We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Sunday, April 19, 2009

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.

16 comments:

Justin said...

Hi Loren
I am so happy to hear that Malakai is doing better! I have been very worried but didn't know enough about seizures to offer any insight. I am proud of you for researching this and figuring it out for yourself. It is sad that the Dr.'s didn't know enough to think about the meds Malakai takes and to consider this could be from possible side effects right away. That seems so basic!
Please know that the boys and I follow your blog and love to see your gorgeous pictures and have been thinking about you all.
By the way, Julian also has reflux STILL at almost 4 years old! He takes Prevacid. Don't know if you can get it in SA but his reflux has been well controlled since about the age of 1. Most children grow out of it after the 1st year fortunately though. Hopefully Malakai will too.
Good luck and good thoughts from all of us that your sweet boy continues to improve!
:)Katie, Jude, Julian, and Justin Jonker

Tim and Kelli said...

Glad to hear you may have found the solution. Cute pictures.

The Boltz Family said...

Glad to hear he is improving. Great detective work! I was thinking Sandifer syndrome until you said that his reflux had not improved but his seizure activity had. Mama's know best, and you should be proud of yourself for pushing further until you have found answers.

Heidi said...

I'm so glad that you made such a great discovery with what is happening with Malakai! He is such a sweet little boy (I love your pictures!).

I have been following your blog for a little while now and thought I should introduce myself! I have two little boys - Caleb (4.5) and Joel (22 months with Down Syndrome).

I have enjoyed getting to know you a little bit on your blog and look forward to hearing what your doctor has to say about your discovery!

Heather said...

Nice detective work and here's to an even better week and to seeing those seizures go completely.Way to go momma ...

Conrad, Megan and Our Precious Keaton said...

Im still in shock from our conversation yesterday when you told me about your findings but at the same time im very proud of you my friend! These days you have to double check these darn doctors, I really do think that we are just a number to them and they actually have no emotion or pride in their work! They just want our money! Anyway I will keep Kai in my prayers as always! The new pics are just too gorgeous - he is growing up way to fast! Cant believe he will be 1 in 3 1/2 months.... Good Job my friend!
Megs

Ferreira Family said...

Hi Loren,

Thanks for the update, glad you are finding answers.. I hope the seizures stop and all goes well for Malakai from now on..

The picturs are stunning - Malakai is beautiful..

Love
Claire

Lovin Mama said...

There is no better detective than a mom looking for answers! I hope Malakai continues to better and you can find an alternative reflux med. Years ago a friend of mine took her baby off of Zantac because she said it was making his arms shake. I had forgotten all about it until I read your post.

Ruby's Mom said...

Great research work! The internet is great isn't it?!?! I'm so glad you found what might be the problem!

Beth said...

Lovely news, Detective!

One point: even if the dosage of Clopamon does turn out to be correct for Malakai's weight, that doesn't mean it's correct for his individual metabolism.

I pray that Malakai continues to make progress (and with reflux as well!)

Hector and Jennifer Varanini Sanchez said...

So interesting!!! Thank you so much for sharing.

Lacey said...

Nice detective work mom. Have they discussed a nissen for his reflux? That would really help.

Lisa said...

Very interesting. It sounds like you are definitely on to something with the meds.

The pictures are awesome. Malakai is just beautiful. Love the expressions!

Deqlan said...

Hello Loren, praying you get all the clues and answers on your investigation and can get to the bottom of making the seizures ease and get better! Kai, you are to cute for words! You are gorgeous and your mommy continues to blow us away with her photos -your hair has grown so long! Have a lovely day, praying for answers and healing God bless love mark samm deqlan logan

Melissa said...

WOW! Thank you so much for informing me of this!! THIS IS HUGE for Dillon's been on reflux meds for a long time...

I'm so glad that his seizure are improving! Will have to pray for him tonight;)
Your photo's are too precious BTW...sure hopes that soon, he will be seizure free!!!
{{HUGS!}}

My name is Sarah said...

Malakai is so cute. Sorry to hear about the reflux.