Mr Malakai is doing ok!

Well – I think some updates are due!

Firstly, and most importantly, I can say that Malakai is doing much better with the seizures (almost none now), but he has developed absolutely terrible reflux. My poor little man just brings up milk, food and clear liquid all day long – whether he’s on his tummy, back, sitting up or even standing. Whether he’s moving around or still... Being on his tummy is the worst though – and he spends almost no time on his tummy anymore (from having spent most of his time there), which I know is affecting his development now (because he’s getting ready to start crawling).

I must say that on this journey of motherhood and the diagnosis of Malakai having Down syndrome, I have never been this worried. Yes, when he was initially diagnosed I was scared and worried about him, but as I grew aware of what an amazing and fulfilling life he would live, the diagnosis was not something that bugged me anymore! But, in the past 3 weeks, our lives have been thrown off balance. First the initial prescription of the reflux medicine (when the reflux wasn’t even that bad) that caused the seizures, then the seizures, and now the terrible terrible reflux that’s affecting him every hour of every day. I am feeling a bit like sobbing – because I feel so helpless. I just wish I could find a doctor who I trusted to help him (I will not go back to the previous paediatrician) and I am waiting for an appointment to come up at a new paediatrician.

Yesterday was probably the worst day so far for reflux, but after Malakai was becoming dehydrated I visited our local chemist and he told me to take Malakai off his current reflux medicine (which was obviously not working) and try some reflux formula and Gaviscon (for pregnant women). It has worked wonders so far and Malakai is eventually back on his tummy again! Woo Hoo! So hopefully we can keep the reflux under control until I can get an appointment with a new paediatrician.

Other news is our South African elections last Wednesday! I am proud to say that I stood in a queue for 2 hours in the cold and put my X down! As expected, the current ruling party (the ANC) won by a landslide (as they have done since our first free and fair elections in 1994). So, they will face their 5th term as ruling party. I will not say that I am completely against the ANC – they certainly have done a good job for over a 100 years of fighting for freedom for their people – there is no doubt of that. It is just that with this party in power has come corruption, crime, poverty, a breakdown in social services such as schools & hospitals and very internationally embarrassing moments (such as when our previous president claimed that there was no link between HIV and Aids and our new president claimed that a shower after sex with a HIV-positive woman would ‘clean’ him of the Aids virus... Huh?) At least we have two strong opposition parties in place to check them at the door. What I do hope is that our country grows and continues to offer a chance at prosperity and freedom. We live in such a beautiful place, filled with people who really just want to be able to pay bills, support their families and be free.

Then finally, we are going on holiday on Monday! Woo Hoo! We are going to a place that I absolutely love – it is my favourite place on earth... Clarens in the Free State is a tiny town, nestled in the foothills of the Maluti Mountains bordering the mountain Kingdom of Lesotho. I spent many school holidays here growing up – days upon days of running free, exploring, riding my bike and making friends! The town has almost doubled in size now, but it still retains a quaint feeling. Where I used to go there to explore, it became a place to go to renew my soul. I think everyone has that place – a landscape – that just rises up to meet them and fill them with hope, serenity and awe. Well Clarens is that place for me!

More Pieces for the Puzzle

Firstly – as you can see by the pictures I took today – Malakai is doing well! He is happy most of the time and just loves his musical ladybug! On the down side, he is suffering from some serious reflux, and I am not joking! He (and I) seem to be covered in vomit (there no nice word for this...) most of the time!

But to my post!!

I feel a bit like a detective these days... Googling, researching, asking questions, demanding answers...

I have made some interesting discoveries over the past two days and I finally think I have found a link/cause of Malakai’s seizures.

On Friday we went to see Malakai’s original Paediatrician. Thankfully she was understanding and concerned about the seizures I was describing. She did however mention the link of seizure-like behaviour and severe reflux. Because of Stella’s mom sharing her story with me, I was completely open to this possibility and Malakai does suffer from quite serious reflux. So, we decided together to see if we could tackle the reflux and if the seizures continued, we would go back to the Paediatric Neurologist.

I told the doctor that the medication (Clopamon) that Malakai was on was not helping anymore for the reflux and she prescribed something else for him.

Then, on Saturday I noticed a dramatic decrease in Malakai’s seizures (both in frequency and length) and I had to think – what had changed? His reflux was still as severe (perhaps even more so), so it couldn’t be that. It was then that I realised that the only change in the preceding 24 hours was stopping the Clopamon. I decided to Google Clopamon and discovered that its main active ingredient is Metoclopromide. On page 1 of my search I was directed to the FDA’s website and a warning about this drug issued in February of this year. This drug had been found to cause Tardive Dyskinesia when taken for too long (more than 12 weeks) or too high of a dose. Tardive Dyskinesia involves repetitive and involuntary movement of the body... *Light Bulb* This drug is also thought to be the number one cause of drug-induced movement disorders. *Ahaaa* Children (and infants) as well as the elderly as said to be particularly susceptible to the negative side effects of this drug.

I have tried to figure out what dosage levels should be given to infants (to see if Malakai was taking too much), but there is conflicting information on the internet from various medical websites – some say that this drug is not suitable for children or infants, others mention 0.1mg for every kilogram and others state not more than 0.5mg for every kilogram. So, this is a discussion I will need to have with the doctor.

Regardless, I can confirm that Malakai’s seizures have definitely improved over the last 48 hours.

I am hoping and praying that this is solution. I am hoping and praying that he will not suffer any more side effects of this drug in future (as Tardive Dyskinesia can be irreversible).

Please, to my US friends – if you are using a reflux medicine for your little one, check if is contains this Metoclopromide (Reglan is the US equivalent to Clopamon). It sounds like a nasty drug with side effects that may outweigh the control of the reflux. Just Google ‘Metoclopramide’ and you’ll see the see that the scary stuff is not just on one or two websites, but everywhere...

So – I will be going to back the Paediatrician tomorrow morning to discuss this with her. Hopefully we have a solution, and hopefully not too much damage has been done.

On a lighter note...

On a lighter note - because we know we need one right?!

Today, in an article about What Mothersday Means, my little Malakai has been featured! This website approached me when my blog came runner up on the SA Blog Awards and asked me to write a little something for them about Mothersday and Travel (surprisingly easy I tell you!).

Please go check it out!

www.gotravel24.com and then click on the 'what mothersday means' link.

I will update on Malakai soon - we are going for an appointment with the Paediatrician this afternoon.

What a week!

What a week!
I think we have gone from desperate fear, to confusion, to doubt, to searching, to validation and we are finally in a place where we need to make some important decisions – and I’ve run out of steam!!
When I first noticed Malakai’s strange movements/seizures last week Tuesday, a cold chill ran down my spine, I saw something that scared me and it never occurred to me even once that the doctor (that person who knew ‘best’) would stand in defiance of what we knew we saw. I just had this idea that we could sort it out immediately. I naively expected a solution that night or the next day at the most.
I came to realise (after a very long weekend) that the solution may not appear right away. I realised that it would take a bit of a fight to get my instinct validated by someone who ‘mattered’.
On Tuesday I took Malakai to his PT for her opinion. She believed that he was intentionally doing this to get a ‘sensory kick’. For those of you who might not understand – imagine the good feeling you get when you stretch in the mornings – well, it’s something like that. I left our session not quite understanding this theory, because I could see that this movement was not voluntary for Malakai – he did not intend to do these movements, so why would he be doing them for a ‘sensory kick’?
On Wednesday I took Malakai to his OT for her opinion. As soon as I lay him on the mat, he had an episode and I saw the worry in my OT’s eyes. She immediately saw what I was seeing and it concerned her that now Malakai was having these episodes for up to 5 seconds (from half a second at the start of this). She agreed with me that Malakai looked ‘taken over’ by the movement, something he didn’t seem able to control, something that indicated seizure activity.
Yippee? Woo Hoo?
I am relieved but at the same time not. At least I know I am not losing my mind, but this means that something is the matter for sure.
I took to this thing running, slowed down to a bit of a brisk walk and now I am at a dead halt!
I need to decide whether I take my son back to the same hospital where that Paediatrician is – because that is where the Paediatric Neurologist is and getting an appointment without a referral is really difficult. But, do I want to even speak to her, much less fight to have her validate this?? Or do I move to Sunninghhill Hospital (50kms away) and try to get a direct appointment with another Paediatric Neurologist? Either way, I need to make a decision by tomorrow and get a move on again – being at a standstill is not healthy, proactive or good in any way!!
In the midst of all of this, Malakai continues to be interactive, smile, eat and sleep well – so I believe he is going to be ok. My instinct tells me that this will be ok – we just need to find the cause and then the solution.
Thank you again to everyone for caring and sharing your thoughts and advice!

The Search Continues

Just a quick post to say thank you to all the wonderful people in my life (both the real-life ones and the ones in bloggy-land)! We have felt the amazing outpouring of love, concern, advice, and support over the past week!

Well, this Easter Weekend has not made it easy to get answers. On Tuesday night all I knew was that I had to help my son and I had to help him immediately. I have since realised that it may take a little while to get the answers to my million questions!

For now, Malakai is still experiencing these 'seizures' ("...) all the time. It is quite uncomfortable for me to watch him, but it seems that despite these episodes he continues to smile, interact and eat well. So, that has kept me sane this weekend.

In the meantime, I have spoken to a second Paediatric Neurologist (thanks to a friend who I work with who's friend's sister-in-law is this very mentioned neuro - what a small world!) who was kind enough to give me advice over the phone. She agrees that a normal EEG cannot rule out seizure activity (in fact, she mentioned that sometimes 4/5 EEG's are needed before the seizure activity shows up). She also agrees that the dysfunctional thyroid could contribute to 'lowering the threshold' of seizure activity (i.e. Malakai may be more susceptible). And finally she agreed that calcium levels could aggravate seizures.

So, tomorrow I need to take Malakai for a blood test to see what his thyroid looks like and also his levels Calcium Phosphate and Magnesium (as per the second neuro's advice). I have also been taping Malakai's episodes all weekend and will be taking these tapes to his therapists (PT and OT) for their advice and opinions tomorrow. I believe that they know him (and his 'normal' movements) as well as I do and they will be able point me in the right direction.

I am actually quite a paranoid obsessive person (at the best of times) - my mind can really run the gamut of possibilities... and then do it all again in reverse! I have had moments this weekend where I have thought 'perhaps the doctors are right and this is just Malakai being extra excited...' and then I just have to look at Malakai during one these episodes and know that this is not ok. There is something the matter with him and I need to make this better.

What I am hoping and praying is that there is a relatively simple solution - for example little Stella who had episodes that looked very much like seizures but was a severe reaction to chronic reflux brought on by chronic constipation. Malakai has both constipation and reflux issues (in a big way!) - so it is is possible that it is not a neurological but biological (is that the right term?) issue. But Malakai's therapists should be able to clear this all up tomorrow.

Either way, I am preparing myself with as much knowledge as possible so that I can be equipped to ask the right questions - unlike Wednesday when I was forced (through ignorance) to believe what the doctors told me.

OK - once again... very tired! I can't wait to go to sleep! Tomorrow is the start of a new week and hopefully will bring us some much needed answers for my little man.

Again - thank you from the bottom of our hearts to everyone for your support!

I am not a medical professional...

...but something is not ok here...

Let me start at the beginning...

At about 3 months old, Malakai was diagnosed with Hypothyroidism (originally I heard Hyperthyroidism, but have since learned that I misunderstood the doctor... great...). Side effects of this condition going untreated include mental retardation and stunted growth (I must be honest, I don’t know any other side effects because those two are enough thanks...). So, Malakai has been on medication since then and every three months I take him for another blood test to see how we’re doing. So far, the medication has kept his thyroid within a ‘normal’ range.

*Fast forward to yesterday

I got home from work and, as usual, I start Malakai’s routine with a bit of playtime, then dinner, then bath, then bottle and sleep time. But during yesterday’s playtime I noticed something odd. It made me go ‘hmmm’. Every now and again he would have a ‘glitch’ in his movement (for want of a better phrase). To describe this, it would be a mixture of a fright/reflex/spasm/seizure. His arms would move involuntarily, his gaze would go distant and his breath would quicken (like when you stick your toe in freezing water). But, this would happen so fast, literally half a second, that I would blink and wonder – ‘did I see something?’.
So I watched... and I watched... and I counted at least 30 of these ‘episodes’. But I only noticed them when I was stimulating and playing with Malakai on his back.

After an hour I decided to call the Pead-on-call at our local hospital and she called us to the hospital immediately. When we arrived and were booked in, the Pead eventually arrived (by this time Malakai was so tired!) and I tried to show her what I was seeing. Her response was ‘this looks normal’ and ‘he’s just excited’. But my husband saw what I saw and I told her that this had never happened before, this was new... I was worried. She brushed off my concerns and then agreed to organize an EEG when she realised he had (and I quote) ‘abnormal chromosomes’. Like an elastic snapping, I retorted ‘no... actually he has 46 perfectly normal chromosomes... and only one extra’.

I slept next to Malakai all night, in a very uncomfortable and squeaky chair – receiving comments from nurses about Malakai’s ‘convulsions’ (please note that they actually made the ‘’ with their fingers, as if I needed some extra sign language in order to understand their lack of belief in my convictions). ‘O.K.’ people!

In the morning we got test results from blood drawn from Malakai last night. His TSH levels had increased from 1 – 8 in two months (since his last test). In layman’s terms, TSH is produced by the thyroid. The higher the level of TSH, the lower the thyroid function. Normal functioning is between roughly 1 and 5. Kai’s has increased 8-fold in two months! When I asked the Pead why, I got a –mumbly-jumbly answer about ‘growing boy’... I’m just not buying it. When I asked if this thyroid dysfunction could cause the seizures I was told ‘no’.

Even though the Peadiatric Neurologist thought my description of Malakai’s movements sounded like a thing called Myoclonic Seizures, Malakai’s EEG came back normal. The Pead was only too happy to send me packing with a ‘told you so’ attitude masked in a ‘conversation’ with my son about how his mommy needs to take him home because there’s nothing wrong with him. Can anyone spell P.A.T.R.O.N.I.S.I.N.G.?

I felt really silly, questioned my instincts as a mother. Thank God Darryl also saw what I was seeing, otherwise I think I would have lost it!

So, after sleeping like the dead for 2 hours (did I mention the squeaky chair?) I got up and started my online search for answers.

Let’s remember first though that I was told
1. Malakai’s movements looked normal
2. A normal EEG means there is nothing wrong
3. His Thyroid is not linked to the seizures (imaginary or not)

After about 5 minutes online I found the following information:
1. Visuals on YouTube showed me other babies with Myoclonic Seizures make the same movements as Malakai did.
2. Both DS-Health Online and Epilepsy Ontario agree that in people with Down Syndrome, a normal EEG does NOT rule out Epilepsy.
3. Down Syndrome-Epilepsy Foundation has done studies that definitely link Thyroid Dysfunction and Myoclonic Seizures. In fact, Myoclonic Seizures are made worse by lack of calcium in your body and the Thyroid controls calcium-absorption... pretty darn linked if you ask me!

So, after playing 0-0-Mom, I have a better understanding of what could possibly be going on. The dramatic increase in Malakai’s TSH (and hence drop in thyroid function) may have lead to a decreased ability to retain calcium thereby opening the pathway to the development of myoclonic seizures. Add to this that babies with Down Syndrome have a 40% more chance of developing seizures, and the fact that I had epilepsy as a child, and hey presto! I am not losing it.

Tonight, the seizures continued – and this time they lasted a little longer (or were linked together?). There is something wrong with Malakai and I have two ‘medical professionals’ who have given me the incorrect information and questioned my instincts as a mother. That really makes my blood start to boil. Do they not realise (just by looking in my general direction) that they cannot fob me off with un-educated opinions? I will find out and I will call them on it!

OK people – I am tired. It has been a really really long day... I have had to sit around waiting for doctors to use little ‘’ when they speak to me, I have had to fight for my son and for what I know I saw, and I have had to do this all after a night in a squeaky chair...

I am on a mission here to help my son. This is not something I want to see escalate. Please send my little boy a silent prayer, a positive thought, light a candle, blow a kiss, send us some love – please.

Nominations, Relfux & Speech Therapy

So, this has been an interesting week... Yay!! I don't often get the chance to say that my life is interesting... Usually just work, home, work, home, work, home... you get the picture!

On Tuesday I received an email from a friend saying that she had voted for my blog on the South African Blog Awards... thanks but what? I had no idea that I was finalist, never mind nominated! So - needless to say that started a frenzy of emails on my side, asking all my loyal friends to vote for this blog (if they felt the urge)... OK - so I was all of a sudden desperate to win! Also, I was just thrilled to be nominated under the "Parenting" category. Please take note of the lack of 'special/disabled/different' in that title... just. plain. simple. parenting. I think it's great that my life with my son is lumped along with all other lives! As it should be.

I didn't win though. *sob*

But I was a runner-up (shiny gold badge to follow soon - keep an eye on the right bar of my blog...). I was listed second from the top... Now, whether it was 'in any order' or 'in order of votes' is anyone's guess. But I'm sticking with 'Second Runner Up' and that's final! LOL!

OK - so moving along...

Malakai has been an unhappy little muffin of late. You know when you get home from a long day at work and you don't even get a smile? Breaks my heart right in two! I had noticed that lately Malakai would bring up milk, even 2 or more hours after a feed. So off to the Pead we went and (1 hour in the waiting room, and a minor tantrum from me, later...) we got some meds for reflux - worked like a bomb! Now my little man is happy, smiley and is even making leaps and bounds in communication and reciprocation! He is laughing more (with sound), he is smiling more, he is just overall a happier little person!

Then, lastly, our first Speech Therapy session was on Friday. I didn't know what to expect, but I had read on some other blogs about ST's helping with feeding, so I thought it would be a good idea to take some food with, so that the therapist would see how Malakai was eating. The session went well - the therapist was very happy with Malakai's eating (so am I - he's a real trooper)! After a million questions she also told me that Malakai's receptive language is at about 6-9 months (great!), and that his expressive language is at about 4 months (ok... not the best... that's about half of his actual age).

I thought that I would be more upset. I thought that it would really hurt to hear that my child is behind. I wasn't and it didn't.

I have known for some time that Malakai was not expressing as much as other babies do at his age, so it was not a shock. I am glad that we are now going to start working on the process of language. But I know that my angel will do his thing in his time. Just like everything else. He leads the way and I follow.

It's still kinda hard to imagine Malakai as older. But I have honestly found that my key to sanity (and happiness) is Staying in This Moment and Accepting What Is. This is my key (it may not work for everyone). Trying to paint pictures of a future that I know nothing about can only lead to unfounded fears - and as I have learned with my little man, he continues to surprise and amaze me as long as I leave my expectations at the door and let him lead the way.

Million $ Question

Here’s the million dollar question… If I could, would I change Malakai’s diagnosis? Would I make him ‘all better’? Would I take away this extra chromosome that makes my child different from his peers?
My instinctual answer is ‘yes, of course I would!’. If your child had something that would affect his life & make things more difficult – like being deaf for example - you would go right out and see if you could get him a hearing aid to help him, or start teaching him sign language – all in an effort to make his life as easy and happy as possible. Of course you would. But to say that I would wish to ‘fix’ Malakai is to say that there is something ‘wrong’ with him. And that, my friends, is where the waters become murky.
About 17 months ago something happened. In the darkest, safest place inside of me I grew Life. One cell became two, and two became four… and four became eight… and Life flourished. Before I was even aware that there was something happening, my body naturally protected, nurtured and fed this little Life. I gave of myself (and let’s not forget that my husband had a part to play too!!) and from me this little Life sprouted proudly and defiantly against all odds. I say against all odds, because the ‘error’ that occurred when Malakai’s 21st chromosome triplicated should have been a reason for a spontaneous and natural miscarriage, but it was not. His Life continued, and it was spared judgment by the “Laws of Nature”. When the first cell became two there was a ‘glitch’ and instead of two 21st chromosomes, my son had three. This would be replicated in all the cells that followed. But let’s not forget, my son is of me. My cells made him, and he flourished. I am aware of the statistic that states that 91 percent of the time, it is the woman’s egg that causes the glitch. So I could say that Malakai is 50% my husband and 51% me!!
So where am I going with this?
What I am trying to say is that I don’t believe my son is a mistake. I don’t believe that anything about him, from the tips of his fingers to the bottom of the soles of his little yummy feet is a mistake. He is whole, he is Malakai, he is of my flesh. My body did not make a mistake, harbouring this little life, keeping him safe and sound well before I even realized he was there!
To want Malakai to be ‘cured’ of this, would be say that there is something wrong with him. Yes, I don’t deny he is different from most of his peers, but is difference such a wicked thing? Is difference a thing to be stamped out, hidden away and feared? Yes, life will be a bit more challenging for Malakai, but who’s to say it won’t be for Johnny Smith down the road one day? If we found out that Johnny ran the risk of a challenging life, would we want to ‘cure’ him of his challenge? Isn’t his challenge perhaps the thing that will make him that much stronger, that much happier, that much wiser?
If my child could be cured, fixed, changed would I do it? I don’t think so. It would be like taking the gift and returning it for something else, or eating the cake and leaving the icing – Malakai, in his whole entirety, is my child. He has come to this earth to learn and love, he is in my life for reasons I cannot possibly even start to imagine. Oh the lessons! The Joys! The Journeys we have yet to embark on! Give this back?
Why?