May 2016 - ROHHAD Association

Captain Bravehearts Blog – AKA Aaron Hunter

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Hi thanks for continuing to follow Aaron’s Blog this is the 2nd Blog and we will continue in the style of the first only this time it will be ROHHAD in the beginning followed by the present day.

ROHHAD in the beginning 

The 2 photos above were taken of Aaron before the first symptoms of ROHHAD began.  As I said in my last blog if there is such a thing as a typical boy at toddler age Aaron was it.  He was full of energy always running around, he had outgrown his daytime naps and he was a fussy and picky eater never finishing a meal.  Aaron went to bed one night and woke up the next morning hungry and by hungry i really mean ravenous.  He cleared his plate and asked for more breakfast which he was not allowed, he was distraught screaming ‘me starving mummy’  and this was to continue every meal and snack time.  He would finish his meals all of them and ask for more.

 I trained at college in Health Fitness and Exercise, a big part of my studies was healthy eating alongside diet and weight control.  I knew he should not still be hungry after eating the portion sizes suitable for him.  I thought it more strange at first rather than worry and of course he was underweight to begin with due to being a picky eater so when he gained a little weight and was back to what he should be I was a little relieved to begin with but his hunger continued and continued.  Weeks had passed and I noticed he was not running around as much either, he would say he was tired and a few weeks after his appetite changed he was sleeping more.  The persistent Hunger is called Hyperphagia; the children never feel full no matter how much they have eaten.  The signal from the brain does not function properly and the satisfaction of feeling full and no longer hungry never leaves them.  Can you imagine that ? being so young and feeling hungry all the time no matter what you eat it would be torture.

 It is torture and without a doubt one of the hardest symptoms of ROHHAD for the children to go through.  My young 2.5yr old boy was letting me know how much it was torturing him.  He went from being very well behaved to crying and screaming because he felt hungry. Often he would cry himself to sleep during the day after meals because he was not allowed anymore food. The longest he was upset for was almost 3 hours of continuous begging and pleading for food by which time it was dinner.  Whilst these 2 symptoms were developing i also noticed that his bowel movements were becoming very irregular and he seemed to be constipated.  

We attended our local hospital and seen a general pediatrician who instantly diagnosed constipation.  That is what she believed was wrong and would explain the tiredness and change in behavior but not the hunger, not that this mattered as he was not asking for food during the appointment so he cannot possibly be hungry all the time ?? right i mean the doctor knew best !! she had seen him for all of 5 minutes and instantly knew what it was and that i was wrong to be so worried as he is a healthy child and it is constipation most likely his diet.  

Forgive me if i sound a little bitter here its just as I continue with his blog you will learn that I have had to fight to be taken seriously by medical professionals and other professionals when it comes to Aaron’s health.  My son almost lost his life because i was not taken seriously.  Every parent who has a child battling ROHHAD has had to fight to be heard and taken seriously.  We should not have too however when your child is battling a rare life threatening disease that hardly anybody knows exists many parents find themselves facing that battle to be heard.  Especially when that condition includes obesity.  

The obesity was the next symptom to appear, despite never being overfed; within 6 months Aaron had more than doubled his body weight.  He had gained just over 30Ibs.  We were still attending the general pediatrician for his ??constipation(as time went on we would learn it was not constipation and was instead part of his ROHHAD which led to him requiring an illeostomy,  surgery and loosing the use of his large colon).  Whenever we attended the clinic his weight was continuously climbing and he quickly became clinically obese.

 Rapid Onset Obesity is very different from Obesity.  It happens very quickly and occurs through no fault of the person suffering from it.  It is an endocrine abnormality and does not just occur in ROHHAD, there are many other medical diseases and conditions that do actually cause obesity.  Despite what GP doctors and the government may tell you NOT every person who is Obese is that way due to diet and lifestyle.  Aaron was not however it was the first thing questioned – how is his diet mum ? are you giving into his hunger? can you keep a diet diary ? we can help you feed him properly ? maybe there is hidden fats and sugars you just don’t know about ? maybe you are not encouraging him to exercise enough?.

It is so difficult for me to put into words how I felt at this point because i knew as his mum the one who spends every minute of the day and night with him; the one who knows him best, I knew something was seriously seriously wrong.  He was never overfed, how did i know this because I was the one feeding him 99% of the time and when it was his dad or gran or aunt they knew what to give him and would not give him extra.  I knew he should not be sleeping the way he was, or struggling with the toilet or feeling hungry all the time and I also knew he should not be the weight he now was.  

So how did that feel, I was terrified, confused, worried sick, angry and more if ‘argghhhhhhhhhhhhhhhhhh’ was an actual word it was used a lot at this time.  However I worked with the doctor, I went to meet the dietician, I took Aaron’s lunch with me as well as a 3 month diary.  She could find nothing wrong with his diet.

 I started keeping more than a food diary I kept an Aaron diary.  It included how he was, how often he asked for food, how often he had overflow(leaking stool from his anus) and i noticed some new things, he would get temperatures high ones but not be sick, he would sweat profusely soaking bedding and clothing throughout the day and night, he would sleep a lot, he had headaches intermittent ones, he was back in nappies to help with his constipation !!, he had poonami’s (massive amount of fecal overflow or diahorrea about once every few weeks), he refused to walk, his legs ached or as he put it ‘they don’t work mummy’, his back was the same.  He was a completely different child physically but still laughing and joking and happy when we were able to distract him from how much he had changed.

 After 6 months of watching my child completely change physically and suffering, I had literally enough of not being listened too.  I snapped and I wrote to his pediatrician and included his diary and told her to work out what was going on or I would find someone who could.  I took videos of him and showed photos of him before and after.  He was soon admitted for some urgent checks, they were honest with their initial thoughts – this may be a brain tumor!!!!! and he had an urgent MRI scan.  His doctor called the same day – he does NOT have a brain tumor.  The relief was instant but so was the fear, ‘Dr Sharma that is a huge relief thank you for calling to let us know, but if his MRI Brain Scan was clear then what else could it be ? What is wrong with my son?’…………………..  The photos below are of Aaron just as ROHHAD symptoms were beginning (his hunger) and 6 months later when he had more than doubled his body weight……….. i will continue his journey with ROHHAD until diagnosis in the next blog.

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The Present

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The past couple of weeks have been a mixture of good times and sad times.  Aaron told me a while ago he wanted to write to the Marvel Avengers and some DC Superheroes.  He wants to ask them personally if they will help him in his mission to cure the evil ROHHAD.  He believes that they have not seen his social media video yet because if they have well then they would have done #GOMADJumpForROHHAD !! he honestly believes that the superheroes are going to help him and his special friends.  He is a very clever 6yr old, he understands that Global Awareness for ROHHAD is needed if we stand any chance of raising the funds needed for research.  He understands this because he has asked us about it and we have told him.  He knows the charity we set up was to help him and the other children, he knows there is no cure because to lie to him and tell him he will get better is not the right thing to do.  

What he did not know or at least we thought he did not know was that he is probably not going to reach adulthood, or as Aaron puts it ‘I am going to die because of ROHHAD mummy and go to heaven’.  He dropped this bombshell on us right before Christmas last year and it was honestly the hardest conversation i have had in my entire life.  We were very careful around Aaron when speaking about ROHHAD, yes we had told him that the Doctors could not make him better, but we also told him we were doing all we can to help the Doctors change that and never not once and even now have I never told him he is going to die.  Not even during the conversation before Christmas and the few ones we have had since.  

He asked if he could have a photo of him and Lauren his big sister in his room.  It was one of mine, his school photo and I asked him why do you want the photo in your room?.  ‘Cause mummy I don’t want Lauren to ever forget me when I die?’  it took every bit of strength I had not to crumble in front of him. ‘What do you mean when you die Aaron?’ i asked him, ‘You know mummy when i die because of the ROHHAD’.  I knelt down beside him and said ‘Aaron your not going to die why do you think that?’ he answered ‘because Justin and Sedona and Kenzi all died mummy because of the ROHHAD’ (all children who had passed over in the past year because of ROHHAD, we had never said directly in front of him it was because of ROHHAD but he knew about them passing and he knew Justin personally and of course we had said Aaron was a lot like Justin).  I crumbled at this point and i could not hold my tears in, I said to him ‘ Aaron I know they died but mummy and daddy and all our friends and families are fighting hard to raise money for the doctors to help find a cure, with the charity’ he looked at me and said ‘ mummy its okay i know you are working hard but don’t worry if you don’t find a cure because Heaven is a beautiful place’.  I did not know what else to say at this point so i took the photo, picked myself of the floor and said ‘ okay buddy lets put this in your room’.  

This conversation and others that followed led to Aaron wanting to help the charity and ultimately led to his social media video and challenge.  His letters to his favourite Marvel Heroes have been sent and then last week after watching Ellen on FB again he asked if he could write to her.  That is his letter above and it has been posted.  Aaron is convinced once the Avengers read his letters they will help.  As for me I am hoping and praying that they do, for 2 reasons; the most obvious being that them helping and accepting Aaron’s challenge would help bring the global awareness we so desperately need however the second reason is slightly more selfish it is so it doesn’t break his heart them not helping.  The Heroes he adores doing his challenge would bring him so much happiness, a memory to last a lifetime.

 Rightly or wrongly i allowed him to do this, some people have already passed judgement saying we should be honest with him and tell him they are not real.  I refuse to do that, he has been through enough already and will continue to have to battle hard for the rest of his short life.  I do not want to take the magic of his heroes from him.  They have helped him through some of his difficult times spent in hospital and I refuse to take that away from him.  

Let’s hope his letters work !! and if they don’t reach them directly maybe Ellen will for him.  Like I said its been a mixture of sad and good times the past few weeks.  Physically Aaron seems to be doing okay just now; he still has all his ROHHAD symptoms  although we seen a decline in his numbers and he has needed some extra oxygen more than normal the past few weeks, however as unpredictable as ROHHAD can be the past 2 nights have been good and only needing 1litre of oxygen.  He had his friend Caleb round for a playdate and he loved that. He also had his School Report Card home which was amazing.  He does have assistance in school physically and socially but academically he is doing amazing.  His report card was full of praise and shows us how amazing he really is.  School gets the best of Aaron as often he is so tired when he comes home but for the most part he enjoys it and that is a huge blessing for him and us.  Some of his special friends have really struggled with School and some cannot attend school for various reasons.  So we never take for granted Aaron attending school and doing so well.  His big sister also came home with a glowing report.  Lauren is doing amazing considering all that she too is going through and we are so proud of her and all she has achieved the past few years since Aaron’s ROHHAD developed.  Siblings are often the unsung heroes when you have a really sick child.  They are however true heroes, Lauren is very loving and caring, she is there for her wee brother and is an Awesome big sister.  Does she annoy him at times absolutely, do they argue and fight at times? yes they do and whilst i would never tell them this; those times when the sibling rivalry kicks in and they are having a little argument, well they are the times I smile inside because I am grateful for that little bit of normality.  This is how it was meant to be you see!!  I soon snap out of it though and time out is were they find themselves……………. normal what is that anyway ?  I know what isn’t normal a child having to battle ROHHAD.  Finishing this blog with a photo of my family with Sean Batty (our famous Scottish weatherman!) this was taken during the Glasgow Kiltwalk during which a team of ROHHAD Avengers participated and raised funds and awareness for the ROHHAD Association #MissiontoFindACure .  I am smiling here but those walking with me know the pain I was in.  Nothing though compared to the pain the kids battling ROHHAD face daily.  We walked 26 miles for those kids who cannot even walk a mile…………….. 

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‘Angel Emilee’s’ (story written by her dad Charlie)

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Continuing on from the last blog I had written I think it is about time to go into after my beautiful Emilee had to leave school . Emilee had a hard time with this, but she could not stay awake in class and was starting to get to the point where she would get violent out of nowhere.  It seemed crazy to me when the violent outbursts would happen because Emilee was the type  of person that would not hurt anyone or anything.

I learned when her outbursts were going to happen because you could see in her face it was not her or not the true her it was a crazy blank look . Only people who spent a lot of time with her could see it happen.  This lasted for the rest of the time she was with us but it did seem to have cycles where it would happen more in certain times than others .
Soon after Emillee would behave like this, she was always so sad and saying how sorry she was which would make me very sad.  I knew that was not how my girl normally was but it did make it hard for us to take her to see people she did not know well because they where scared of her and it seemed to me like Emilee knew this and it would make her worse.  When she was not doing this she was the most loving caring person in the world.  Emilee had dreams and one thing she would often say was ‘I want to be a scientist so I can find cures for all the diseases in the world’ this was so nobody or anything would ever have to be sick ever.  This often lead to her becoming extremely upset and she would start saying everyone is dying and she would scream and cry.
It was so hard on her not being able to control all the feelings she felt so much. I had to hide my tears a lot of times. I tried to never let her see that i was upset or sad about anything for good reasons. If Emilee seen someone feeling bad she would try to cheer them up if she was feeling good and having a good day but if it was a bad day she would have a very hard time and her mood would change quickly from happy to sad to angry and so on. This could happen very quickly and go on like this for hours changing from different moods all in a matter of minutes.  The emotional and mental side to ROHHAD is incredibly difficult for the children to go through and so incredibly hard for all the family.  That is all from me just now I will have another blog soon about Emilee and my son.

Captain Braveheart’s Blog (Aaron Hunter)

 

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Captain Braveheart – My beautiful baby boy Aaron Hunter.  

This is the first blog entry that I have written for Aaron and despite having thought about doing this for a while I am still slightly at a loss about were best to begin ?.  Do I start at the beginning before ROHHAD and take you through his life and what it is like for him and those who love him living with ROHHAD or do I begin from now ?.  Since I cannot make up my mind I will do both for now and if at any point you the readers feel that format is not working well you can let me know and I may change it !!

Before ROHHAD

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Until the age of 2.5yrs old Aaron was a healthy boy, he reached all of his milestones and he was full of energy.  Everything was as it should be, he kept us on our toes and truth be told I was exhausted running after him you could not keep up with him when he was out and at the park.  He would run everywhere on his tiptoes.  He was shy and sweet.  He loved Thomas the Tank Engine and every morning once Lauren was at school, I would spend the morning building train tracks and he would play with them for hours.  As he got a little older his passion for trains was to change to transformers and superheroes.  He would play for hours with his sister although if she was to do something he did not like he soon let her know !! He was very comical and would often have us in fits of laughter at his antics.  If there is such a thing as typical wee boy then i would say Aaron was it in many ways.  He loved kicking the ball at the park for example and i remember clear as day thinking during the summer before ROHHAD began that the following year I would need to sign him up for a football team.

Before the first signs of ROHHAD began to develop in Aaron he was fully toilet trained, sleeping through the night and dry at night, he had outgrown his nap and he would pick at his meals never finishing them.  He was a little underweight before his symptoms began.  I know this because we went regularly to the baby clinic and he had a few viruses one after the other, they took his weight and said he was underweight.  I explained to his doctor at the time that he was a picky eater never finishing meals and always on the go running and climbing !! They wanted to check up on him again a few months later to be sure he was gaining weight and not loosing more and that is when one by one his ROHHAD Symptoms began to appear ………  I will continue this in the next blog.

 

The Present 

 

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This is Aaron on his first visit to Robin House Children’s Hospice in Balloch.  Every parent who has a child living with a terminal life threatening disease or syndrome will tell you that Hospice Care initially is a massive mixture of emotions.  To qualify for these services and care your child is not likely to reach adulthood and how you feel with that is impossible to put into words, devastated does not even come close; however look at the smile on Aaron’s face here his smile that lights up the room.  This smile and the full day of happiness and memories that we made with Aaron at Robin House confirmed that we had made the right decision, Robin House will now be our sanctuary, our home from home or holiday home as a lot of the children who go call it.  It will be a place were we will be happy and make memories that will last us for all of our lives.  Aaron loved it he goes back at the end of this month and he is already counting the sleeps.  He loved the pool, swimming was always something Aaron loved but something he had turned away from in the past year for a few reasons.  Its not that he can’t go swimming as you can see he can it is just that due to ROHHAD declining in Aaron he became really aware of how he looked, his oxygen tubing and cylinder would cause a stir the few times we did venture to a public pool.  

Sadly the lifeguards made a big deal about it, concerned for other peoples safety.  As a former lifeguard myself i was quick to reassure them that his tubing and cylinder would cause no additional risk to the other swimmers and that we were fully aware of it.  I also explained to the one lifeguard who told us we should not take Aaron swimming that he was sorely mistaken and was not allowed to legally discriminate against my child.  The fuss that was made on both occasions made Aaron upset and he wanted to leave the pool.  As if that was not bad enough when we left the changing facilities were not suitable to change Aaron and do his stoma cares.  I had to lay him down on the floor on a towel.  So that was it not at anytime did Aaron want to to go back to swimming, until Robin House !!.  He was able to go in the pool with just us and the changing facilities were exactly what was needed.  He loved it and so did we.

The past few weeks Aaron has been doing quite well, we went to see Captain America Civil War and he had a great time.  This made him want to write even more letters to the Avengers so that they can watch his social media video #GOMADJumpForROHHAD .  He is still convinced that the Avengers will help him and his special friends when they watch his video.  He believes 110 percent they will do his challenge and i really hope he is right as if they don’t he will be so upset.  If you are reading this and you do not know what I am talking about watch Aaron’s video on our homepage or visit our Facebook Page ROHHAD Association.

Medically Aaron has been fluctuating as all the children battling ROHHAD do, his numbers (oxygen levels and heart rate) have been good some nights and on other nights the alarms have been fairly consistent.  Tonight is a bad night, i have had to stop and start this blog quite a few times as Aaron is struggling to keep his oxygen levels above 93 he keeps dipping into the low 80’s which has meant i have had to increase his oxygen level to 2 litres.  I can’t give him anymore than that through his ventilator and if he requires more i have to take him to hospital.  I will monitor him closely over the next hour if his numbers don’t improve we will head to the hospital.  It is nights like these I am filled with fear and i can’t help but think of the children with ROHHAD in ICU just now like Aaron’s friend Luca.  I also find my thoughts wandering to my friends who have lost their children and I cannot even imagine what they are going through right now.  Only a few weeks ago one of my amazing friends lost her son, she checked on him and he was doing okay and when she checked again a few hours later he had passed away and that is how unpredictable ROHHAD can be.  Just thinking of them kills me inside, I cannot even begin to imagine the pain they are in right now. They are always in my thoughts and prayers and I wish with all my heart they did not have to suffer like this.  Some of the kids say that ROHHAD Sucks,  Aaron recently said that it was ‘shit’ i almost gave him into trouble but i didn’t not this time because he is right.  ROHHAD is Shit, it does suck, its incredibly cruel and difficult beyond words; however so long as my Captain Braveheart keeps fighting it and so long as he has special friends around the world fighting hard every day just too live; I and all my special friends and families will keep fighting alongside them.  I refuse to let ROHHAD take my son without a fight.  I hope that one day the rest of the world will know what ROHHAD is and help us fight it too……  the mission as Aaron would say is to defeat the Evil ROHHAD or in my words FIND A CURE……………..

love Captain Braveheart’s mummy Elisabeth xxxxx

 

Aarons avengers part 2

 

 

 

 

 

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