Thyroid Tune-Up

I am thinking it is time for a thyroid tune-up for me. My start to the new year was energetic, but lately I am like a wind-up toy that is almost wound down! I could take a nap at almost any time of the day with no problem.

I have thyroid disease and have known it and been on medication for it for about 9 years. The years that I was undiagnosed were so frustrating. I felt like a really bad mother because many days (which developed into years) I could not hold my head up, much less be a fun and energetic mom. When I look back I want to cry for those lost years. But, thanks to a wreck where we were rear-ended (!), a doctor felt of my neck for whiplash and discovered the swollen thyroid.

Having a doctor to palpate the thyroid, not just go by blood work numbers is KEY. I had had so many “normal” blood workups. Medication made for a slow but steady recovery, and I have enjoyed lots of good health since. It makes me sad for the thousands who are undiagnosed, though. And sad for the years I lost.

From emedicinehealth.com:

Symptoms of hypothyroidism in adults include:

Early symptoms

Easy fatigue, exhaustion

• Poor tolerance to cold temperatures
• Carpal tunnel syndrome (pain at the wrists and numbness of the hands)

Later symptoms

• Poor appetite
• Weight gain
• Dry skin
• Hair loss
• Intellectual ability worsens
• Deeper, hoarse voice
• Puffiness around the eyes
• Depression
• Irregular menstrual periods or lack of menstrual periods

If you or someone you know is struggling with undiagnosed “feeling bad”, don’t give up! Keep seeking the solution. Perhaps you need a different doctor or someone to go with you who will be persistent.

Stress can contribute to the destruction of the thyroid. Learn how to manage your stress and delegate. Raising a child with special needs can be stressful!

What’s your favorite stress buster?

"Hello, Poison Control?"

"Yes, it's me. I know that the last time we spoke was when my husband accidentally mistook the anti-fungal bottle for the ear drop bottle and put anti-fungal medicine in my son's ears. But this time I am calling because my son did not understand my directions for the 2+ ounces of Listerine mouthwash I put on his bathroom counter. He sorta forgot that he has gargled before, and he drank the Listerine for his sore throat. . . . . Active ingredients? Um, let's see . . . Methyl salicylate, eucalyptus, etc. What about alcohol? It has plenty of that . . . Ok, don't make him throw up, but keep him up another hour because that salicylate word is a derivative for aspirin that can upset his stomach? Right, no, we don't want him to throw up and aspirate in his sleep. Thank you. OK, you'll check on him in an hour. Thanks again."

Heart pounding wildly, I made this call last night. I could barely concentrate I was so worried. But today, he is perfectly fine. I forget to observe things and follow through on stuff that he is new to or hasn't done in awhile. I can't believe this happened, but it is a good reminder to be more diligent with my follow through. I take a lot for granted. Especially the following of directions.

Last night there were no laughs, but now I am able to chuckle a little and remember a friend from high school who did this intentionally. We were with the Spanish Club in Mexico City. We had been warned repeatedly not to eat food from street vendors. My hungry friend could not resist one day and was admonished by the rest of us all the way back to the hotel. Later, he reported he drank part of a bottle of mouthwash as a precaution. Why? "It says it kills germs."

Hopefully, all the cooties are out of his stomach forever and my son's as well. Whew!!

New Night Gear

Awhile back, I referenced a variety of appointments that we were going to, and they all were close to one another. It seemed like that was all we did – go to appointments. N has been remarkably healthy, considering he has Down syndrome. His main area of concern has been his stomach, which I have mentioned. (He has a long history of reflux and was on 4 different meds as a one year old to avoid surgery for it. He only takes one thing as needed now.) I know that many of you go to appointments far more than we do, so I was thinking of you lately!

We did the endocrinologist (remember that annual thyroid tests at the pediatrician may not be giving the true picture!), 3 orthodontists and 2 oral surgeons, plus the sleep study neurologist (and first sleep study) all in about two and a half weeks. Strangely, the permanent ankylosed molar (unrelated to Down syndrome), is what is causing the most confusion. The one orthodontist at Children’s Hospital hemmed and hawed for about 45 minutes about what to do. He even left the room twice. (Was he going to look stuff up on the internet??) When I threw a suggestion into the ring for consideration, he immediately said, “Yes, that is what we’ll do,” and began writing a treatment plan. Now that's a scary thought! He’s not the one we are going with, but braces should be on in about two more weeks!

Because he does have significant sleep apnea, the poor guy went for his second sleep study to measure what his air pressure needs to be with the CPAP machine. Thankfully, his sweet dad was up for this again. More electrodes, more attachments, then the Darth Vader mask. The first line of the report reads: “We realize you had great difficulty getting to sleep in a new place with the mask on.” Understatement, I am sure! We went a few days ago for training in operating his very own CPAP, and he is learning to wear it. (I can NOT imagine!!)

He is dutiful and compliant, but I feel sorry for him. Someone said it is like getting used to new glasses—once you see the difference it makes, you will want to wear it. I don’t know . . . Could you sleep in this??

Veins and CPR

Today N experienced more of the mysterious stomach pain (which fades as the day progresses). Is this anxiety? We are also between two other medical issues—oral surgery for an anklyosed molar (plus various case scenarios for implant and orthodontia, totally unrelated to Down syndrome) and the sleep study coming up very soon. All this individually makes me concerned , but it is all happening simultaneously in my head today. After the oral surgeon consult earlier, we went shoe shopping (no, for him!) and got some pumpkin yogurt.

On the way home from all our errands, N said, “I think my muscles are getting bigger.” Since his swimming hiatus, he has been concerned about a decline in his physique. “You know, Tim has this big vein that pops out of his muscle when he shakes my hand. I wish I had one.” (Tim is his beloved youth pastor.) “Mom, do you think my muscle is getting bigger?” “Hmm, I dunno. Maybe,” I answered. Then he said, “Well, I think . . . . . I do see . . . . you know, . . . . a vein appearing . . . .” It was hard to contain myself and I cracked up, which really puzzled my poor fellow.

This was after he explained to me while we were in the exam room that he thought it would be cool to be a lifeguard. He said he was sure he could pull anyone out of the water who needed help, but he would only be able to do CPR on the girls -- not the guys. He clearly had thought this out. I never know what’s coming next! These moments are so funny to me and keep me from getting too wrapped up in the other stuff.

Day 28 -- Sleep Study

When N was in the fourth grade, it was recommended that he get a sleep study. He went through the whole thing of having electrodes glued to his head and trying to get to sleep in a strange place. Tough night for him and Dad (thank you, sugar), but they got through it. I remember I was out of town when I got the results via a call on my cell phone. The nurse sounded alarmed at the lack of oxygen he received during several episodes of . . . . non-breathing. (I forgot the medical word for that.) She also told me the number of times he stopped breathing which was very scary. It appeared that there was an immediate need for a CPAP machine and an ENT referral.

He got his tonsillectomy for Christmas that year (arrrghhh) and I thought that would be the end of that. But lately my poor guy seems less than energetic. We have had another sleep study in the works for months now – reams of paperwork turned in, etc. I finally called yesterday to discover that they cannot find the paperwork that took way too long to fill out. The kind nurse offered to ask me the vital questions over the phone. (I could hear her flipping pages to find what to do in case of dealing with mom with quivery voice.) Yay Frances! I love her.

But the best part of this story is that while she was filling out the paperwork, it came up that my son has Down syndrome. I could hear a smile in her voice as she said, “My little brother has Down syndrome. He is the best thing that ever happened to our family.” So cool.

Day 21 -- Myth Buster

In this challenge to blog for 31 days straight to recognize Down syndrome, I would like to address a myth about people with Down syndrome. I remember when my son was tiny and his tongue seemed way too long and too large and it poked out of his mouth. The more he got the feeding thing down, the more it seemed to retract. Hmm.

Many years later, we were speaking with his pediatric dentist, who was very good at what he did. He was commenting on the things in N’s mouth that were similar to and different from those of his other patients with Down syndrome. Then, he mentioned the size of the mouth. He said it is often a challenge to work on patients who have Down syndrome because their mouths tend to be so tiny. He also informed me that this is why the tongue often protrudes.

Well. Did you think, as I did, that it was because the tongue was too large for the mouth? Au contraire! The oral cavity is too small for the tongue. How about that? It is also common for patients with Down syndrome to have more ear infections. Likewise, this can often be because the Eustachian tube is so tiny that any fluid that gets in has nowhere to go. The ear canals are small, too.

There is our little lesson. Today, there seems to be so much therapy early on that feeding, OT, and speech work can teach the (normal size) tongue to retract. Considering that the tongue may also be affected by low muscle tone, that is an admirable feat—to learn to stay put in a very small space!

All's Well That End(oscopy)s Well

After a routine checkup with the GI doc a few months ago, he said he needed to have a look around. As in, put N.,my Gift, under and stick a tube with a camera on it down his throat. Oh, I said. Yes, that was his “gut feeling”, and what was mine? (Since he did not seem the type to be into puns, I did not chuckle or point it out. Do all GI docs express “gut feelings”?) More evidence of our different senses of humor to follow.

Since the unexplained stomach pain that comes and goes has become less frequent, I was hoping this would not be necessary. The doctor was concerned, though, that some pain had become normal and acceptable to N. The doctor thought that N. was minimizing it, while it could be causing him some harm, plus, he would like to take a few biopsies. So I consented. Because there are so many doctors in the clinic, I figured that some may do the testing in the hospital, while some only do clinic visits. Also, because I have been surprised before, I asked this doctor as he was leaving if he would be the one to do the procedure. He burst out laughing and could barely get his words out. What he said before he left the room was, “Well, I sure don’t want YOU to do it!!” – and he was gone without waiting for my reply!

The stomach and reflux issues have been his areas of struggle since birth. Even so, I am grateful for the excellent medical treatment he has received all of his life. I remember when “failure to thrive” was circled on his sheet at the pediatric gastroenterologist’s office, and I felt like it said “failure to feed your baby, Mom”. We’ve come a long way since then; he routinely puts away massive, teenager amounts of food (and somehow this makes me feel better about my nurturing abilities). Thankfully, he has surpassed me in height and does not seem like he is failing to thrive at all! Whew. Thank God.

So, we are glad to have that procedure over and done with. More glad to have the biopsy report back and for the Dr. to call and tell me that “everything looks pretty good on the cellular level.” ? I had to have him repeat that, as in, ”NORMAL results, ma’am”. If the whole introductory phase of our conversation had not been so long, and if I had not broken out in a sweat when I heard his voice, and if my heart had not been beating so fast, I probably would have gotten it the first time. I guess these professionals have no way of knowing that we have a nagging until we hear from them, and when we do, we want them to get right to it and not beat around the bush for a few minutes! I was about to scream, JUST TELL ME, when he finally did. I guess you gathered that. : )

So now we keep a food diary to see if we can find what is plaguing him from time to time.
Meanwhile, it is my “gut feeling” that it is good it is over and that I was not the one to do the procedure.