Information about Acute Flaccid Myelitis (AFM)

Submitted by Jason McKerry, MD, FAAP, Karen I Fryberg Tulalip Health Clinic 

Many of you may have heard about the recent cases of acute neurological illness seen in kids at the Seattle Children’s Hospital. I know that a child’s health is the most important thing in every parent’s life. I want to share some important information about the illness, Acute Flaccid Myelitis (AFM), a rare condition that affects the nervous system.

Below are common questions and answers provided by the State Department of Health:

Q: What is Acute Flaccid Myelitis (AFM)?

A: AFM is a rare condition with sudden onset of weakness of one or more limbs, sometimes accompanied by weakness of the muscles of the face and eyes.  In severe cases, the breathing muscles can be involved. In all cases, there are distinctive lesions in certain areas of the spinal cord seen with an MRI.

  • Symptoms of AFM vary in severity and range from mild weakness of a limb to absence of movement in all limbs.
  • Unlike most other diseases, suspected AFM are only reports.
  • The cases receive a final classification as confirmed or probable AFM, or are ruled out, only following a review by expert neurologists from the Centers for Disease Control and Prevention.

Q: How common is AFM?

A: AFM is quite rare. Last year, Washington state had no cases, and in 2014 there were only two, so this number of suspected cases within about a six-week time span is unusual. Clusters similar in size to the one we are currently seeing have happened elsewhere in the US, for example, in Colorado and Arizona.

Even with an increase in cases in 2016, AFM remains a very rare disease. Less than one in a million people will ever develop it.

Q: What causes AFM?

A: AFM can be caused by a variety of germs, such as enteroviruses, which typically cause milder illness in children such as respiratory infections. Other causes may be West Nile Virus, autoimmune disease or environmental toxins. For most reported cases across the US, the cause has not been identified.

It can also be mistaken for conditions that cause inflammation of the nerves such as transverse myelitis and Guillain-Barré syndrome.

However, when enteroviruses get into the central nervous system, they can cause more serious illnesses like inflammation of the brain. Polio virus, which is not being considered as the cause of these children’s illnesses, is a cause of AFM that is rare now in the US due to vaccination.

Q: Do you know what caused any of these potential cases?

A: At this point we do not know what has caused these potential AFM cases.

  • Oftentimes, despite extensive laboratory testing, a cause for AFM is not able to be identified.
  • It’s not known why some people develop AFM while others don’t.

Q: Is AFM contagious?

A: AFM is a syndrome, which is basically a group of symptoms caused by many different things. Many of the germs that cause AFM are contagious, such as enteroviruses, which typically cause milder illnesses in children such as respiratory infections. Enteroviruses can get into the central nervous system and cause more serious illnesses like inflammation of the brain, although this is uncommon.

Some of the germs known to cause AFM are contagious between people while others are not. West Nile Virus for example is only transmitted by mosquitos while common cold germs are transmitted between people.

Q: Are these cases connected to each other?

A: At this point we don’t know if these cases are connected in any way.

  • They came from four different counties (Whatcom, King, Pierce and Franklin).
  • Their age ranges between 3 to age 14.
  • And while we can’t discuss specific cases, some have unique symptoms from the others.

Q: Could this be something else?

A: AFM is one of a number of conditions that can result in neurologic illness with limb weakness. Such illnesses can result from a variety of causes, including viral infections, environmental toxins, genetic disorders, and an abnormal immune response that attacks the body’s nerves.

Q: How is AFM diagnosed?

A: AFM is difficult to diagnose because it can look nearly identical to other conditions or syndromes. It is diagnosed based on a combination of symptoms and a type of imaging test called an MRI or laboratory results.

A doctor can rule out other neurological disease by careful examination, for example, looking at the location of muscle weakness, muscle tone, and reflexes. An MRI is essential to diagnose AFM.

Q: Can adults get it?

A: Yes, but it may be more likely to affect children, perhaps because they typically haven’t built up as much immunity to germs as adults.

Q: Is there a treatment?

A: There is no specific treatment for acute flaccid myelitis, other than what doctors call supportive care, which means treating the symptoms. A doctor who specializes in treating brain and spinal cord illnesses (neurologist) may recommend certain interventions on a case-by-case basis.

Q: Do people who get it get their movement back?

A: According to the CDC some do. The CDC did a survey of patients from cases in 2014 investigation and got 56 responses. A small number had complete recovery of limb function after about 4 months, but some had no improvement.  Right now there is no long-term information available, but the CDC is working with states to collect the information.

Q: Is there any way to prevent it?

A: Because being infected by any one of a number of viruses are possible causes of AFM, steps to avoid infections include good hand washing and avoiding contact with people with respiratory and diarrhea infections may help.

AFM can be caused by different things, and because doctors know so little about the cause, there are no known specific preventative measures to recommend.

  • You can help protect yourselves from some of the known causes of acute flaccid myelitis by:
  • Washing your hands often with soap and water,
  • Avoiding close contact with sick people, and
  • Cleaning surfaces with a disinfectant, especially those that a sick person has touched.

Q: What is the investigation looking at?

A: We’ve worked to make sure that tests are being done that might point to a cause – these tests are now being reviewed by us and the CDC and we hope to have some preliminary information back soon.

We are investigating whether the cases have any links to one another and are reviewing other information including if they had recent illnesses. While the types of tests are really comprehensive, sometimes no direct cause is found.

I want to reassure all of our families that we are aware of the cases of AFM in our state and we want to provide our expertise and offer information to concerned individuals and families as requested. If your child is acting ill or unusually, please don’t hesitate to come see us at the clinic or contact us with any questions or concerns, 360-716-4511.

It’s all about the buckets

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By Micheal Rios, Tulalip News 

From November 4-6, the Tulalip Youth Center hosted the 1st annual Rep Your Tribe basketball tournament. Sponsored by Tulalip Youth Services, this tournament put a unique spin on the idea of reppin’ for your tribe. There was a men’s and women’s bracket, and in order to qualify as a team all players had to be from the same tribe.

Tribes from across Washington State made the journey to Tulalip in order to rep their tribe and do battle on the hardwood. Lummi, Muckleshoot, Puyallup, Colville, and of course the hosting Tulalip Tribes were among those who participated.

 

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After a weekend’s worth of inner-tribal battles, it was the Confederated Tribes of the Colville Reservation who stood tallest, having a team on both the men’s and women’s side reach the Championship game.

On the men’s side, Colville defeated Lummi in the Championship game. While on the women’s side, it was Puyallup earning the victory over Colville.

“This tournament was a very exciting one. We had a lot of very close games, but overall the sportsmanship between the teams was awesome,” says Lonnie Enick, Activities Specialist for Youth Services. “I think also it brings all the tribes closer to each other and, as a team, it brings family and friends together. Looking forward for the 2nd annual Rep Your Tribe, as of now Colville has the bragging rights. Also, great job to the Youth Service staff Darcy Enick, Shawn Sanchey, Sheena Robinson and Josh Fryberg.”

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Lady Hawks historic season comes to an end

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By Micheal Rios, Tulalip News 

The Tulalip Heritage Lady Hawks volleyball team (11-7) earned their first ever Tri-District tournament berth after an amazing showing at the NW1B District tournament. The team traveled to Tacoma on Thursday, November 3, to face-off with the (12-5) Eagles of Evergreen Lutheran High School.

In the 1st game, Tulalip went down early, trailing 4-12 at one point, and weren’t able to get any momentum going. They dropped the opener 10-25.

The momentum continued to be elusive in the 2nd game as the Lady Hawks again went down big early, trailing 2-12 before calling a timeout. Following the timeout, they ladies showed some fight and got some rally points going, but they weren’t able to overcome the early deficit. They dropped the 2nd game 18-25.

Down 0 games to 2, and with the season on the line, the Lady Hawks finally got their offensive game going. They played the Eagles seemingly point for point in the early stages. At one point the game was tied 3-3, then again tied at 14-14. This time it was the Eagles calling a timeout to regroup and talk over their strategy. Unfortunately, the Eagles just had too much firepower on this day and the Lady Hawks weren’t able to counter for a full game. Tulalip lost the very competitive 3rd game 22-25 and the match 0 games to 3.

The brief appearance in the Tri-District tournament marks the end of the season for the Tulalip Lady Hawks (11-8). Looking back on the season it was full of firsts and surprising developments for the volleyball program led by coach Tina Brown. The eleven total wins is a new school record, as well as the undefeated start when they opened the season (5-0). All in all, it was a very successful season that saw the Lady Hawks grow as a team and find unprecedented achievement on the volleyball court that led them to make their deepest postseason run in school history.

“I am so very proud of our Lady Hawks volleyball team,” stated coach Tina Brown. “The girls made it to tri-districts for the first time, they played with pride and fought hard. What a great season.”

 

A look into TOCLA with Attorney Jim Kerney 

 

By Kalvin Valdillez, Tulalip News 

The Tulalip Office of Civil Legal Aid (TOCLA) provides assistance in civil legal issues to low-income tribal members who have to appear in front of the Tulalip Tribal Court. Attorneys are available to help tribal members navigate through the court system.  TOCLA Attorney Jim Kerney breaks down the different levels of services the program offers.

“TOCLA offers three levels of services which are full representation, basic representation, and brief services,” Jim explained, “On the brief services level we offer guidance only. That guidance pertains to how the legal system and court process works. We discuss the legal issue and what type of documents they need, but we offer no legal advice.”

Jim explained that when TOCLA offers brief services, the attorney has the ability to speak to both parties and extend the same service to each side. However, Jim stressed that no legal advice is offered to the clients receiving brief services. “Once both parties are spoken to that’s the extent of services that can be offered, unless both parties can benefit from, or need, mediation. Then we can arrange mediation sessions between both parties.”

“The next level would be basic representation. On this level we speak to only one of the parties. The reason for this is because at this stage an attorney/client relationship is established and confidentiality comes into play. We also talk about strategy and what type of evidence is needed,” Jim stated. “We will assist with completing and reviewing documents and with further guidance through the court process.”

“And then we have full representation, that covers everything. These are cases that need more involvement,” said Jim. After explaining the three different levels of services, Attorney Kerney then spoke of the three programs within the TOCLA program.

Jim states, “TOCLA consists of three programs, the first is Civil Legal Aid. The client is referred to the TOCLA Staff Attorney, which is me, and I provide general civil assistance like Family Law Issues, Consumer Law, and Public Benefits, which is like Social Security Income appeals. The next is the Tribal Parent Advocacy Program, or TPAP. We have one and a half Parent Advocate Attorneys, Amy [Lettig] and Maya [Titova], and they represent parents of tribal children who are involved in dependency cases. They work closely with beda?chelh. The reason for the half time parent advocate is because in cases where both parents need representation, having two advocates available doesn’t cause conflict between the parties. The third program is VLAP, we’re fans of acronyms here at TOCLA. VLAP stands for the Victim of Legal Advocacy Project.  Sylvia [Hanna] is the Victim Advocate Attorney and Stephanie Ancheta, our paralegal, works primarily with this program. What they do is work exclusively with the Legacy of Healing program. All of the referrals come from the Legacy of Healing and they work with victims of domestic violence and sexual assault. VLAP is grant-funded and income is not a restriction. Their work generally starts with protection orders and they have the ability to represent tribal members not only in the Tulalip Tribal Court but also in state courts. And that’s TOCLA in a nutshell. We are here to represent low-income tribal members in need of assistance with any civil legal issues.”

For further information and legal assistance, Jim has made himself available for drop-in hours twice a week. On Mondays he can be found at the Tulalip Administration Building in conference room 262 between the hours of 10:00 a.m. and 2:00 p.m. and on Wednesdays he is available between 12:00 p.m. and 4:00 p.m. at the Tulalip Tribal Court, office 118.  He can also be reached at (360) 716-4512.

 

 

Contact Kalvin Valdillez, kvaldillez@tulaliptribes-nsn.gov 

Passing Ancestral Teachings To Our Young Men

Tulalip tribal members Andy James and Cody Monger are leading the Young Men’s Group and helping to guide youth through life.
Tulalip tribal members Andy James and Cody Monger are leading the Young Men’s Group and helping to guide youth through life.

By Kalvin Valdillez, Tulalip News 

A new program that teaches the young men of Tulalip about their treaty, hunting, and fishing rights began this month. The group meets at the Family Haven center located across from the Boys & Girls Club. Led by Tulalip tribal members Andy James and Cody Monger, the group will meet on Tuesdays and Wednesdays after school from 3:30 p.m. to 5:00 p.m.

“We are saying ages 12-14 but that is a recommended age. We aren’t going to turn anybody away who wants to participate,” stated Cody.

Young Men’s Group will feature many fun activities such as fishing and drum making. Andy expressed that while he is excited about making pre-cut hand drums, he eventually wants the group to start creating them from scratch. He believes that it is essential to know how to track, hunt, skin, soak and stretch the hide for their drums.

“That’s where it all starts. Our ancestors never received pre-cut drum kits and its important our kids learn the teachings the ancestors passed down generation after generation. Afterwards, they can keep the drum and use it for cultural purposes and ceremonies or they can gift them. What they decide is up to them but the important takeaway is they wanted a drum, they made a drum, and now they know how to [make a drum] in the future.” Andy stated.

Among the cultural activities and important lessons, Young Men’s Group will also cover areas that teen males want advice in, but don’t necessarily know how to ask for. Topics such as conflict resolution, how to deal with anger, and family, social, and romantic relationships will be discussed during group meetings.

Cody expressed, “We will be involved a lot, just helping with anything they don’t get at home or in school.”

“Our intent is not to take the place of the parents but to help these young men progress into life,” Andy added.

By instilling values and culture, Cody and Andy are taking on an incredibly important task of molding the minds of the young men of the Tulalip community. Young Men’s Group participants now have the opportunity to learn the teachings and traditions the Tulalip ancestors practiced and apply those lessons while learning how to survive in today’s society.

To sign up and for more information please contact Andy James at (360) 716-4403 or Cody Monger at (360) 716-4935.

 

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Progress for the future: Understanding the changes to Minor Trust Accounts

By Micheal Rios

Progress is impossible without change. For that reason changes are coming to how Tulalip youth will receive their per capita trust fund money. The changes primarily affect the disbursement of the money. Previously, when a tribal member has turned 18 years old and achieved their high school diploma or G.E.D. they would then receive 100% of the money in their minor trust account. Effective as of January 1, 2017, tribal members ages 18-21 who have achieved their high school diploma or G.E.D. will now receive 25% of their trust in yearly payments.

Additionally, tribal members who do not achieve their high school diploma or G.E.D. will have to hold out until they become 22 years of age in order to collect on their trust account. The same disbursement method of yearly payments at 25% applies.

There are multiple reasons why these changes to trust account disbursements are needed and will take place. The principal and easiest to understand is this: changing the trust disbursal from one payment at 100% to four payments at 25%, allows the collecting tribal member to save thousands and thousands of dollars in tax penalties. Please see visual chart below to see how a June 2017, Tulalip high school graduate is saved over $10,000 in tax penalties by receiving four payments of 25% as opposed to one lump sum. That’s more than $10,000 being saved from forfeiture for each tribal member to pocket and spend how they see fit.

 

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The vast majority of tribal members should agree that the change in disbursement is necessary if only for the thousands of dollars it saves for each young adult. It’s saving over $10,000 for the June 2017 graduates, and that dollar amount saved will only grow exponentially in the years to come.

Some tribal members may suggest that this is a scheme of some sort, instead of seeing this change as progress for the future. In fact, this change is a direct result of the experience and testimonials witnessed by Rosie Topaum, who was the driving force behind changing the disbursement amount. For years now, she has heard the countless stories of young Tulalip citizens who spent their entire lump sum in a matter of weeks and wish they could have a do over with their trust money.

“For the last two years I’ve been brainstorming with my staff and members of the community about how we can make this process better for the youth,” says Rosie, Enrollment Manager. “I know change can be hard to accept, but it’s necessary. There are so many people who’ve shared their story with me of how they blew through their trust money, loaned it out to family and friends only to never to get it back, or simply wish they would have waited to be older and more mature before getting such a large amount of money. We want to help our youth and give them the best opportunity to succeed.”

Rosie really saw traction for her idea to change the disbursement amount after she sent out a survey via tribal-wide email, personal email, and the tribal member only Facebook group. Back in June of last year this survey on the effectiveness of the minor trust accounts went out and she received 285 respondents, 98% of whom were tribal member parents or young adult tribal members advocating for a change of this sort. For those wondering, 285 respondents is a huge amount. Consider at the most recent semi-annual General Council, the largest amount of respondents to cast their vote was 316.

There may be some young adults who require a larger distribution than 25% and there is a lump sum request option available to them. A request for a higher percentage can be made before the trust committee who will make a recommendation to the Board of Directors whether to grant or deny the request. Examples of requests that can be granted are to start a business, purchase a home or land, pay extra costs with college, and pay for medical bills.

Along with the disbursement changes from 100% to four payments of 25% comes the mandatory education class on budgeting and money management each tribal member must attend prior to receiving their first distribution. This financial skills class will be offered once a month, on a Friday from 2:00p.m. – 6:00p.m. at the Tulalip Admin building in room 162. Dinner will be provided and transpiration made available by the Youth Services Department.

One final note: none of these changes to the minor trust accounts dictate what a Tulalip citizen can do with his or her money. For example, after achieving a high school diploma and taking the mandatory, one-time financial skills class, the youthful tribal member will receive the first 25% distribution check of their trust. Not the parents, Board of Directors, nor any notion of the tribe can tell that individual what they can or can’t do with their money. However, the hope is that whatever is done with that money, by the time a year goes by and the next 25% distribution check is cut, the tribal member has gained more life experiences as an adult, and is more prepared to make wise decisions regarding their future. As we can call attest, you will learn to make better decisions in life with experience and time. That’s progress.

Questions? Please contact Rosie Topaum at 360-716-4300 or rtopaum@tulaliptribes-nsn.gov Also, there will be another community meeting at the Admin Building in room 162 on November 29 at 5:00 p.m for those who weren’t able to attend any of the previous meetings.

US Recognizing Tribal Rights

“Being Frank”

 

By Lorraine Loomis, Chair, Northwest Indian Fisheries Commissiont

 

A wave of federal recognition of tribal sovereignty and treaty rights has reached a high water mark in the closing days of President Barack Obama’s administration. We hope President Donald Trump will help push that wave even higher.

President Obama kept his campaign promise to meet regularly with tribal leaders and give us a seat at the table where decisions are made about health care, education, natural resources, economies and many other aspects of our lives. For the past eight years he has invited all 567 federally recognized tribes to the White House for an annual Tribal Nations Conference. That’s something no other president has done.

More than that, he has confirmed that tribal sovereignty and treaty rights are the cornerstones of Indian communities and the federal government’s trust responsibility to the tribes is sacred.

He’s had good help from people like U.S. Environmental Protection Agency Administrator Gina McCarthy, who earlier this year instructed the agency to consider tribal treaty rights throughout its decision-making processes for all actions. It was the first time a director of a federal agency has done that.

That led to the recent signing of a memorandum of understanding among the federal agencies to acknowledge treaty rights as the center of our trust relationship. Right where it should be.

Some of this surge in federal recognition is directly tied to the Treaty Rights at Risk initiative begun in 2011 by tribal leaders in western Washington.

We started the effort because we are losing the battle for salmon recovery. Salmon habitat is being destroyed faster than it can be restored. If there are no salmon to harvest, our treaty-reserved rights are meaningless.

We are asking the federal government to align its agencies and programs and lead a more coordinated salmon recovery effort. We want the United States to take charge of salmon recovery because it has the obligation and authority to ensure both salmon recovery and protection of treaty rights.

We received more assurance that our message is being heard when the White House Council on Environmental Quality last month announced the strengthening of a federal task force to establish priorities for restoring Puget Sound. The task force will work with tribal, state and local governments to develop an action plan that will better coordinate and advance work aimed at improving the health of Puget Sound.

We will not accomplish our goals without aligning our strengths to protect and restore the long-term economic strength and environmental quality of our region. Our treaties might well be what holds the effort together for everyone.

Habitat is the key to salmon recovery, protection of our treaty rights and ensuring that salmon will be here for future generations. If salmon are to survive, and if our treaty rights are to be honored, we must make real progress in habitat protection and restoration.

We hope President Trump is listening and will continue President Obama’s legacy of honoring the promises made to Indian people through treaties that are the supreme law of the land.

Free auto-leak workshops in Snohomish County

Does your car drip? Ever wondered if a ‘spot’ on the ground came from your car? Want to learn how to properly maintain your car? Join the experts for a FREE Auto Leaks workshop – a $125 value. Open to everyone in Puget Sound. At this workshop you’ll:

  • Get a free professional car health assessment from a certified automotive instructor.
  • Learn how to identify and prevent leaks.
  • Receive tips on repairing minor common leaks.
  • Learn preventive maintenance.
  • Leave class with a FREE Vehicle Maintenance Check Kit and the confidence to talk to your mechanic.

Our final workshop of 2016 is on November 16th from 5:30pm-9:30pm at Marysville Pilchuck High School.

Space is limited! Register now! Go to www.fixcarleaks.org and click on the “workshops” tab.

These free workshops are brought to you by the Department of Ecology, Snohomish County Surface Water Management, and WSU Snohomish County Extension.

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