Kelsey Warren, is a local 15 year old currently suffering with Lyme Disease, other tick borne illnesses and genetic disorders.
UPDATE FROM KELSEY'S MOM, OCTOBER 8th:
Kelsey continues to face new challenges and we continue to search for answers to those challenges. We have recently been taken into a practice she has been on a waiting list for 8 months. Very are very hopeful and optimistic about this. They have treated the most complex cases and have succeeded where others have failed.
We are grateful for your efforts! Please let me know if there is anything we can do to assist.
UPDATE FROM KELSEY'S MOM, AUGUST 11th:
The week after discharge from UMMS we were back at AGH ER and then to UMMS ER for increased chest and abdominal pain. They completed another scan at UMMS to confirm the clots had not grown. Good news, they did not! Bad news, no explanation given for the pain. These pains continue and we will see her primary today and are looking at a referral to heart specialist to ensure there are no heart issues.
We are continuing to work with the doctors and research other medication delivery methods for her now that IV is not an option (because she can not have a port or cath at this time) and the oral medication is not effective due to the high level of bacterial infection in the gut. We know that when doors shut it is for a reason and know that another or others will open.
Thank you for your support and kindness.
Julie
UPDATE FROM KELSEY'S MOM, JULY 27th:
I wish I were writing with good news, unfortunately that is not the case. The port that was supposed to deliver medications directly into Kelsey's system never worked out. It was removed Tuesday. Wednesday she was taken to urgent care with shortness of breath and chest pain. A blood clot was suspected. After testing, it was confirmed Kelsey has a blood clot in her lung. Kelsey and her mom were flown to the University of Maryland for treatment and further testing. While here they found a second clot in the jugular vein. Kelsey was discharged Saturday on blood thinner injections 2x day for 3 mos. They feel the clots are from the port and infections. Pain will decrease as the clots shrink.
Kelsey is trying to be strong but appears tired. Some family outings have been planned in hopes that it will pick her up.
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In July 2014, her world was turned upside down as she was experiencing severe abdominal and chest pain. Kelsey has large bruising measuring the entire length and width of her
thigh, that occurs regularly, without injury. She is often unable to eat without increasing the pain and has now lost 23 pounds. She experiences shortness of breath, has periods of intense headaches, sore throats and painful hard lumps on her legs.
Between July to December 2014, Kelsey's family took her to countless doctors and specialists, traveling more than 4,000 miles, paid thousands of dollars in out of pocket medical expenses, and still had no answers. After some specialized testing, it was determined Kelsey had several tick borne illnesses that infected several systems of the body.
There is great controversy surrounding tick borne illnesses and how to treat them, making it very difficult to find a doctor who will fully treat the illnesses. Due to Kelsey’s sensitivities to additives and her intestines' inability to function properly due to the tick infections, many of the medications must be formulated (compounded) for her. She must also have her genetic disorders properly addressed and treated to obtain optimal health and recovery. Although a long journey, her family now has a team of medical personnel who are knowledgeable of Kelsey's conditions and are working together to bring her back to health.
Anyone who knows Kelsey, knows that she loves to sing! She also attended karate two times a week with great joy and enthusiasm. She worked every day at the family bike shop, enjoyed bike riding for miles, loved being in the pool and attended karaoke parties every weekend. She also sang at several large community events and contests...she was truly full of life. This illness has changed and taken most of this from her. On a special and rare occasion she will sing. The pool, when she is able to get in, is now therapy as it is the only time the pain is reduced. Kelsey fights her body to complete a 15-minute modified Karate program one time per week, but refuses to let the diseases win and take this from her.
Kelsey's family prays that through Kelsey's difficult journey others will become educated on tick borne illnesses, learn how to prevent it and treat it.
UPDATE FROM KELSEY'S MOM, OCTOBER 8th:
Kelsey continues to face new challenges and we continue to search for answers to those challenges. We have recently been taken into a practice she has been on a waiting list for 8 months. Very are very hopeful and optimistic about this. They have treated the most complex cases and have succeeded where others have failed.
We are grateful for your efforts! Please let me know if there is anything we can do to assist.
UPDATE FROM KELSEY'S MOM, AUGUST 11th:
The week after discharge from UMMS we were back at AGH ER and then to UMMS ER for increased chest and abdominal pain. They completed another scan at UMMS to confirm the clots had not grown. Good news, they did not! Bad news, no explanation given for the pain. These pains continue and we will see her primary today and are looking at a referral to heart specialist to ensure there are no heart issues.
We are continuing to work with the doctors and research other medication delivery methods for her now that IV is not an option (because she can not have a port or cath at this time) and the oral medication is not effective due to the high level of bacterial infection in the gut. We know that when doors shut it is for a reason and know that another or others will open.
Thank you for your support and kindness.
Julie
UPDATE FROM KELSEY'S MOM, JULY 27th:
I wish I were writing with good news, unfortunately that is not the case. The port that was supposed to deliver medications directly into Kelsey's system never worked out. It was removed Tuesday. Wednesday she was taken to urgent care with shortness of breath and chest pain. A blood clot was suspected. After testing, it was confirmed Kelsey has a blood clot in her lung. Kelsey and her mom were flown to the University of Maryland for treatment and further testing. While here they found a second clot in the jugular vein. Kelsey was discharged Saturday on blood thinner injections 2x day for 3 mos. They feel the clots are from the port and infections. Pain will decrease as the clots shrink.
Kelsey is trying to be strong but appears tired. Some family outings have been planned in hopes that it will pick her up.
__________________________________________________________________________________
In July 2014, her world was turned upside down as she was experiencing severe abdominal and chest pain. Kelsey has large bruising measuring the entire length and width of her
thigh, that occurs regularly, without injury. She is often unable to eat without increasing the pain and has now lost 23 pounds. She experiences shortness of breath, has periods of intense headaches, sore throats and painful hard lumps on her legs.
Between July to December 2014, Kelsey's family took her to countless doctors and specialists, traveling more than 4,000 miles, paid thousands of dollars in out of pocket medical expenses, and still had no answers. After some specialized testing, it was determined Kelsey had several tick borne illnesses that infected several systems of the body.
There is great controversy surrounding tick borne illnesses and how to treat them, making it very difficult to find a doctor who will fully treat the illnesses. Due to Kelsey’s sensitivities to additives and her intestines' inability to function properly due to the tick infections, many of the medications must be formulated (compounded) for her. She must also have her genetic disorders properly addressed and treated to obtain optimal health and recovery. Although a long journey, her family now has a team of medical personnel who are knowledgeable of Kelsey's conditions and are working together to bring her back to health.
Anyone who knows Kelsey, knows that she loves to sing! She also attended karate two times a week with great joy and enthusiasm. She worked every day at the family bike shop, enjoyed bike riding for miles, loved being in the pool and attended karaoke parties every weekend. She also sang at several large community events and contests...she was truly full of life. This illness has changed and taken most of this from her. On a special and rare occasion she will sing. The pool, when she is able to get in, is now therapy as it is the only time the pain is reduced. Kelsey fights her body to complete a 15-minute modified Karate program one time per week, but refuses to let the diseases win and take this from her.
Kelsey's family prays that through Kelsey's difficult journey others will become educated on tick borne illnesses, learn how to prevent it and treat it.