The Newsletter of
SWAN USA
Our Swan is disjoined like many families of children who have a
Syndrome Without A Name
Help us make the connection
Spring 2005 Issue #2
 

Differences in the Undiagnosed Community

Just as our children are all different so are we as parents. We have different backgrounds, personalities, expectations, priorities and many more differences. In building our undiagnosed community it is best that we all be knowledgeable of these differences. If we all have a better understanding, we will have a wonderful support system.

Sometimes it is hard to understand why others who are in very similar situations have different views. Why is it extremely important for some to receive a diagnosis and for others its just not a big deal? There are even those who don't even realize that there child's symptoms have a higher cause. There are many deciding factors that play a roll in which category we fit into. Some examples are - Will my child benefit by having a diagnosis? - Will we have more knowledge and access to medical care? - Will there be emotional relief of having closure of the unknown? Though many times these questions don't surface, we do answer them with actions and beliefs. We will all have different theories to these and other questions, but none of us will absolutely know the answers even for our own children. It is also rather interesting that many of us will answer differently week by week or month by month. Because our daily lives change all the time that means our priorities change. It might be that roller coaster that we all hear about.

There are also differences in the types of undiagnosed conditions. For some it might be a combination of symptoms and/or behaviors and for others it is the lack of multiple symptoms and/or behaviors that bring them to our community. Some children are born with their undiagnosed condition; in these cases symptoms can increase and decrease. Some children can have a sudden onset of symptoms and others may appear gradually. Some symptoms may not be seen and some may appear to be more than they are.

What ever brings us to the undiagnosed community we should all welcome each other with open arms. There is one more thing that is often different, that is the way each of us needs to be supported. Some may feel at ease with just knowing others are out here, where as another may get comfort by helping others with the support they need.

All these differences make each of us just as unique as our children. These differences make us who we are, so lets be proud of each other and ourselves for our uniqueness. The acceptance of differences will make a happier life for many and a society that will better world.

Your Friend,

  • Amy Clugston
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    I welcome you all to add your stories, pictures, worries and such.

    Cassidy
    Cassidy was born 5 weeks premature with no complications during pregnancy or labor, except she had a low body temperature and had to be under a heat lamp for about an hour. She did become jaundice but that subside and we were released from the hospital after 3 days. She developed a hemangioma on the side of her face shortly after birth, which grew to the size of a golf ball, closing off her ear canal. The doctors started perdnisone injections into the sight of the birthmark to shrink it. This began at about 3 months of age and continued until about 10 months of age. I was informed that this drug could stunt her growth but she would eventually catch up in size. She was quite small to begin with weighing 5 lbs. 2 oz and 17 in long at birth. Everything seemed normal the first few months except she wold not make eye contact with others except me, but that did change at about 3 months old, she became quite sociable. At 7 months old I did notice she wasn't doing other things babies her age were doing but I assumed this was because of her prematurity and she would catch up.

    At 10 months old Cassidy was referred to a specialist because of poor weight gain.She had been 12lbs for about 4-5 months without gaining weight. At this time she was diagnosed with failure to thrive and we were referred to birth to 3 program which they would start physical therapy and speech therapy. Cassidy would gag a lot when eating baby food and table food. When therapy's stated we realized she had joint laxity especially in her hips. At this time Cassidy would 'army" Crawl but not get upon her hands and knees. At around 11 months old she started crawling normal and pulling up to a stand on furniture, she seemed to be progressing well. Then at 1 yr. Old she began having seizures. I took her to a well know hospital in my area where she started (and still is) being followed by a neurologist, geneticist and endocrinologist. To this day we cannot find a reason for her seizures or developmental delays. She ahs been tested for several syndromes, fragile x and anglemans's just to name a couple. 2 MRI both normal. Fish test normal and several blood and urine tests to look at chromosomes, sugar levels, hormones and other various things, every thing is normal. Cassidy's eye sight and hearing is excellent. She is 3 years old now and still does not walk; she will cruise furniture or walk when she has something to hang on to. I have taken her to 2 different orthopedics and they both say that there is no physical reason why she can’t walk. They say it is just do to her developmental delays and she will eventually walk. She does say several words now but just a few are understandable. She also does a lot of 'hand ringing" mostly when eating or when she is excited. She can eat table food now with no complications. Cassidy is a very happy child and is quite sociable but prefers to play with adults. She getting better at interacting with other children now. If there is anyone with a child that seems similar to Cassidy or anyone with any suggestions please contact me.

    Heather Norton
    4896 Old 8 Rd.
    Rhinelander, WI 54501
    hnorton2@charter.net


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    Individual Education Plan/Program IEP
    For many of us IEP time is now here or right around the corner. Many parents feel overwhelmed with all or part of the IEP process. We often don't understand or know that our knowledge of our children is very important in an IEP. Sometimes we are lead to believe in the people who are educated in the education of children with special learning needs. We should absorb their educated opinion, but believe in ourselves first. When it comes down to the decision-making we know best what our hopes, dreams and priorities are for our children. We need to be educated in the IEP as much as possible, so we can do what we think is best for our children and not what everyone else thinks is best for our children.

    http://www.iep4u.com/

    http://www.wrightslaw.com/


    Future Planning
    Recent events in the news have many parents thinking about the future of our children when we are gone. These thoughts bring many of us to a place we would rather not go, but it is important to be prepared. Many of us don't have a clue where to begin. The three things that appear to be important is a Letter of Intent, Will and Special Needs Trust.

    The letter of intent or life plan is a good start. The letter will need to be as descriptive as possible. This letter will be used by the proposed guardian or trustee. You can start by writing down the day to day stuff your children need. You can also use some of the topics listed below to get you started.

    Family Background Religion
    School / Education Advisory
    Social Contacts Diet
    Medical History Housing
    Hobbies Skills / Strength

    http://www.betterwaypress.com/lifeplanners/

    http://www.cqc.state.ny.us/hottopics/futplan.htm



    Swan USA State
    I will continually be looking for Swan State Helpers. Below is a list of things we will need these helpers for. This could be one person or many to divide tasks up. One doesn't need to do all of these; each of the areas will differ.
    1. Help getting the word out, by sending information to genetic counselors and families.
    2. Be a contact person for families in your State or Region.
    3. Possibly send inserts in the newsletters with state or regional resources and such.
    4. When we have enough swan families, we may need support group organizers for different areas
    5. Be in a support system with other state helpers.

    Together we will build our community.


    SWAN State Contacts

    Michigan - Amy Clugston
    amy76jo@yahoo.com

    California - Annette Humphreys
    annette@customracestuff.com

    Illinois - Jen Zahm
    momoftwingles@verizon.net

    New York - Sheila Hayes
    haye@juno.com

    Wisconsin - Bridgette & Bryan Shriek
    sillychick1@hotmail.com


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