A long overdue update on our children...
I am so overjoyed! It has been a long difficult year, but all of our hard work has paid off for our oldest, age 5. He is currently symptom-free!
We started right away with a gluten-free (GF), dairy-free (DF) and sugar-free (SF) diet. Well, we kind of suck at the sugar part, but we are mostly sugar-free. We did it a little too fast, however, and his system couldn't handle it. He has struggled with stomach pain from a young age and it continued through much of this past year, since our diagnosis. He even had a month of intermittent vomiting - only at night - over the summer, which resulted in an ER visit after he began vomiting blood due to a tear in his throat. To this day, we do not know what caused that.
A month or two into treatment, we were referred to an amazing woman who practices Chinese Medicine. She worked wonders for our son. It took time, but we were patient. She treated him with acupressure and herbal teas and made several diet recommendations, like no bananas or cold foods. In addition, we added in probiotics. He'd had issues with dairy for some time and we learned wheat had also become an issue, likely causing his chronic stomach pain. Slowly but surely, we saw a difference. He hasn't complained of stomach pain in a couple of months now.
Another big symptom he dealt with was joint pain. "All my bumpy parts hurt, Mommy," he would say. It would break my heart. From the moment he could communicate, he would talk about pain. My 5-year old had the joint pain of an 80-year old. "It's just growing pains," his pediatrician would say. I suspected otherwise. It would be another two years before I was diagnosed and we put the puzzle together.
We started with a short course of antibiotics, but decided to switch to herbal after ART testing and some intestinal issues. He used A-L and A-Bab for treating Lyme and Babesia. We continued probiotics, whole food vitamins, multi-vitamin, Vit D/Calcium for bone growth since we don't do dairy and Mila for nutrients and to mop up and take away the toxins. The joint pain persisted, worsening as symptoms do with Lyme treatment. I was beside myself. Finally, our Chinese Medicine doctor recommended an herbal treatment she had used on children in the past to help with inflammation. We started with a low dose, but it didn't touch his pain. So, she increased it to a more potent dosage. But, we only started with one that covered his upper body. One day, he mentioned his knees and ankles hurt. I inquired about his shoulders and elbows. He thought about it and said: "No, they feel fine." Eureka! On our next visit she gave us the higher dosage of the herb specifically designed for lower body joint pain. After a couple of months, we took him off of the herbs entirely and have not had a recurrence of joint pain since...even on days where he is a busy 5-year old bouncing off the walls.
One of the other things we learned from ART Testing was that our family suffered from mold toxicity. As a matter of fact, it was a bigger issue for us than Lyme. I can look back now and know why this is. A home we purchased just before his first birthday. We lived there for 3 1/2 years and we all got very sick there. This is also the home we brought our daughter home to the day after she was born. Removing ourselves from that sick building surely also played a part in our son's healing. But, if you know anything about mold, you know you can get even sicker after you leave because you become sensitive to other things, like chemicals. You also get much sicker much quicker any time you are exposed to mold. So, we are currently educating ourselves on mold. I'm learning there are many other places we may have been infected: workplace, car, homes of family and friends and so on.
Our daughter is still very ill, but in a different way. She is healthiest on antibiotics. Since she was born, she has had one illness after another. She had a horrible rash all over her body from about 3-6 months of her life. She has struggled to gain weight and only just crossed 20lbs. Her 2nd birthday is at the end of this month. She fought chronic ear infections for a year before getting tubes in her ears. Even then, every time she'd go off antibiotics, a week later she would start showing symptoms of illness. She has barely slept through the night in her almost-2 years, except when on antibiotics. She eats better and gains weight when on antibiotics. She is happy and more communicative on antibiotics. She naps better on antibiotics. Off of antibiotics, she wakes up 2-3 times per night, sometimes with what others would call night terrors...but what I believe is pain. Now that she is older she will even say: "Boo-boo hurt me." She stops eating well, sometimes skipping two meals in a row. She drinks less. She is highly irritable and in recent months has begun screaming in pain in her car seat. We are heartbroken and frustrated to watch her go through this...and more motivated than ever to find out what is happening.
Recently, after a bout of strep, we visited a neurologist, recommended by her pediatrician. "I'm perplexed," he said. "Every symptom you are here to see me about has gone away with antibiotics. It seems to me like there is some underlying infection." This is...exactly. what. I. have. been. saying...for over a year now. Today we visited our local pediatrician, who is not a Lyme-Literate M.D. (LLMD), but is aware of Lyme and is very supportive. I finally feel like we are on the same page. They are testing her for many things...PANDAS/PANS (strep-induced; causes tics and OCD; often found in Lyme kids and sometimes parents), mycoplasma pneumonia, IgG/IgM/IgA and more. They are also checking her Lyme titers again and her white blood count as it was low in previous draws.
We are elated that our son is healing and can enjoy his childhood as every child should...free of pain and a strict med schedule. He'll have to endure a stricter diet than most, but it is for his own good and hopefully he will see it that way too...if not today, someday. We are committed to keeping him well, so that he can keep the edge on Lyme, co-infections, mold and anything else life throws his way.
We are sad that our daughter has suffered so much in her life already, but we are committed to changing that. I hope to have a more definitive diagnosis on what the underlying infection is by the end of the summer and a healthier, happy child by the end of the year.
We have endured a lot and I still have a long way to go in my own treatment, but we are so grateful for two strong, inspiring, amazing kids! And I am grateful for a loving, supportive husband. We still have quite a journey ahead of us, but we are determined to win it. We've downsized so that treating four people does not bury us financially. I continue to research the best options for care for our family, despite debilitating symptoms...like fatigue, muscle fatigue, brain fog and a range of symptoms too long to list here...so that we make the right choices, especially for our children. Thank you to all who have supported us on this journey. Sometimes we feel like we are pinned to the ropes, but we commit to keep bouncing back again and again. The fight is far from over, but we are taking it one round at a time.