Hi all - long story short - 4 year old bit May 20 in PA (imbedded 24 hours plus), got proper treatment (amox and azith) since July 9. So going on 3.5 months. No pain etc. But seems to still not be able to focus. And the axiety is sometimes frightening! She freaks out over apparently nothing at all. Any advice? Does this mean its in her brain necessarily? If so, are these orals enough? Anybody seen panic in their kid go away? I'm just so sad over this... Thank you in advance if you answer.
Posted by Lymetoo (Member # 743) on :
Has she been tested for bartonella??
Posted by ktkdommer (Member # 29020) on :
I have seen pain and anxiety from Lyme go away in my 16 year old. My teenager was full of anxiety just watching the movie "Up". I watched him with amazement more than I did the movie. He turned into someone else for a while. He is 15 months into treatment, 10 of IV rocephin and is doing so much better. Some cognitive stuff slow to clear. Focusing is pretty much nonexistant. He asks for adderall if I forget.
He is older than your child so could try effexor to help.
Sick kids are sad all by themselves but when you add in mental issues, cognitive delays and mood disorders, it is a heartbreaking situation. Anxiety can be scary to watch.
I don't have any answers really. I'm sorry your daughter is having problems. Are you with a good doctor? What does the doctor say about anxiety issues?
Are orals enough? You won't know until you know you have the right orals for the right infections.
Should there be a cyst buster on board in treatment? I don't know the answer to this in young kids.
I hope things get better for you and your daughter!
Posted by narrowpath (Member # 15086) on :
Thank you both - Kari - you're the one who directed me to Dr. P. She was never tested for co-infections - he said the combo she is on should cover 90 percent and Lyme and Co. Would you guys recommend getting tested specifically for Bart? Doesn't amox and azith cover Bart? Could my little 4 year old possibly need treament for a year? Oh, I can barely stand it. If I lived in a bubble it would be so easy. But you guys know the pressure - even ill- informed MDs in my own family to stop abx. Its SO frustrating. And this is after my OWN battle with Lyme years ago. I did 11 months - IV etc. and have triumphed. And they STILL don't get it!!! Sorry. Venting. Crying here. Augh...
Posted by ktkdommer (Member # 29020) on :
You are in a hard position having to make medical decisions. At your daughter's age, treatment is a bit different. I know Dr. P. trained with Dr. J. so has some very good pediatric knowledge. Maybe it is too soon to expect more.
I think I've read that sometimes the neuro stuff is the last to clear up. I know my child has a way to go yet.
Does the doctor think she showed clinically for bart and has it covered? Is testing for coinfections in children more difficult?
Any chance the infection has been around longer than you thought?
Posted by Lymetoo (Member # 743) on :
I don't think amoxy and zith will take care of bart. I'm so sorry you are in so much pain. It's so sad for both of you!
Posted by narrowpath (Member # 15086) on :
Thank you again... Now my husband home and claiming that these new onset panic attacks have nothing to do with Lyme! Nor did the rash. Nor did the pain. Nor did the fatigue. Nor did the "bees in her toes". And that tic in her neck??? Augh. Just venting onto this screen feels good. I'm fighting a battle, even in my own marriage! I'm going to get her tested for Bart. If I can. Its so hard to feel alone in this garbage, isn't it? Thank you all for listening...
Posted by narrowpath (Member # 15086) on :
Thank you again... Now my husband home and claiming that these new onset panic attacks have nothing to do with Lyme! Nor did the rash. Nor did the pain. Nor did the fatigue. Nor did the "bees in her toes". And that tic in her neck??? Augh. Just venting onto this screen feels good. I'm fighting a battle, even in my own marriage! I'm going to get her tested for Bart. If I can. Its so hard to feel alone in this garbage, isn't it? Thank you all for listening...
Posted by sickofsick (Member # 29258) on :
Sorry about what you are dealing with! We shouldn't have to defend everything. My 13yr daughter is sick. It is difficult what we deal with.
I also thought Bart when you talked about anxiety. We have no positive test for it, nor no serious anxiety issues, but doc thinks she has it due to other symptoms. Not treating it yet.
Just wanted to give you my support.
Posted by gatorade girl (Member # 24896) on :
Posted by tick battler (Member # 21113) on :
So sorry to hear this. I can relate as one by one my children were diagnosed at a young age. My twin boys at age 4 and my daughter at age 2.
Those drugs will not kill the coinfections. It is highly likely that she has coinfections along with lyme. It is almost unheard of to get straight lyme these days. We live in PA and my family of 5 was all infected with babesia, bartonella, ehrlichia, parasites and lyme.
I would also test for babesia just in case, as it too can cause anxiety. Does she have a decreased appetite or night sweats? Bart can cause anxiety as well. Are there any other subtle symptoms? I found with my kids that I had to ask them every day if anything was hurting or feeling funny. They wouldn't mention it often unless I asked.
My children did 2 years of abx and improved but did not get fully well. We then switched to herbs and then made huge progress. If I knew then what I know now, I would have started with the herbs. Much less toxic to the body and no side effects. If you would like more info on our protocol, please send me a pm. It is similar to the Cowden protocol but simpler and it works!
tickbattler
Posted by tick battler (Member # 21113) on :
Oh - I would have your husband watch Under Our Skin. And gather some materials for him to read.
Here is a good one about symptoms in children (sorry I couldn't send the link which is easier to read):
The Symptoms of Lyme Disease Are Not Well-Recognized, Especially in Children
All parents and educators should be aware of the risk of Lyme Disease in our communities. Pennsylvania has experienced a tremendous increase in tick populations and tick infections (Reference: Dr. Richard Dryden research, Washington and Jefferson University). If you live in Southeastern PA, which has the highest incidence of Lyme in Pennsylvania, you need to be well-informed about Lyme Disease. There is a broad spectrum of scientific knowledge about these diseases that you should know. Most of us know at least one person who has been affected, with lives forever changed by these diseases. The impact on children can be very significant and often goes unrecognized as �Lyme�. Prevention of chronic long-term disease is possible, and facilitated by an understanding of how these diseases present in children, often behaviorally or cognitively.
The PA Senate and House re-introduced legislation in 2009 regarding the diagnosis, treatment, education, and prevention of Lyme Disease due to the increase in incidence and severity of these illnesses, and the current medical controversy (including a legally-mandated investigation requiring a formal review and revision of the current IDSA guidelines most physicians use to diagnose and treat Lyme disease). You can inform yourself by attending the screening of Under Our Skin at The Bryn Mawr Film Institute on September 29, at 7:30pm. MontCoLyme will sponsor a Q&A panel after the film with a nationally known Lyme-literate MD, Dr. Ann Corson, a Temple professor addressing the ethical issues, Dr. Lynne Andersson, and a local family featured in the film. Lyme masquerades as many other diseases (Fibromyalgia, ADD/ADHD, MS, Autistic Spectrum, ALS, Chronic Fatigue, Parkinson�s, Rheumatoid Arthritis etc.) � if you know someone with these diseases, let them know about this film screening.
Here are a few quick facts you should know: Children are the most likely victims, especially ages 5 � 10 years. The longer the delay in treatment, the more difficult it is to treat. The disease can be persistent and chronic. Preliminary results released last fall from a retrospective data analysis of over 10,000 children with Lyme, indicate presenting symptoms in children (and also in adults) to be neuro-cognitive � not the commonly quoted �bulls-eye� rash, swollen knees, and flu-like symptoms. See the full list boxed below. These presenting neuro-cognitive symptoms (Reference: ILADS 9th Scientific Session Proceedings, Oct 18-19, 2008) clearly explain why many kids with Lyme are mis-diagnosed with ADD, learning disorders, behavioral �problems�, psychiatric disorders, or other conditions. Children also suffer from muscle pain, joint pain, headaches and more.
Neuropsychiatric and behavioral: � 98% irritability and anger, anxiety, panic attacks, mood swings, sadness, uncharacteristic outbursts Sleep difficulties - 75% Memory problems � 75% Sensory sensitivities � 57% (sensitivity to tags in back of shirts, sound, light, etc.) Reduced attention/concentration � 92% Auditory processing issues � 62% Visual problems � 36% Fatigue � 79% Impulsivity � 58% Speech/writing difficulties � 34% A Columbia University study found a 22 point IQ drop in children with Lyme, which was restored post-treatment. Early identification and treatment are absolutely crucial to prevent dissemination of the disease, and long-term chronic illness.
Prevention and Early Diagnosis and Treatment are the Key! Avoid tick-infested areas: tall grass, especially grassy areas bordering the woods or walking paths, leaf litter areas, rock walls, and fallen logs. Spray and Wear: light-colored long pants, long sleeves so you can see ticks, spray skin and clothing with DEET and/or Permethrin based sprays. Perform Tick Checks: check your children, top to bottom, for any possible ticks � think �dot�, poppy-seed sized � see below. Recognize Possible Symptoms: become familiar with the many symptoms presented by tick-borne disease; these diseases might be underlying causes.
Posted by jackie51 (Member # 14233) on :
I don't know how long you've dealt with this. I have an 8 yr old that has similar issues.
This is what we do: no artificial colors (yellow #6 or whatever with a number), no artificial sweeteners and no HFCS. I don't care what the studies say or not, we have taken this stuff out of our child's diet. We have had to get her into therapy to deal with it also.
She has lyme, bart, babs and had a high strep titer. The strep titer was hit with erythromycin. High strep titer's cause all sorts of psych problems. Ask your pediatrician to test the ASO titer. Look for more info on this website for help on this.
From what I've seen/read, lyme and strep tend to travel together. I think it's a susceptibility issue.
Good luck. Yes, it is daunting. My heart aches for you.
Posted by nonna05 (Member # 33557) on :
I know probably most symptoms are from bite...could some of this be a little something else that feels worse because of lousy base.
Such as slight /very mild seizures??/ Neuro /mri to check. My grand-daughter didn't show any signs until 4 , so slight doctor had another one read the MRI also..but when she got to worn out a spacing ,not there thing would happen...Sometimes vomit. sometimes middle of night... We had medicine handy in case it got worse/ rectum/valium.
then rechecked year and half later. No signs,PRAISE GOD. She still shouldn't wear out to much. They live far away, so I'd be watching a bit more. But that's just me.
She's eldest of triplets. One of the other girls had a horrible time sleeping...Tonsils and adnoids out , along with previous one.. But #2's grew back again,.. This time we had day surgery for this from ENT in the STATES. She tells me on Skype how much more she can do and now she sleeps through most of night
I don't know ,but this illness is such a monster. They don't have it I do...
But there are other issues I know need looked at on me and this new intro to LY- & co's has taken over....
It is so hard seeing your kids suffer . And then have the wall at home to deal with..... I pray his heart softens and eyes open ... Even today...Lord Bless you and your's. Nonna
Posted by t9im (Member # 25489) on :
Hi narrowpath:
Our daugher had the anxiety early on and we attributed it to babesia versus lyme but it could have been the lyme.
Her LLMD prescribed mepron & zithromax and these symptoms started to ease after 3 to 4 months but took quite a while to dissapear.
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
He is a saint.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by narrowpath: ...new onset panic attacks ...tic in her neck
Those are symptoms of low magnesium, which happens with Lyme Disease. You can do something to ease her symptoms by supplementing magnesium.
See the nutrition information on this site: Facial and Eye Tics in Children: The Links to Magnesium Deficiency http://www.ctds.info/tics.html
Something else that may help with the mental health symptoms is fish oil. Omega 3's will improve the quality of the cell membranes...oxygen and nutrients must pass through cell membranes to provide mitochondria with the stuff they need to make energy in the cells.
This is really important. A lot of Lyme kids are presenting with PANDAS,only caused by Lyme instead of Strep.
Dr. J, famous Lyme pediatrician, is referring kids to an immunologist in Westport CT to treat them with IVIG if they meet the criteria. I know several kids going this route and they are getting better. I think this is fairly new and cutting edge but very effective.
The Lyme infection causes a PANDAS like syndrome for kids. It causes a neuropsychiatric disorder (we all know this) but it has to be treated with IVIG, not just IV antibiotics, to be resolved.
Look up PANDAS, and substituted Lyme for Strep. That is what many of our kids are dealing with. This is critical information. So many of our kids we know have the behavioral aspects, the attention problems, the anxiety, OCD, etc...but they need IVIG to get better.
My son is going there, he also was diagosed with Primary Immune Deficiency Disease but has the whole Lyme/PANDAS type syndrome going on. Dr. B, the immunologist, explained the whole thing. He wants him on IVIG for four months before going back on IV abx.
Because we can't say Dr names on here and I can't handle a flurry of emails as I am in herxville, please google Immunologist in Westport CT, DR B and hopefully you can find him. He is not an LLMD so if I can put his name here that would really help.
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