plagiocephaly Support, Inc.2001