Comments for HLH Journal

Comment on HLH: A Simple Description by damond burns jr

damond burns jr — Mon, 06 May 2013 17:49:53 +0000

my little sister is 15 years old and she is battling HLH along with her current life struggle of not having a speen as well as having uncommon variable auto immune defitientcy dissorder. Although it kills me to find out that she most likely will die due to the brain damage caused by the HLH in her bloodstream. I have found some salvation in the fact that there is still some help because the doctors found it early.

Comment on HLH: A Simple Description by Gracie Gallegos

Gracie Gallegos — Tue, 30 Apr 2013 04:21:13 +0000

My heart goes out to all families experiencing the fear and confusion of HLH. My daughter was diagnosed with secondary HLH along with Systemic Juvenile Arthritis in September 2008. She was only 6. Preceding her diagnosis she was diagnosed with mono 4 months prior but was already getting over it to treat. She started 1st grade and one day she became ill and took her to pedi dr, only to be told she had viral illness and it had to run its course. Well, after 6 or 7 days she was becoming more lethargic and I took her to hospital when I noticed the whites of her eyes were yellow. We were in the hospital 3 weeks before a diagnosis and treatment began. We almost lost her! It was the worst time in my life. She was treated with Kineret (anakinra) injections, cyclosporine, prednisone and methotrexate at San Antonio Childrens Hospital. She had the rash, spiking fever, enlarged organs with fluid accumulation around them. She had leukopenia , thrombocytopenia, anemic, neutropenia ….she had it all. When she started the itching all over her body; it was unbearable to watch until medicine started working to relieve that symptom. Once I found out how often she could have that medicine; I was calling and bugging nurse until she got there every 5 minutes!
My daughter is 10 y.o. now and healthy as can be. You would never know she had been sick. She was treated by her pediatric rheumatologist. In 4 short days after treatment began it was like looking at a different child completely. I just remember my daughter asking to go to play room… I couldn’t get her there fast enough. She does her yearly bloodwork. It looks great!
The only thing I can say is advocate for your child. Make your Dr write things down for you that are important for treatment and follow up care. The kind of stress emotionally and physically, you are under is too much to make sense of things right there. Do not be afraid to ask LOTS of questions. Who cares if the Dr or nurse repeats themselves. Dont wait on labs either. Once I knew how long it would take to get results; I called them! I also got copys of labs at every follow up. Get a support system in place.
Because of my daughter, I had a career change. I just finished nursing school about to test for my boards.
My heart understands. I remember the struggle and challenge of giving my daughter shots every day for 16 months. The crying of your child or loved one is difficult. Stay strong and committed to your treatment plan. Sometimes the hardest thing will be following through. I remember just wanting to give my girl a break; no meds, no shots. Stay strong, finish treatment. God bless all of you… I will be praying for all of you.

Comment on Contemplating the Bone Marrow Transplant by Jacqueline Hayes

Jacqueline Hayes — Fri, 26 Apr 2013 01:26:39 +0000

Thank you for this page. This is by far the hardest and most confusing thing I’ve faced in my life. My daughter is devastated!

Comment on HLH: A Simple Description by Brandy Flare

Brandy Flare — Tue, 23 Apr 2013 16:41:12 +0000

Helen, the road may be a very long one. Pray a lot and appreciate every moment you have with your son. Trust your motherly instinct, it will guide you. My prayers are for you.

Comment on HLH: A Simple Description by Brandy Flare

Brandy Flare — Tue, 23 Apr 2013 16:08:36 +0000

It is amazing how many people are now effected by H.L.H. I think it has always been here, just could not detect it properly. It is rare and acts like so many other diseases. We, who have been effected, should come together and find other options to cure this terrible disease. Chemo and a bone marrow transplant are not as dependent as they say. Studies show that most people who suffer from H.L.H. will still pass away years later. All the fighting, all the pain, and it may still come back. What a sad thought for those who are facing H.L.H. today and I pray everyday for your wisdom and strength. It is a very aggressive disease that has no mercy on anyone it touches. I lost my daughter eight years ago. She was ten, her name was Makayla. She lived for almost seven months before she passed. The fighting of the H.L.H. was hard and defeating for us. It seemed everyday something new would happen to her. Her eye site would go, her lungs would fail, her CNS was being destroyed, and she always needed blood. The list goes on and on. The scary thing is you do not know what damage is being done because of the H.L.H. or because of all the medicine they are pumping into the body. They said Makayla had rheumatic fever at first, they were so wrong. I gave my baby sixty-five thousand milligrams of aspirin. Be careful, because your instincts are always right! My daughter was in such a critical condition after the aspirin, she was dying twice as fast. It was a downward spiral for her, and she suffered greatly. I would also suggest to anyone facing this, to never agree to a bone marrow transplant, unless it is a one hundred percent match. The body will almost always reject the marrow and the child or adult will be in severe pain. Not just regular pain, pain beyond belief. I am so sorry to anyone facing this disease or who have already lost a loved one from H.L.H. Losing a loved one is heart breaking, but losing a child is soul tearing. Your soul just continues to long for them, for the rest of your life. I pray for all of you and may God bless you with healing.
I have written a book about the things Makayla went through, and it will be published soon. If anyone would like a copy just let me know. You can reach me at brandyflare72@gmail.com
My heart and prayers go out to anyone who comes face to face with H.L.H.

Comment on HLH: A Simple Description by Helen Cheung

Helen Cheung — Tue, 23 Apr 2013 14:54:58 +0000

Dear Evan,

Thanks a lot for the link. It was very useful. I’ve forwarded the reply from the lab to my doc who was originally planning to stop the treatment. I strongly opposed it for too risky. After consideration, I decided to let our son receive the continuing treatment until the result of the genetic testing comes out. Although the genetic testing is expensive, I would like to have it started ASAP. Two weeks now, I am still waiting for the doc’s further advice and action. I am so anxious and have no idea what I can do with this. I can only have chance to see the doc once for two weeks. Now I am staying with my son at the hostel near the hospital in case of emergency and for the convenience of regular appointment, dare not going home, wondering when these days will end.

Comment on HLH: A Simple Description by sam therin

sam therin — Wed, 10 Apr 2013 21:45:42 +0000

Hi,
I am 24 years old and recentley been diagnosed with HLH, It started as a fever then things got rappidly worse, I had my spleen removed as it was about to rupture and that seemed to cure it, within a few days I was out of hospital. I am back at work and trying to live a normal life again.

My doctor has told me that if this does not come back within the next 10years then he can class it as gone so I guess its a waiting game.]

I have been getting ill alot since loosing my spleen but am so fortunate that HLH has not come back!

I thank god everyday for giving me another chance in life and my prayers go out to all of you who have lost loved ones.

My dream is to be here for my baby girl who is 18months and that will keep me fighting forever.
for everyone dealing with this know you are not alone, you can make it through this, just keep fighting!!

Comment on HLH: A Simple Description by admin

admin — Sun, 07 Apr 2013 20:25:10 +0000

Hi Helen,

The lab that we used for our daughter, Zoe, was the Cincinnati Children’s Hospital immunodeficiency lab. I don’t know if they are able to do tests for patients internationally, but I would encourage you to contact them for guidance. If they cannot do your testing they might be able to point you to a lab that can help.

http://www.cincinnatichildrens.org/service/d/dchi/tests/

Evan

Comment on HLH: A Simple Description by Helen Cheung

Helen Cheung — Sun, 07 Apr 2013 09:25:29 +0000

My son bangji was diagnosed with this horrible disease in his 2 months old on 1 Feb 2013. He got much better after 8 weeks of initial chemo treatment under 2004-hlh protocol. We did the evb test with negative.the drs told us that bmt could be done only if flh has been confirmed. However, the hospital cant do the genetic test for us. Could anyone tell me if there are any reliable labs to do the genetic test with hlh? My email:helenrealm@gmail.com

Comment on HLH: A Simple Description by Erika

Erika — Wed, 03 Apr 2013 20:45:08 +0000

Our beautiful daughter( 39 )was diagnosed with HLH beginning Jan.2011, went through chemo, did pretty well for 2 weeks. Then the “monster” came back with a vengeance. On March 22, she closed her eyes forever,
leaving behind 6 beautiful children and a heartbroken husband. Her HLH was probable caused by the Epstein Virus. She was diagnosed right after her mild fever started, got the best care, and died anyhow. The problem is that the Doctors don’t no more than what we know. They still follow the 2004 protocol. It is a most horrible disease that came out of nowhere and destroyed our lives. God blessings to everyone that lost a loved one or is still fighting for their lives, especially the sweet little children.