My 5 year old son is in medical remission after 18 months of diagnosis! Laith's story..

Yasmine - posted on 10/01/2014 ( 5 moms have responded )

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I would like to share my story with all the moms out there who are battling with JIA.
Laith started a rash and fever, classic symptoms of JIA systemic onset (ie. attacking more than 4 joints), in February 2013. He was hospitalized when the fever didn't subside and carried out every imaginable test until a diagnosis was reached. We live in Dubai, and had flown to Lebanon to get him the best possible medical care in the region. After that he was put on steroids and we were sent back home. The pain, rash and some swelling in his knees and ankles persisted and he was absolutely exhausted. His pain was not managed, his rash was daily and it was heartbreaking. Within three weeks we realized that we needed more specialized care and since there are no Pediatric Rheumatologists in the Middle East, we arranged to have him seen in the London, UK at Great Ormond Street Hospital for Children by the head of the Rheumatology department. The diagnosis was confirmed and his steroids practically doubled and he was placed on oral Methotrexate. His pain was managed well and that was very important but was is sustainable and a cure? As a mom I guess I was in denial until he had a serious flare up 6 months later with pains and inflammations in several joints. I had read that trying a different gluten free diet could be helpful and so I started planning an alternative route. By then he was on a weekly MTHX injection administered by me, and he continued to have pain/inflammation flare ups whenever we reduced steroids. The rash was a daily occurrence (evenings). In January 2014 I changed his diet and went gluten free - a very healthy diet that had no dairy and extremely controlled sugar as well. Within 3-4 days of diet change, his rash stopped appearing. By the time we had our February visit in the UK he had also plateaued on the MTHX dosage so the Doctor increased dosage to 12.5ml. However even after that, his joins were not spared and his wrists and ankles and fingers were all inflamed. In March 2014 he had his worst flare up yet and that triggered me thinking of adding a new supplement to his medication: Turmeric. A very powerful anti-inflammatory, its a natural remedy used in India for many different ailments from Arthritis to bruises and burns. His pains and rash have not come back since then, and all his joins are inflammation free. By July 6 we had also been able to successfully wean him out of his steroids. The Doctor told us that everything we did helped. Between the increased dosage of MTHX and his diet and supplements (Turmeric, Garlic pills and Omega 3), we were able to help control his JIA and now he is in medical remission. This was announced to us in August 2014 and the plan is to continue on this path for another year, if he does not have any flare up until then, we will start reducing his medication (MTHX).
This is a funny disease with such a variety of experiences. But from all the reading that I have done, two things stand out for sure: this is an auto-immune disease and they respond well to a clean diet (gluten free, diary free and sugar free/low); and that Turmeric is a powerful anti inflammatory. My Doctor has also added turmeric on his medication list, as she believes that it is this holistic approach that has helped him.

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Yasmine - posted on 10/01/2014

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Hi Shawnn,

I give him a herbal supplement gel pill/day. It is tasteless and my son can take large pills with water.

One soft gel contains;
- Turmeric (rhizome) hydroethanolic extract (min.22mg curcuminoids) 320mg
- Turmeric (rhizome) supercritical extract 80mg

Good luck!

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♫ Shawnn ♪♫♫ - posted on 10/06/2014

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2015

Yasmine, LOL...he's finally agreeing to dietary testing as well, since he finally found a correlation between his not feeling well quite a bit of the time and what he eats. Men can be so stubborn!

Thanks for the update and advice. I'm going to look for a Turmeric supplement to keep on hand (and see if I can keep him working the dietary angle)

Yasmine - posted on 10/06/2014

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Hello,
I usually buy the supplements from a health/nuturion store and I would imagine a place like Wholefoods would have them too. A big Pharmacy with a Health section could work too. Try to buy an organic brand.
And for your husband, it could possibly be useful to consider eliminating certain foods from his diet like gluten, dairy and sugar for a while to help his pain along with the turmeric.
Good luck!

♫ Shawnn ♪♫♫ - posted on 10/02/2014

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Yasmine,

I'm sorry to be so bothersome, but where do you get your supplements? Are they at the pharmacy/chemist, or can they be purchased somewhere like a supermarket/grocery?

I really think that it could help my husband, who cannot take chemical anti-inflammatories, but really needs a supplement for his regular pain medication.

♫ Shawnn ♪♫♫ - posted on 10/01/2014

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Awesome!

I'm interested in the Tumeric angle! How is it administered? Do you just use it as a regular spice, or does he ingest a specific amount?

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