Monday, March 28, 2016

Sigh...not sure where to start

I don't know why I feel compelled to write about this. I mean it's been over a year since I've even touched this "blog". Life with two littles and several part time jobs has kept me busier than I would ever have imagined but lately my mind has been preoccupied way too much by one thing...Nicolette's dang hair (or lack thereof). I REALLY struggle with writing this. On one hand it feels so superficial to worry about. I have friends who have lost children to cancer, or have children fighting cancer or have children with life threatening allergies. I mean this should NOT be a big deal, but it is. It hurts my heart.

A few months ago after making a comment about Nicolette's sloooow growing hair, a friend mentioned the name of a condition to me called Short Anagen Syndrome. I had previously read about Loose Anagen Syndrome which is a little more common in which case children's hair grows sparsely but falls out easily with no pain. You perform a simple pull test and see how many hairs are lost. Nicolette never had any hairs lost so I knew that LAS didn't seem to be her issue.

Short Anagen Syndrome (SAS), however is a much rarer condition in which a child's hair only grows to a short length and then falls out and new hair regrows. The anagen phase (or growth phase) of hair growth is very short, so the hair never gets to a long length. I looked around at photos of other children with the condition and many of them had hair similar to Nicolette's so I of course grew concerned. This condition is so rare that it is difficult to find a pediatrician or pediatric dermatologist who can properly diagnose the condition and from my reading there really is no line of treatment and little to no chance of improvement throughout their lives so I wasn't sure whether or not pushing for a diagnosis was necessary. After a minor (ok, massive) break down at my weekly Bible Study, I suddenly felt some sense of peace and decided to relax and pursue some natural treatments to see if we saw any progress.

I started Nicolette on a multi vitamin with Biotin, a hair serum made with essential oils, a special shampoo and conditioner and daily scalp massages.  I took "before" pictures of her sweet head and hair and have thoroughly enjoyed our sweet time with her laying in my lap while I play with her hair and her head. I felt like we had seen some improvement, even last month we were walking outside and Nicolette was giggling and laughing saying that she could feel the wind her in hair. It was the first time she'd ever had enough hair to feel that sensation and it made my heart happy watching her giggle about it, so proud of her "long hair". Then that all started to change a couple of weeks ago.

A few weeks ago I noticed while combing her hair after her bath that there were several small hairs in her comb. After a week or so I switched from a fine toothed comb to a wide toothed comb and saw less hair but still would see hairs in the comb. Then this morning while making her bed I noticed several little hairs on her pillow case. Something I had never noticed before. I had read about this from several of the LAS mothers. Many of them even buy silk pillow cases for their daughters to help reduce the friction and late night hair loss and breakage (so guess what I ordered from amazon today?).

Throughout the day today, Nicolette spent most of the day sitting in my lap. Poor thing is having a time with this darn Carolina pollen and is struggling with seasonal allergies so has been more clingy than usual (which is secretly fine with me). As I was running my fingers through her hair I noticed that MANY hairs were EASILY falling out with each stroke. I looked at my shirt and there were little hairs of hers all over where her head had been. My pulse started to race and tears began to well up in my eyes. My little girl has so little hair, how in the world could this all be falling out in my very hands?

I called our pediatrician to request bloodwork. There are some nutritional deficiencies that can lead to hair loss or slow or delayed hair growth so I feel like we should at least get a full panel run to ensure that she doesn't have an iron deficiency or a thyroid issue or something else that we're not aware of. We have an appointment on Friday morning for that.

I wanted to give her little head a week long rest from everything - oils, massaging, shampooing, conditioning, combing...but we played outside today and I had to shampoo and condition her hair to rinse that nasty pollen out. Fortunately there were only a few little hairs that came out while combing tonight which helped to ease a little of my anxiety.

Let me say this, I think Nicolette is one of the most beautiful children I have ever seen in my life (with or without hair). And with her sweet little "do" she looks like a preciously, perfect little pixie which matches her sweet personality. But to hear her ask DAILY when her hair will be as long as Rapunzel's, when she can have a ponytail or a bun like mine, etc., it just breaks my heart and makes me sad. Then I hear other mother's of older children who do have one or both of these diagnosed conditions talking about other little girls not wanting to be friends with their daughters because they "look like boys" because of their short hair in kindergarten and 1st grade or making fun of them in dance classes because they can't wear a ponytail or bun or even worse bullying them in middle and early high school it is SO HARD not to go there mentally and start to worry about and fear something that hasn't even happened for us yet.

This could be nothing, her hair could just be slow growing, maybe this weird recent hair loss is no big deal, maybe I'm making a mountain out of a molehill but I will pray for God to know my anxious thoughts about this so that I don't have to rehash them and dwell on them every hour of every day. This issue has occupied so much mental space in my brain these past few months and I need to find a way to let that go.

The Bible tells us over and over again DO NOT WORRY, FEAR NOT. There are over 365 references in the Bible commanding us not to be afraid, anxious or worried. Worry therefore is a sin and one that I am guilty of daily (ok, hourly.....ok, maybe each minute). I promise I'm working on this, God! Meditating on verse after verse to help bring me back to God, to remind me to live in the moment, appreciate the amazing, beautiful life that I have been given and to trust that he loves my sweet girl even more than I do. So God, I give this child to you. You created her and gave her to me and I admit that I have NO control in this situation and just trust the outcome to you in your timing. You have answered my every prayer and I know you will do the same again. Just help me to have the patience, faith and hope for the outcome. Forgive me for my doubt and distrust of you and please free up this mental space so that I can think of and serve others. In Jesus' name, Amen.

Nicolette age 22 months asking for ponytails. 

November 2015
March 19, 2016

Like I said when I started, I'm not exactly sure why I decided to write and share this. Maybe it's because when I wrote and shared about our struggle with infertility that it finally allowed me to let those feelings out and I could then talk about it without crying all the time from trying to hold it in. Maybe it's because even today I have strangers reach out to me letting me know that they've read about our struggles and how it helped them to find answers or to feel less alone. I don't know. But I feel better having spilled it all here.

Verses for me to remember:

"Do not be anxious about anything but in everything by prayer and supplication with thanksgiving let your requests be made know to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus"
Phillipians 4:6-7

"Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these..."
Matthew 6:25 -34

"Cast all your anxieties on him, because he cares for you"
I Peter 5:7

"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble"
Matthew 6:34

"Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him because he cares for you"
I Peter 5:6-7

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid."
John 14:27

"For nothing will be impossible with God"
Luke 1:37

"Cast your burden on the Lord, and he will sustain you..."
Psalm 55:22

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."
Isaiah 41:10

"Let not your hearts be troubled. Believe in God; believe also in me."
John 14:1

"For I know the plans I have for you, declares the Lord, plans to prosper you, not to harm you. Plans to give you hope and a future."
Jeremiah 29:11

"When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid."
Psalm 56:3-4

"May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope."
Romans 15:13

"When the cares of my heart are many, your consolations cheer my soul"
Psalm 94:19

"Now faith is the assurance of things hoped for, the conviction of things not seen"
Hebrews 11:1

"You keep him in perfect peace whose mind is stayed on you, because he trusts in you."
Isaiah 26:3

"He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?"
Romans 8:32

"But if we hope for what we do not see, we wait for it with patience."
Romans 8:25


  1. *HUG* Please do update us with what the doctor says

  2. Thanks so much. I'll certainly post again with an update!