Thyroid and Therapy 

These two things don’t normally go together but I thought I would give an update on Eli’s progress. 

We have started private therapies since Eli aged out of our state early intervention program. We now go to a facility twice a week for his services. 

We have been very blessed to not have a lot of extra appointments or doctors added to our life. We know that. Yes, we have additional things we have to do because of Down syndrome but in general we haven’t had the experience of driving all over town for appointments…until now. 

I don’t think anyone really told me how big turning three was. I knew Eli would go to school and I knew he would lose services but I didn’t realize what we would be adding. I worried about how it would all work out constantly. But now that we are in it, we have some adjusting to do. 

School / Therapy 

Private schools and private therapies are crazy expensive. About 6-8 months prior to his third birthday, we began to really dive into our options. My parents have been gracious enough to offer to cover tuition for private school for Eli and Ruby. Obviously most people don’t get quite that lucky and we feel super blessed. Eli and Ruby will both attend a private inclusion play-based preschool twice a week. Eli will attend PPCD three times a week in addition to that. He’s a busy boy! But inclusion was an important component for us and Ruby will definitely benefit from the challenge. If it becomes too much for Eli, we will consider only attending PPCD for him. But for right now, this is the plan. 

We have ended our ND program for now. It’s very expensive and Eli is getting so much therapy as it stands. Also, our therapist is no longer coming to Texas so it was time. The universe said so and we accepted reluctantly. 

Private therapy has begun instead. We had applied for Medicaid for Eli twice before. Once because we were told that Eli automatically qualified based on his diagnosis. This was false. We were denied twice because the program is income based. When we applied again 6 months ago, our family situation had changed. We have two more children and one less income. The third time we applied, I decided to try for Medicaid Buy-In. This time, it seemed that Eli’s Down syndrome was actually a factor. We were approved for that and HIPP Texas. We pay a small monthly premium for Medicaid and it covers all his therapies. To put this into perspective, we got a phone call from the therapy facility prior to attending his evaluations. The call was to inform us that the three evaluations were going to cost us just under $1,000…which is obviously an incredible expense. Not to mention the cost of attending weekly sessions. But Medicaid stepped in and covered what our private insurance didn’t cover. What a huge blessing! I’m blown away still. 

Medicaid doesn’t cover anyone else in our family, which is why I think his diagnosis was a factor here. But either way, all we wanted was to make sure his therapies were taken care of and that we were getting him the best we could offer. He couldn’t go without therapies and while PPCD does work with him, that time is limited. 

The private facility offers experiences we can’t give him home or school. They have equipment we don’t have access to and what seems like limitless access to tools and materials we have only dreamt of. It’s also a good thing for my family. It challenges Ruby outside of the house, creates a routine, and gets us out and about. While it means we are less available and busier, it’s a positive overall. 

PPCD has been great. We are two weeks in and have already seen some positives. Eli is a little less shy and more flexible. He seems a little more social and is playing using his imagination more. He has said “mama” without prompting and imitating more noises and sounds (including the “lalala” sound which we have never heard before). School is great and we couldn’t be more thrilled. It’s the first thing Eli wants to do when he wakes up and that makes my heart happy. 


Health / Supplements

So far, we have spent a lot of time working with our local DS clinic as well as our pediatrician, ENT and naturopathic doctor. This seems to meet all of Eli’s needs for now. Our big focus has been on his thyroid and growth. Eli has high vitamin A levels and we are looking into wycwe are supplementing T3 levels. Because of this, we are stopping all our previously used supplements and looking into other options that specifically target what his blood work indicates is needed. It was a scary thought initially but I have to admit to myself that these supplements are designed to make Eli healthier and beyond that I have seen no difference between Eli on supps and off supps. Has he been healthier? Yes. Does it make him smarter or cure Down syndrome? No. Do we want the best vitamins that his body actually needs? Absoluteky! That extra chromosome means he processes things so differently than we do so I want to get it right. 

We have continued cranial sacrial work as well which is great just for sensory if anything else. 

The last thing we are looking to explore (slowly) is growth hormone. We know that his height isn’t really that big of a deal and I’m a small person to begin with. If he is going to be small then we are ok with that. But his dad is tall, and Eli at age three is in the same shoe size as his 1 year old brother. So we feel like this is something that needs to be addressed. We will be gathering more research and working with our doctors before making any moves. 

There are days it feels overwhelming to have to consider all of this, but there are far more days where it’s worth it because I see how well he is doing and how amazing these opportunities are to make sure Eli is at his best always. 

Are we busier now? Yup! But it’s a good busy. We were ready for it and I feel good about these changes (no matter how many times I whined and worried to everyone else). You were right. It’s all good. 

Supplements Update

We’ve recently added a few more supplements so I thought I would update anyone interested. 🙂 The new ones are for thyroid support and cognition.
To check out my full post on supplements go to: Supplements
Here is our current protocol:
1- Baby ProBiotic
2- Coconut Oil
3- NuTriVene D
4- Omega DHA Fish Oil
5- Longvida Curcumin
6- Liquid Folate
Gingko
Magnesium Flakes- to make oil

We’ve also added essential oils and elderberry for immunity. I’m a school teacher so I have to watch out for germies!

Supplements

There are a lot of opinions about “treating Down syndrome” out there. It’s easy as a concerned parent to get wrapped up in all the therapies, supplements, treatment plans…
I always worry I’m not doing enough for Eli: I didn’t work him out enough, I didn’t get him the proper nutrition, he’s not growing properly, I didn’t practice flash cards today…the list goes on. I know you can relate.
My husband and I do work hard to make sure Eli has everything he needs to be as successful and healthy as possible. For our family, that has included adding vitamins to Eli’s food.

Now don’t confuse me- in no way shape or form do I believe Eli needs to be “cured” or “treated” for anything. Down syndrome is not something he is suffering from. It’s just part of who he is.
Nor do I fall into the group of families who feel that Ds is the best thing to ever happen to their family and they love Ds. I’m in the middle. I love my son and everything that makes him who he is- Down syndrome is a part of that. But I seek to understand how that affects him and how I can help him achieve his full potential.
Through my research it’s clear that the extra chromosome Eli sports does change what we know about the human body- how he processes information, nutrition, how he grows, how his internal organs function. It’s just different.
So it makes sense to me that he would need different nutritional care as well.

There are programs out there that are aimed at a “cure” to Ds. Because every single cell in Eli’s body has the extra 21st chromosome, I fail to see how the “cure” these companies claim to offer is possible.
I’ve read where parents report miraculous changes and gains their child experiences after starting these protocols. It’s tempting to want to try them. But I have a hard time believing some of the claims, and an even more difficult time putting my child on prescription meds like Prozac.
But you know me- I like the more natural approach. So I began to look into how his body processes things differently and what I can do to help him be healthier.
I started taking bits and pieces of what I had found and made them work for our family. What we decided was that vitamins and a clean diet would benefit Eli the best.
How do you get started on something that big?
I don’t want something like this to take over or change our lives. Adding more special instructions or routines can seem overwhelming for anyone- especially with all the extra stuff we already do with Eli.
So I started small. I got onto Ds forums and asked questions, I searched the web, spoke to our pedi, and naturopathic doctor. With all that help we were ready. We started small, with one supplement at only 1/3 the dosage and waited to see how he tolerated it. Then we went from there…

Here is our current protocol:
1- Baby ProBiotic
2- Coconut Oil
3- NuTriVene D
4- Omega DHA Fish Oil
5- Longvida Curcumin
6- Liquid Folate
These are listed in the order that we began them. All of these vitamins were started one at a time with 1/3 the recommended dosage. I mix these into his breakfast every morning. A few of them are spaced out throughout the day to make them more effective, so some of them go into his lunch as well. I do not have any supplements added to his dinner, as I have found he has trouble sleeping afterward.
Please please please consult your child’s doctor before beginning any vitamins or supplemental treatment. This post is not intended to treat, cure or diagnose any illness or disease.

Extra Information:
I have been reading a lot about memory and antioxidents. We plan to add ginkgo and coQ10 to his supplements when we feel ready. We are also going to begin working with a nuerodevelopmentalist to help with cognition and memory. The brain needs to be worked just as much as we work his body in OT and PT 🙂 Busy little boy, huh?
These are two resources that I visit often. My other research has been so spread out that I can’t even recall the exact location of it all, so I apologize. Please look into this further- do your own research and decide if this is something that you want to explore for your family.
Antioxidents
DS Day to Day
Ds Study

Some of the things we have noticed since beginning supplements:
Better growth and more consistent weight gain, reducded puffiness under his eyes, better digestion and consistent bowel movements, better memory, less bloated belly (but lets face it, kid’s got a good milk tank), better sleep at night, generally healthier than pre-supplements.

I’m not going to claim that Eli is suddenly more intelligent than any other child. In fact, I feel like with or without the supplements Eli is right on target with milestones and doing what his peers with Ds are doing as well. Our goal is to make sure Eli is as healthy as he can be and that his brain/body are functioning to the best of their ability. This also means a clean diet- we make all his food, organic (check your labels people!!), avoid sweets and juice, remove plastic when possible, go for non-GMO products…etc.
We have seen some positives in his health as a result of these vitamins and that is the intent.
We only want the best for him, and because of the results we have experienced we plan to continue down this path. I take vitamins, so it only makes sense 🙂

I hope that this post can help someone else who may be curious about beginning supplements or not sure where to begin. If you have any questions, please contact the companies directly (especially NuTriVene- they have GREAT information behind their products, why they are recommended and actual research behind them. They also send FREE samples!!), or feel free to comment here and I will do my best to answer your questions!!