Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group 7 year old Maddie..help! I need support/advice

Well I am back again. Maddie is having flare ups again despite being on a gluten free diet, naproxn, and naturopathic meds. It is of course her back, but now pain in the buttocks and groin (not good) and the knee as well. I am calling a nutritionist on Mon. to help guide me through the NSD. I guess I am just so frustrated because I am realizing it is rare for this disease to start so young (Maddie started at 2 and has progressed and is now only 7). There is not a huge pool of kids for research to say that meds like Enbrel are safe or even the NSD. That is my biggest frustration! It is so scary as a parent to have to make these choices for your child when there is not alot of research to back the success for such a young age group on certain meds or diets. I just needed to vent. Thanks.
Ella
Maddie's mom

Hi Ella,

I'm so sorry sweet Maddie is dealing with this beast. I'm have no formal education in Nutrition but my research has taught me that our body will convert 58% of our protein and 10% of our fat intake into carbohydrates. That is how people "survive" without eating any carbs.

Here is the article I was reading written by Dr. Beth Gruber.

article

I am so glad you are consulting a nutritionist. She is so little. I am comfortable subjecting my 36 year old self to the NSD, but wow, she is so little.

Has she been eating great amounts of anything new or different that is in season now? I think the tomatoes are effecting me, but I still keep eating fresh salsa. Old habits die hard! lol.

Take care and hugs to you both.
-Donette

Calling in a nutritionist to help out is a great idea!

For many years children have been put on very-low-carb diets to treat difficult cases of epilepsy. So, there should be plenty of medical studies and papers that your nutritionist will be able to draw on in coming up with Maddie's diet, which can actually be less strict than the ketogenic diet for epilepsy.

just wanted to send gentle hugs

and good thoughts

to you and maddie

I'm so sorry to hear you and your daughter are going through this. Have you read much into LDN, children take it as a very low dose with a transdermal cream. It's has very little side effects and seems much lower risk than other meds. It improved my husbands inflammation levels by about 30%. It's just so unfair that children get sick, I will keep you in my thoughts. Emily

I have no advice, just hugs and prayers for all of you.

Hi Ella, just wanted to let you know that you and Maddie continue to be in my thoughts and prayers. I have no advice for you about the NSD as I am one that it has no effect on me as far as the activity of my AS. My heart aches for you, how frustrating it must be. Is Maddie's Rheumy aware that her AS is active again? Perhaps Molly here can find you some research, she is our queen of research, finding great articles when we need them.
Hugs to you both
Cindy

In some ways the NSD is easier once you have experience of the GF diet, though it does depend a bit on how much you have relied on GF substitutes for regular food (like GF bread, cakes, biscuits, etc). I am GF, and do Low starch, rather than no starch. I also never really relied on gluten free breads, etc so that made it much easier. I'd suggest maybe trying low starch first, and keeping in rice as the only grain food. Definitely makes it easier to start with, and generally rice seems to not behave in quite the same way in your body as other grains. Gradually find ways of replacing the rice with other food as you get further into it. I found a blog called something like "the lighter side of low-carb" and that has given me some really good ideas, including how to prepare things like cauliflower as a rice or potato substitute, and "oopsie rolls" made from egg and cream cheese as a bread substitute.

In terms of safety of this kind of diet for children, I think it is probably a bit more of an issue than for adults. Slow release carbohydrate (from grains, etc) can be really important for keeping up a steady supply of energy during the day, and if you aren't getting this, then you do have to be so much more careful about not just what you eat, but when. Also I wonder if the slight overemphasis of protein (and the general imbalance in terms of the usually recommended food triangle) that often comes with NSD might not work so well with children's developing bodies. Ideally you want to speak to a good nutritionist, though I would think that most of them would be trained to not want a child to go on this kind of diet.

If you do decide to change her diet more, then start slow - cuting out the highly processed starches first. You might find that this is enough to make a difference.

I am so sad to hear that Maddie is having a flareup. It's just not fair that kids have to deal with this kind of pain. Does she have a script for any kind of pain med. Perhaps 1/2 of an Ultram? I just can bear to see a child in pain.
Donna

Hi, Ella:

I am sorry, but gluten-free is just not enough for AS and You are doing the right thing to research NSD but a nutritionist will probably not recommend such a radical departure from "normal" diets.

The thing is, starchy foods contain very few albeit some nutrients that are very easily replaced through supplementation.

And in a child so young as Maddie, this difficult regimen might not be so practical, but I am certain that because of my personal experiences, I would stay well away from NSAIDs and certainly try a biologic drug for symptom relief.

Perhaps the Road Back Foundation has references to physicians able to come up with some unique protocol that would address the root-cause of AS.

Until then, I am loathe to suggest what has worked so well for me (fasting especially), but borage seed oil, fresh wheatgrass juice, and spicy ginger tea can work wonders.

I wish You and Maddie all the Best,
John