Thursday, June 7, 2012

Congenital Lyme Update: Happy News, Sad News and a Commitment

A long overdue update on our children...

Happy News
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.

Sad News
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.


Our Commitment
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.

14 comments:

  1. I was diagnosed a few weeks ago, but I know I have had it most of my life. My daughter, who is 2, had blood work done a few months back, and they are wanting to send her to a pediatric rheumatologist. I know she has Lyme, but I can't bring myself to take her to the doctor and hold her down again for them to take more blood. She has had blood drawn twice and an IV put in her and I have had to hold her down for all of it. She hates the word doctor, and every time we get near a nurse or doc she clenches to me tight. How have you dealt with them taking blood with your little one? Mine complains of pain constantly, and that was why I took her to have blood work done to begin with, but that was before I was diagnosed (though I knew before the doctors did, I just didn't put the pieces together until they diagnosed me). I don't want to have to hold her down again for more blood. That is the only reason I haven't taken her.

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    1. Krista,

      I am so sorry you are going through this. My heart breaks for you and your daughter. I was right where you are a little over a year ago. I was HEARTBROKEN for my children. But, I have come a long way since then. My son too was in pain a lot...all of his joints. Now, he never complains of it. I know it is hard right now, but think of it this way... you know what is causing her pain and you know there is a treatment that can help! We had our doctor prescribe a numbing cream that worked WONDERS for our son who also had to give a lot of blood. You put it on an hour before and cover it with plastic wrap. You take it off when you sit down to do the blood draw and he didn't feel a thing! I also think the person who draws it makes a huge difference. Do you have a children's hospital you can take her too? My 2 year old has had a lot of draws lately and I pay a little more to take her to our local kid's hospital so that she feels more comfortable and is around people who are used to working with kids. My only warning is most Rheumatologists aren't on board with the chronic Lyme diagnosis, especially congenital chronic Lyme. If you are located on the East coast, there are some amazing LLMD pediatricians in PA and NY. I can get you their info, just let me know! Also, there is an AMAZING ND in Seattle named Amy Derkson. She works with Dr. Klinghardt sometimes I believe. She will actually Skype your appointments! That may be a good place to start. There are also some excellent support groups on Facebook that have helped me and lifted me up more times than I can count! I can give you names, just email me and I'll get them to you. Please let me know if there is anything else I can do to help you! Hang in there...it does get better!

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  2. Thanks, I appreciate the info. I am actually in North Carolina. Do you know the name of that cream? I would like to try that. I thought to even ask for sedation for her, only because she has extreme panic attacks when we go to any doctor now. I know there are some LLMDs in NC but they are a good drive for me. I am gonna try to avoid the Rheumatologist if possible, only if I can get the courage to get her tested. Surprisingly, I think my son is symptom free. I hope it stays that way.

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    1. Hi again! It's a Lidocaine cream. I am not sure of the specific name, but most docs are aware of it. They may also offer a type of sedation if you ask for it. Or some form of anti-anxiety med. I hope your son stays symptom-free as well! As long as you are aware of what to look for, you can get him right in with your doc or your daughter's LLMD (once you find one) that can treat him right away. I was actually infected in Texas, but lived in upstate NY, which is endemic. I also know many people who have been infected here, so I am sure I could have been reinfected here as well! Hang in there and write any time. I am here to help!

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  3. I wanted to add, I see you are from Florida. I was born and raised in Zephyrhills, Florida and I am sure that is where I became infected.

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  4. Hi there,
    I was hoping I could talk with you directly. We are a family of 5 and 2 dogs. My 7 year old was probably infected at a year old but just found out last year she had lymes. My husband has lymes. Both our dogs have it. I just gave birth and our little one has had a host of weird issues. They say I'm Lyme free but not so sure. I'd love to talk to u through email. I attached my sons web page. There's a contact button. If you have the time
    Thanks

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    Replies
    1. Hi Erica! I responded through your son's webpage. Did you get it?

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  5. Hi Melissa,

    I was diagnosed in March of this year after suffering 2 years of symptoms. I got my 5 year old tested through Igenex to see if he has it. He shows ZERO Symptoms. His Igenex are as follows:

    IGM Igenex result = negative
    Cdc/nys result = negative
    18+,31 IND, 39 IND,41 IND, 58 +

    IGG Igenex result = negative
    Cdc/nys result = negative
    31 IND, 39 IND 41 +, 58+

    These bands indicate exposure to BB however as I mentioned he shows no symptoms. Should I still start treatment on him and will that awaken the beast? Or should I wait until he starts to show symptoms if at all? Do you think he can go through life with no symptoms and just be a carrier?

    please check out my blog: www.lymedout.wordpress.com
    my email is lymedout@gmail.com

    ReplyDelete
  6. Hi Melissa,

    I was diagnosed in March of this year after suffering 2 years of symptoms. I got my 5 year old tested through Igenex to see if he has it. He shows ZERO Symptoms. His Igenex are as follows:

    IGM Igenex result = negative
    Cdc/nys result = negative
    18+,31 IND, 39 IND,41 IND, 58 +

    IGG Igenex result = negative
    Cdc/nys result = negative
    31 IND, 39 IND 41 +, 58+

    These bands indicate exposure to BB however as I mentioned he shows no symptoms. Should I still start treatment on him and will that awaken the beast? Or should I wait until he starts to show symptoms if at all? Do you think he can go through life with no symptoms and just be a carrier?

    please check out my blog: www.lymedout.wordpress.com
    my email is lymedout@gmail.com

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    Replies
    1. Hi! SO sorry for the delay. Did not recieve a message about your comment and just happened upon it. I am emailing you at the address you gave above.

      Thank you!
      Melissa

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  7. I cannot bare the fact that your children are going through this. Tears stream down my cheeks for them. As an adult, I find the whole experience of lyme so difficult, and it is such a hard road - that your poor little ones are doing this is terrible. I send you the biggest feeling of hope and love - your heart must be so sad for them. Oh what an amazing mother you are.

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    1. Thank you Kirstin! It has been difficult, but we are in a better place now. We still have many years of treatment ahead of us, but we feel empowered in knowing what we are dealing with. I hope you are feeling OK!

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  8. Hi Melissa,
    Thank you for writing about congenital lyme. As you wrote, there are many questions about whether we do more harm by treating our kids with abx or if we should treat to stop more damage from happening. We are currently struggling with these questions.

    It's highly likely I contracted Lyme at age 11. I was diagnosed with
    Earlier this year. My husband and kids were subsequently testing and test positive. My youngest (4) shows more symptoms than my oldest (6). I am hoping you would be willing to email me as I just had a couple questions for you. And I could not find a link to email you here on your blog. We are scheduled to See a ND who specializes in lyme in September. I am also scheduled to see an LLMD in the states in October. I am mostly curious to hear that you would do anything different from the start in regards to antibiotic treatment . would you start with the art testing and natural remedies for your kids or would you go the antibiotic about to begin?

    I would greatly appreciate an email if you have some time. It would be a relief to hear from someone who's been treating heir kids for a little while and might be able to some helpful insights with hindsight.

    My email address is beautyfullview@gmail.com

    Warmly,
    Shanna

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    Replies
    1. Hi Shanna! I am so sorry to hear about your diagnosis! I will be happy to email you. If you don't receive it, let me know.
      Melissa

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