Topic: For those who have children with behavior issues from lyme...
tickbattler
Unregistered
posted
Hi all,
One of my 4 year old twin boys has oppositional behavior issues as his primary lyme symptom. (We know he has lyme and has been treated by Dr. J for the past 5 months now.)
He still also has insomnia, which has improved a tiny bit since starting treatment (up at night for 2 hours twice a week instead of 3 times per week). His ears still turn bright red and about once every ten days he says "everything hurts," normally when he's upset about being sent to his room for bad behavior. But normally when I ask him if anything hurts, he says no.
I am having a hard time determining if he is relapsing or not. I am thinking that he is and that that perhaps the meds are no longer working. He is currently on Bactrim and Cefdinir (Omnicef).
I have been recording his symptoms daily and he seems to wake up happy in the mornings more than he used to back in August. But when I compare his behavior and mood from Sept to October, he has had more bad days in October.
I specifically recall saying to my husband back in September that our lives were getting so much easier because our son is so much more cooperative. I cannot say that now. He fights me on almost everything.
But it is strange because he will be happy and cooperative one minute and then turn into this oppositional child the next minute who talks back and says violent things and acts uncooperative and aggressive.
For example, just yesterday when someone rang our doorbell and I was talking for literally one minute at the door, he stood next to me behind the door mumbling, "go away, I don't want you here anymore." He just lashes out at everyone.
Today, when I asked him (and his brother) to go up to their rooms and play quietly for 10 minutes while I put my 2 year old down for her nap, he fought me and said he didn't want to do it. I had to count and threaten him to get him up to his room. I have battles with him like this numerous times per day. Meanwhile, his twin brother, who also has lyme, babs and bart, went up to his room and played with no argument.
When he is at his best (which I hope is his true personality when he is cured), he does not battle me like this.
Another thing that is happening again (for the past 5 days) which had stopped in September is that he is pooping in his pants a tiny bit before he makes it to the bathroom. He hides behind a chair and does this and then tells me he has to go to the potty, after he has started to go. It's as if he doesn't have the sensation there as much on some days.
It got so bad back in July and August that we could not let him play in a room by himself unless we knew he had already gone to the potty. However, he only had one accident in September.
My questions are:
Did any of you deal with similar behavior issues with your children?
Did they have relapses like this or did they steadily improve each month?
Did you switch meds for your children during treatment? How did you decide to switch?
What meds did your children take? What were they diagnosed with? What symptoms did they have?
How did you measure changes in behavior in your children?
I know we 'chatted' about this stuff in the past, so at the risk of being redundant, my son went through a lot of the stuff that your child is going through now.
Yes, he had medication changes. He hasn't taken either of the medications that your child has been on (he's allergic to penicillan related products).
His first med change was due to poor response to ceftin alone.
The second med change was done when he seemed to have plateaued in regards to symptoms.
The third change was to add zith back into the mix, as his physical sx came roaring back.
The final change was to treat babs, due to persistant night sweats.
He is currently doing very well. No more behavioral stuff at all, absolute pleasure to be around.
We have had almost 2 months accident free, after two years of no sensation when he had to have a bm.
He says that his joints hurt when he is active (jumping/running ect), but he no longer has the random flares of pain like he did last year.
He has a follow up EEG tomorrow to see if he is still having seizures.
We have actually discussed with his llmd titrating him down and eventually off of abx.
Zithromax has been the one consistant medication, and he has responded well to it. It seems to be the med that makes the difference with the potty issue. The few times he was taken off of zith, he crashed.
As to the behavioral stuff, it took at least 6 months for that to clear up, and towards the end of that time frame it would occur in a once month cycle (lyme replication cycle?).
This will get better. Symptoms will flare periodically during tx, only to get better than ever. (the old 2 steps forward, one step back.)
I found that you have to look at things over the long haul, rather than day to day. That's when you will see the progress.
I wish you the best, and hope this helps (especially the part about our little one getting better, as maybe just maybe that means our child will get better too!!)
Take care, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
| IP: Logged |
tickbattler
Unregistered
posted
Lymemommy-
Thanks so much for your detailed reply. It is wonderful your son is doing so well and has gotten over the BM issue.
I had asked Dr. J about that issue and he didn't think it was related but I really think it is. I wish my son could take zith, but it hurts his stomach too much.
Now I am thinking that my son has babesia, as I have done some research and it appears that his recent new symptoms are most likely from that. He is having night sweats, jaw pain (once) and occasional headaches (in the back of the head and neck).
Perhaps the onset of the babesia symptoms has made him more ornery. I hope that is the case rather than the current meds no longer working.
posted
As a child that was very hyperactive & extremely ADD (pre-lyme), perhaps I can offer my suggestion?
I think he's angry. Children don't always know how to express their feelings so it just shoots out, you know? He doesn't know why he doesn't feel good, why he can't have fun like the others, why he's always at the doctors. He's angry.
And, quite frankly, I'm 32 and I'm angry too at exactly the same things. I feel cheated.
I'm so glad he has you for the support! Perhaps therapy for dealing with his overwhelming emotions would help you both out? My Mom's a therapist, so I'm partial to that.
We're all just dealing with too much - no matter our age, our symptoms...and if it's us or a loved one that is hurting.
Good luck!!
Posts: 11 | From Richmond VA | Registered: Oct 2008
| IP: Logged |
Your thoughts about anger are consistant with a lot of (family) comments that I got last year when my son was at his sickest.
I agree, anger does play some role, and fear and confusion, and pain. But we cannot discount the fact that many children with lyme have very strong behavioral symptoms, that go away with abx.
Like your mom, I am a licensed therapist, which helped me cope with a lot of the behavioral challanges that came with my child being sick.
It also helped reinforce for me that what I was seeing was not a "difficult kid". Difficult kids are ALWAYS difficult. They aren't sweet as pie in the morning, then at 3 in the afternoon (every day at 3!!) they start hitting and yelling and saying that they are going to cut you into pieces.
They don't scrub floors for hours on end with a tooth brush, and cry because things aren't color coordinated to their taste.
Then magically, at dinner time, they become a nice kid again. My son went through all of this, in addition to the sore joints, too tired to walk, headaches, stomach aches, ect. And it has gone away (which if it was just anger, or adhd, or ocd, it would not have gone away, not this fast, and not with abx.)
Sorry if I come across as harsh, it is just tough to hear the "your kid is angry" line without it bringing out all that frustration as a parent. Just like it isn't 'all in your head' as an adult, it is not "all anger, your kid is just being a kid (and you're a hypochondriac mom!)" for our children.
Tickbattler,
One thought for you, we found out this summer that my son has temporal lobe seizure activity, after getting an EGG done. Although no one can tell for sure that the seizures are caused by lyme, I can say that based on a recent follow up EEG, the seizures are improving (weaker, not as close together).
Lyme (and some co-infections) are known to cause seizures, and when a person has a seizure, they often lose bladder and possibly bowel control. Seizures can also cause distinctive personality changes, which is why our doc had our son get an EGG done.
I don't know if your child's behavioral stuff is as clear cut, by the clock, night and day as my son's was, but if it is, this might be an avenue for you to explore.
Best wishes for you and your little one, and StillSick, I'm sorry again if I came across harsh!!
Take care, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
| IP: Logged |
tickbattler
Unregistered
posted
Thanks for all of the replies. I agree with lymemommy that I don't think my child is angry for several reasons.
First, he is not old enough to be bitter about what he is missing. He has probably been sick since as long as he can remember (age 2) and he is 4 years old now.
Also, he is not really missing out on what a normal 4 year old would do. He goes to preschool 3 mornings a week. He can run and jump and act like a kid. But he has insomnia and can get really manic and oppositional. Most days he appears to be pain free. But sometimes I think he just lives with things that are uncomfortable since that is all that he knows. He doesn't know what normal is! He naturally gets grumpy and difficult when he feels tired or just not right. He is already a very willful, high energy little boy, so with the lyme on top of it, he can become pretty challenging.
He is making improvements, however. He doesn't cry in his sleep anymore. He rarely has night terrors. He wakes up happy more often than he used to.
He had a great report last week from the school in that he is no longer considered to have behavior problems like last year. His attention span has improved and that helps his behavior. While the teacher thought that he had matured over the past 5 months, I think it has been the 5 months of lyme treatment that really made the difference.
Lymemommy - thanks again for the info - I do have a couple of follow-up questions if you don't mind.
You mentioned that your son has seizures. Are they visible to you or do they happen silently? Did your son act differently during the seizures? My son can be sweet as pie and then when we ask him to do something that he doesn't want to do, he is impossible. So I don't think his behavior changes due to a seizure at that time.
My son's behavior is not like clockwork like your son's was. We have some fairly good days and some not. Then we have some days where he is sweet in the morning and horrible in the afternoon, or just alternating from sweet to oppositional all day long. He is normally more difficult after 4 pm, however. I think he gets really tired by then.
When you mention the behavior symptoms would occur in a one month cycle, what do you mean? Was his behavior bad for a month or was he bad for a few days every month?
We started my son on Mepron about 6 days ago despite negative babs testing, and I have noticed that from the 3rd day on, his night sweats have increased!! I guess this is a sign that he does indeed have babesia? Did your son have an increase in night sweats when you started babs treatment? Did he test positive for it?
I have also unfortunately noticed that he has become more violent since starting the Mepron. He hit me when he didn't get his way about something and on a separate occasion, he took a cardboard box and whacked his brother on the head with it. Today was a better day, but it's pretty scary to see him act that way.
Thanks again for all of your info. It really helps a lot. I am so glad to hear your little guy is doing so well. How exciting to be thinking about ending the abx.
Dr. J estimated that my kids would need between 1 to 3 years of treatment. How long has your little guy been treated so far? I don't recall, do you take him to Dr. J?
I have a 6 year old who has lyme. Misdiagnosed when he was 4, properly diagosed after his knee blew up 9 months later. Dealing with lots of late stage lyme symptoms here, though lately, all has been quiet. Well quiet until a few days ago.
Is now complaining of neck pain, hip pain, headaches & gi upset. Last night he told me he was "seeing things again". Last summer he was having visual hallucinations. Oh, and to answer your question, yes, we have behavioral issues here I'm certain are related.
Not so much oppositional, as moody. Calm, happy one minute and the next angry, whining.
Have been through the ringer wiwth Dr's/tests here, (has 7 positive bands.) Insurance won't pay to see Dr. J. Seriously, not sure we can afford 3 years of treatment out of pocket. Just got a new pedi who told me he has no probs referring out, so we'll see where that leads us.
If things get too ugly here, will most likely see Dr. J anyways, hate this!
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
tickbattler
Unregistered
posted
songbird,
Sorry to hear about your son. All three of my children are infected (4 year old twin boys, 2 year old girl), and it is horrifying. I think we caught my 2 year old earlier than my boys, so she is doing the best on treatment after only 2 months of azithromycin.
My other 4 year old whom I did not mention in this post has recently had migrating muscle pain symptoms return after 2 months of no pains, similar to what your son experienced. It is so upsetting. And he has a bad headache which never goes away. He has tested positive for two strains of bart, babesia microti and lyme.
He had started Mepron a couple of months ago which didn't seem to do much and then when he added artimisinin a month ago, his night sweats disappeared but the muscle pains returned. I was concerned that the meds treating his lyme and bart had stopped working, but Dr. J thought that he was probably having a lyme herx since the babesia was finally getting knocked down.
My son just seems to be getting worse and worse. The muscle pains are more frequent. His headaches are certainly no better, and may be worse. The only improvement I have noticed is that his fatigue level seems a bit less and his night sweats are gone most of the time. (The babs clearing?)
If this is a herx, I wonder when it will end! It has been almost a month now. My concern is that the meds are no longer working. It is so hard to be patient when you have to watch your little ones suffer.
posted
Two out of 3 of my kids, and myself, have all been sick with Lyme,so I understand what you are going through.
That said, I think it always good to take every symptom and consider other possible reasons for it, besides Lyme or other tick-borned disorder, or herxing. I say this from experience.
Some of the behavior, and changes in behavior, can be normal developmentally. I don't mean to state the obvious here. But kids do have a 6 month swing from doing great to being oppositional and difficult, and back again, which can look like relapse or improvement.
Oppositional behavior is pretty normal, in and of itself.
I also wonder if any of you observe changes in mood or behavior in your kids after eating. In our household, we have cleaned up some of our Lyme symptoms with food allergy treatment.
When you are dealing with Lyme in kids, as you all well know,it can be hard to sort out what is the illness, what is a herx, what is a medication side effect (another thing to consider, because some antibiotics have psych. side effects), and what is a normal developmental issue, or even the result of being sick (the emotional side of illness has a physiological basis).
But I think it is good to examine everything with an open mind, because there are a lot of possible explanations. I wish, in retrospect,that we also had not considered some things to be Lyme...it delayed getting to the real answers. (That doesn't meant that other things weren't, in fact, Lyme).
Sorry I took a while to get back to you, have been having computer problems.
Regarding my son's seizures, he has absence seizures, that only last for a couple of seconds. (longer if several happen back to back). It is VERY hard to see when they happen, and when you do see it, he is just staring off, doesn't seem to hear you.
We initially had this looked at due to behavioral issues, as seizures can cause distinctive behavior changes. They are also more likely to occur when a person is very tired (thus my son's behavioral stuff occuring in the afternoons, when he was the most tired.)
I didn't think that there were any seizures, but had the EEG done to rule it out, and I was wrong.
As to the once a month thing, what I meant was my son would have an increase in sx for about one week out of each month, then as the sx faded, he would be sx free for 3 weeks, then symptomatic for a week (just like PMS for some of us girls!)
From what I have read here, many people will have a monthly increase in sx, which is thought to be tied into the Bb replication cycle.
As to coinfections, my son tested negative for all, but responded to zith (used for bart in kids) and mepron. As one doctor said, the proof is in the pudding....
The nightsweats didn't increase when he started Mepron, as he was already having them every night. They are happening roughly 50% of the nights now.
We were lucky, no behavioral herxes on Mepron, but many do have them.
As to diet, our son is a pretty picky eater, has had a very limitted and BLAND diet. Since dx with lyme and of course abx, he has little tolerance for anything with any flavor at all. Foods that he used to like like brocolli and milk and cheese, he stopped eating because they seemed to irritate his tummy.
Although we didn't intentionally do any food eliminations, we did follow his lead in regards to what he seemed to have trouble with.
Given that he only seemed able to tolerate a limited diet, we didn't get into food battles with him. We figured there would be time enough for that battle when he got better.
Take care, and as always, i'm more than happy to help out, especially with the potty sx, as it is such a difficult one and it seems that docs are reluctant to attribute it to lyme (you and I are NOT the only ones with kids who have been through this though!!) You are not alone, we are always here to help you get through this!
From what you describe, I do think at least one of my boys may be having seizures, as he often stares into space for a period of time and I have to call his name several times to get his attention. He is much worse than his brother with this.
I'm wondering if it will help treatment in any way for us to go through this testing? Does it change the approach at all or is it just something that helped explain his symptoms to you and helped show progress? Is the EEG test difficult or painful? What does it entail? Who did this for you? Did your LLMD suggest getting it done?
I do think my son has brain issues since he is seeing colored spots much of the time.
With regard to food, this same son is having a hard time. Every meal is a struggle to get him to eat. He never was a very good eater before and I have noticed that he eats even fewer things now. I know he needs to eat for the Mepron to be absorbed, so it is really tough. Your point is good about letting him take the lead on this. I have started to do this lately just to get food in his tummy.
Just one more thing- you said that his night sweats are now cut in half. Just curious - how long has he been on Mepron thus far?
EEG's are totally painless. They use some sticky goo to hold sensors in place on his head and over his heart. Then (this is the hardest part!) he has to sit still for 20 to 30 minutes, preferably with the eyes closed.
That's it.
Finding out about seizures certainly helped explain a lot of symptoms. In our case, a follow up EEG has shown a decrease in sx, so we know things are getting better.
I dont know how it would have affected the course of tx if we had found out about the seizures earlier. But as we found out rather late in the game, and my son is doing very well, it hasn't had much impact.
You'd really have to talk to your doc about that one, as your child is still pretty early in tx and pretty symptomatic.
Take care, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
| IP: Logged |
Shosty
Unregistered
posted
Our daughter has had complex partial seizures (which means she was also "absent" and missed part of what was happening). The EEG involved a lot more for her. She had to stay up all night, and the test was quite long, and involved flashing lights for quite awhile. This was when she was 11.
Last fall she had another bout of them. The seizure-like activity also involved maybe 3 days of being unable to spell properly or remember anything she studied, problems using a computer (triggers problems),and disorientation.
The EEG was awful. It took about an hour, and again, flashing lights. This time, she was sick for 4 days afterward, with migraine, dizziness, cognitive issues.
Neither test gave us any information. I felt badly for putting her through it. And negative tests can be a problem for Lyme parents, as we all know. More ammunition for other doctors.
It can be very hard to catch seizures on an EEG, unless they are happening all the time (so not catching activity on and EEG would not necessarily mean improvement with treatment for tbd's).
For our daughter, the events at 11 were probably seizures, triggered by amitryptilene, (which lowers the threshold, but you have to have a seizure disorder in the first place for it to have that effect) but the events last fall may have been atypical migraines.
She was treated for Lyme a few years back, but the pretty long-term antibiotics did not affect this stuff at all. She now uses progesterone cream, with an innovative MD who is head of neurology at a major hospital supervising. It has worked great.
The tummy issue with LLMD's meds became a true crisis for our daughter. The meds caused it, and she cannot go back on them. She has suffered far more from the side effects, in some ways, than the illness itself.
That is why I tend to suggest looking at things a little differently. Young kids on mepron, without any positive testing- that sounds like a doctor who is not responsible or careful enough with young kids.
IP: Logged |
posted
"If this is a herx, I wonder when it will end! It has been almost a month now. My concern is that the meds are no longer working."
And this is a worry of mine. After reading here, I hear so many parents say that the effects of abx ended up being worse than the disease. I continue to read in the hopes of learning about alternative methods parents are using...
Not sure if my son has co-infections, (I suspect he does), but his nightmare pedi (who misdiagnosed him) wouldn't check. Have a new pedi we will be following up with, he said he will refer, we'll go from there. Son just had tonsils/adnoids out, so letting him heal from that first.
So sorry you are going through this with 3 of your children, can't imagine. Breaks my heart watching my one struggle... (my other 2 are unaffected).
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
Once on that website...use the binoculars on the top of the screen(click on them) and then put in the word, copper, into the search window that will appear.
DPen. Rx - abx. might help.
"These nutritional steps help, but sometimes patients must also take a copper chelator, usually
d-penicillamine,
which grabs the copper and removes it from the body. D-penicillamine (brand names DPen or Cuprimine) also extracts zinc from the body and this is another reason zinc is supplemented."
Bb has "zinc fingers"...the Cu/Zn balance is thrown off.
DPen is currently being tried to treat lead poisoning too.
"Penicillamine Chelation for Children With Lead Poisoning
This study is ongoing, but not recruiting participants."
The best means of testing for copper toxicity are 24-hour urine copper or serum ceruloplasmin level tests. Red blood cell copper levels may be a good test to measure increased copper levels as well.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Shosty
Unregistered
posted
Alternative medicine is very helpful for kids (and adults) dealing with tick-borne illness. It is expensive, but sometimes a practitioner can be found who takes insurance.
The choices are very overwhelming, so it is definitely good to find someone to help and guide you.
If any of the parents here DO choose to use antibiotics, it is good to see an alternative person (or LLMD) who can help their little bodies with the effects of those antibiotics, mepron, flagyl, etc.
Antibiotics are not a cure-all, for sure. I was absent from this board for a few years, and some of the same people are still here, including parents.
posted
My son had an EEG and MRI. EEG was no big deal, toughest thing was that he had to be sleep deprived. He tried to sleep the whole way there and while we were waiting for the test. Once the test started & he was asked to take a nap, he couldn't, lol. He finally did take a little nap before they gave up.
Lots of leads painlessly stuck on with a gummy substance. One part of the test had strobe lights. All in all, EEG didn't bother him, no trauma.
No seizure activity picked up, MRI normal too. But still son is positive lyme & having bizarre symptoms (hallucinations), still searching here. Another appt. Friday.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic