The last month has been a challenging one. The past 18 months have been challenging, but I found it hard to stay positive over the last month. However, we have had some positive signs that have been just enough to keep me going.
Because circumstances have consistently worsened for all of the last 18 months, it has caused John and I to continue looking for a further diagnosis. Meaning, does A have something more than only PANDAS? OMG, that sentence sounds so tame. PANDAS alone is enough to flatten one family. How could you add something else on top of it and expect to survive. But, because nothing we did seemed to make any difference for A, we continued to look for an additional diagnosis. It seemed that every other family was able to see some relief from the remedies we were trying and any relief we saw was minimal and short lived.
I feel like more pieces of the puzzle came together over this last month. But, boy was it challenging! I want to account it here for anyone else who might be able to benefit from our story.
7 days before February’s IVIG, A needed a 5 day dose of steroids because her symptoms flared. Right after the steroids ended we did IVIG. Within 4 days of that IVIG treatment her symptoms returned with a vengeance and she needed steroids AGAIN! I am not a doctor but I am starting to get familiar with steroids. A was on steroids 16 out of 28 days which tells me she has a chronic inflammation problem. I don’t really know what that means, but how would one solve chronic inflammation…?
There is another mom at ballet who has an autoimmune disease herself and is familiar with A’s situation. When I told her about the steroids she asked me if I had tried the Anti-Inflammatory diet. She said it was a diet of foods that would reduce inflammation in the body. It sounded very simple to me since it is just food. I came home that day and researched it and found that there is quite a bit of information on the anti-inflammatory diet. It is different than the Gluten free/Dairy Free diet but not all that much. It’s a bit easier than the GFDF diet as far as I can tell. Also, the literature that I have read so far said that a person could see results in as little as 7 days. All the foods are ones that A already loves but are just tweaked a bit.
We started A on the diet right away. Also, while reading about this diet, I came across a supplement that has natural anti-inflammatory properties to it. It is turmeric or curcumin. We also started giving this and more Essential Fatty Acids to A as well. We are definitely still learning but the past 10 days have been very good.
If it weren’t for what happened on Saturday, I would chalk this up to just a plain old “our time for some good luck” and nothing more. But, on Saturday, everything went crazy. All of A’s symptoms returned and then C showed signs of strep!!! We ran a strep test on C and she was indeed positive for strep! John and I were scared to pieces. We felt like we had finally had a glimpse of a decent few days and we were terrified that they would be snatched away again.
We immediately gave both girls a dose of Amoxicillin and then gave A her dose of Curcumin. And we were shocked that on Sunday, A was fine again and has been fine since.
Since it has only been 10 days, I’m still not a believer that we have found our needle in the haystack, but I do think that we may be on to something with the curcumin.