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  • Nadya Tahri

Searching for a diagnosis for my child with special kids and I's backstory part 3

Updated: Apr 17, 2021

Hi! ๐Ÿ˜Š If you are new to my name is Nadya Tahri and I am a mom of 4, with my youngest 2 having special needs. I created this blog to help other parents who have a child with special needs to get some tips, suggestions, support and encouragement because I know first hand the many challenges we face on a daily basis.

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 part 3 of my kids and Iโ€™d backstory.

Today, I will be sharing part 3 of my kid's and I's backstory to hopefully help you get a better understanding of where I am coming from and why I am SO passionate about helping other parents who have a child with special needs. If you would like the full story, be sure and read part 1 and part 2 as well.

*So just as a quick recap....last week during part 2 of my kids and I's back story, I was talking about going in and getting these weekly injections of levothyroxine during my pregnancy with my youngest....Josiah.

They had tested through the amniotic fluid and found out that he had confirmed positive for having Allan Herndon Dudley Syndrome.

So I was going in every single week for the duration of my pregnancy, getting these levothyroxine injections and today I am going to be sharing about what a huge difference getting those injections made for Josiah compared with my son Isaiah, who also has the same syndrome, but did not get the injections.

So, before they would allow me to get those injections, they had me sign a release stating that I understood that it could cause my water to break early. It could also cause me to have a miscarriage. There were a number of risks involved in me getting these injections, but I went ahead and got them anyways in hopes that these injections would help my baby develop better.

And that is exactly what ended up happening.

My water ended up breaking when I was 34 weeks pregnant. So we called my doctor and asked whether we should wait or come into the hospital and my doctor said to definitely come into the hospital, so we did. However, even though my water had broke....I still wasn't actually having any contractions.

So once we got to the hospital, they said that they wanted to wait for 24 hours to see if my body would go into labor on its own naturally and if not, then they would start me on Pitocin.

So I was in the hospital for 24 hours, but I still hadn't started having contractions, and so they gave me Pitocin....which obviously sped things up and so the doctor came and sat me down and was telling me that "when a baby is born 6 weeks or more early that often times their lungs aren't developed enough and so we will need to have the NICU team here in the room with you as soon as you go into labor and they MAY need to take your baby, like right away." "Depending on things like if your baby is able to breathe or how his lungs are developed....we just want you to be aware that we may have to take your baby.... right after he is born and get him to the ICU asap."

I remember being SOO appreciative for them talking with me and giving me warning ahead of time. There was also a nurse that came in and talked with me as well, telling me the same things that the doctor had just shared with me.

So then when I went into labor, the whole NICU team was in the room with me, I think it was like 6 or 7 of them

and as soon as Josiah was born, he let out a big cry and I remember them handing him to me and I was looking at Josiah and so happy that he was just born and then I looked up and then the whole NICU team were all gone. And I was like "Where did the NICU team go?" and the doctor was like "Oh, his breathing is good, his coloring looks good, so they left. They were only here just incase."

And so I was SOO relieved to know that even though he was born 6 weeks premature, that he was still breathing good and his lungs were developed enough and so that was really exciting!

Now as far as some of the benefits of me getting those injections, in comparison with Isaiah who didn't get any of the injections because at the time I was pregnant with Isaiah, I didn't know that I was a carrier of the Allan Herndon Dudley Syndrome.

But, before I jump into those differences, I just wanted to mention really quickly how old they are so you can picture a rough idea of their ages as I describe what all they can and can't do here in a, Isaiah just turned 6 years old last month and Josiah will be 4 years old in 2 more months. back to the differences between Josiah and Isaiah.

Josiah is able to swallow Really good. He doesn't choke on his own saliva. He swallows great. Whereas Isaiah chokes a LOT, just even on his own saliva. So it's a pretty big difference. And it is Really concerning that Isaiah chokes a lot and so it's really nice that Josiah doesn't choke at all. It's a huge relief!!

Something else is that Josiah is able to eat stage 1 and stage 2 baby food, like purรฉed foods. And so he is able to swallow that just fine.

Whereas Isaiah isn't able to swallow good at all.

Both of my boys have had a swallow study done and Isaiah is NPO....which just means "Nothing by mouth" because it goes down the wrong tube.

So ALL of Isaiah's food, medicine and water......all of it needs to go through Isaiah's g-tube.

Whereas Josiah, we are able to feed him purรฉed foods and he does just fine with that.

So that's a pretty big difference.

Another difference between Isaiah and Josiah is that Josiah has really good head control.

Josiah can totally control his head no problem.

He can look up and down, as well as to the right and to the left.....all with ease. His head doesn't hang to one side or the other and he doesn't struggle to pull his head up or down or in any direction. He has excellent head control.

Whereas with Isaiah, Isaiah does not have good head control at all. Isaiah struggles to pull his head forward or back. He also struggles to turn his head to one side or the other. So that is another big difference between the two.

Also, Josiah has really great upper body control. He can control his torso area no problem.

Whereas Isaiah needs a lot of support for his upper body. Isaiah will like fall over or slump over if he doesn't have anything supporting his torso area. He just doesn't have that torso support on his own at all.

Another big difference is that Josiah is able to stand with very minimal support. So if we hold on to each of Josiah's hands, he can stand. Or if we put our hands around Josiah's hips, he can stand just fine. He needs very little help.

Whereas Isaiah needs help and support all the way around his torso and hips in order to be able to stand.

Something else is that Josiah is able to grab a toy and hold onto it, but Isaiah can't grab onto a toy at all.

Isaiah can swat at a toy or swat at something he is interested in, but he can't actually pick up anything. So that is another big difference.

And not only can Josiah pick UP something, he can also bring something TO his mouth as well as put things IN his mouth.

So if we give Josiah a spoon with some pudding or something smooth like that on it, he can actually put the food on the spoon inside his mouth.

Isaiah totally can not do that. I mean.....even if Isaiah was able to eat by mouth, Isaiah can't hold onto something nor could he get it TO his mouth.

Another huge benefit of Josiah getting those injections are the fact that Josiah has Really good fine motor skills, so Josiah can pick up like a little piece of ribbon or anything really tiny, small or fine. Josiah has the ability to use his index finger and thumb and pick it up no problem!

Whereas clearly Isaiah can't do that.

So there are actually a LOT of differences between Isaiah and Josiah.

Oh! Another thing is that Josiah babbles a LOT!! He goes on and on and on.....almost as much as I do ๐Ÿ˜‚๐Ÿ˜‚ Ha ha....ok, not quite as much as I do! ๐Ÿ˜‚๐Ÿ˜‚ And we just LOVE how much Josiah babbles because we know he is trying to communicate with us and tell us things.

Whereas Isaiah doesn't hardly babble that much.

Now, neither of the boys are able to say a they can't actually say a word, BUT Josiah is babbling all the time,

Whereas Isaiah is more quiet.

But even though Isaiah is more quiet....Isaiah is Very Happy, and he smiles ALL the time.

As far as the last big difference that I notice between Josiah getting the levothyroxine injections, verses Isaiah not getting the that Josiah can be on his stomach and then he can roll over onto his back. Or he can be on his back and then roll over to his it's pretty exciting to see.

Whereas Isaiah can't roll at all. If Isaiah is on his stomach, he can't roll onto his back and if Isaiah is on his back, he can't roll onto his stomach.

There are a slew of things that prove that obviously these injections paid off because there are so many things that Josiah can do that Isaiah can't do.

Looking back, I REALLY wish that I had known about these injections when I was pregnant with Isaiah. I also REALLY wish that I had known that I was a carrier of the Allan Herndon Dudley Syndrome, because I would have absolutely gotten the levothyroxine injections for Isaiah to help him with his development and to help him not choke on his own saliva and to be able to have head control and torso control and so that he could pick up a toy if he wanted to.....the list goes on and on.

So all in all, the good news in this experiment that I did, with getting these levothyroxine injections, .....(p.s...... these levothyroxine injections had never been done before, so I was the first person to do this experiment) anyways, the good news in me doing this experiment is that moving forward....any other woman who knows that they are a carrier of Allan Herndon Dudley Syndrome.....IF they get pregnant and they find out it's a boy, then they can have their amniotic fluid tested just like I did, and with that amniotic fluid, they can test for the Allan Herndon Dudley Syndrome and that way they can find out in advance....before the baby is born, and then they can know whether the baby has Allan Herndon Dudley Syndrome or not.

And if in fact, the test comes back positive and they know in advance that their baby for sure has Allan Herndon Dudley Syndrome....then that mom will KNOW that she can have the exact same levothyroxine injections that I did, and instead of guessing "Is this going to help my baby or not?" or "Is this even worth it?" she can look at my story and then know with certainty that YES! These levothyroxine injections DO help!!

We already know this because Nadya did it!

That as long as the levothyroxine injections are given every single week for at least 17 weeks in a row during the pregnancy, that it REALY DOES help with the baby being able to develop.


So that is the good news of this story and those are the results of me getting those levothyroxine injections and that is it for today. ๐Ÿ˜Š๐Ÿ‘

If you have a child with special needs, I would LOVE to invite you to join my private Facebook group strictly for parents who have a child with special get the support, encouragement and connection that we ALL Need! So if you'd like to join....the name of my private Facebook group is called "Special Needs Parenting SOS". Looking forward to connecting with you! Have a great day! ๐Ÿ˜Š๐Ÿ‘๐Ÿ’• Just click this link if you'd like to join my private Facebook group

#AllanHerndonDudleySyndrome #AHDS #MCT8 #endocrinologist #diagnosis #pregnancy #ultrasound #boy #amnioticfluid #testing #experiment #Dr.Refetoff #UniversityofChicago #geneticist #research #injectins #levothyroxine #highrisk #hospital #labor #delivery #NICU #SpecialNeedsParentingSOS

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