When your child displays Autoimmune symptoms

So this topic is one I hold close to my heart.  At age 2 1/2 we took our daughter off gluten to see if it would help with her bowel withholding.  Note that 7 years ago I was not gluten free, and I didn’t have much understanding as to what it was, or why we should eliminate it from her diet.   What’s bowel withholding?  In short, sometimes Ash would hold in her poop for upwards of a week, and then when she could no longer hold it she would scream bloody murder, it was an extremely painful experience until the next time.  I would worry that a neighbor would call the police – it hurt her that badly and she screamed that loudly.

So back to gluten removal – I took her off breads and crackers and all the things little kids love.  I learned quickly how to make gluten free things and buy pre-made gluten free items.  Again, I didn’t realize that the sugars, corn, rice, etc. used in gluten free products was bad back then.

Ash did much better, and between the gluten free living, and my making up bathroom songs like “Pooping is fun,”  ” I love to poop,” and Bye Bye Turds,” she was able to get to every other day bowel movements.  A huge improvement, and it helped us avoid all the invasive, terrifying testing her Dr wanted to do.  I was pleased with the progress, and she was no longer scared to poop.

Personally, I went back and forth to gluten free and gluten full – and when I went 100% Paleo, Ash was 5.  I finally understood nutrition and  I worked tirelessly to make foods that she enjoyed in a healthier version.  Every birthday party she attended I sent her with paleo cake, and paleo pizza (or whatever food the other kids were eating).  Seriously, I did.  When her father and I divorced, she ate healthy with me and crappy with him.  I could always tell when she had gluten because she’d get pink circles under her eyes, and cough and wheeze all night and have IBS.  Her clothes would fit on Friday when she went to her dads, and when she came home Sunday, she couldn’t button her pants.  (keep in mind, she’s 5 at this point).  Finally through a court order he had to keep her gluten free, and to the best of his knowledge he did, not realizing soy sauce, chicken broth and other basic items usually have wheat in them.  So the struggle continued.

When Ash was in 2nd grade she developed cold uticaria – meaning if she got too cold she’d would be covered in hives.  She was in the nurses office 3-4 times a week during school.  It was AWFUL and no one could tell me what was happening.  Kaiser did a blood panel and said she was fine.  Obviously she was not.  I pleaded with her doctor to do something, and he said to try taking dairy out of her diet.  We did, and amazingly enough, she started doing really well.  So my 7 year old is gluten and dairy intolerant, we can handle this.  But WHY is my child having such issues?  And why are the hives not completely gone?

Ash is now 9 1/2.  Her health is a battle.  She has all the signs of hypoglycemia, her weight is constantly fluctuating, no matter how much she sleeps she’s fatigued, her hives came back this summer and her mood is all over the place too.  She reminds me of me when I was diagnosed with a thyroid issue.   The need to get a hold on whatever is going on before she hits puberty is crucial, and I find that her health is the #1 cause of stress in my life.  I research, and spend hours cooking for her, removing toxins from her life, keeping her childhood as normal as can be.

So today, I emailed my NP and asked if we should do a blood draw and check her thyroid and other key markers to look for autoimmune disease, namely thyroid.  And then I sent Kat a text and I told her that I just emailed my NP and asked what we should test Ash for – Thyroid, fasting glucose, etc. and that I felt Bananas about it.  I was reading what I was writing and felt like an idiot – and I KNOW about all these health issues…and I STILL felt this way.  And Kat text me back and it was this moment of clarity….see the text below:

This text exchange is a reminder that

1. We need to be proactive and work with NPs when MDs don’t get us answers.  Find the WHY – no band aids!

2.  Even thought we LIVE with Autoimmune diseases and KNOW what we’re feeling and suffering through, we sometimes feel crazy saying it out loud – because our illness is sometimes less visible, and not everyone is sympathetic or even believing what you are saying.

3.  We can’t let fear keep us from getting answers, and finding out what’s happening – the ostrich head in the sand wont help your child.

4.  We need to respect the fact that we know our children better than anyone, and truly are the only ones that can make a difference for them.

5.  Catching issues sooner than later is best – stop things before a bigger problem emerges

The crappy Microbiome I was born with, was certainly passed on to my daughter, and I’ll do all I can to help restore better gut health to her and prevent any larger issues from arising.  Talking about children and their health issues is never fun, or easy, but in this case I felt it was necessary.  I hope this message from the heart helps.

 

 

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