Posts Tagged ‘ROHHAD’

IVIG received – much needed

Thursday, April 12th, 2012 by by

On Tuesday, we headed out to our other new hospital – Huntsman Cancer Institute in St. George.  This is where Haven will get her port flushed every 4 weeks, and then every 6 weeks she will get her labs drawn, and then every 8 weeks she will get IVIG.  So, we actually get a one month break, and then we’re in ever two weeks for a month….then another month break.  Every few months she will head to SLC Primary Children’s for a full run down of labs and check ups.

Her room was very nice at this hospital.  It’s bigger than my labor and delivery room, and she had a private bathroom.  I was very surprised and happy.  She was very well taken care of. (more…)


Spring round of IVIG

Saturday, June 18th, 2011 by by

After Grandma and Grandpa left, we had a day of chemo.

Haven has started to not want to see the needle to go in to her chest. She uses a 1 inch needle and her numbing cream. Since doing her Hi CY, she has begun to feel a little bit of pain. Not much, but a slight amount….so she prefers to not see it now.

However, she is still able to do her own blood work and to flush her port. (more…)

Another Angel Welcomed by our ROHHAD Children

Tuesday, June 7th, 2011 by by

In January, I told the world about Heather, who after 18 years of searching, was finally diagnosed with ROHHAD after seeing Haven’s special on Mystery Diagnosis. On Friday, May 27th, Heather passed away, leaving us with a void in our hearts but strength knowing another angel is watching over all of our babies.

We are deeply saddened by the sudden passing of Heather, and I will hopefully be able to talk to her mother tomorrow via phone. I have wanted to give them grieving time.

We love you dearly, Heather, and thank you for letting us know and learn about you.

Always ~~~~

ROHHAD child wakes from coma after 38 days

Saturday, June 4th, 2011 by by

Natalie is a ROHHAD child from Malaysia. We met her and her mother on Facebook, and we have come to know them very well since they joined our ROHHAD site. On April 26th, Natalie fell in to a coma while at the hospital. We are extremely happy to report that Natalie has come out of the coma and is smiling. She has shown us the strength and will she has to fight this horrible syndrome.

We can’t begin to tell everyone how happy and excited we are to see her photos and to know she has a huge smile on her face.

Lots of love to Natalie and her family – thank you for letting us in on your life.


Our ROHHAD world

Tuesday, March 22nd, 2011 by by

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…… gives me a headache every time we have to get in a vehicle. (more…)

Haven’s Mysterious Condition Identified as ROHHAD

Tuesday, February 22nd, 2011 by by


Haven Fowler was born a healthy baby. She remained so until the age of two and a half when she began to gain weight very rapidly, gaining 40 pounds over eight months. She also started having unusual neurological symptoms, including hallucinations, sleep-eating and sleepwalking, irritability and profuse sweating.

Month after month, Haven’s parents took her from doctor to doctor, each one increasingly bewildered by her mysterious symptoms and unable to find an answer. Finally, the Fowlers — then living in California — were told that if they wanted answers, they needed to go to Johns Hopkins. And so they did. About three weeks after her cross-country trip to Baltimore, Haven suffered a serious seizure, which landed her at Hopkins Children’s, where the mystery of her condition eventually would be solved.…………………………….. READ MORE!!

Sofie – An Angel Reborn

Wednesday, January 26th, 2011 by by

The broken cord

We little knew that morning that God
Was going to call your name.
In life we loved you dearly,
In death we do the same.
It broke our hearts to lose you,
You did not go alone;
For part of us went with you,
The day God called you home.
You left us peaceful memories,
Your love is still our guide;
And though we cannot see you,
You are always at our side.
Our family chain is broken,
And nothing seems the same;
But as God calls us, one by one,
The Chain will link again.

Our dear ROHHAD family has been hit hard once again as another beautiful baby has joined the heavens. Sofie became a guardian angel to all ROHHAD children on Saturday, January 22nd, 2011. She has forever touched our hearts and we miss her dearly. (more…)


18 Years/no diagnosis – until Haven’s Mystery Diagnosis aired

Tuesday, January 25th, 2011 by by

A few days after Haven’s episode aired I started receiving emails from people saying the watched the show and were happy to learn about Haven. One email hit me with a mystery diagnosis of her own that was finally solved with the show. Below is the email from the girl’s mother:

Wow! Haven’s mystery diagnosis story aired here in Florida about 2 hours ago, and I am just nicely able to stop crying and compose myself!

My daughter heather was born along with her twin brother on March 5, 1990. She was born happy and healthy and I have footage of her 2 years before all of this ROHHAD stuff took over our life, that I cannot even view, not even 18 years later!

She was this sweet and full of spirit young girl, and she and her twin brother were so fun to watch together! In September of 1992 we began to notice her appetite just went crazy!

Soon after she began to gain 15lbs-20lbs a month, and her stomach was very protruded. We lived in a small town where people couldn’t wait to have something to talk about. People even wondered if she was somehow pregnant! That was the end of the line for me! I too took her in to see a Dr., we did not have health insurance and the doctor wanted to run some ridiculously extensive and expensive tests! We took her home scared to death, that something was seriously wrong and we didn’t have enough coverage to pay for the testing!

January came and she was still gaining weight, and she had this terrible snore/breathing pattern which really freaked us out. January 9th, 1993, we could not wake her from her night of sleep and her lips were blue! We took her into our Dr. and he sent us to Albany Medical Center via ambulance. Heather was fine while she was awake, but the moment she fell asleep, she de satted! They intubated her and we were in for 8 weeks of hell with all kinds of (more…)

ROHHAD on Mystery Diagnosis and OWN (Oprah Winfrey Network)

Wednesday, January 5th, 2011 by by

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.


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 (more…)

ROHHAD sucks

Wednesday, December 29th, 2010 by by

As with most mothers of a child with Cancer I should be stressed and worried about this and it coming back. If you sit and think of one of the worst things that could happen to your baby it would be that they would be diagnosed with Cancer that randomly selects who it wants to attack. However, then you throw in ROHHAD and I don’t even have time to think about weather or not Haven will have Leukemia before she is in her mid 20′s or if all the chemo she has taken will cause another type of Cancer we have yet to hear about.

Haven has done a couple years of experimental chemo that has completely regressed some symptoms and helped her in so many ways. She is a completely different child now than she was when we first entrusted Hopkins to save her life.

In 2008 (at age 4) we were told – Haven is on the progressive road to stop breathing on her own by age 7.

I have been terrified of this number since then….almost 3 years. As it is Haven is set to turn 7 on January 26th.

In early November I scheduled a meeting with her Pulmonary doctor and told him that I had noticed Haven was snoring a lot and very loud. I also noted to him that her chest was caving in a bit while sleeping like it was hard for her to breathe. Her sleep walking episodes are also from 4am – 7am. Sleep walking should start around 3 hours after falling asleep in general…..not when you are about to wake up. So she was evaluated by two doctors and quite frankly when I request a test they usually don’t argue if I bring some facts.

So Haven was scheduled for sleep study immediately and we did her test on November 26th. During that time we changed phone numbers a few times and my numbers weren’t in the (more…)