Been away for a while

Well, I haven't posted for quite a while. I have moved house recently and didn't have internet for a while and just sort of got wrapped up in stuff.

Have been feeling a little fed up lately the last few days. Joseph went into hospital last week for a couple of days due to having a bout of gastorentoritus. Had been a long time since he had last been admitted into hospital so felt it was a bit of set back and I always find I cope fine at the time, but I have a few down weeks after. Thought it would have got easier by now, but apparently not.

Also yesterday, had an appointment with the cardiologist, as Joseph also has an ASD (atrial septal defect (a hole in his heart)), however we came away feeling slightly disappointed. I think people think I am being silly, because the good news was that the whole hasn't got any worse, however, the doctor didn't actually have a very good look during the echocardiagram because Joseph was wriggling. My husband had him pretty well restrained, he was just crying, so the doctor gave up pretty quickly, so basically we walked away not being much more knowledgable than we were the day before. We don't know if the hole is still there, or not. We go back in two years.

I had spent weeks worrying about the outcome. If the hole remains, it means keyhole surgery for Joseph when he reaches 5 or 6 years old, which sounds simple, but its still pretty scary as he will have to go under a general aneasthetic.

Maybe I am just being negative, but I think the last couple of weeks make it difficult to see the positives all the time.

The CAH itself is being pretty well maintained. Joseph is slightly small for his age, but his endincronologist is unsure if this is just his growth pattern or the steroids. Regular bloods and monitoring will keep tracks on it. Joseph is just started to take his first steps and he is speaking quite a lot now, so that is all very exciting.

Hopefully I will post more regularly again.

All went rather well!

We saw Joseph's endicronologist on Tuesday, and she seemed generally pleased with all of his progress. She said that the bloodspots that we had carried out at the end of March had come back with good results, so she was pleased with his hydrocortizone dose, and assured me that we would stick with the dose that he was on. This appointment was the first time that he had not required his bloods to be taken. It was a rather nice change as it can be quite upsetting for all of us when we have to see him go through that. We have been instructed to do his next lot of bloodspots at the end of June and our next appointment to see her is at the end of August.

It really is starting to feel like things are settling down. Joseph has been pretty unlucky as far as hospital admissions go as he has been in quite a lot since he was born, however, I have spoken to a couple of parents who have said that thier CAH children has only been in once or twice. Unfortunately this is the downside I have found to sending him to nursery, he has been in a vulnerable position to catch lots of bugs, but although I have contemplated taking him out of nursery, I know that he really enjoys himself, and even those two days a week that he is there, I notice a lot of progress both mentally and physically.

We are off for his 13 month jabs today which I never look forward to, but then what Mum does? One good thing about today however, is that it will his last lots of jabs for a while (apart from the Swine Flu jab) so I am glad that will be over.

It's nice to know that things are hopefully getting back to the way it should (fingers crossed).

So it begins....

Today is Josephs appointment with his endocrinologist. She is a wonderful doctor and has looked after him well. We are now at the stage where we generally get seen by her every 3 months, where we have to do Josephs bloodspots in the middle of appointments. We are very lucky that we have a friend who is a nurse on the childrens ward where Joseph often goes when he is poorly, so she taught us how to do his blood spots, which was initially a very daunting task, but thankfully it now isn't so scary.

Anyway, as usual I have a list of questions to ask Josephs doctor, and everytime she is very willing to talk to me about everything I ask. She never dismisses me as a difficult person (she is very patient like that) and she takes everything I say very seriously. She is a very firm believer in Mothers Instincts! I have a couple of very small concerns, that have been niggling away at me for a couple of weeks now, but I tend not to worry knowing that I am due to have an appointment coming up, which is usually the case in the weeks leading up to the next appointment.

She has always told me to call her or the hospital straight away if I feel my concerns are urgent, and he either gets admitted 90% of the time, or she will call me back.

Joseph often gets excited on his outpatients appointments as he gets a lot, and I mean A LOT of attention, and he certainly soaks it all up, bless him!

I will blog on here later to say how it all went. I am so grateful to have Joseph being cared for so greatly by an amazing team of doctors and nurses at our local hospital and I cannot fault any single one of them.

Our little family

So, now I have introduced the blog, I shall tell you a bit about me. As previously mentioned, I have a 13 month old little boy, called Joseph, who has SWCAH. He unfortunately has been a bit slow on the mobility front, although very recently he has just started to "bum" shuffle. He shows no signs of wanting to crawl, but is happy to walk around with support by holding my hand. As well as the CAH, he has a couple of other health issues that we have had to deal with and learn about but to look at him, you would never know anything was wrong (as with many CAH sufferers).

I also have an amazing husband, who has been majorly supportive from day one of Josephs' arrival into the world. He adores Joseph, and is a very good Dad to him.

We are a young family, but enjoy what we do have, and Joseph's health problems, has just made us learn to appreciate him so much more.

I went back to work for two days a week once Joseph got to 7 months old (initially when he was diagnosed, I thought I would never go back to work whilst he was young), however, it has been good for all of us for me to go back. Joseph loves going to a local nursery, and his key worker is very good and understanding of his problems, and takes the medications very seriously. It was very scary entrusting this to someone else to begin with, but now, I don't worry about it. Maybe sometimes if he is a bit under the weather I get anxious, but generally I love how he enjoys going in to see all of his little friends.

I would say, our life will never be "normal", but then what is "normal" anyway?? I love our life and our family unit very much, and as long as we are happy, we should be able to get on just fine.

Introduction

Hi all,

My name is Becki. The reason I have started this blog is because although there are some amazing Congenital Adrenal Hyperplasia support groups on the internet, I noticed there are no UK blogs. Although CAH is a worldwide condition, some of the medical phrases and medication names internationally, may be slightly different to the UK.

I have a one year old boy, who was diagnosed with Salt Wasting CAH at 15 days old when he went into Adrenal Crisis. I remember so well to this day, being so overwhelmed and scared that my little lad had a potentially fatal illness (if not managed properly) that I had never even heard of.

There is a lot to discuss on CAH, both medically and emotionally for families or sufferers, and sometimes, due to the rarity of the condition it is difficult to talk to someone that may not understand.

Even today, over a year on, there are always new things that I am learning about the condition, and how to come with various hurdles along the way.

I am hoping that this blog (welcome to all users) will help people that maybe, just need to vent, ask some advice, or even just to read about others in similar situations to get a better understanding.

Please do not be afraid to speak up or talk about anything. Unfortunately, I may not be able to give any medical advice as I am not qualified to, however, just if you would like to discuss it, I am here to listen.

I hope that between us, we can build up a support group to help eachother through the tough times and the exciting times, to discuss amongst ourselves in order to all try to get a better understanding of living with CAH, whether it be a relative, child, friend, or even ourselves.

Thanks all and I hope the future of this blog will help us all.

Becki