Ivy’s bloods are all back within normal ranges now. Her haemoglobin is 111g/L. Her levels for the haemolysis is on the high end of normal(read only just). Her electrolytes, liver function and iron studies all normal.

She grew two lots of bacteria in her blood and for the second time in a matter of weeks was considered septic.

She started on a new medication, an immunosuppressant to try to stop the active cycle of pemphigus. At minimal dose, so far, so good.

I am thread bare, my friends. I will hopefully be in a better frame of mind tomorrow.

Red is the colour I see when I can’t get the doctors to help my girl.

Yellow was the colour of her skin and whites of her eyes for the last week. A whole week without anyone wanting to help us. A whole week of worry and stress. (edited to add, I tell a lie, there was one kind registrar and many kind friends).

Yellow, the colour of cowardice.

Yellow is the colour of the vacutainers that finally collected Ivy’s blood to give us answers yesterday.

Pink is the colour I want my baby’s cheeks to be. Flushed with good health, not a fever. Pink is the colour I want on her bottom, not red, blistered burnt skin.

Pink is the colour  for euphoria. The feeling I get when everything is right with our world.

Pink is the colour of the walls in the pathology unit at the hospital.

Blue is the colour that my daughter turned when the Dapsone caused her blood cells to be ineffective in carrying oxygen.

Blue is how I feel when I can’t help her, when I have to rely on others to make her feel better.

Blue is how I feel when everything is out of control.

 The paed is still running for his life but he called me, from his mobile, to inform me that Ivy now has haemolytic anaemia.

For those of you who missed the Dapsone post, here is a quick summary of this pleasant side effect…

Haemolysis is the breakdown of the red blood cells. Basically the red blood cell is destroyed and can’t carry haemoglobin (iron), and you become anaemic really quickly.

Ivy has gone from 132g/L on April 8th to 96g/L today, so officially, she is anaemic.  We can add white to the rainbow of colours my daughter’s skin has turned. (Yes, I know technically white is not a colour, just play along with me here).

White is the colour of fury - towards myself for giving her the stupid Dapsone in the first place. I should have known.

The paed is not sure if it is going to get worse before it gets better but he told us to pack a bag before Thursday’s appointment just in case.

Truly.

I have them half written and ready to go but today, I’m sorry, it’s just going to be about the Ivy girl again.

*Waves to person who says I need to vary what I write about.*

If you don’t want to listen to my worry and ranting then go here or here and you shall be entertained.

Just thought I’d give you the heads up.

Ivy is yellow. Her skin and the whites of her eyes. She is jaundiced. I am assuming from the Dapsone.

It’s pretty eerie looking at your yellow child and wondering what the heck is going on with her liver.

She has had a small outbreak of blisters.

The antibiotic that we left the hospital with is useless and well, just useless, ok?

Her ear is discharging worse than ever and I am back to feeling that tightness in my throat and the knot in my belly when Ivy is sinking into the mire that is her health.

Our paediatrician is away. He has been all week. He is at a paediatric conference, along with every other paed in town.

Our GP has taken a tour of duty with the army. (Read not available. Ever).

We phoned the hospital and spoke to one of the paediatric registrars who had seen Ivy whilst she was in.

She told us she was jaundiced, that’s what the yellow was.

I already knew that.

She told us that it was increased levels of bilirubin being produced by her liver that was causing the jaundice.

 I kind of knew that too, that was why we were phoning; because we were concerned that a two year old had jaundice, secondary to the dapsone.

She said it was nothing but we should get it checked out by our paediatrician the next day… or our GP.

Here in lies the problem, my friends.

Oh, and the antibiotics?

Persevere, even though she is vomiting it up and it does nothing. Nothing I tell you.

I think I’m going mad.

At least, I know I have a headache because of all the banging of said head on the proverbial brick wall.

I can call you that, can’t I? After the outpouring of care and love that I have just had the honour to read, I think I can definitely call you all friend.

Firstly; Thank you.

After a few days cooped up in the hospital cage…er… I mean, room, I am a little rusty with my words but I can say thanks.

Secondly and obviously we are home.

Ivy actually had gate leave on Monday so I could take Imogen to the orthodontist and made it through the day without oxygen, so we have been discharged.

Her methaemoglobin levels are down to 6.3, which is fantastic news for the little girl.

Dapsone is the enemy and will never enter the house again. I officially hate Dapsone.

In fact, I think I always hated it.

The paed has been banned from saying anything that infers that side effects won’t happen, that they are rare.

He has definitely been banned from saying  ‘unbelievable’ and ‘one in a million’ when describing these rare side effects that seem to love my daughter.

In fact, all doctors are banned from telling me how they have never met anyone like Ivy in their careers and they are also banned from talking about journal articles and that she is an interesting case.

Ivy does rare, ok?

She just does.

And she is not a case.

She’s a little girl.

Anyway, we’re home.

Onwards and upwards, my friends, onwards and upwards.

(I have been given permission by management to set foot on the blog again for the sole purpose of the provision of information. In no way is any entertainment to be imparted.) 

As of Friday last, Ivy has returned to hospital, following a timely Paed consult.

Symptoms: Cyanosis (lips, fingers), Shortness of breath, Rapid pulse.

 Diagnosis: Acquired Methemoglobinemia.

No, I cannot pronounce it for you.

 Look it up, if you will.

 Ivy’s methemoglobin concentration peaked at just below 20%.

After 36 hours of 02 therapy and regular arterial blood gas monitoring (Don’t she love that), She appears to be improving.

If all goes well, she might be home Monday or Tuesday.

It was a plan, some pathology results and a script.

That’s right, my friends, you can doctor a patient via fax now.

Don’t get me started.

Yes, I am disgusted.

Anyhoo, the plan; was to wean Ivy off Prednisone because she is at risk of diabetes and brittle bones and a plethora of other nasties the longer she stays on the pred. Our alternative is a drug called Dapsone.

Never heard of it?

That’s because it is not widely used these days. It is mostly prescribed for Leprosy (We don’t call it that anymore, we call it Hansen’s disease because that just sounds so much better).

Dapsone can also be used for other skin diseases, one of which is pemphigus.

The paed has sent a general information sheet about Dapsone, which tells me very little about what my baby girl is about to ingest. It doesn’t matter though because I have researched it and have all that I need to know that this is one scary drug.

Lets throw around a few terms I have learnt about today, shall we?

Yes, let’s.

Agranulocytosis. This means a deacrease in granulocytes or leucocytes or in layman’s terms, it reduces the number of cells that can fight infection. Great for someone who is immune deficient, wouldn’t you say?

How about, aplastic anaemia, which is the decrease of red and white blood cells in the bone marrow or dyscrasias -  the abnormal mix of blood lymph and bile in the body?

They sound like crackin’ side effects,  don’t you think?

Then there is hemolysis which is the disruption of the red cell membrane, causing release of haemoglobin. This means that the red blood cell essentially explodes and cannot carry iron anymore and it has a great sidekick: methemoglobin, which means the haemoglobin can no longer carry oxygen.

It sounds good.

A real easy sell.

Add to that the risk of liver disorders, nausea, vomiting, abdominal pains, pancreatitis, vertigo, blurred vision, tinnitus, insomnia, fever, headache, psychosis (now that’s an extra special one)  and a whole lot of other exciting things, including carcinoma and I am really starting to see that this is a wonderful medication for Ivy.

Not.

So, what the paed is saying, is that this medication is the better choice over Prednisone and all I am wondering is how he can say that?

Just one last thing, if you are a ‘learning doctor’ out there, or even if you are an ‘already doctor’; If you say you are going to be in contact on a certain day, be in contact.

Don’t send through a fax and think that will be adequate. Because it won’t be. Especially if the patient involved is little and is about to take Dapsone and has any parent worth their salt. It will just make them angry.

Very angry.