Our ROHHAD world

While the world keeps turning out there in ROHHAD developments we have stayed on the quieter side lately. We know approximately 38 families now with a child with ROHHAD - ranging from early 20's to 3 years old. All very similar yet different symptoms. It's interesting to learn about each child because we are all hit with varying symptoms at different ages and stages.

We are heading back in to Oncology next week for another round of IVIG and then we are back in with Endocrine after that. I'm not sure where Haven's counts are at this point - I know we tried to extend her IVIG visits from every 6 weeks to every 12 weeks and that didn't work out very well. So we are still on the every 6 weeks schedule. There are two other important topics we are bringing to discuss - Haven's height/growth issues and finally breaking down to go in to meet with Kennedy Krieger Institute. They are internationally known and well respected in the medical community. We just never had the mental capacity to add more to our schedule when we were first asked to start going over 2 years ago. It's a lot of work to get an appointment and we should definitely take advantage of our doctors being able to get Haven in there.

Other than that Haven is doing well. She has excellent grades at school and is a good little helper. Her only issue is that she likes to be the boss.....we are working on that! ;) She is still doing her adaptive PE class to help with balance, core, and strength. She is learning to go up the stairs with both legs instead of just the right leg. We still have lots of issues with that, as well as, fear of getting in to a car. I know........it gives me a headache every time we have to get in a vehicle.

Well - I guess I haven't taken any photos in the past few weeks....at least not anything cool. Haven took this wonderful photo - I thought I'd share it. Can you guess what it is?


I would also like to invite everyone to read up on Haven's friends. I posted a note about Denika from Newfoundland in there and have another coming up about our wonderful friend in the UK - Jessica! You can find this site at: Friends Of Haven -- see below for a peek at Denika's story:


Denika is a beautiful girl we met almost 2 years ago now. Amazing to think back when first meeting and mentally review everything you have gone through together. She lives in Newfoundland and we have been friends pretty much since she was diagnosed. Her mom found me through Haven's web site. At the time she had just had the same surgery Haven did to remove her Ganglioneuroblastoma Tumor and was officially diagnosed with ROHHAD Syndrome. She then went on to Sick Kids in Toronto where I was contacted by an Endocrine doctor that wanted more information about my child. I put her in contact with our doctors immediately and asked them to help this little girl. Our doctors are so awesome they immediately took it on to work with her - they contacted me for permission to discuss Haven and off they went. Denika slowly began to follow Haven's treatments and what she had started with. Then suddenly Denika was found to have a second Ganglioneuroblastoma Tumor - this one in her chest. I couldn't believe it. Still Denika has battled on.........



Oh yea.....what was that picture? It is a picture of Deezy wearing Haven's headband....obviously the dog was in motion to run away! :)

ROHHAD on Mystery Diagnosis and OWN (Oprah Winfrey Network)

Mystery Diagnosis

Trapped Inside Their Bodies
January 12th - 8pm EST

Will the bizarre growths on 17-year-old Matt's body eventually leave him trapped in a second skeleton? When two-year-old Haven starts to gain weight at a shocking rate, her parents have no idea it will spiral into a battle for her life.

MISS HAVEN ON MYSTERY DIAGNOSIS -
JANUARY 12TH AT 8PM EST!

At the end of September 2010 we had the privilege of having the producers and film crew of Mystery Diagnosis come out to film us and our daughter. Her episode is finally set to air on January 12th.

What will this be about? It is all about Haven and the pain and heartache it took us to get a diagnosis for her symptoms.

One day we filmed at Johns Hopkins Hospital with one of Haven's very involved doctors, Dr. David Cooke, Pediatric Endocrine doctor. Another day was at a studio and then we did a day of filming at our house.

Once the show airs I will describe the work and hours that went in to making a 30 minute segment for TV. Let's just say we aren't signing up to act anytime soon!

We really hope everyone watches it. If you don't know - Oprah Winfrey has her OWN network and Mystery Diagnosis is now on there. To find out what channel it is on in your area click on the picture of the channel finder above. It is a direct link to the section to plug in your zip code.

Haven specific segment is on January 12th at 8pm. You will learn about us and what we went through, Haven and what she has gone through up until her diagnosis, and even more important you will learn about ROHHAD.

We have a lot of ROHHAD friends now - well considering when you start you have none we now have 28 families around the world. I would've loved to have been allowed to mention all my ROHHAD families out there on TV - we want to let our voices be heard and let others know we are here. We hope this helps and we hope it helps another family on the tough road to diagnose their child.

Ok...so we're super excited.....I'll keep everyone updated! And my dear ROHHAD friends in Australia and South Africa ---- we'll make sure you get to see it!

ROHHAD slowly enters the world.....

It's been a slow long process of researching and sending info to different organizations hoping to get the word out there about ROHHAD. I spent a lot of time collecting info and getting it out there. Many of the Moms of ROHHAD helped me out. Especially grateful to Vicki for all her research and info on her daughter Leigh Ann. Julie has been my rock and constantly giving me any info I need about her family and Mason. Reading other blogs from other families and learning about their children. EuroMom for knowing more than a million doctors I've talked to and overloading me - thank you!

It's crazy at the hospital with people who haven't worked with Haven. I've had a few people come up to me and say "Did you know your daughter's picture is on the Internet?"

Well at least it brings a chuckle to me. Yes I know she's on the Internet. It wasn't a hard choice to put her on there. So few people know about ROHHAD and the only way to get the info out there is to tell our story.

Last year I kept bogging down the NIH and sending info on ROHHAD to them. After about 3 months they emailed me back thanking me for the info and that they had researched it and have put the info on GARD.

Well tonight I randomly searched ROHHAD as I usually do and wha la...it's now on NORD!

I met with our social worker this week and she tells me "sorry, there is no assistance or organization for ROHHAD". Yes I know.

My only hope is that some day there will be an organization that will help children and families with ROHHAD. An organization that helps you because you have the illness not only when you stop breathing on your own. It's a hard disease.

My child is still able to breathe on her own - many can not. They rely on ventilators.

My child has 70% of the other symptoms of ROHHAD. So where do we go from here? You can't get assistance on "inability to feel pain" or "inability to show emotions or cry" or "inability to sleep because your mind doesn't know it's day or night" or "lack of sensation to know to go to the bathroom" or "even if you don't eat you'll gain weight".

The more people that know hopefully will help in bringing about help for our children.

Children we constantly think about with ROHHAD:

Leigh Ann
Mason
Sophia
Joshua
Nikki
Euro
Malaysia
Jenna
Carla

We love all of you. thank you to everyone for getting the word out there and sharing your story. It really makes us stronger in the fight!

We finally like Barbie......

Haven decided today that she finally likes Barbie. She has NEVER played with dolls in her entire life. The other night she played with a wooden doll that had magnetic clothes and really had fun. Today she received a package from Grandma and Grandpa in Utah with what looks like a Bratz doll (hmmmm.......) and she has been playing with it for over 2 hours.

She even got her other dolls out that people had sent to her at Christmas. You may think I'm crazy because I'm excited my daughter is playing with dolls......but she NEVER has ever before. She never plays and over the past 2 weeks she has been playing like crazy. She sits by herself and just plays.

She plays, she talks more, she has a sweeter personality, she asks for food less, she SLEEPS all night long.......I am a believer in this chemo treatment. I believed in it last year and I feel the same way now. My daughter has never laughed like she does now and has even teared up during movies. THAT IS AWESOME!

Oh....she got a Walmart card in the mail yesterday from Laurie Bowes --- so guess who has to go buy clothes for her Barbies tonight! :)

Making changes -- Procrastinating

Last night I had a bit of ADD. I started off preparing to pay medical bills for the months of January and February. But once I counted out 37 envelopes filled with bills which meant that Haven had gone to the hospital 39 times in 2 months and that just kinda left me mindless.

So I decided instead that I would look at the bills this weekend and do something more fun. So I have started to make a few changes to her site. I talked with Kris about building a web site for me. Hey, he's been making web sites for over 11 years so I might as well take advantage of it since it's free!!!

So probably throughout the weekend you will notice a few changes to her site. I want to organize everything on here because sometimes I have to dig through to find things I wrote about 6 months ago. Plus Haven has had over 15,000 visitors since I started this site in December 2007 when we were first diagnosed with the Neuroblastoma Cancer.

Haven's Visitor Map Since July 2007

Haven is going to help with some of the design changes so it should be a fun little project for us and it will give me a reason to get my mind off the many worries and concerns I've had recently.

A few changes but this is not the official site I want yet:

Haven's Story

ROHHAD Children


More to come

Letter about ROHHAD

I'm sure many of you don't read the comments written by others to Haven's site. But I found this one from Vicki - Leigh Ann's mother - very important. I would like to share this with everyone.

Misty,

It is good that you have doctors at John Hopkins who are concerned for Haven. A doctor who listens and believes the parents about the symptoms of their ROHHAD child is very important.

The first pediatrician for Leigh Ann would not listen or believe me. I quit him after Leigh Ann returned home in Oct. 1992 from the children's hospital in KY. In Nov. 1992 I changed to an Evansville, IN pediatricain who was located 8 miles from our home. This pediatrician was open-minded and he would listen and believe me.The Evansville, IN pediatricain is the one who diagnosed Leigh Ann with LO-CHS/HD now called ROHHAD in Nov. 1993. He then sent her by air life-flight back to the children's hospital in IN. This children's hospital was 200 miles from our home.

Leigh Ann had been a patient in this hospital several times since Nov. 1992. Also we had made several trips for clinic visits at this children's hospital. But they had failed to diagnose LO-CHS/HD. The Evansville doctor had a very difficult time trying to convince the doctors at the children's hospital that Leigh Ann had LO-CHS/HD.

In Feb. 1994 the doctors wanted to transfer Leign Ann to a rehab hospital that used their doctors. But due to the problems we had experienced at this hospital, I had Leigh Ann transferred to a neurological rehab hospital in Michigan. There were good doctors at the rehab in Michigan who had a better understanding about LO-CHS/HD. Because of the problems with the children's hospital in IN, we started taking Leigh Ann to Vanderbilt in Nashville, TN. The local pediatrician in Evansville, IN asked the help of the Vanderbilt endocrinologist to explain LO-CHS/HD and to assist the other Vanderbilt doctors with understanding LO-CHS/HD.

The Vanderbilt endocrinologist had started Leigh Ann on growth hormone shots just prior to her death. She was treating Leigh Ann for her SIADH problem as well as other endocrine problems related to what is now known as ROHHAD.

All ROHHAD patients need caring doctors. An over-confident doctor who thinks ROHHAD symptoms is only a problem of too many calories can do more damage than good for the child.

There is still more knowledge that needs to be learned about ROHHAD and its treatment. However, it seems to me that at least Haven's doctors are trying and care about her.

Love & Prayers, Vicki