Searching for a diagnosis for my child with special needs....my kids and I’s backstory part 1
Updated: Apr 17, 2021
Hi! 😊 Today I thought I would share our journey of trying to find a diagnosis for my son with special needs. For those of you who don't know me....my name is Nadya Tahri and I am a mom of 4 with my youngest 2 having special needs.
I wanted to create a podcast where other parents who have a child with special needs could come to get some tips, suggestions and encouragement. So if you prefer to listen to podcasts more than reading a blog, head over to my podcast called "Special Needs Parenting SOS". Here is the link to my podcast that talks about trying to find my sons diagnosis....part 1 https://podcasts.apple.com/us/podcast/special-needs-parenting-sos/id1560771347
I know it can feel mmmmhhhhh pretty overwhelming at times, you know...having a child with special needs and sometimes it can feel really lonely and I want you to know that you are Not alone.
I am here and happy to support you in any way I can. 💕👍
Today…...I wanted to share a little bit about my kids and I so that you have a better understanding of who I am and where I’m coming from and why I am SOO passionate to help other parents who have a child with special needs. 😇💕
So like I mentioned earlier…..I have 4 kids.
Gabriella is 22,
Elijah is 20,
Isaiah just turned 6
and Josiah is 3.
Going back a bit….my sister got pregnant with her daughter, Amalia
and then 2 years later, I got pregnant with my daughter, Gabriella. So we both had girls to begin with and they were 2 years apart.
Then without talking about it or planning it…..my sister and I both ended up getting pregnant AGAIN, each with boys and we ended up giving birth just a week and a half apart.
So her boy, Amir and my son, Elijah ended up being born super close together.
But we began noticing as time went on…..that Amir wasn’t meeting the bench marks that the doctors always look at when you bring your child in for an appointment.
He wasn’t able to sit up on his own or even able to hold his head up.
We were really confused because the doctors couldn’t figure out what was ammater with Amir….but there was nothing wrong with my son, Elijah…...so as the years went on and Amir wasn’t able to walk or talk.
He wasn’t able to feed himself.
He was fed through a G-tube.
He was in a wheelchair
….and this WHOLE time I just thought that whatever was wrong with Amir had to be on my sisters husbands side of the family….right? Because there was nothing wrong with either of my 2 children, so I thought that whatever was wrong with Amir HAD to come from my sister's husband's side of the family.
So anyways…..fast forward 15 years…..and then I gave birth to Isaiah and I didn’t notice that anything was wrong to begin with…..but as time went on, I began noticing that Isaiah wasn’t able to hold his head up!
And he wasn’t able to sit up or crawl or anything.
Isaiah wasn’t able to do things that he SHOULD have been able to do….especially by the time he was 3 months old.
And so then I began thinking that MAYBE Isaiah had something similar or maybe even the same thing as Amir.
Now, the doctors DID catch through Isaish’s blood work, that his thyroid levels were off and so when Isaish was 3 months old he was diagnosed with hypothyroidism and so they started him on levothyroxine and said that as long as he takes the levothyroxine every day….then he should develop just fine.
So, we started giving him levothyroxine every single day when he was 3 months old, but by the time Isaiah turned 5 months old….I thought….”Something is NOT right!” I’m giving him his levothyroxine every single day but he is still not developing correctly.
He still can’t sit up or ever hold his head up!!
Now, YES! It HAD been a long time since my older 2 kids were young…...but STILL, I knew that by this age…..Isaiah should have been able to hold his head up and sit up.
I KNEW that something was WRONG!
So, I did what we all do!
I went straight to google and started looking up what it might be.
I was trying SOO hard to figure out what he had.
Trying to figure out why Isaiah wasn’t progressing.
And from everything I read online…..it seemed like he had Cerebral Palsy…..and so I took Isaiah to one of his doctor appointments….to see his endocrinologist at Doernbecher Children's Hospital when Isaiah was 5 months old and I said…..”I’m thinking Isaiah has Cerebral Palsy.
"What do you think?"
And she said “No….I don’t think he has that. Why do you think he has that?”
So I laid Isaiah on the table there….on Isaiah's stomach and I said “LOOK! He doesn’t hold his head up!
He doesn’t turn his head to the right or left.
He doesn’t push up with his arms.
He doesn't’ grab for a toy or anything with his hand.
Like CLEARLY something is WRONG! And I just don’t know what it IS!!
Then I began telling this doctor about Amir and saying…..I wonder if Isaiah may have the same thing as Amir….or something similar to what Amir has.
But Amir is 15 years old and he has never been diagnosed because the doctors have never been able to figure out what he has.
So even though we don’t even know what it is that Amir has…….I am starting to wonder if maybe Isaiah might have whatever Amir has.
So then, this endocrinologist doctor at Doernbecher…..she got the idea for what Amir and Isaiah might have…..but she didn’t want to tell me because she didn’t want to scare me and she wasn’t sure how I would handle the news.
So she said….."I DO Think I have a good idea of what Amir and Isaiah MAY have…...but the only way that we can diagnose it is through blood work. This syndrome is VERY VERY RARE. It’s genetic and I don’t want to tell you too much about it OR stress you out….until we do the blood work….and then we can talk more from there."
She asked me to bring in my kids and my mom, my sister as well as my sisters kids and we all went into Doernbecher and they drew all of our blood and then they overnighted our blood to Chicago…...which is the only place that they test for this particular syndrome.
So, we ended up getting the results about 2 weeks later and that is when we got an official diagnosis.
But before I go into what the results were…...I wanted to quickly jump to another aspect of this story. So, when Isaiah was about 5 months old…..my mom moved in with me.
I knew something was wrong with Isaiah, but didn’t know what it was and I asked her if she would be willing to move in with me to help me because I was still working at the time as a licensed massage therapist…...and I had my 2 older kids as well and I was just trying to juggle everything….you know with all of the doctor appointments and working and…..it was just a lot!
So, then my mom moved in with me which I am SOO grateful for!!
My mom ended up moving in with me back in August of 2015 and then just a couple of months later…..I believe it was in November 2015….and I’ll never forget….it was the first day we had ever taken Isaiah to the zoo and I was soo excited to take him, but my mom wasn’t feeling too good….so she wanted to lie down, which I thought was VERY strange because my mom is a very busy body and she doesn’t rest much.
But before we left to go to the zoo, she asked to lay down for a while, hoping that she would feel better after resting for a bit.
So she did rest, and then we went to the zoo and walked around for about 2 hours and then that very day, my mom ended up having a blood clot in her leg that went to her brain and caused her to have a stroke.
On top of the blood clot and the stroke, she also ended up having 5 seizures and had to be hospitalized for weeks and it was SOO scary!!
I had always known my mom to be SUPER independent and busy and more than capable of doing anything that she wanted…...and then all of a sudden…..she was lying there in the hospital bed….she wasn’t able to walk, she wasn’t even able to feed herself.
I remember feeling SUPER scared and SUPER stressed.
She went from one minute being VERY independent and strong willed…..a busy body…..going everywhere doing everything…...to just like THAT!!
She was laying in the hospital bed unable to feed herself and needing SOO much help and assistance.
I of course had to cancel all of my clients because there was NO WAY I could possibly work because I was SOO stressed about if my mom was going to be ok or not.
I remember feeding her and praying to God….saying PLEASE let her be able to walk again and please let her be able to talk and be able to feed herself and to be able to get her life back.
It was SUCH a scary time and this was all BEFORE the actual diagnosis!
It was leading right up to it.
So, when my mom was in the hospital I remember being super stressed and praying and then I told her “Mom, I am going to run back home really quick and grab a bite to eat and then I will be right back….ok?”
Then as I was driving home from being at the hospital with my mom ….and THAT is when I got the call from the endocrinologist …..the specialist from Doernbecher calling me to tell me the results of our blood work.
But at the time….I wasn’t really thinking all that straight….I was super stressed about my mom and if she was going to be ok and I should NOT have taken the call,,,,,especially since I was driving at the time, but I took the call anyways and that is when the doctor officially confirmed that YES!
Isaiah DID in fact have the exact same thing that Amir had.
And it’s called Allan Herndon Dudley Syndrome.
Ok, that concludes part 1 of my kids and I’s backstory.
I will be back again next week with part 2.
~ If you are a parent of a child with special needs, I would Love to have you in my private FB group. It is a safe environment, strictly for parents who have a child with special needs, where you can get the encouragement and support from other parents who can relate to what you are going through. The name of my private FB group is “Special Needs Parenting SOS.” ~ 😇💕 Just click this link if you'd like to join my private Facebook group https://www.facebook.com/groups/1187518441624603/
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