By Denise on Saturday, June 03, 2000 - 02:20 am:

My 16 yr. old daughter went to bed Sat. nite with back pain and woke up Sun. morning unable to get out of bed. She was diagnosed HMS and possible EDS about 6
weeks ago after suffering for 5 years and having ligament transplants on both ankles. She had to crawl to the bathroom in much pain and Mon. morning I took her to
doc and she was given Vicodin for pain. He said he knew nothing about HMS and sent her home. That evening I took her to urgent care and they tried every narcotic
they had and nothing helped the pain. It just made her sleep. She was admitted to the hospital the next day and and after running every test available, and seeing every
one from internal medicine, neurology, rhumatology, psychology, etc., she was sent home on Thursday without much relief. Now they want her to see a psychiatrist
(who wouldn't need one after all that!) Has anyone else had the HMS hit their whole body with pain at the same time like that? Does anyone know of a good doctor
in the San Diego, California area? Please help this frustrated Mom! Denise

By Eppie on Saturday, June 03, 2000 - 02:21 am:

Denise:

My HMS (or whatever the doctors care to call it these days) literally started out of the blue one month after giving birth to my son. I like to think of myself as an
intelligent human being, so I did a ton of research. Basically, overproduction of ovarian hormones (namely estrogen in concert with relaxin...probably related to an
ovarian cyst) caused my joints to become loose and painful (lots of weird popping and cracking sounds too!). These hormones work together to disrupt the collagen
in ligamentous tissues cauing them to become weak and elongated (versus strong and tightly bound as they are supposed to be). I now notice that my joints get more
"loose" and painful right before my period. Ask your duaghter if she notices anything like this. I recently started taking birth control pills to regulate the old
hormones. There may be another explanation for you daughter's condition, but I thought I'd throw this one at you.

As far as treatment is concerned...prolotherapy along with sound nutrition and lots of good sleep seems to be the only thing that I've found that can actually rebuild
the collagen of weak ligaments. I have read numerous articles and books on the subject, and have talked with people that have successfully completed treatments;
however, I, myself, have not started prolo. I'm going to give my joints a couple more months to see where they can get by themselves.

Anyway, please feel free to email me with questions/comments.

Eppie (in Alaska)

p.s. Although the Mayo Clinic (yes, the Mayo...I went there b/c I was at my wits end) had never actually seen a postpartum mother with all of her joints affected
(usually limited to the pelvic girdle), they did agree with my "self" diagnosis. At least I wasn't nuts, as some of the doctors closer to home thought.

GOOD LUCK and GOD BLESS!

By Jonathan B on Saturday, June 03, 2000 - 02:21 am:

Hi Denise
Sorry to hear of your daughters pain ,I have HMS and periodacally get similar pain.Like your daughters it doesn't respond to pain killers(although my doctors won't
give me anything stronger than Dihydrocodeine or indomethicine).
The best way I have found to releive and prevent the pain is to change what I am doing very regularly.That way I think I don't give the muscles time to settle into a
position and cause pain.
Hope you get better medical help soon.
Take care jonathan B

By Stacey on Saturday, June 03, 2000 - 02:23 am:

Hi there, I too live in San Diego. My husband and I are both navy pilots, although I haven't been able to fly for several months due to the extent of my pain. Mine
continues to get worse as the navy docs try every test known to man even though they already diagnosed me with HMS. I have started acupuncture on my own (it can
help with the pain, I can recommend a great group that is relatively inexpensive) and that is about it. Pain killers and anti-inflammatories don't seem to help,
sometimes stretching or mild exercise works for me, anyhow if you want to talk more or want the name of the acupuncture folks feel free to email me. Good luck.
Stacy

By Greg on Saturday, June 03, 2000 - 02:23 am:

Denise,

I'm sorry to hear about what happened to your daughter. But I'm glad that you as a parent care so much about her. I'm 19 now an dhave had pain since 15. I
occasionally do get the "all-over" pain but this tends to be either from on-coming flu or it would start in my back, and I'd get all worked up and upset and then it
would spread. I think chronic pain counseling may help, as I am looking for a good counselor myself now. I hope things get better!

Greg

By Kat on Saturday, June 03, 2000 - 02:23 am:

Hey,
I'm 18, dx probably EDS. I have never had to go to the hospital, but yes, I have my entire body in pain before. Rarely it gets bad enough that I can't walk. This week I
have had to take narcotic pain killers to sleep at night. Unfortunately, being in pain can be a problem with school. Along with my EDS I also have a very weak
immune system, and last semester I missed 20 days of school.
A psychiatrist won't help the pain =) but will definately help deal with the related emotions! If you would like to email me privately I would be happy to answer any
questions.
Kat

By Denise on Saturday, June 03, 2000 - 02:24 am:

I would like to thank everyone for their nice posts. My daughter Ashleigh has posted here before. She is getting better and we think it was caused by an activity she
did on Friday night. She played a game at an ice rink called broom ball where they were on the ice in their tennis shoes not skates. I thought it would be too much
for her, but she insisted it wouldn't be so I let her go. She felt fine on Sat. morning and until the evening but I guess it took a while to hit her. Thanks again - Denise

By Janie on Saturday, June 03, 2000 - 02:25 am:

Hi Denise,
It's very common to have a delay between the activity that causes the pain and the actual onset of pain. I know for me that the delay can be up to three days! As your
daughter becomes more knowledgeable about her body through trial and error, she will find what activities to avoid and which ones work alright for her.
Best wishes,
Janie

By Lori on Saturday, June 03, 2000 - 02:36 am:

Janie,

My name is Lori Halliday, I am a 30 year old mother of three, Ella, my youngest is 22 mos. Laurel Brown, my dear friend from Drury college (a decade ago) has
compelled me about her neighbor, Kirsten Kelly (Portland Oregon) and Kirsten's daughter Willow Kelly (2yrs.) who are fully entrenched in the SCF and the
systems and are truly reliving your nightmare. Please help us find a way to discontinue this tragedy as Willow has not been faring well in foster care (for seven
months) and her newborn brother, August Emerson (a week old) has been snatched from his mothers arms too (last week), because the case is still pending. I've
been trying and praying for a presidence setting case like this. I am an ameture web creator and a full time mother but please take a look for yourself at what we
have gathered in a few weeks for the site and tell those who know how it is to be in this place. Go to www.freewillow.bigstep.com . You can sign an electronic
petition, write a letter for the campaign, make a credit card or check donation for the legal fees, and most importantly call us immediately because last friday, Jan.

home for now. You might have the info or contacts that literally save the day. Just a hope and a prayer. Please call asap. I have included Kirsten's letter which also
appears on the site. Plesae forward this to anyone who can help. We have 2 1/2 days.
God bless you and yours, Love,

Lori Halliday
650-566-1934


86 Rebecca Lane
Atherton, CA 94027


THIS IS KIRSTEN KELLY'S LETTER> THE WEBSITE WIITH MORE INFO IS WWW.FREEWILLOW.BIGSTEP.COM

My name is Kirsten Kelly. I’m writing in regards to my daughter Willow Kelly who has been stolen by the Oregon state department Services to Children and
Families (SCF).

On June 2nd of 1999 my partner Stephen and I brought Willow to our naturopathic physician at approximately 3pm for burns on her feet and ankles she received
when Stephen accidentally started to place her in a bath of water that was too hot.. She immediately advised us to go directly to OHSU (Oregon Health Science
University) ER in Portland, Oregon. And that we did. Within thirty minutes of our stay SCF were all over us. My daughters 5% first degree and 3% second degree
burns were left untreated by the hospital for five hours. An allegation of child abuse was brought upon us at that time. I feel some kind of prejudice due to the dread

locks my partner and I had at that time.

A bone scan was ordered and taken on the fourth of June. The bone scan revealed fractures in her arm. The dates have been pretty unclear to us but a report from
a follow up x-ray that was taken at Legacy Emanuel Hospital on June 18th says the fractures in her left arm were 14 to 21 days old. This means that they would
have been no more than six days old in the ER. Stephen and I had no reason (nor did the community of people I live amongst or the Doctors in the ER) to believe
she had a broken arm. My mother immediately flew into Portland from Chicago and my aunt from Arizona. We informed SCF of our family history of bone
disorders when these breaks were discovered and they denied us all medical treatment. We were very upset that they would not look into this, so we did our own
research. I have been trying to find medical experts to explain this to SCF with no cooperation from SCF.

It was not until mid-October that Willow was allowed to see an orthopedic specialist. Even then Her primary care physician, who was chosen by SCF, would not
make a referral. So my mother and I brought her and paid cash for the visit. After Willow had been in a foster home for one month, my mother and father decided
that my mother stay here and get an apartment to foster Willow. July 16th is when Willow moved in with my mother. It was not until November 1st that the judge
realized SCF was not cooperating with us to seek medical attention. She then ordered they stay closely involved. We still had to see Doctors referred to us for
insurance reasons, which SCF holds the insurance. They were specialists from OHSU, the same “specialist” that diagnosed Willow with non-accidental trauma.

I have read a copy of “Report of Work Group on Child Services Department (the previous name for SCF), March 1995” and found many of commitments and
responsibilities of SCF broken.

“Children belong with their families” SCF.
“Statements of Value”

#3 “ Children should be helped to stay with or return to, their families through the provision of intensive, individualized services and supports that build on the
strengths of children and families and are responsive to there needs.”
I have gone through many and all services SCF asked of me with nothing but positive results. SCF still fails to acknowledge this.

#5 “ Families (biological, foster, and adoptive) should be viewed as partners and should fully participate in planning, implementing and evaluating services.”
I have had no opportunity for partnership in this value.

#7 “Services should be individualized, addressing the unique capacities and needs of each child and family so that these needs, not the availability of resources,
determine the services that are provided.”
On December 16th I called SCF to ask why my visitations had been cut to five hours per week and was told by the PIC, David Cosloy, who discussed it with his
supervisor Nancy Brown and reported to me that funding was not available. I then offered to pay for supervised visits and received a call on December 21 from my
case worker Amy Topaz stating” Willows needs were as important as they have been but the need for extended visits of 10 hours a week was not necessary.”

“CSD must make every effort, through visitation and other measures, to support the child’s attachment to his or her biological family”
SCF seems to be doing everything but make every effort to support willows needs with me, her mother!

#10 “Services should minimize disruption in a child’s life, and be as normalized as possible”
Willow has not come home since our visit to the hospital on June 2nd. She has been poked, pushed and disturbed, moved from one hospital to another, not because
of severity of burns but not having a foster placement. She has been moved from one hospital floor to another from room to room, she them went into foster care,
was then moved to my mothers house then moved back into foster care, our visits have changed numerous of times and the place of where visits were available.
SCF has threatened my mother several times for removal of Willow from her care. That was very stressful on her, which also causes stress to Willow.
Finally on January 4th SCF came and woke Willow from her nap and took her away from my mother with NO WARNING. They placed her back into foster care
where she had been from June 16th to July 16th. My mother has been 100% cooperative with SCF and any requirements they have asked of her. The only reason
we have from SCF for the removal of Willow is that my mother has too much trust in me and is unable to protect Willow from any harm I might cause her. And that

she needs to be put back into a regular foster home to prepare her for adoption outside of our family. SCF is concerned that my parents might return Willow to me
since there have been no criminal charges filed.
They also stated that “every effort should be made to ensure that the first foster placement is the child’s only foster placement.”
They have moved my poor baby too many times.
“ Foster parents also will need to feel that they have a part in decision making, are listened to by the agency and receive meaningful responses to express concern”.
Again any time my mother had any concerns or input it was taken out of context and consequences of threats of removing Willow from her. One example is
requesting medical specialist to look into our family history of bone disorders. Another time is when my mother went to OHSU to request the bone scan taken on
June 4th and found out it was not available because Dr. Joe Zennel hadmisplaced them. The x-rays from the 5th are available but this bone scan can reveal much
more in depth about the bones.

Foster Parents Participation (my mother went through the classes to become a legal foster parent)
#15 Foster parents both related and unrelated should receive accurate and timely information and should be invited to CRB (citizen review board) and court
hearings.”
SCF had a permanent plan of “ return to mother”. If this was not possible plan B the concurrent permanency plan is adoption to “maternal grandmother.” We
were not informed of any plan being changed until January 4th when SCF came and woke Willow from her nap and just took her away leaving my mother in
complete distress and feeling helpless. They had no explanation but “this is what we have to do”.

Elements of the plan
#1 in making the decision, the child’s attachment to family must be considered as well as unmet safety.”
Willows needs were not met in any way by taking her away from my mother.
#4 b “The service plan should be developed in a meeting involving CSD, the family, and others important to the child.”
The meeting for removal did not included any family members just The red flag staff that includes the district attorney, Willows attorney (who has had extremely
little
contact with Willow), the child abuse investigators, and SCF staff, that includes Amy Topaz; case worker, Nancy Brown; supervisor, and some others I’m not sure
of. All of which have spent no more than ten hours with my family or me
#7 “Needs-based placement practice individualized placement decision must be based on the child’s need. Workers should make every effort through accurate fact
gathering and assessment to make the best match of the child’s placement, with the goal that the first placement will be the only placement.”
Again SCF fails this.
#13 Meeting the child’s attachment needs-Biological parents should be included to maximum extent possible in the life of the child, whether the child is in foster
care
or residential treatment they should be provided significant opportunity to spend time with there children in order to meet there child’s attachment.”
Several documents state the extreme attachment and bond between Willow and I. Since the beginning of this case they have been reducing my hours of visitation
down to five hours a week.

My child was 17 months when the accident occurred and is now 25 months old. She is at the most rapid stage of her life where she is growing emotionally
physically, mentally and spiritually and clearly has an extremely large amount of love and attachment for me. Five hours a week is just not enough. She needs to be
home.
“ For children in foster homes or residential treatment, regular visitation by the biological parents in a setting comfortable to both the parent and the child should be
facilitated in the absence of compelling reason to the contrary.”
Willow and I meet five hours a week at SCF Midtown branch office and spend our time in a 12 by 12 white wall to wall room with a supervisor watching us in the
corner.

I am a loving caring and responsible mother who has done nothing but nurture, love and protect my child from any harm. Unfortunately I have not been able to
protect her from SCF. All I want for my children is to have a safe, healthy and happy home. I have not abused, neglected, or allowed anyone to take those actions
upon her. The District Attorney, not SCF has filed a petition to terminate parental rights for me. I had bad council from June to November 1st. This council
pressured me into waiving my right to an initial trial. I feel that this poor council is what gotten me so far into this. We spent all of our money paying for this
attorney
that has misrepresented me. I have now applied for public council.

Willow is a healthy smart and an extremely gentle little girl. She has no signs of child abuse. This is not child abuse but SCF has made a case against me. I am
worried that SCF will force their jurisdiction on the baby that we are expecting in one week. I am very desperate and need any help you can offer.

By Ashleigh on Saturday, June 03, 2000 - 02:37 am:

I just wanted to thank you all for posting, it's nice to know there are people out there who know what i am going through and that im not a freak of nature :o)
Ashleigh