Home from SickKids Hospital

Photo of Denika during one of her tests in Toronto

We're very happy that Denika is home for the holidays. They found a Ganglioneuroblastoma tumor in her abdomen and later found her to have ROHHAD Sydrome. She was flown from her home in Newfoundland to Toronto to be seen by the doctors there. After many tests and consulting with Haven's doctors Denika returned home at the very end of November.

MERRY CHRISTMAS DENIKA!!!! We are so happy you are back home!

Susannah - Adrenal Cushing's Syndrome

Miss Susannah needs your prayers!

I met Susannah and her mom Jess about 6 or so months ago. I happened upon a forum of a mom desperately trying to find out what was going on with her daughter. The story sounded exactly like a ROHHAD child but after months of testing and doctors Susannah found herself at NIH having surgery on her Adrenal Glands for Cushing's Syndrome.

She made it through surgery and has been home since. The photo above is her first day of Kindergarten.

Tonight I learned from her mom that Susannah is back in the hospital.

Last night her parents went to put her to bed and she was ice cold. Three temperature checks all ranging between 90 and 93 degrees - a sign of hypothermia while relaxing in her house! However, Susannah was feeling great and had no complaints.

Once at the ER the checked Susannah's sodium level and it was low at 121. After 7 pokes of a needle to get her blood they finally gave up and gave her 5 sodium chloride tablets. It took a few hours to get her sodium back up to a healthy level of 133 (135 - 145 is normal for a child).

They were able to get some blood and the family is currently waiting for good news. Her Endocrinologist doesn't believe there is an infection - it is thought that she is experiencing Thermal Dysregulation - which she had prior to her surgery.

Please send some good thoughts to Susannah - we want to get her home for Thanksgiving!

We love you Sus.....can't wait for you to see Haven's new puppy! I'll send pictures to your mom! :)

Halloween Friends

Sophia and her sister!

Mason and his sister Cameron

Vanessa and her son Josh

Junior -- dressed up as a Ninja!

Summer 2009

So we have kept in contact with our friends as much as we could while in isolation all summer and most recently this month. Time just slips by and you don't even realize it! We met some new ROHHAD children and we continued to learn of our disease through talking with each other. Comparing notes and symptoms and treatments tried by doctors is a great way to learn how to beat this illness.

We are so happy to be able to share our story and the other children. Finding out our daughter has cancer was devastating and then to find out she also has a disease so rare that no one really knows about it and there is no treatment or cure and this disease can kill is unimaginable. One night you go to sleep happy and the next day you wake up and your child is slowly passing and no one knows what to do.

Together the moms of ROHHAD children have joined together to fight this disease and hope you will continue to share our story with your friends and family and that they share it. Help our children not be forgotten. Please read our stories:


NOREEN
One of our newest friends, Noreen. I met her mother a few weeks ago as she emailed me wanting more information on ROHHAD because her daughter had been diagnosed. She lives in the Netherlands and her doctors have been in contact with the doctors from France that originally wrote about ROHHADNET.

Noreen is 10 years old and all of her symptoms began to show about the same time Haven's did - Early infancy.
As I learn more about Noreen and her mom Alieke I will be happy to share. There is so much to know. We hope all of you are doing well.



SHELBY
I would like to introduce Shelby. She lives in California and has been diagnosed with ROHHAD Syndrome. We just learned of Shelby this summer while we were at the hospital. My dear friend Maureen, Sophia's mom, introduced me to her story. We do not know much about Shelby or her story yet but I am excited to talk to her mom and learn more about all of them.

Shelby has been battling a serious case of the flu. A ROHHAD child getting sick with anything is a very scary and dangerous combination. Shelby had IV medication for 5 days and is slowly recovering at home.

We wish you well Shelby and hope to be in touch soon.



CHARLIZE JOLIAT

I introduce Charlize Joliat. If you remember I found this article in Canada about a girl diagnosed with ROHHAD Syndrome. This is that beautiful little girl.

Originally tested for Kawasaki Disease but when that came back negative she began testing for Cushings Syndrome in December 2008. In May 2009 they were still testing Cushings when she began to have ventilation issues. While in the hospital she contracted Rota Virus and finally on July 17th Cushings was ruled out. On July 18th they began working with Chicago and Dr. Weese-Mayer's team. She was tested for PHOX2B - which came back negative and confirming ROHHAD Syndrome.

Since July 23rd she has been on a 1,000 calorie diet.


Charlize in the hospital. Their family is preparing for the trip to Chicago and making sure Charlize is healthy enough to travel. The doctors in Chicago are suggesting she have a tracheotomy before traveling but her doctors believe her bi-pap will suffice.

Charlize is required to wear her oxygen mask at all times. We have not heard back from her mother as to when they will travel to Chicago. We wish them good news and safe travels. You can read more on Charlize at: caringbridge.com/visit/charlizejoliat

JENNA
As I was locked away this summer with Haven and Kris in isolation I was not able to keep in good contact with all the moms. But we did receive a sweet email from Lisa, Jenna's mom, that she was able to go to the beach for the first time in 3 years since being diagnosed with ROHHAD. Jenna has been on a ventilator since being diagnosed and is unable to speak due to the multiple seizures that ROHHAD has caused.

I was very excited to learn that Jenna went to the beach and had a great time. I love to hear that. We hope to hear more from Lisa and Jenna. Love you all.


NIKETA BROWN

This is Nikki and her sister Tiffany from Australia. This photo was of Niketa right before she got sick and went in to the hospital. Beautiful coloring girls!

Soon after Niketa ended up in the hospital and this is when I met her mother Karen. She had been in the hospital for some time and it was hard to catch Karen as she was back and forth seeing her daughter and still taking care of the rest of the family. This photo shows Niketa getting ready for her MIB scan.

Niketa (or Nikki) spent 11 months and 8 days in the hospital. Can you even imagine? I was heartbroken for Karen. I couldn't do it. Nikki stayed strong and so did her mother and family. Periodically we'd get an update from Karen that all was good but she couldn't talk. This photo shows Nikki doing her lung function testing. We're very happy Karen has able to take some time and enjoy life lately.

Nikki has finally been released from the hospital and is home with her family. She is required to sleep with a mask at night but we hear she is doing well considering. I couldn't imagine how Nikki managed that length of time in the hospital. We love you all and we're glad you're back home!!!


MASON BYROM

Mason really had us all worried this summer with a scary night of dangerously low oxygen levels and increase CO2 levels. He was rushed to the hospital at the beginning of the summer only to find out that he had Pneumonia. Very dangerous when already on a ventilator to breathe. Mason was kept in isolation over 2 weeks.

He was sent home with an Oxygen tank and it still remains in his room. Mason is hooked up to the ventilator when sleeping. However, during his stay at the hospital and for a few long days afterwards he had to stay hooked up 24 hours a day with extra oxygen.

Although Mason had a rough start to his summer he sure did make the best of it all. Mason became a Chef for a day and went to lots of baseball games. He's a huge Cardinals fan out there in St. Louis! Mason also celebrated a huge 5th birthday this summer. HAPPY BIRTHDAY MR. MASON!

A few weeks ago Mason had another bout with an illness that had him rushed to the hospital. He was in for a few days on oxygen and monitored closely. Once home he rested for a few days while staying on his ventilator. He is now back in school and has even had a meeting with Make-A-Wish. We're excited to see what Mason wishes for!!!! Check up on Mason at his site: caringbridge.com/visit/masonbyrom

SOPHIA ADAMO
Miss Sophia had a rough beginning of the year that led in to a rocky start to the summer. She had Pneumonia three times before the start of the summer and her blood pressure and heart rate began to climb steadily. Sophia was in the hospital in July to undergo an Adrenal Gland procedure. Some children with ROHHAD have developed other life-threatening illness caused by ROHHAD and everything must constantly be checked.

Although Sophia had another occurrence with Pneumonia she was able to have some fun at the lake and hanging out with her family this summer. Sophia also began preschool this year - above is the photo from her first day of school.

Miss Sophia celebrated her birthday recently. Turning the big 5! HAPPY BIRTHDAY SOPHIA! During her birthday party Sophia began not feeling so great and was back in the hospital to find out that once again she has Pneumonia. She has a great team of doctors and her mom is awesome about getting her to her appointments and keeping us all updated! You can read more about Sophia at her site: caringbridge.com/visit/sophiaadamo Love to all of you.


JOSH WOOTEN

Josh had a huge summer. Being on a ventilator for many years 24 hours a day 7 days a week with minimal breaks Josh was finally old enough and ready to have surgery to insert a pacer that will help him breathe and let him be free from the ventilator.

This is the diagram of the breathing pacers and how they work.

Slowly over the summer Josh has worked on his breathing and making his diaphragm stronger with every breath he takes. He has done an awesome job and so has his mom Vanessa. It is amazing to see photos of him at the shooting range, bowling, and even playing basketball. We're proud of you Josh! Josh is also about to become an uncle! What a great summer. You can read all about Josh at his mom's blog site: vwootenworld.blogspot.com

UPDATES

I will be updating on all of Haven's friends this evening. Please check back to learn what they have been doing and to get all their web sites! :)

Update on Susannah - Cushings Syndrome

Hi Everyone....I'm so excited to get an email from Jess - Susannah's mom - today. I have been keeping updated on Susannah's recovery through her web site. It's been about 2 weeks since her surgery and thought I'd share her mom's happy post from their site to all of you!

Dear Family and Friends,

We are home and and getting caught up on our rest. Susannah is doing fantastic. She went to church and Sunday School over the weekend and is getting back into the groove of the normal routine. She still seems to get tired pretty quick, but I have to keep reminding myself, it was less than two weeks ago that she had MAJOR surgery.

The final visit from Dr. Stratakis last Friday was everything we hoped for. He brought a copy of the pathology report on the removed adrenal glands. After dissection and staining they showed the rare nodules on both the cortex and medulla (outside and inside) of the glands. This was exactly what we hoped to see. It also showed they weren't the kind that could lead to a more serious disease called Carney's Complex, so this was also excellent news.

Dr. Stratakis says he now expects to see her height shoot up and her weight go down over the next year. He wants to see her back in September for just a couple days of blood work. He also wants me to keep in contact with him about her fevers....he's "fascinated" that they've stopped now that the cortisol is fully weaned back. He will also see her again in a year for another follow-up. We've been educated on what to do in times of sickness or injury to supplement her cortisol, and reminded, numerous times, that adrenal insufficency is a very very dangerous thing. However, if you medicate correctly, you can live a completely normal life.

We are so excited for that to start for Susannah. We will keep you up to date with her exciting health and physical milestones as she recovers.

Love to all - Jess

Easter pics from friends

Check out some Easter pics we received from our friends!!!!

Julie sent us a picture of Mason and Cameron with her on Easter. Their Aunt from Virginia came out to visit them.

Here is Miss Sophia on Easter with her new bunny.

Sophia's school is having a fundraiser for her - you can read about it on her site and help with making a donation.

The date's are May 6th and 7th and the children at Busy Bee will be jumping for approximately 15 minutes. There is a flat sponsor donation of $5.00 to make it easier for the children. During the 2 day event Maureen will be at the daycare with Sophia. You can get the letter and sponsor sheet that has been handed out from the school by contacting Maureen (Sophia's mom).

Check Out Our Friends

Junior's Amazing Journey
Loving, Laughing, Learning, and Living Life to the Fullest

Leigh Ann - Age 7 1/2 - ROHHAD ANGEL

Tuesday - NEUROBLASTOMA ANGEL

Tuesday's Mom's Blog

Joanna - Spina Bifida


Mason Byrom - 4 Years Old - ROHHAD


Sophia Adamo - 4 Years Old - ROHHAD

Josh Wooten - 12 Years Old - ROHHAD

Susannah - 5 1/2 Years Old - Cushing's Syndrome - PPNAD

Susannah - Cushing's Syndrome - Haven's Newest Friend

PLEASE give lots of prayers, thoughts, good wishes (however you want to do it) to Susannah Wednesday morning. She is in Bethesda undergoing a bilateral adrenalectomy for PPNAD - a rare form of adrenal Cushing's Syndrome.

Susannah is 5 1/2 years old.

Isn't she just adorable!!! This is Susannah - you can visit her web site at: http://www.carepages.com/carepages/susannahzahn2007. You will have to become a member to see her but that really is just an easy step and took me 30 seconds.

There is an amazing story as to how I connected with Susannah and her mom, Jessie. Somehow in my research and scouring of the Internet I found a webforum called webdiagnosis. The post was from over 2 years ago and it was the plea of a desperate mother asking for help with her daughter. She had all these crazy symptoms and no one knew what could be going on with her daughter. After reading everything she sounded very similar to Haven and the many other wonderful chidren I know.

So I posted a brief story about Haven and gave her my email address. Never in a million years did I expect to hear from the mom or even think that email was good anymore. BUT I DID.

Tonight - I received an email from Jess telling me a brief story of her daughter Susannah.

I can't wait to learn more about Susannah.

Love to Mason!!!

This morning I received an email from our friend Julie - MASON'S MOM - He was sick all night and they weren't able to sleep at all. Mason's dad stayed home with him today as he was ordered from the doctors to stay home on the vent for the next few days. I was so sad to hear that Mason's oxygen was very low and he was sick. Around 5am when he started to get ready for school is O2 fell in to the 70's and slowly climbed in to the 80's. Please visit him at his site and let him know you are thinking of him. I worry about all of our kids all the time and to hear that one of them is sick really bothers me.

On top of that - I went to lunch with Emily for my birthday and came back to my desk and there was a beautiful package. After looking around for a few seconds I found the card. Mason sent me the most beautiful package of candy, fruit, and cheese/crackers!!!! I was told the boxes were for Haven. Seems like Haven has enjoyed my birthday as much as I have!

We love you Mason! :) Thank you so much for the gift.

ROHHAD: Mason, Sophia, and Jenna

Hey everyone....some of our most precious gifts out there have been having some health scares this past couple of weeks and I'm asking everyone for a few minutes of their day to think of these three. I have received 3 emails that are just terrifying and I know scary for the parents.

Mason had to be rushed to the ER on March 22nd around 1am for a rapid spike in his CO2 levels and no matter what they tried they couldn't get them lowered. At the same time his heart rate kept dropping and went down in to the 50's while is O2 monitor kept alarming. Mason will be having a sleep study done this week and will be visiting Cardiology next Monday. His parents are handling everything well and are watching our Mason very close.

Jenna's mom Lisa contacted me and on Monday March 23rd Jenna had to be rushed to the hospital and was admitted to the PICU. A rash called Petechia was found on Jenna's leg and the doctors with lots of blood tests finding that she had a viral infection, low white blood cells, and low platelet count. Her oxygen levels dropped causing her to stay in the hospital for a week on oxygen and being monitored. Jenna is on vent 24/7. We are waiting on word from her mother as Jenna had more testing done on Monday.

Today I received an email from Maureen about Sophia. She was at work and received a phone call from Sophia's daycare that her breathing was extremely labored and she was very red faced. Sophia had her tonsils and adenoids removed in February in an emergency surgery after a sleep study showed extreme sleep apnea. Once at the hospital and after testing Sophia has been found to have Pneumonia. This is her 4th bout of Pneumonia since December 2008. She is also being watched for high blood pressure and will be visiting Pulmonary and Cardiology again, as well as, her Urologist for her recent UTI.

Please take a moment and wish our babies back to health. We worry about them all every day. Thank you to the mom's for keeping us updated on the children. We love you all.

Mason makes news for ROHHAD! KSDK St. Louis

Mason on KSDK St. Louis News


Check out Mason on TV!!! He's famous and he's cute!!!

You can read his entire article HERE!!!

Great job Mason!

Joanna - Spina Bifida - Haven's newest friend

This is Joanna - She is one of Haven's newest friend's - and mom's friend. Joanna has Spina Bifida and I met her mother through a nice woman that sent letters to Haven while she was on the MACS site in January. Joanna was featured on there as well.

I wanted to share her site with you and will place her link to the side where I have Haven's friends listed.

You can click on Joanna's picture to go to her web site or click HERE.

Leigh Ann - Our Angel - ROHHAD Child

Who is this beautiful angel? She is most definitely an angel that I am truly excited to tell the world about. This is a dedication to Leigh Ann from Kentucky.

Leigh Ann was born an only child via c-section on April 19, 1990. She weighed 9lbs and was 20 inches long. Leigh Ann was born a healthy, happy child with an amazing shine in her eyes. At around he age of 1 1/2 years old (January 1992) Leigh Ann began to show signs of Hypothalamic Dysfunction and rapid weight gain. In October 1992, she experienced her first Cardiorespiratory Arrest and at this time she had full blown UNDIAGNOSED ROHHAD. Leigh Ann stopped breathing while at day care and at the hospital she went in to code-blue.

Between birth and 1992 doctors failed to recognize any symptoms that her mom was telling them. Diagnosis: too much food.

In 1992, ROHHAD was not known at all. Doctors blamed her breathing problems on obesity and obstructive sleep apnea - they never checked for central Hypoventilation. Because nothing was known she went without proper breathing treatment for over a year. Leigh Ann's endocrinologist and pulmonologist did mention Hypothalamic Dysfunction but since her MRI of the brain was normal they dismissed this. Even though Leigh Ann had abnormal endocrine results - passed off as medication related.

Leigh Ann spent 3 weeks in the hospital when finally being discharged with: Medical problems caused by home environment. Diet should be 1,200 calories max a day. Her mom fed her less than 1,200 a day and she was STILL gaining weight.

November 1992, she was again air lifted to a hospital, this time Indiana, for respiratory problems. She spent 9 days in the hospital with the doctors repeating what the hospital said in Kentucky. They left with a C-PAP and oxygen for her to use to breathe.

Leigh Ann's parents were told to be patient that at some point a tumor should pop up on the MRI and then doctors will know what to do. THIS NEVER HAPPENED. All MRI's were still normal.

January 1993, Leigh Ann went in for a sleep study. At this time they were told she needed to have a Tracheotomy and the surgery was performed. Diagnosing Leigh Ann with Hypothalamic Dysfunction....but they said "There is something missing. Something we don't understand in ther sleep study results".

Still nothing known or mentioned about Central Hypoventilation or Central Apnea. But doctors said if Leigh Ann could lose weight she would be all better --- the parents kept trying.

By November 1993, the hospital in Indiana finally finds the Central Hypoventilation syndrome while being treated for Pneumonia. When Leigh Ann was finally diagnosed, she had undergone so much trauma and the delay of treatment caused further brain damage and neurological deficits.

November 1993 until February 1994 Leigh Ann remained in the hospital before being transferred to a neurological rehab hospital in Michigan.

April 1994, Leigh Ann returns back home from the Michigan hospital. By this time Leigh Ann had stopped growing. With her mom no longer working and dad always at work everything was extremely stressful and Leigh Ann needed everything they could give.

Leigh Ann began to have frequent seizures lasting 45 minutes at a time due to sodium levels being too high. Her Cortisol levels became a major issue during anesthesia, she had Tertiary Hypothyroidism #3 and elevated Prolactin levels. They battled this for YEARS!

In November 1997 she underwent Fundoplication surgery for vomiting. Leigh Ann had low body temperatures and spent time in the hospital for hypothermia, her behavior changes were drastic and made it difficult for her to stay connected to her ventilator.

Leigh Ann - 6 Years Old

Leigh Ann 7 1/2 Years Old

Leigh Ann was 40 inches tall and almost 8 years old when she passed away on February 19, 1998. At the time of her death she was finally diagnosed with Late-Onset Central Hypoventilation Syndrome/Hypothalamic Dysfunction --- now known as ROHHAD.

I have read Leigh Ann's story over and over. Her mom wrote to me in January - right before Haven's 5th birthday. I have cried and cried over this letter and the pictures are just beautiful.

Leigh Ann - I know you are up there. You are our Angel In The Sky and you are in our hearts. You were the first of us to have ROHHAD and I know you are watching our children and helping to guide us. We miss you terribly. I want you to know - everything you and your parents went through is not lost.....We are hearing your story and you are helping us teach doctors and people about ROHHAD.

All our love to you and all my love to your mom and dad. Take care and sweet kisses!