On June 24th we took Lilly in to see Dr. Waseem, he went over the results that he had in from the biopsy so far (more to come in over the next 2 weeks).
So far everything came back normal, the lymph nodes are inflamed and quiet large, but there is nothing in the test results to show an infection, virus, or cancer... Nothing.. No answers at all!
All the doctors can tell us is she has high ANA levels (high inflammation in her body) that indicates to an Auto Immune Disorder, this is causing her lymph nodes to become inflamed and enlarged, chronic illness and her leg and stomach pains are most likely from the high inflammation as well.
She will continue to have blood tests done every 4 months for 1 year to keep an eye on her ANA levels and make sure all her organs are functioning as normal. Then after a year she will have blood test every 6 months to keep an eye on her.
They took blood on this last visit with Dr. Waseem to check her current ANA levels and also see if she might have crohn's, colitis or celiac disease. If this comes back positive she will see a GI specialist and have further testing done.
She also has a neurologist appointment in July, to test her muscles.
So at this point we are just to continue with physical therapy which has been helping with Lilly's leg pain and strength. We are to keep monitoring Lilly's temp and symptoms, her good days and bad and report any worsening or new issues.
The good thing that has happened since we started to see Dr. Waseem, we were made aware that Lilly's condition caused her to get sick often because when exposed to illness she is unable to fight it off. So we took Lilly out of pre-school, keep her away from anyone sick and try to keep her germ free. Because of this Lilly has not been sick as much as she was in the past. She has not had to be on antibiotics for a few months. In the past she was in the doctors 2 times a month sick with something. I don't know what this means for us in the future... Logan goes back to public school in September and will be exposed and can bring home germs (need to decontamination until in our entry way, lol) and Kindergarten is just a few years away.. I guess we will find out when we get closer to that time.
Other things we are doing naturally from home to help, Our family went Organic Vegan and that is going great, with the help of my friend, neighbor and fellow vegan Stevie.. I am learning how best to feed our family. Also our long time friend Zach who is Raw Vegan has provided us with advice, tinctures and has guided us towards food that will help! So far none of this has reduced her inflammation levels yet, but we can only hope that putting in the best foods into her body will help and we will wait and see, sometimes it takes time.
We are clean freaks and make sure that the house is a clean as possible to prevent molds and bacterial growth, I make our own cleaners, we do not allow chemicals in the house only all natural home made.
I have made contact with a mold specialist and waiting to hear back from them about doing an inspection of our home to see if there is any hidden molds in the house that can be causing this, it's $500 for the inspection and testing, but if our apartment is making her sick it's worth spending the money.
Thanks to all of you, my friends, this blog, Facebook page and a story about Lilly published on mommy page, we have been contacted by 5 family's dealing with almost exactly as what Lilly is going through, none of them have answers either. One woman named Steph who was introduced to me by a mutual friend has been dealing with this for 2 years with her daughter Hayden. It is great to speak to these other family's, comparing notes and talking about sharing information and results from our doctors to see if there is something similar, maybe sharing info will help figure out what these kids have in common and why they are all sick.
My husband and I are not giving up on getting Lilly better, we will continue to look for answers!
Thank you all for your kind words, support and the donations we received helping to cover our expenses!
Please keep following as I will keep updating!
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