Arkan, Our Brave Warrior
Three years ago we were blessed with the birth of our long-awaited second child; our handsome, smart and very charismatic baby boy Arkan.
As expected, having an eight year age gap between him and his brother Adam wasn’t the easiest ride, mainly the two not having much in common, each belonging to a different world of interests. So although they actually love being around each other, they don’t really play together that much.
One would be reading, while the other watches cartoons, one would be writing his homework, while the other scribbles all over the walls, one would be singing, while the other screams his lungs out; but they still managed to find a few things they actually enjoy doing together. They love playing hide and seek, having foam sword fights, and of course, they like playing video games together. But I must say, the one thing they enjoy the most is wrestling! Yep, you read that right, they do wrestle, a LOT, and don’t be fooled by Arkan’s little body and young age, he has one hell of a headlock that even mom & dad find hard to escape from.
What I’m trying to say I guess, is although we would’ve loved to see our sons having more in common, spending more quality time together and not just around each other, and although our experience might not be an ideal one to many, but to us, it is definitely a very exciting and a very rewarding one, despite all challenges that make it overwhelming at times, and looking at the bright side, the best part about such an age gap for us as parents is not having to deal with siblings’ jealousy or rivalry… almost! 😉
And as my baby boy grew, so did his struggle… and ours.
See, Arkan was hitting all milestones he was supposed to, until the age of 8 months, that’s when he started showing difficulties in feeding. I started talking to doctors about my concerns, but was asked to be patient and wait.
With every passing day, his feeding would regress, and on top of that, he started showing signs of speech delay. Then the problems kept adding up: balance problems, being in pain most of the time, having mood swings and getting really cranky and not being able to express himself in words.
To make a long story short, my son’s situation was worsening by the day, and all my trips to doctors were in vain. I was considered an over-protective paranoid mom, and was constantly asked to be patient and wait it out… because my son looked “perfectly healthy”.
But I didn’t wait, and I’m glad I didn’t, I felt something was off, so I followed my gut, put my life on hold and started educating myself in every aspect of child development; I read, researched, investigated here and there, I consulted a number of physicians, I had my son assessed _physically & developmentally_ by every specialist you could think of, and every time I’d get a diagnosis, I would go and read about it, if I felt the diagnosis didn’t fit my son’s condition, I’d simply ignore it and keep looking.
I kept doing this, until finally, last summer _yeah, it took me two whole years to get the right help_ August 22nd, 2017, we got a proper diagnosis for my son’s condition. That day I realized that all my son’s tantrums were not those of the terrible twos, but those related to pain and frustration caused by: Chiari Type
I Malformation, a congenital structural defect in the base of the skull and cerebellum that causes a brain herniation, where part of the brain (cerebellar tonsils) descends into the spinal area.
Many refer to it as a rare condition, but it’s not actually (about 1 in every thousand people have it), it’s just hard to diagnose, and is commonly misdiagnosed as migraines in adults.
In October, Arkan had a brain decompression surgery (not just a bone decompression, but also a duraplasty and the whole nine yards really) it was a nightmare to make the decision whether or not to operate on him, given the risks and his young age, but we made our decision after extensive research and consulting, and we pray to God every day that we made the right choice.
We were told that it’d take an average of 6 months for any significant improvement to show.
It’s been only two months since the surgery, we had a few set backs, unfortunately, but his health is now stable, thank God.
As for any significant improvements in his preoperative symptoms, there aren’t any yet, except for the fact that he seems to be in a lot less pain.
Till today, he’s still struggling with feeding, and he’s still completely non-verbal.
And as hard as it is, we’re trying to be as patient and as optimistic as possible.
We’ll never give up hope, and we’ll keep supporting him every way possible, and we’ll do all we could to hear his voice and see him devouring one of his favorite meals as kids his age do.
We love you our little Chiarian, our strong brave warrior, Arkan.
P.s. For more info. about Chiari Malformations, also check Conquer Chiari.
I’m sure when Arkan is well and older, he’ll appreciate how fortunate he is to have such loving and supportive parents, and such a fearless, brave and perceptive mother. And how rare that is.
Thank you so much for your lovely comment and your constant support. I appreciate it more than you think.
Habibti Eman.. I can relate to so much of your struggle, although we are thankfully in a much “better” situation. Our precious Saif Eddin was born with a mild cardiac problem and developed several other, seemingly unrelated conditions, before he even completed two years of age. I recall how I felt every time he underwent a surgery – there was a total of 5 before the age of 5 years, all major surgeries, and countless hospitalizations, many injuries in the process and so many sleepless worried nights. Interestingly, his cardiologist described him as “charismatic” before he could even speak – just as you describe lovely Arkan. I am sure Allah will grant you and him the best, and will reward all your patience and struggles with a healthy boy who lights up your life and grows up to be a smart, handsome man. Ya rab <3
Thank you for your comment Deena, and I’m so sorry to hear this!
I hope the worst is over and that his health is now stable and improving by the day inshallah.
Wish your little prince a bright, healthy and successful future inshallah, and you a worry-less motherhood dear.
It is not easy but you obviously did the right thing. Wishing brave Arkan a full speedy recovery, in every aspect and angle.
Salamtoh alf alf salameh
Thank you so much Haitham for your sweet wishes, allah ysalmak ya rabb.
It’s been ages since I last managed to skim thru your lovely writings sis, and landing on this piece was the highlight of my day!
Arkan… such a character mashaallah, he gets to the heart in a blink of an eye.
I’m pleased the surgery went well Elhamdullellah and it surely was a source of comfort to him, yourself and all those who love Arkan. Thank god he’s not in pain any more and this matters the most. The best is yet to come inshaallah and every day is a new opportunity to lead a happy life despite the challenges 😊🌸
Hang on best mommy ever! Hang on most charismatic chiarian by far!
Bless you young boy!
Thank you sweetest Monia, and may God bless your little prince, our yummy Ali 🙂
I hope things will improve, and inshallah his suffering will come to an end soon.
Thank you sis :*
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How is our little hero doing?
🙂
He’s working so so hard 🙂 very intensive therapy.
Very slow progress, but we’re willing to wait.
THANK YOU for checking on him 🙂
slowly but surely, in God’s willing
Hi. I am a mom in similar situation—my oldest is 15 and my youngest just turned 2. I kneel something was not quite right with my young son. He received a chiari diagnosis last month. He did say a few words from 12-18 months. Now, he is completely non-verbal. We are trying to decide about the surgery. I’d love to hear your thoughts!
Thank you for your comment Pam.
The most difficult step for parents in a Chiari diagnosis is to decide whether or not to operate. As you might have been told by your neurologist, a decompression surgery is not a treatment, and is no guarantee that the symptoms will go away, or improve.
First and foremost, I believe your best bet is to ask the specialists. Ask your neurologist, ask to be referred to at least two neurosurgeons from two different hospitals, and if you were able to, seek consultation from other countries online.
Usually the specialists will take into consideration the location, size and possible effect of the brain tonsil herniation, and whether there’s a Syrinx (a fluid-filled cyst on the spine) and accordingly, they will recommend whether or not to operate. Depending on where you are, the specialists may claim that your son being non-verbal has nothing to do with Chiari, or they might. Don’t be discouraged, and try to fix the Chiari first, then once your son’s settled and hopefully recovered (if you go for surgery) you can further dig till you find answers to your questions regarding his speech.
In our case, one of the top neurosurgeons in the country (Canada) advised against surgery, another great surgeon highly recommended it, and fast. Although both couldn’t confirm whether it was the cause behind his speech and feeding problems or not.
So I asked around, in the US and Germany, and both surgeons confirmed that Chiari is the cause of my son’s struggles, and that surgery is a must, as soon as possible. But then again, the Canadian surgeon wanted to do everything there’s to be done (to avoid future re-operating, but that comes with high risks), whereas the German and American surgeons wanted to do only one step (but that meant the likelihood of re-operating in the future). We went with our gut and chose the Canadian surgeon.
While many Chiarians who had the surgery saw immediate or very fast improvements, our little one didn’t show any signs of significant improvement in feeding and speech until a year in. The progress is very very slow, but it’s there, and we’re willing to wait, because it’s worth it. But he also had eye-coordination and balance problems, those improved right away. He also felt numbness and pain in his extremities, those too improved very fast.
My son’s Chiari is a very significant one, 13 mm herniation (the average in adults is 5mm).
Now the feeding and speech problems are thought to be related to Childhood Apraxia of speech/ oral motor Apraxia, and the speech therapists are treating it as such.
So my advice is, seek different opinions, ask about the pros and cons of a surgery, because every case is different. And follow your gut. But most importantly, don’t settle for one opinion, ever.
If you decide to go for surgery, once it’s all over, have your son checked by a developmental pediatrician to rule out any developmental delays or behavioral problems. If you decided not to operate, have him checked right away. The more causes you rule out, the easier and faster it becomes for you to help him.
You might also want to read my post about Apraxia of Speech here: http://aquacool.blog/2018/05/28/apraxia-of-speech-the-struggle-to-get-timely-diagnosis/ Hope it helps.
If you have any questions at all, please don’t hesitate. And best of luck to you, your little one and your whole family.