Thyroid and Therapy

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We recently began the journey to improve Eli’s thyroid. This was a difficult decision to make because, like supplements, it’s a slippery slope to more supplements, pills to remember, research research research (that I don’t have time for!) and one more thing that makes Eli different.
It also required blood work and a doctor who would support us.
Eli has had his annual labs every year with no glaring issues and concerns. His thyroid at age 2 showed subclinical hypothyroidism but no one we spoke to would treat it. Eli has many symptoms of thyroid problems but we were continually told that it was just Down syndrome and not thyroid.

So we waited and researched what we could.
Eventually I found Dr. P who, upon looking at Eli’s labs, felt we needed more bloodwork and thyroid treatment.
After more waiting and saving money to afford Dr. P and her consultation, we are finally on a good path.
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Eli began Naturthryoid 8 weeks ago. His initial labs were within normal ranges despite presenting many symptoms of hypo. We are striving instead for optimal numbers and already seeing the benefits.

Since beginning treatment, Eli’s attention to detail, his attention span and his processing has all improved.
He’s grown 1/2 and inch and gotten a new tooth. His health has been good and we feel like he has been able to get over illness that he wasn’t able to before (instead of a minor cold turning into a sinus infection every time).

We just had our follow up blood draw last Monday, which was part of my fear. I was worried they would find something wrong, that we would then be forced into looking at more supplements (because while A works well, A works better when combined with B but A and B can’t be taken at the same time and really it’s even better if you add C but B and C can cause a risk for seizures so we need to run MORE labs to check levels…blah blah blah…it gets crazy).
But to my surprise the dosage the doctor recommended is perfect, and we will actually be adding a new med for T3 support. (So Liothyronine in the AM and Naturethroid in the PM).
Even better? This blood draw was by far the best one we have ever had.
Typically they stick Eli in the arm they think is the best, and nothing comes out. They dig around for what feels like forever before giving up. Then we stick him in the other arm which gives blood drop by precious drop and we can never have all the labs we want because he never fills a tube.
This was huge.

So right now, in the moment, I couldn’t be more thrilled with the results we have seen. I wish we could have done it sooner and I would urge all parents to strive for optimal levels and fight or a doctor who will support you.
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On the therapy front, I feel like we are winding down and gearing up all at the same time. Our therapists are preparing us to age out in THREE MONTHS, trying to update new goals, and pushing Eli even harder than before. I don’t know what we will do without them.

We are currently working on self help skills like dressing, and potty training.
Apps we are using:
http://www.pull-ups.com/potty-training/time-to-potty-app-page/1226
https://itunes.apple.com/us/app/potty-time-with-elmo/id525507410?mt=8
https://itunes.apple.com/us/app/potty-training-time/id473203652?mt=8
DVD:
http://store.signingtime.com/potty-time
Potty training accessories-
http://www.amazon.com/3–Toilet-Trainer-Potty-Seat/dp/B000VY1WPC/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1422894463&sr=1-1&keywords=3-in-1+Toilet+Trainer+Potty+Toilet+Seat
Self help-
http://www.amazon.com/dp/B00168CPQM/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=IBHFC55867TIS

We are looking at iPad apps to help with communication.
Apps-
http://www.nikitalk.com/
http://www.assistiveware.com/product/proloquo2go
http://www.speech-ez.com/
http://www.geminii.com
https://itunes.apple.com/us/app/i-hear-ewe-animal-sounds-for/id304093970?mt=8
https://itunes.apple.com/us/app/articulation-station/id467415882?mt=8
https://itunes.apple.com/us/app/smalltalk-phonemes/id384170714?mt=8
DVD-
http://www.amazon.com/dp/B006G18XN8/ref=wl_it_dp_o_pd_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=IKOUPJ72CJBP0
http://www.amazon.com/dp/B000Y1NNH2/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=I1LRF5GW126UR4

Eli has gone down to two PT visits a month and we are working on some of the same skills (clearing stairs and thresholds without sitting down, climbing play equipment independently, and keeping his knee from popping back), but we have also added riding a trike to the list.

In OT we are focused on opening closures, comparing and sorting, and fine motor activities including play doh and theraputty.
http://www.discountrehabsupplies.com/s.nl/it.A/id.2864/.f

SLP is working on following directions and some of the same stuff that OT is working on.
Balance Board- http://www.amazon.com/dp/B000N40SDC/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=I1VQGPD35HCDPY
and more walking for breath support.
We are also working on blowing- so blowing a kazoo, blowing tissues and cotton balls across the table, blowing a pinwheel…he’s recently learned to blow his nose, but only when he wants to 😉

SLP has been the biggest challenge and it feels like the area we have made the biggest strides in and yet made no progress at all…if that makes sense.
Since beginning the Gemiini program, Eli has started to pay attention to our mouths when we speak, began babbling again, he has better lip closure, is copying “fish lips” and doing tongue play. He is making a roaring bear sound, and he’s saying “mmmmm” for “more”.
He has also said “mama” and “dada” a handful of times and is a bit more social around new people (waving, showing people with his fingers how old he is, and generally being more loving and comfortable around others). This is big! It’s not words, it’s not talking. But it’s HUGE in our world.
http://dsdaytoday.blogspot.com/2014/03/treating-apraxia-in-children-with-down.html
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Eli has his first assessment with the district tomorrow, so I am sure I will be updating on how that goes. I’m nervous and excited at the same time.
Happy Monday, friends! 🙂

MTHFR

I’m so conflicted about the MTHFR gene and the potential issues it causes if you have it. Mostly because it’s so common now- more people than you would think are affected. If it’s so common, why does it affect some more than others?
True, there are different mutations (MTHFR), so depending on the mutation will depend on how it affects you. Some combos are considered more harmful than others but most people who have it don’t even know they have it.
No matter which mutation you have, there seem to be many health consequences linked to abnormal MTHFR and poor folate absorption.

I know people who have it and have healthy, typical pregnancies with no issue. I know others who have it and struggle to get and maintain a pregnancy. I am someone who struggled.

I’m also conflicted because there seem to be a lot of connections being made about what affects MTHFR has on the body.
Like the thyroid, it can easily be linked to just about EVERYTHING that’s wrong with you.
The list at Stop the Thyroid Madness is overwhelming. It includes scary things like certain cancers, stroke, heart problems, congenital defects, depression, IBS (irritable bowel syndrome), miscarriages, neural tube defects, migraines, chemical sensitivities, Parkinson’s Disease, and many more illnesses.
Recently, I have even seen it being suggested that it can cause Down syndrome.
As a mother, there is nothing scarier than thinking you could have caused your child harm. So I just need so say this for myself and anyone else who may be worried about it: Down syndrome is absolutely not caused by MTHFR. It’s a random occurrence. There is nothing that could have been done to prevent it. Eli’s Down syndrome is chromosomal and not hereditary. It just happened. And we are thankful every day for Eli.

Its easy to get swept up in fear- or worry that you’re not doing enough. Did I take the right vitamins for long enough? Did I eat right? Was I stress free?
When I look at my family history I see cancer, Parkinson’s, Down syndrome, thyroid issues, asthma, uterine/cervical issues, miscarriage…I mean the list goes on. Does that mean they are all related to MTHFR?

I look at my children and begin to wonder if any of this is related to MTHFR. My first pregnancy was lost due to a neural tube defect. Then Eli came along with his extra chromosome. And most recently, Wyatt was born with a sacral dimple. MTHFR or just random?

Add to that the increased risk of people with Ds developing Alzheimer’s later in life…can these things all really be connected? Does MTHFR cause these issues or increase your risk of having these problems? And if so, how do we approach it?

When I first discovered I had MTHFR, I was told it caused my miscarriage. The science behind it (lack of blood flow and clotting issues as well as improper folate levels for the growing baby) was enough for me- I needed to treat this. I have plenty of friends who couldn’t carry a pregnancy until they treated their MTHFR. And certainly, if you have a vitamin deficiency, you’re going to be healthier if you treat it. So I get that. I treated my MTHFR with b12, b6, l-methylfolate, baby aspirin and prenatals. There’s no doubt in my mind that treatment enabled me to carry Eli and Wyatt to full term.
But I guess my point about all the other conditions linked to MTHFR is that we have so many things linked to so many health issues these days.
We don’t eat food that is good for our bodies. We are exposed to pollutants and poison every day. We put trust in and value man made, chemically altered products.
So is it all MTHFR or is there something more?

On a personal level, I can only say this. What we put into our bodies and what we expose ourselves to is so important. In the face of genetics, I can still work to be as healthy as possible. This means supplements and healthier food choices. It means not beating myself up over MTHFR or thyroid function. It means not blaming these conditions which I couldn’t change, but rather treating as concerns arise. If I know it’s an issue, let’s tackle it and treat it. So do I know that MTHFR caused Wyatt’s dimple? Nope. Do I know that my boys may carry it or have it themselves? Yes. Is there something they can do to be healthier? Yes. So let’s do that instead of worry about what could be or could have been.
Being a mom is hard and scary enough.

Subclinical Hypothyroidism

Just got back from an Endo follow up for Eli. I feel frazzled- I *thought* the appointment was a follow up for PT and OT eval but had to totally switch gears when they handed us new patient endo paperwork. My brain didn’t want to do that. lol
Anyway, I wanted a second opinion on the levels we got from his pedi and was hoping to speak to someone who specialized in children and Down syndrome. No such luck, as I am sure you can imagine.
The endo did confirm that Eli has subclinical hypothyroidism (SCH) but stated that all his symptoms could be linked to anything and it is controversial to treat this in children. She also stated that he was growing fine (according to the DS chart, which we don’t use…) and that because it is a lifelong medication they would rather not give him anything. Even though it is likely he will have hypothyroidism later and be on meds forever anyway. (DS and Thyroid)

Eli’s symptoms: thinner hair, delayed tooth eruption, mottled skin, poor eating, poor growth.

I’ve gotten to the place where I don’t even want to offer Eli any food. It takes us 45 minutes to feed him, he refuses to self feed and he’s loosing weight. I just want to cry, honestly. Right now my awesome husband is feeding him lunch because I just couldn’t do it. Stupid, I know. But it stresses me out that he won’t eat and to be told it’s normal and that he will eat when he is ready is a load of bull. My kid won’t eat. Period.

It would just be nice to be treated fairly instead of just “oh well, he has Down syndrome” or “he’s too little”. Just like the issue with his sleep apnea. No one will treat it or help us help him.
(Granted, now that my kind can actually breathe, I honestly don’t think he even has it, but it would take retesting to find out for sure.)
It’s so frustrating!

I called the Down syndrome clinic to see what the doctor says about SCH and we will go from there. I know our naturopathic doctor will treat this, but we have run out of the funds it will take to see her at the moment. Awesome, huh?

I did some research on my own and haven’t found much supporting our decision to treat SCH- most says children will outgrown it and little of the research represents children with DS. So it’s a grey area.
All I know is that I want the best for my kid and that doctors suck butt. lol Anyone have any feeding tips or thyroid experience?

EDIT: Ok, I’m feeling better lol. Barry got him to eat lunch and I offered him the dinner he refused yesterday at dinner today. He ate it fine with no problems. -_- We are going to try whole milk, pediasure, and some juicing to get him the nutrients he needs. We already add coconut oil and vitamins to his meals, so this isn’t a big change and adds calories. I will also be looking into more work with our OT and ST. Thanks for all your concern! 🙂