The only unusual thing I notice in my daughter is intermittent hyper behavior along with awful behavior, anger and irritability and difficulty settling down to sleep.
Posted by seekhelp (Member # 15067) on :
That could be 10,000 things. I think guessing TBIs may be a bit of a stretch if that's all.
Treating children for TBIs on a clinical basis at times makes me very nervous. I sympathize for those who must. I just feel people need to be very, very, very cautious not to just treat because it 'could' be.
Posted by laura j (Member # 14257) on :
I feel the same way seekhelp. I was sick while pregnant with her but didn't know what it was yet. She did have a tick bite last summer but the tick was barely attached and wasn't there for more than 3-4 hrs. She was treated with 2 wks. of preventative amoxicillin for that. And, about six wks. ago she had kind of a bulls-eye rash on her forearm. I'm almost positive it was a mosquito bite but did have a distinctive ring around it so we didn't want to take any chances and treated her again this time with 1 month of amoxicillin. She also did a 10 day course of amoxicillin this past spring for a sinus infection. She's incredibly smart and seem very healthy. She is 3 1/2 yrs. old.
Posted by seekhelp (Member # 15067) on :
That is tough given her exposure to ticks and that mystery rash. Have you had her tested? If so, I'd try a normal lab and then maybe Igenex to get multiple viewpoints IF any doc is agreeable.
One concern, though maybe far-fetched, is could she have gotten another TBD like Bartonella from the original tick bite not treated with Amoxicillin? Again, I'd rather test, step back, look at results and go from there.
I wish you the best. Personally, if I was treatng my child for TBIs, I'd refrain from even posting on here as others do about it. This would be out of fear of authorities being 'concerned.' It does not look good to hear a child is on 4 Abx, Art, and so on.
Conversely, I'd do ANYTHING possible to get my child well so I respect that approach. It's just a bad situation no matter what.
Posted by IckyTicky (Member # 21466) on :
laura.. my son is now 6 and the behavior you describe was one of the first things that made me stop and wonder. His behavior was just horrible and he was hyper and angry and agressive. I actually took him to my primary doc crying and even to a child psychologist who diagnosed him with ADHD and ODD. He has never had a tick bite that I'm aware of, no rash, nothing like that. My LLMD feels he was born with it since I've had lyme undiagnosed for at least 21 years. He is slowly getting better with treatment now. I've noticed a marked improvement in his behavior and control over himself.
Posted by IckyTicky (Member # 21466) on :
Oh... and his tests did come back positive for Lyme. And his LLMD thinks he also has Bart. Not that tests matter.. just proving my point that there wasn't even a history of tick bite or rash. I only tested him because my oldest came back positive after I did and I decided to get my whole family tested. Wallah.. all of us positive.
Posted by njlymemom (Member # 15088) on :
from our personal experience, the answer to your question is yes
yes, and unfortunately it took 13 years for us to figure it out
the child I am speaking of may be a congenital lyme patient, no way to prove it
looking back, all the signs were there
but we just didn't know what we were looking at
best wishes
Posted by Tracy9 (Member # 7521) on :
ABSOLUTELY.
My son spent 14 years with severe behavioral problems, ADHD, in behavioral schools, on meds, and finally, we were convinced to take him to Dr Jones to see if he might be a congential Lymie.
We were shocked to see his Western Blot come back CDC positive, along with Bart and Babs, a terrible SPECT scan, and three white matter lesions on his brain in the frontal lobe of his brain.
My son has lived his life in hell, ostracized, kicked out of school, we have fought for him his whole life, evaluation after evaluation, I cannot even begin to tell you...and it has been from birth.
I truly wish someone would write a book about him. (Pam????)
We are still in shock. One month on IV Rocephin, we had a totally and completely NORMAL child. Unfortunately after two months, it caused anaphylactic shock and we are now struggling to find the right IV med to help him.
All this, 14 years of hell, all caused by a medical illness, Lyme Disease. Never ADHD....all the medical proof is there.
It is absolutely heartbreaking what this child has been through, what he has lost, and what he will never regain.
Posted by tick battler (Member # 21113) on :
laura,
From my personal experience with my 3 children who all have lyme, bart and babs, the answer is YES.
The manic, hyperactive behavior was the first symptom in one of my boys. And the cranky and irritable behavior, along with night waking and crying was the first sign in my daughter.
I don't think it's a stretch at all to consider TBI's when a child displays this type of behavior, particularly if you were infected prior to giving birth. To me, now that I have experienced this with my 3 children, it would be the first place I would look. I don't think it is normal for children to be manic and angry and irritable every day.
My 3 year old daughter was the most difficult to diagnose. After my boys started treatment, I was watching my daughter closely. She was a good, happy baby but from age 2 to 3, she started waking up cranky from her naps and she also started waking at night several times with nightmares and crying.
This was exactly what one of my boys had done at this age before I knew he was infected. The only other symptom I noticed was that she would itch her scalp every time after she woke up. Every once in awhile when she was cranky, I would ask her if anything hurt and she would point to her ears or head. I was not sure if she was copying her brothers, but it concerned me.
This was enough for me to have her tested and evaluated. Her Igenex was negative, with only band 41, just as my son's had been before treatment. Her exam by our LLMD was completely normal. But my LLMD agreed to treat her as a trial to see if she improved with abx treatment. At this point, I was only about 80% sure she was infected.
She was started just on zith and that helped a tiny bit but then after a couple months, the night waking became even worse. I suspected bart and asked to add a drug for that. Just after adding Bactrim, she tested positive with a high titer for bartonella henselae. It had been negative previously.
The bactrim made a noticeable difference in her sleep issues and in her irritable behavior, and we have seen her titers go down to almost normal through treatment. Our LLMD told me that the fact that she tested positive for a coinfection confirms the existence of the Lyme, even though we don't have a positive Lyme test.
Once we knocked down the bart in my daughter for several months, she started telling me she was tired and wanted to be carried when we went on walks. Sure enough, she then tested positive for babesia.
I am thankful I started treating my daughter when I did, as I caught it very early and she is improving much faster than my sons, who were infected for a longer time period before we began treatment.
I suspect that I may have given them a low load of Lyme congenitally, but they also had several tick bites which made the infections more serious.
I hope this helps.
tickbattler
Posted by Stacyb (Member # 13084) on :
Laura,
Yes this can and IMO most likely is a sign of TBD. My oldest has autism and he had a bad temper. We took him to Dr J and he knew right away he had Bart and Lyme. He is doing remarkable after a year on orals.
My younger son we could not really tell and only was having ADD symtpoms too. But as time went on I realized it was more then that. His tests were never positive but neither were mine and I was so sick when I first started tx. We just started him on Amoxcy and now added the Zith per Dr J and it is amazing how much better he is doing in school and with his moods. I say mothers intuition is always right !!!
Posted by Starfall1969 (Member # 17353) on :
I have wondered that as well.
My older son seems very hyperactive--even my SIL, whose son also has ADHD, said he's 100x worse than her son ever was.
Lately he's been having some serious temper issues; he blows up at the slightest thing, and I'm so tired of being screamed at for nothing.
His doctor just seems to blow mw off, and because of $$$ issues, I haven't gotten him an appointmetn with my LLMD.
Posted by METALLlC BLUE (Member # 6628) on :
Yes.
Posted by jmb (Member # 18338) on :
I offer no answer just a story.
Looking back on the past for me, I was an ADHD kid. I was/am fortunate to be able to function and excel even in the classroom because I could still make the grade, and becasue people tend to like me.
I do not know when I came down with Lyme, but I can tell you that the ADHD continued to increase through the college years and into a professional career.
I started on Adderall when I was 33, and it helped me a lot. But with Lyme treatment, the ADHD has ebbed and flowed as I have recovered.
So it has served as an indicator of progress to me.
Posted by peacemama (Member # 17666) on :
Yes. Certainly with my kids.
Posted by Shosty (Member # 12232) on :
But the anaphylactic reaction of one poster's child does point to the dangers of antibiotics, which is a concern when you really aren't sure.
Often, children's "good" and "bad" kid developmental phases alternate every 6 months. If she has been like this for a few months, maybe things will improve soon.
On the other hand, if the behaviors are extreme enough to make you think something physiological is going on, then Lyme or other TBI is certainly a first guess.
What happened in the previous times she was on meds? Did you observe any "herxes" or improvements?
Just remember that antibiotics are potent drugs that affect the immune system, and alter the bacterial balance in the gut. It is not an easy decision, and we have been there too.
I would ask: what does the most harm?
Posted by laura j (Member # 14257) on :
Thanks everyone for your input. I just don't want to believe that this could be possible with all I've been through. I just don't know how we'd cope with this. I've mentioned it to my husband but he says she's normal. For the most part she is but I'm with her 24/7 and I notice these patterns in her.
Shosty, you asked what's happened with her on meds. The first time she did amoxicillin last summer I noticed an improvement in her behavior for a long time. In Aug. she started Bactrim for a UTI and developed a fever of 102 a couple days into it that didn't make much sense and the doctors said she must have coincidentally picked something else up but stopped the Bactrim just in case. Then, she recently finished a month of amoxicillin and was fine that whole time but the very first day off of it, this recent round of this behavior started.
God, I don't know how to do this. I just started feeling better over the last couple of months and we've now decided to buy a house since our lives have been on hold over the last few years due to my illness which started to hit the fan right before my wedding 5 yrs. ago. No honeymoon phase for us. It has been very difficult to say the least (on our marriage as well).
If it turns out my daughter has it as well, I don't know if our family will get through it or if it will tear us apart. My husband thinks I'm obsessed. I think I'm knowledgeable and observant and that I know my daughter better than anyone. What someone above mentioned about "good kid, bad kid" cycling every 6 mos. or so, maybe that's all it is (hopefully).
Am I doing damage by taking a wait and see approach. Someone above mentioned their child finally getting dx at 14 and improving. If that's possible, shouldn't I wait and see?
Posted by Shosty (Member # 12232) on :
How was that first tick removed, the one that was "barely attached" and only there 3 or 4 hours? Was it squeezed at all, or safely removed at the head with tweezers?
One of my daughters and I are in a place where we would rather have Lyme symptoms than take antibiotics. We just can't take them, and they did us a lot of harm without really helping our symptoms all that much.
However, with my middle child, antibiotics helped a lot, and she was literally cured after only 3 months. She had some sleep problems, but, believe it or not, her only symptom was a feeling that she had something in her eye: it was an extreme sensation, that was interfering with her life, but it was really that one symptom only that led us to have her tested.
Her Western Blots were highly positive, and that led the way. I would not have sought antibiotic treatment for her based on that one symptom, nor would our doctor have given her meds. And the only reason I thought to ask for the Western Blot was because I and my other daughter had been dealing with Lyme for many years already.
Our PCP put my younger daughter on amoxicillin right away, because the positivbe IgM made him think it was a recent, acute infection (wrong, probably). That gave us time to get her to our LLMD (covered by insurance, well-respected).
We first tried taking her off the amoxicillin and not doing anything further. The eye sensation returned. We did another month of tetracycline, stopped, the eye sensation returned. Then she did either 2 or 3 more months of tetracycline, all gone, and it has been gone for 8 years, with no other symptoms at all.
Don't make a disaster out of this, at least until you have reason to. Save your adrenal function for things that you actually are dealing with, not things you think that you might have to deal with. And if it is Lyme,it doesn't have to be a big deal.
You can deal with anything that comes your way and what you have dealt with so far really isn't that bad. Problems with a husband who thinks that concern for Lyme is "obsessive" is very common. Don't involve him if his attitudes are like this. Find support elsewhere, like a support group.
Okay, so: get this child tested, Western Blots, preferably Igenex but even Quest if that is all that is possible.
Maybe keep a diary of behavior and symptoms off antibiotics, and then on antibiotics, to document changes.
If testing is negative, I would still wait and see if behavior changes occur in a few months, as part of normal development. If testing is positive, and IgM is positive specifically, your regular doctor will start her on something and you can look into taking her to an LLMD.
And be aware that, as seekhelp implied, any parent who goes out of the system to give potent medications to a child without positive testing, is vulnerable to investigation if discovered by the wrong MD's who are in the system.
Posted by laura j (Member # 14257) on :
Thanks so much Shosty! Lots of good advice. I will be PMing you to see who the LLMD is that takes insurance. I have to try to not mention everything to my husband. It's not doing our relationship any good.
Posted by Shosty (Member # 12232) on :
Laura, your mailbox is full!
Posted by laura j (Member # 14257) on :
All set!
Posted by lpkayak (Member # 5230) on :
please listen to the majority of posters who are telling you to take this very seriously
you said,"Am I doing damage by taking a wait and see approach."
my answer-absolutely you could be. it is never a "good" time to get and tx lyme.
my husband was never on board with the kids tx. he didn't stop me-but did think i was crazy-and eventually we did divorce. but i know-if i didn't get them to llmds and get aggressive abx tx asap they would not be successfully graduated from college and working in their field and working on doctorates now.
i hope your family will get thru this together-but you are in a position to make a happy ending here...i hope you are able to follow thru
Posted by IckyTicky (Member # 21466) on :
My husband thought I was obsessed too. Back before I was tested for Lyme and I was reading up on it and was sooo very sick, my husband and I fought a lot because he thought someone had "convinced" me that I had lyme disease. Then I came back positive for it.
Then I wanted my kids tested.. all three of them had symptoms, beginning with my 16 yr old. She had gone her whole life with bad staph infections on her legs and sometimes hands and other areas. It was a constant thing. My husband refused to believe it but when she started developing muscle twitches I demanded. She came back positive and is having a hard time with meds because she's gone all this time with the infections.
So that made me even more determined to have my other two tested. My 8 yr old seemed okay, but always had purple under her eyes and was very tired all the time. And very sensitive.
My son was diagnosed with ADHD and ODD at the age of 4. Before that, he would rock and bang his head any time he had to be still.. a rhythmic motion always. I was concerned but the doctors didn't seem to be. He wasn't hurting himself they said, it was more for comfort. He had been doing that since he was old enough to sit up on his own. I also at one point was sure he had an autism spectrum disorder of some sort. He had fibromyalgia, only I didn't know it. For years he would scream at me that I was hurting him just when I would grab him by the arm in the store, or try to help him into the car. I am horrified now that I would yell at him and call him a whiney baby and that "I'm not hurting you so stop yelling!" Turns out.. I WAS hurting him, because he had Fibromyalgia!!!! All that time we thought he was over exaggerating and trying to be obnoxious and get attention. I remember telling my husband when he was 4, that there HAD to be something wrong with our son! No child in their right mind would choose to be punished all the time! And I noticed that a lot of times, when I would say "Braiden, don't open that door".. he would open the door first thing! It wasn't that he was being naughty... it was the fact that all that was processing in his brain first was "open that door". Looking back my heart just breaks for what he went through! But still, my husband refused to believe anything was wrong with him even back then before we knew about Lyme. It was a major struggle between us and we almost divorced. Then our son started having foot pain at night and first thing in the morning and would cry when he walked. The husband relented (and I was having him tested ANYWAYS because by then I knew exactly what he had) Both my little ones came back positive. And indeed, so did my husband!
It's hard. My whole family of 5 has this disease and also my identical twin sister. All of us are "neuro" except for my 8 yr old and husband but all are chronic. It's hard, it's expensive, we are in debt. But I'd gladly sell my home and move into a cheap motel if it meant keeping us all in treatment. Lyme changes lives, and it isn't always fair. But we endure, and we are still a happy family.
Posted by tick battler (Member # 21113) on :
I agree with lpkayak---as you can see with some of the posts above, much damage can be done by waiting. If you catch it early, she will most likely have to take fewer abx for a shorter time period, have fewer symptoms with less herxing and may just improve with little or no herxing as you saw with her when she was on abx before! This is the case with my daughter, whom I was able to diagnose much earlier than my sons.
I think it would actually make your life much easier to have a happy child who listens to you. My husband and I never had a honeymoon period either with twins born (possibly congenitally infected) a year after getting married, then a year later getting tick bites...It has been very, very difficult to have three oppositional children with insomnia, hyperactivity and other symptoms. After a year of treatment, we finally feel that we are getting closer to experiencing life as parents with "normal, healthy" children. We are not there yet, be we see glimpses of normality and our lives are much easier than they were.
Just don't talk about it much with your husband...and play it down about your daughter if you can. I know it is devastating to think that she might have it but it is good news if you are catching something like this now so you can treat it and get rid of it. I would take her to an LLMD and trust your instincts! If you are seeing these behavior patterns, then they are there.
tickbattler
Posted by lpkayak (Member # 5230) on :
"No child in their right mind would choose to be punished all the time!"
i'm crying like a baby here right now after reading this.
i said that so many times to teachers-doctors-my husband...and anyone else who would listen when i was trying to get one of my kids help
THIRTY YEARS AGO!!!!
he just turned 36. has had a reasonable life. hes the only one of my 4 who didn't grad from college-but he spent many years as a talented athlete, is a social butterfly with many friends, and has always worked and supported himself since he left home at 19. he has been a very successful salesman the last 4-5 yrs-even thru the recession when others were let go at this company-and hes getting ready to marry a wonderful woman and buy a house.
if i hadn't fought for him and done what i could to change negative stuff into positive stuff...i believe he would have committed suicide. or for sure gone thru some of the horrific things other innocent-but sick -teens are going thru
(there are many sad stories on here about that)
so-thank you for saying that. my grief over him losing his childhood continues...but the tears coming out now are cathartic.
and the message parents:
FIGHT FOR YOUR KIDS. THE HARDER AND THE EARLIER YOU DO IT THE BETTER THE RESULT.
have you seen that poster:
its a cute little kid saying something like:
"i know i'm somebody, cuz god don't make no junk"
i often say: "kids aren't born bad"
(i guess i might have to rethink that with congenital lyme-but of course they aren't bad...its the behaviors that come along with the disease)
Posted by Shosty (Member # 12232) on :
It is a big step to put a child on potent medications based on "only" irritability and trouble getting to sleep, both of which can be normal for children.
I think this mother can tell intuitively whether this behavior is "normal" or could be Lyme, and would trust her. I am only suggesting that she try to observe without assuming it is Lyme automatically, which she is not doing anyway. She is not sure, and is asking us for advice on that determination, which we really cannot help that much with, in the abstract.
Getting a positive test helps this kind of agonizing decision, so that is maybe the first thing to do. If testing is positive, the way is clear. If testing is negative, things get murkier.
Doing antibiotics for three or four weeks and observing changes can be another course of action to take. With a sort of experimental attitude. Or deciding on doing 3 months to see what happens. This requires a doctor who will prescribe, of course.
But committing to long term meds, or maybe multiple meds, that have potent effects on the body now and down the road, does not seem prudent, without any evidence that it is needed, as yet.
A case can be built for antibiotics either way: observing without meds, or observing with meds. But answers are not obvious, and will take time, even years. There is a need to be patient, to get those answers.
Every parent should be prepared to defend this course of action, meaning meds, to other doctors, social workers and other professionals that we encounter. That means testing, record-keeping and diaries/logs, not just anecdotes or parental impressions.
As I said, one of my kids was greatly- and quickly- helped by meds (with positive testing), and the other one (with ambiguous testing, but very ill for years) was actually harmed and not helped by antibiotics. Her gut was destroyed and her immune system was affected.
I get concerned with the one-size-fits-all, jump on the bandwagon kind of thing that says put this child on antibiotics now to prevent a lifetime of health disasters. You need to make time to make a good decision, each step along the way.This mom is doing that.
Posted by Tracy9 (Member # 7521) on :
AFTER we brought in the MRI results that showed the three white matter lesions in the frontal lobe of my son's brain, which control impulsivity, behavior, attention, emotions, etc; his positive Lyme test results, and his SPECT scan, he was chastised by the school for explaining what his PICC line was to other students who asked for "disrupting class."
When I asked if he could perhaps have a few minutes to "show and tell" to avert the questions, I was told "we don't do this in 8th grade. I was told Cody was to wear a long sleeved shirt until the end of school, mid June, in a school with no air conditioning, of course.
We continued to receive daily notes that he "refused" to do his work, "chose" not to do his work, etc. It honestly took all I could not to go down there and scream, but with all the documentation I had given them, obviously it fell on deaf ears.
He was excluded from the 8th grade class trip for some behaviors the day before. My husband offered to go along and chaperone. No go.
This is just last year. Imagine 13 years of this.
Yes, he went into anaphylactic shock. He also got a line infection and had to have his line pulled in the ER.
Guess what? We know what to look for and are at the ready. Is it worth it? Every single risk. He has lost his entire childhood, no friends, no self esteem, spent 3 1/2 years in a lockdown behavioral school attached to a pscyhiatric hospital ( age 8 to 11 1/2) where he did NOT belong, attended partial hospitalization programs twice, and the ONLY diagnosis they could ever come up for him was ADHD.
That's because he never HAD a psychiatric diagnosis. He had very, very severe neurological Lyme disease.
My son, to this day, has never been invited to a birthday party. He is an exceptionally cute, friendly, funny, very intelligent little boy. But his reputation has preceeded him and he has always been treated as such.
There is no question, at all, Dr. Jones is saving him. I wish I had brought him sooner. Because we have never known him to have Lyme disease, it took a bit for friends/Lyme buddies to convince us to spend the money to have him tested.
Boy, were they ever right.
Posted by Shosty (Member # 12232) on :
Tracy, you had positive testing and MRI to go by, and the situation was much more extreme than that of the original poster's child. Three and a half years in a lock down psychiatric facility is very dramatic and unfortunate,
Again, it is hard to tell from Laura's original post here, whether it is Lyme or not.
Tracy, did your son have a 504 plan? We always did presentations on my daughter's health (mainly her insulin pump) at the beginning of each year. When the class trip (hiking a mountain) was too difficult for her (and others, such as kids with asthma and weight issues), I called the Office of Civil Rights and they made the school change to trip to activities on flat land.
Being required to wear a long-sleeved shirt was a gross civil rights violation.
If parents make sure there is a legal plan in place, and, if necessary, hire a lawyer, the school experience can be better for the child (if not the parents, who have to suffer a lot while advocating). I just don't want people to think that the experience has to be that bad.
There is no way to tell if your experience, mine, or anyone else's is especially relevant to Laura J.'s decision here, unfortunately, but your story, like mine, does affirm the value of at least trying to get an answer through a good Western blot.
Posted by tick battler (Member # 21113) on :
Shosty- no one disagrees that there are risks with antibiotics and I think your point about what happened with your daughter is very important for people to hear, but I think the point that many of us are making is that there are just as serious risks with a "wait and see" approach, particularly if the wait becomes too long.
Tracy was "fortunate" to have positive testing to confirm the diagnosis after 13 years. However, I would bet her son's symptoms started quietly and subtly when he was very young as with my children. He may not have had positive test results if he had been tested at a younger age in the early stages of the disease.
Two out of three of my children tested NEGATIVE through a "good Western blot" (Igenex) before we started treatment. One turned positive after several months of abx but my daughter, whom I caught the earliest, never turned positive for lyme (but did later have positive bart and babs tests).
Of course it is impossible to determine if Laura's child has lyme based on such little informaation, however, her post raises many red flags, in my opinion. Laura has lyme herself, and we know it tends to appear in families. She had it before giving birth. Her daughter had a tick bite attached for at least 3 hours (long enough for transmitting Lyme and coinfections regardless of how it was removed). She had a bulls eye rash. Her behavior improved on antibiotic treatment in the past!
And Laura mentioned more than just irritability and trouble getting to sleep. She said, "intermittent hyper behavior along with awful behavior, anger and irritability and difficulty settling down to sleep." I do not think this is normal behavior for a child on a daily basis who is being raised in a loving environment.
When my son started showing this behavior, I recall asking myself, "why is my son so unhappy all of the time when he is being raised in a normal, happy, loving environment?"
No one here is suggesting anything reckless such as blindly committing to long term abx. We are telling our stories, just as you tell yours. We are not telling her that her child has Lyme but are suggesting she get a CLINICAL evaluation from an LLMD as well as testing. We are telling her that these symptoms alone could definitely be Lyme/coinfections, as it was with our children.
Posted by lpkayak (Member # 5230) on :
tracy-i wrote y a really long pm and then your box was full. i still have it on my clipboard if you empty your messagees...i can't put it here
Posted by laura j (Member # 14257) on :
Tracey,
I am so sorry for your son and what he has been through. It just breaks my heart! Have you thought about giving him a fresh start in a new school where nobody will judge him based on prior behavior?
I'm thinking that if any additional symptoms were to surface with my daughter then it would be clear what I needed to do. I have the advantage of being able to start treating her at the first definite sign that something was wrong. I also wouldn't have to "prove" anything to any doctor as I would bring her to an LLMD right away.
It's very unfortunate that Tracey wasn't able to get a dx for her son until he was 13. I guess I'm lucky in the sense that there would never be any reason for me to wait that long to treat my daughter if she needs treatment. At the same time, it's too soon to treat.
I may test her through Igenex in the near future but that in itself is quite traumatic for a 3 1/2 yr. old (drawing blood). And, the information may not change anything.
I appreciate everyone's input, ideas, and experiences so much! Thank you, thank you, thank you!!!!!!
Posted by peacemama (Member # 17666) on :
I am one of the posters who has a 14 year old. I will tell you that in my experience their healing process is much easier than ours. They are so much more resilient than we are!
I would start treating. I started with homeopathics and then the little guy got strep and went on Amox, which put us on abx for many months. Now we just started the Cowden and there are noticible herxes that are manageable.
It isn't nearly as scary to treat kids as I thought it would be, and believe me, I didn't believe ANYONE who said kids can handle this sort of treatment. I was so wrong.
PM me if you want more information.
For reasons of family issues my new blog is at
tillingmama.wordpress.com for now. Still trying to figure out how to continue blogging with family that hates it!
; )
Posted by Tracy9 (Member # 7521) on :
Cody started a new school this year, high school. We have been relentless advocates despite being sick ourselves, attorneys, letters, superintendents, school boards, they just do not care.
He is getting treated much better this year, but we already went through this school with Ryan, and the same case manager, with his Lyme which was never properly treated. Now he has a PICC line too,and we have much objective evidence for Cody.
With Ryan, they were sympathetic, but we did not have the objective medical evidence. WE have it now for Ryan. And of course, we are so fortuate to have it for Cody.
I always sought comfort in tellling myself God must have thought I was very special to have given me this very special child to raise. I love him, both of them, more than life itself.
That is one thing they have always known. They know both Mom and Dad are a force to be reckoned with if they are done wrong!
lpkayak; please email me directly. I have it in my signature; can't keep up with checking too many emails. Thanks so much!!!!
Posted by laura j (Member # 14257) on :
Question: Each time my daughter took liquid amoxicillin, it stained her teeth something awful and took forever to lighten up after stopping. Her teeth have never been the same since. Has anyone else had this happen?
Posted by Shosty (Member # 12232) on :
I and one of my kids also had positive tests only after treatment. Antibiotics healed this daughter, but I am still not much better despite 6 years.
Another daughter had brain (and gut) damage from the antibiotics, in a reaction noone has yet been able to explain.
So, we have to honor all points of view on our house, and they are different for each individual.
Posted by Hides1 (Member # 6348) on :
All 5 members of my family have Lyme and coinfections. Not all of us had rashes and known tick attachments. It is thought my yougner son , now 10 got it from me during birthing or breastfedding- no way to ever know for sure. But when he was younger he definitely had the ADHA type symptoms- since Dr. J has treated him and found all coifnections including Mycoplasma my son is like a different child. He doesn't run down the halls of school like he did in first grade. He doesn't wiggle in his chair at school. He makes direct eye connect, listens, gets perfect report cards, is a star athlete and is in the gifted program at school. All I can say is that if I did not take him to Dr. J and if we did not taken him for Igenex labs (first test was CDC positive) he would be a very different child today in a very different situation in life and in school. This child is completely changed and I will be forever grateful to DR. J.
As a parent I beleive many children who have Lyme have the ADHD symptoms. I have seen it first hand. Sadly, many of these kids aren't brought to Lyme docs but brought to regular primary care docs and then on to psychiatrists and put on ADHD meds and psych meds. Sadly they truly never improve.
I so wish somehow somewhere there was a medical study to prove that many kids first diagnosed with ADHA actually may have Lyme.
Posted by laura j (Member # 14257) on :
Hides1,
May I ask at what age you started treating your son and for how long?
Posted by Stacyb (Member # 13084) on :
Laura,
When I was in doubt with my 2nd son I would take notes on his symptoms. I did this for months and could see a pattern with several symptoms. I could see that this once artistic, patient child was having issues with his neatness in writing too. I am no expert but I could see that both my kids had Lyme and I was able to tell what co-infections they had to from taking notes on their symptoms.
I would rather take a chance and a trial of abx for months to see if any symptoms improve then to wait any longer IMO.
Posted by Shosty (Member # 12232) on :
Hides1 had a positive Lyme test to go by, when making the decision to go to Dr.J. and put her child on antibiotics.
Laura J. should first get Western Blots done (not Elisa).
If those tests are positive, the way is fairly clear, at least for awhie.
But if those tests are negative, she will have a harder time deciding what to do.
I say this with full knowledge that testing is unreliable and that many people convert to positive once treated.
It is just that, as a parent, it can be hard to take on a risky treatment for one's child without the positive tests that make you feel better about it.
Especially when the symptoms are "only" behavioral.
And, when dealing with mainstream doctors once our kids are on antibiotics, we are vulnerable to investigation for this course of action.
Posted by tick battler (Member # 21113) on :
Laura - the blood draw for your daughter does not have to be traumatic at all. You can get your pediatrician to prescribe some numbing cream (EMLA) so that she won't feel a thing! My kids NEVER cry when having blood drawn because they don't even know it can hurt. You put in on about an hour before the blood is drawn.
I had the same fear about the blood draw being traumatic and unfortunately that was one of the reasons (besides my pediatrician telling me it was not Lyme) I delayed by many months getting my first son's Igenex test done before I had him diagnosed. (When I started suspecting Lyme, I had Igenex testing done on all of my children at the local hospital before I even went to an LLMD.)