Arfid? 6 yr old no weight or height gain in 1 year

amother

OP ↓

Tue, Sep 17 2024, 9:22 pm

My six year old daughter hasn’t gained any weight or height in one year. She doesn’t eat much and when she does she only likes certain foods. These foods are predictable in texture, the way they’re sliced, the temperature etc. I’ve been asked how her sleep is and it’s fine I think - she occasionally wakes and sleep talks. She’s on an appetite stimulant but it’s just making her agitated and not increasing her consumption much. She is a little “sensory” and sensitive in general but she functions without it affecting her (aside from eating). We are very careful not to put any pressure or emphasis on eating or eating specific things. Mealtimes are relaxed and pleasant - we provide food and kids decide if/ what they want to eat. I feel totally helpless here. We are being followed but a gastroenterologist who did all the testing - celiac, thyroid, CBC, abdominal ultrasound etc and everything is fine BH. I was told to get an Arfid eval but then if she has that it’s long term feeding therapy with no insurance coverage for that treatment. And is there ever improvement with therapy? Can it happen at such a young age? Many of the centers don’t work with kids under age 8 or 12. Any ideas of what I should do for her? Sometimes it’s hard to be a mom and watch kids struggle without being able to help…

amother

Periwinkle

Tue, Sep 17 2024, 9:43 pm

Did she have upper and lower endoscopy? It can be Crohn's, EoE, or something less obvious. It can also be pandas, I know no-one likes to hear that, but it is a possibility, there's growing research on the link between pandas and arfid. It can also be a food sensitivity that wouldn't come up on testing.
Sorry you're dealing with this. It's really tough.

amother

Hosta

Tue, Sep 17 2024, 10:02 pm

amother Periwinkle wrote:

Exactly this. Also non celiac gluten sensitivity.

mha3484

Tue, Sep 17 2024, 10:42 pm

That was me as a kid. I ate very few foods and was never on the growth chart. I think for me it was a response to a bunch of life challenges I had. I started trying more foods in high school when said challenges started easing up and now as an adult ill eat almost anything.

amother

DarkGreen ↓

Tue, Sep 17 2024, 10:55 pm

I have a few threads here about my child with ARFID.
You can search for them. I have put all the information that I have on there.

We used Dr. Miriam Wolosh from Morristown NJ. She is an incredible person and works really well with this.

There's a way you can get insurance to pay for the sessions with her. Advanced Adcocacy helped us with that.
Devorah Levinson from Releif set us up if I remember correctly.

Wishing you lots of hatzlacha and energy for this journey. It is exhausting. 🙈

amother

Feverfew

Wed, Sep 18 2024, 10:50 pm

Op, I wish you lots of hatzlacha on your journey.

I know celiac testing is not very accurate & is worth a trial run ( I have several family members who have obvious celiac symptoms but tested negative).

Also like someone already wrote, a child that eats a little but not what we would consider enough should also be growing some. Zero growth over an entire year for such a young child is pretty extreme.

giftedmom

Wed, Sep 18 2024, 11:29 pm

Definitely see an endocrinologist and get her growth hormone levels checked as well as an MRI.
If she’s getting enough protein her growth shouldn’t be so affected. I have one sibling who lived on 3 foods til the age of 14 and is the tallest in our family.

amother

Bubblegum

Wed, Sep 18 2024, 11:42 pm

amother OP wrote:

Have you ruled out OCD? or ASD? both of these can impact sensitivity and particularity around food.

amother

Fuchsia

Thu, Sep 19 2024, 12:30 am

The growth component is worrying. I ahve a child with ARFID but he grows normally. I would agree that you should go to an endocrinologist.
My son is treated in a feeding center that specializes in children under 9. I don't know if you have something similar near you?

amother

↑ DarkGreen

Thu, Sep 19 2024, 1:24 am

amother OP wrote:

Thank you so much for these helpful ideas. I’ve been researching these options. Thank you so much for taking the time to help me out and guide me. Amen to all your brachos and thanks for the validation that this is challenging.

I also have another child with an ED.

This child is growing an inch every time we finally reach a BMI of 18.

Let's say the goal weight was 105 and we finally finally got there we now have to make the goal 110 because another inch in height means the person has to weigh another few pounds. Rolling Eyes

Super annoying but my point is that I think that a 6 year old not growing not gaining would be something more than ARFID.

I hope you find what you need.

↑ mandr

Thu, Sep 19 2024, 9:45 am

My son's endo actually explained the concept of growing to me. She said that until about age 2, growth is almost exclusively dependent upon the nutrition from food. After that, the growth hormone axis takes over and it doesn't really matter how much they eat. However, if they don't eat enough at this point they become very thin, while still growing taller each year. Because growing is happening regardless of what's consumed. But their BMI will drop if they don't get enough calories.

If you're in the NY area, may I recommend Dr Madeleine Harbison.

amother

Topaz

Thu, Sep 19 2024, 9:57 am

Could be:
Arfid -no personal experience with that.
ASD- mine for years only ate certain foods and has a slow growth pattern. Now my kid eats more at least... maturity, some meds, and also finding a way to convince my kid to try something that "works with the way their brain works".
HGH deficiency, idiopathic short stature... - I have one kid with this. Usually no growth in a year would cause them to test for that, especially if they are in a low percentile. See a pediatric endocrinologist.