My daughter has Lyme Disease

F

feebee

Cathlete
My DD was just diagnosed with Lyme Disease. She is 11 yrs old. We believe it happened June 28. Cleaning out FIL cabin in BlackRiverFalls, WI. I did disregard a lot of her symptoms at first, even the strange oval discoloration on her back. On July 14, she had hives, all over her torso. We rushed to the clinic and she got a epi shot and a benadryl shot. I followed up the next day with family doctor and asked if she might have Lyme disease and told him of all the strange symptoms and where we had been in June. He did think it was a possibility and had her tested. He started her on Amoxicillin right away and called us a week later to confirm it was Lyme. By Aug 18, she was no better and had started more strange symptoms. He said to see a specialist. Quite a few calls later back and forth I got in at Children's Hospital. At first they just prescribed Doxycycline and said we did not need to be seen. By this time I had read several books and was shocked to find out how devastating this disease can get if not treated correctly. At first I think this doctor thought I was one of those hysterical parents looking for attention. I did bring the book I had read along (overkill???) He at first said it seemed to be like fibromyalgia. He said that my biggest problem was that book causing more pyschological damage. But after some discussion with me and then his exam and questions to my DD, he seemed to think it may be Lyme disease and ordered more tests. He did say that the majority of patients respond and are treated effectively with Doxycycline. One of my main concerns was if this drug doesn't work, what next? He said immediate IV antibiotics with PI CC line.
I really hope this drug works.
He also seemed concerned about our cat and it scratching DD. He will send results when they come in.
Has anyone had any experience with Lyme disease? I have paged through many books from the library and read enough to understand how it develops and spreads throughout the body to be very concerned. I have also gotten some good sound nutritional advise to help with symptoms and treatment from a very knowledgeable person.
I feel so bad that I didn't immediately recognize the signs. She is in such pain and so tired! Any response would be greatly appreciated!
Thanks so much,
Colleen
 
Hi there:
I don't have much experience with Lyme, but my nephew, who was 3 years old at the time, did have it last summer. He ended up with Bells Palsy, balance problems, etc. It took an excessive period of time before he was actually diagnosed; however, the good news is that he did respond to the antibiotics given. It did take some time, but there doesn't seem to be any long lasting effects for him that have shown up yet.

I send you positive and healing thoughts for your daughter! It's so hard to watch your own child sick and in pain.

Alicia
 
I was diagnosed with Lyme in 2001 and treated with 9 mos of abx. If you want, PM me and I'll answer questions and let you know what I know. :)
 
Colleen, I am so sorry to hear about your daughter. I have no experience with the disease but wanted to let you know I will keep you and your daughter in my prayers. How scary it must be and I don't think you were over-reactive at all! Thank goodness you read up on the disease to know that you needed to be concerned. I hope the drug works for her. Please keep us posted. BIG HUGS!
 
Colleen,

I am so sorry your daughter is in so much pain and you having to deal with the doctors. I've learned long ago that you are your child's best advocate. Your dd is very blessed to have you as her mother. Thoughts and prayers to you both!!!

Wendy
 
Colleen,
I'm sorry to hear about your daughter. I hope she continues to improve. I wanted to tell you, as a mom, pleased don't beat yourself up! You listened to your instinct, ignored the doc's bad advice and continued pursuing aid for your daughter until you received the correct diagnosis, all in (from what I've read about Lyme disease) a rather short amount of time. (I've heard of people who took YEARS to be diagnosed!)You got her help in weeks! Good for you!
Keeping her in prayers!
Becky
 
These examples really show that you are your own best advocate.

I hate it if my concerns are brushed off by physicians or any professional just because I do not have a degree in that particular field. But hello: That does not mean I do not know anything!

Always be prepared before going to the doctor.

I hope your daughter will make a speedy and full recovery.
 
Thanks so much for all the responses, kind words and prayers! It is so appreciated! I will keep you posted! DD seems a smidgen better each day. She tells me if it were not for the nutrition part she doesn't think she would feel as well as she does. Her first day of school today went ok, I was so worried! She does not have to take Phy Ed for the month of Sept. That should help. One symptom we noticed is that she is forgetful or sometimes confuses words. I hope that is not a lasting problem! Thanks Kimenem, Britt333,I will try to PM you.
Thanks so much,
Colleen
 
I notice even now that when typing, which I sometimes do a lot of, I will type the same word twice even though I was thinking about the correct word. I don't know if that is active Lyme or just effects from having it, or maybe just other weirdness from getting older. I just try to forget about it and move on.
 
DD has been off of meds for about 3 weeks. Today she stayed home and yesterday she called to come home from school because she had all the same symptoms from when she was first diagnosed in July. Is this a relapse? She feels and acts just like she did in July! I may have located a Lyme Literate MD. We go to see him on Mon. He is not a PPO (Participating Provider) but hubby says go anyway. It is only 1hr 40min away from home. I hope he will answer the many questions we have. Does anyone know about relapse with Lyme disease? Any help would be appreciated.
Thanks,
Colleen
 
Oh gosh, Colleen, no experience or help here, but just want you to know I will be thinking about you and praying that you get this resolved.

I don't think taking the book to the Docs was an overkill - it probably showed him that you had done some research on your own and knew the basics so he didn't have to start at square one,

But I know when it comes to our children, everything is so much harder and I know you are doing everything you can to help her.

Thoughts and prayers for you. Please keep us posted.
 
I just finished my course of meds for Lyme. I was on Doxycilin (spelling?) I've been off for a week and feel fine, though still a little tired. Knock wood, I feel that I am on my way to a full recovery.

Also want to send my hugs to your daughter. I know how she must be feeling, and it's not fun. :( I have never felt as lousy as I did with this disease.

Sparrow
 
something to look into to

My mom purchased one of those foot baths that pull the toxins out of your body from your feet. She has been using it on my neighbor who has lyme disease and is doing much better. If you would like more info I can ask my mom the name of it. I know the units run about $1000 but she said she would buy it again because it has also helped with numerous other ailments she had (medication toxins, arthritis, etc).
Kel
 
We saw the doctor today and it went well. He was very knowledgeable and answered our questions. He most definitely believes she had a relapse. It will all depend on her symptoms as to how to proceed with treatment. He started her on a different antibiotic, and we call in 3 weeks to let him know how she progresses, maybe go back in 6 weeks to see him. She has started to feel better since Tues. when she started the new antibiotic, but still tires easily and becomes quite sore all over if she over does it with activity. He sees her as an individual and does not expect her to be like everyone else. That is exactly how Lyme disease works.
Thanks for the thoughts and prayers, worknprogress! It really helps!!!
Sparrow, thanks for the hugs! When there is a relapse you would know it! I hope you are fully recovered!
Kel, what is the name of the foot bath? Sounds interesting! Thanks!
I will keep you all posted.
Thanks so much,
Colleen
 
How long of a course of abx was she on? It's my understanding that unless you catch it immediately, you may need a longer course. I was on 2 different meds from April through December of 2001. I still get a few weird things here and there but not like before. Also, it can be years before you see a relapse, from what I've read. However, I think that may tend to happen in people who went undiagnosed for awhile. Does she feel any worse while on meds? The bugs release a toxin when they die off...shows the meds are working.
 
Kimenem,
She was on ammoxicillin 1 month, then doxycycline 1 month. She was feeling good with minor symptoms for 2 1/2 weeks after last dose of doxy. Then she felt awful again, same as she did when first diagnosed. I then contacted family doctor and then a new doctor who seemed to really understand Lyme disease. She has now started clarithromycin and did feel worse yet for several days. She is feeling better but does have symptoms get worse and then better. Maybe this is the herxheimer like reaction when the bacteria is killed off and they release toxins which then the body's immune system deal with which makes you feel lousy. At least that is how I understand it to work but I could have that wrong. This course of meds will go for 6 weeks and then we will see how things are. I am glad we finally found a doctor who understands Lyme. The Infectious Disease Specialist did not at all! The family doctor doesn't either but at least is helpful and cooperative.
Will keep you posted.
Thanks so much,
Colleen
 
I hope all goes well. :) Yeah, doctors have their strengths and their weaknesses. Medicine is a big field.

I'm so glad you found someone who can help you.
 
I do remember a Lyme forum that I visited and my LLMD saying that you have to take the antibiotics for awhile AFTER all symptoms have disappeared. SOmething about the life cycle of the bug...to make sure you kill them all.
 
So sorry to hear about your daughter! I live in Lyme Disease country, Connecticut. My DH had it twice--yes, you can get reinfected. The second time affected his heart, causing pericarditis. He was successfully treated with Doxycycline and seems to be OK now. My three year old nephew has been infected three times. Deer run through our backyard, so unless you stay inside it's very hard to avoid ticks. Fortunately, because it's so widespread we have doctors who are knowledgeable about the disease and when someone feels ill, that's usually the first thing they get tested for.

Most cases, with the exception of my husbands, usually have good outcomes.
I wish your daughter a speedy recovery!
 
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