posted
Help! It's been one week since my son started kindergarten, and the he has become just flat out beastly! Since the onset of his Lyme, we have had episodes of behavioral stuff, tantrums, some ocd-like stuff, and initially some impulse control issues, all of which has occurred mostly in the afternoon, when he appears to be the most symptomatic. But since starting school, it has definately escalated. I know that many kids with Lyme also end up with dx's of add, adhd,ect., and since the behavior typically occurrs during a specific time of day, I'm assuming that it is a Lyme thing plus the stress of a new environment (school).
Any tips from other parents out there?
also, I would welcome any advice on how to get him to take his probiotics. He thinks they are making him sicker, and that, more than anything else, sets off the bad afternoon cycle.
His Dx is chronic, we think the initial bite happened either in May (fatigue since then), or sometime last year (GI issues since then), with a secondary bite that occurred this summer and brought out the worst of the symptoms.
He is in pain almost every day. Two days ago he had trouble walking. I don't blame him for having melt downs, I just want to know how to help him. Thanks. KP
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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May I suggest that you set up a meeting with the school nurse/teachers and anyone for a support team. You want to catch this before he gets labeled. They can set up a plan to deal with his issues.
For instance, his teachers need to understand that when he has behavioral issues, it is the disease causing the problem and not that he is a "bad kid". He may just need to be removed from the room or whatever for short periods of time. Or "rest" time instead of recess.
My 6 yr.grandson also has the same issues, but hopefully they have nipped it in the bud by meeting with the "team". My daughter has sent much information to educate the nurse/teachers at his school. Lyme is rare here, and they just don't know how to deal with it.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
MagicAcorn
Frequent Contributor (1K+ posts)
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posted
He's five and that may be how how he deals with his pain. If he has Lyme he can express enough to talk about how he feels. Ask him in a nice cozy/friendly mom kind of way when you two are having a great time together.
Maybe he knows in school he has to tough it up, and when he gets home he can be honest. My son was cranky when he was hurting. A real brute sometimes.
The only probiotics my son took was live yogurt cultures in drinks he likes anyway.
My son developed allergies to gluten and tomatoes with his Lyme that later on after treatment went away. Tomato sauce sent him into a frenzy and he would have outbursts.
Also my son needed to wear prescription sunglasses in kindergarten because of light sensitivity. He and I both had that very bad. It made both of us very cranky.
Because it happens in the afternoon I'd check food allergies and the light sensitivities (recess?) that can be symptoms of our illness first.
If they turned out not to be the problem I'd say ask your doctor for some more advice.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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posted
I have met with the teacher and the school nurse,and, fortunately, he has not exhibited any behavior problems at school. It's almost like he's holding it all in and then once he gets home.... The behavior worsened exponentially when he started school. It is a new school, and he does not know anyone there. He did well in private pre-K, I have to wonder if the stress of changing schools has been too much for him. I'm not saying that he didn't have rough days before, but it had eased up considerably, until the 1st day of school.
He is indeed very sensitive to light, and also says that it is too loud at school. yet at the same time, when he is not feeling well he tends to yell. A lot.
My mom says that he's abusing me and my husband with this behavior, that we really need to do something about it or we are going to have REAL Problems down the road. She says that he is manipulating us by using his illness as an excuse to behave badly to get what he wants.
Obviously she is not a great support.
My husband tries to be supportive, and often his return home from work brings that much needed relief, as long as the tantrums have winded down by then and HE doesn't explode as well. But generally speaking, Monday thru Friday he is not there for the worst of it.
Thank you for the advice/support. I apologize for sounding frazzled. It has already been a rough road, and it does not seem to be ending anytime soon.
I been exactly where you are with Dominic but when this behavior hit he was in second grade. He would be fine at school with minor picking but nothing major.
When he would get home it would be total melt down. Dr. C said it was due to him feeling ok in morning ect then just feeling worse as the day went on he had more aches pains and the tired he got the cranker he got.
Notice if the OCD like behavior gets worse when he is tried/hurting more. Dominic would wash his hands up to 100 times a day when he was tired.
I would get him to have rest time when he came home just totally chilling out with cartoons or soft music sometimes he slept sometimes he didn't but it did help the rage like and OCD behavior.
Once his anitbotics kicked I noticed his behaviors changing and now he has none of the OCD symptoms he had before.
As for the probotics there is a power form you can get from the pharmasist no perscription needed they keep in it the fridge and you can mix it with pudding/yogurt or even ice cream.
Dr. C has told me even if you have to mix antibotics or probotics with honey just so it gets in them! This of course had my kids singing Mary Poppins "A teaspoon of sugar helps make the medicine go down" for the 12 hour ride home!! lol.
posted
I hope Sometimesdilly notices this thread because it sounds like she has very similiar issues with her son-perhaps she will have some useful info for you.
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sometimesdilly
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hi-
just saw this. Cobweb is right- your situation sounds entirely familiar.
My DS is 5, has congenital/chronic Lyme, and many of his symptoms are behavorial too.
(Heads up- i'm blunt by nature and am over my head deeply lost in my own neuro-Lyme at the moment, so i apologize upfront if things don;t come out quite right.)
First, with all due respect to your mother, no, your child is NOT manipulating you. He is SICK and in PAIN and no doubt is overwhelmed at many levels.
He doesn't need to be disciplened- he needs your compassion and love, and reassurances of different kinds that everything is going to be OK.
You are likely exactly right when you say it is "almost like he is holding it in" until he gets home. He probably is. If so, can you IMAGINE how difficult that must be for him???!!!
I am awed by the self-control required to do that for anyone with Lyme, much less a 5 year old kid- in a funny kind of way, i think it is a GOOD sign, since at some point further down the road that self-control simply isn't possible.
I definitely agree with the advice to speak with his teacher(s). Even here in MD where Lyme is actually acknowledged to exist (!), my son's teacher had absolutely zero knowledge of Lyme- not even the IDSA' s version- until she met us.
My husband and I met with her and came prepared with info for her about pediatric Lyme that was short and easy to read. One key piece of that was the LDA's ABC's of Lyme phamplet, which you can find online and download.
His teacher was VERY appreciative that we came in to talk with her, and of the info we gave her. One big benefit of including your child's teacher is that you have another less emotionally-involved yet well-informed person observing your child for many hours every day.
Our son's teacher, for instance, volunteered to give us a written report about any incident or instance that seemed to her to be Lyme-related, and she gives me a quick verbal report every day when i pick her up.
In turn, by the by, we assured her before she could even bring it up that we understood that she was responsible for a whole class of kids, and that she should feel entirely free to call us to come get him any time she felt he was too disruptive.
His teacher also gave me a great piece of common sense advice that i find enormously helpful on a daily basis. She said that in her experience, the best way to help a child who is dealing with any problem that causes behavior s/he cannot control is to enforce the same boundaries you normally have COUPLED with extra and sometimes huge amounts of patience.
What I have always told my son when he is raging, for example, and now that he is herxing i say it a lot is, i know you are angry,and it is OK to be angry. i bet it doesn't feel good to you, but it is OK to be mad. i'm angry too when i'm hurting a lot. you can be angry, but you CANNOT hurt me/hit me/throw things/yell at daddy, etc. because you're mad.
when he is beyond listening i hold his hands so he CAN"T hurt with them and tell him i am right there, that i'm not going to let him hurt anyone, and for him to tell me when is ok enough for me to let go.
i'm pretty good at being able to pull that off, but when he has irked me beyond MY control i tell him i am going to give myself a timeout until i am be less angry.
and yes, every once in awhile i can't do that in time and i end up yelling at him and apologizing to him later for not handling my anger very well.
sigh- i'm rambling. sorry. there's a lot to say.
i think you also asked about probiotics? please look in medical for the info i posted there last week about just that(?)or do a search for "Theralac/kids."
i'm probably missing something major you were asking about. feel free to PM be anytime. as Geneal said, you are not alone.
ps- just reread your 1st post. yes, my son finds school unbearably,painfully loud at times, and a good deal of the rest of the time the noise and stimulation and bright lights and non-stop social interactions and the new/novel expectations of new adults- all of it can be and often is WAY TOO MUCH.
He craves at least a half hour of complete solitude and down time when he comes home. i give him a snack and that time,and wait for him to come to me when he wants to play or snuggle...
dilly
[ 18. September 2007, 11:58 PM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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My lyme was untreated when I was pregnant with all my kids....and even though their doc won't test, I'm pretty sure atleast 4 of the six got it.
Here the thing with Lymie kids.....atleast with mine. They hurt...it makes them cranky. Heck, I'm cranky when I'm hurting.
They go to school, they are working so hard at being good (atleast as good as they can be) that when they come home...all hell brakes lose and you get the kid from hell because they did work so hard being good and getting by at school while in so much pain.
I don't have any wondeful words of wisdom....just to always keep in mind WHY they are acting this way and just learn to have patience.
I learned to always talk in a calm voice, and always close to them with them looking right at your face at their level. Repeat things a minimum of three times.
No TV, or other stimulus when they get home. Quiet time only. TV seems to make it worse...even a small amount of TV. Ours has been unpluged for a while.
My kids are 7,6,5,4,3,and 2. So trust me when I say, I know what you are going through...times 6.
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
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pmerv
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This thread makes me so sad for all those poor little people. Of course it is stressful to spend the day away from mom and the familiar. They do save it up for when they get home. You can probably gauge their suffering by the degree of misbehavior.
Even for a well child, being in a classroom with 25 other kids is stressful. For a sick child, it's unimaginable unless the situation is very supportive. Then there are the cognitive issues which can cause frustration and defeatism.
We sent all our kids to a Waldorf school and found them to be amazing because they really make an effort to appreciate each child for what s/he is. They work with the kids on being compassionate and understanding. The environment is homey, calming and beautiful. They do a lot of physical movement, music, art, handwork, etc., much of it integrated into the academic curriculum. It also helps that they are not on the same rushed timetable as public school. Waldorf might be a good choice for children who are finding public school too stressful. The children receive an excellent, enriched education and are often honors students in their next school after they graduate.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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pmerv
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One more thing. Let your child stay home if s/he is not feeling well. Especially in the lower grades, they won't miss anything they can't make up later.
You have to ask whether you want them to go to school for your sake (so you can go to work or do something) or their own. I know a lot of home-schooled kids who are very smart and have been involved in really interesting educational projects. Kids can learn a lot at home. Usually they will want to go to school if they feel good, to be with their peer group.
I remember how the day suddenly felt more relaxed and better if I focused in on how the child was really feeling and gave up that idea that he had to go to school no matter what. I think parents feel a lot of pressure to conform to the standard of the school week and the 40-hour work week. We think something dire will happen if we step out of line.
Try asking your child, "Would you like to stay home today?" What would happen if your child did not go to kindergarten at all? What would happen if s/he missed a grade? (One of my sons skipped 8th. He played with electronics all year and now he is an electronics wizard.) You and sh/e might have the most amazing experience of your life, doing all sorts of things together.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
Thank you everyone for the words of wisdom, it helps just knowing that we are not the only ones going through this!!
I gave the teacher the ABC'c pamphlet, and spoke to her and the nurse privately. My son, on his own, told the teacher that "he got bit by a tick and that a lot of the time he doesn't feel good."
We try try try, just like the rest of you, to not yell, to not get upset, to not cry, but without a doubt it is not easy.
In honesty, as this illness has worked it's way into our lives, I keep deluding myself that each good day that he has is going to be the start of him getting all better. After 10 weeks of antibiotics, isn't it fair to hope for some improvement? But that just hasn't been the case.
As to the probiotics feedback. As per his doc, we open the caps and put the powder into some kind of delectible treat.
But that isn't working anymore, he thinks the pills are making him sicker, so it is a battle royale every time I try. I've bought frozen yogurt with active cultures, but he even at times refuses that.
To complicate matters, his appetite is poor, and he is starting to lose weight, so the lure of sweets to get him to take the probiotics doesn't even work well.
If he wasn't scratching all the time, perhaps I wouldn't be as concerned.
Oddly enough, liquid zith and ceftin are no prob with him, he actually licks the medicine cup to make sure that he gets it all.
As to the ocd stuff we've seen, it's fairly mild, and revolves around cleaning. for example, one day we wanted to clean our garage. my husband and I swept, then our son promptly had a melt down because he wanted to scrub the floors first. He then messed it back up, so that he could do it himself. The following day he had a meltdown because the bikes weren't lined up the way he wanted them, the colors weren't in the right order.
He has always been a routine driven kid that thrives on structure, Lyme has simply exacerbated that aspect of his personality.
We opted for Catholic school, given his need for structure and routine, and that is the one thing that he doesn't complain about in regards to school.
Yes, I think he is depressed and angry, because he doesn't feel good, because he feels like he can't do the things that other kids do, or that he can't do them as well as the others can.
He is a perfectionist, and even though he is keeping up with the other kids, he feels the strain of trying.
When he is feeling fairly good, he can and does talk to me about what hurts and how he feels, he can be quite expressive for a five year old.
But when his symptoms act up, he is not able to express himself, it's almost like he has lost the words. I have to ask, and even then he won't always tell me, because he's sick of being asked about being sick.
We/I will most certainly take the advice that has been offered and love, support, and care for our son, and as no doubt all of you have done, we will continue to pray that he gets better. KP
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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sometimesdilly
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hi LymeMommy--
i came back to add one last thought to my epic post and saw you had posted.
you said- "We try try try, just like the rest of you, to not yell, to not get upset, to not cry, but without a doubt it is not easy."
No, it is not the slightest bit easy, is it? And you know what- it is actually impossible. Being 100% emotionally perfect all the time can't be done, and it is WAY too stressful and unrewarding to try to stop yourself from being human.
so please be kind to yourself too on those days when you don't meet your own mama-ing expectations. i'd be surprised if your son isn't far more forgiving of you than you are of yourself.
I always do apologize to my son, the apology is heartfelt,he knows it, and he always tries to make ME feel better. He of course, being 5, has typically moved on, though it helps both of us to reconnect with words and hugs.
you said- As to the probiotics... we open the caps and put the powder into some kind of delectible treat. But that isn't working anymore, he thinks the pills are making him sicker...
I hear the logic of a 5 year old at work there- perhaps like thisd? He has been taking meds for what must seem an eernity to him, and he is not feeling better. No doubt you've told him the meds are supposed to make him better; but they are not.
So, since Mommy can't be wrong, and since he has no way of genuinely understanding being chronically ill and what Lyme is doing to him, SOMETHING must be to blame- maybe the probiotics?
Or maybe he has simply settled on the routine of this one battle to make a point of how he feels about having to deal with all of it every day several times a day.
Either way or something different, being bribed with something sweet obviously isn't trumping having the battle.
Have you tried giving him chewable probiotics? They aren't as powerful as capsules, but they're definitely better than nothing, and if your son is like mine, he'll eat them like candy. I let him have 3-4 at a time. At night I empty a capsule of Theralac into the hole of a very small slice of banana, cover up the hole with mushed banana, and give that to him.
He thinks one bite of banana is a weird bedtime snack, but hasn't complained. Yet. Knock on wood.
You said- if he wasn't scratching all the time, perhaps I wouldn't be as concerned.
Hmm. My son scratches all the time too and complains of being extremely "itchy." I am positive at this point that for my son, anyway, it is a symptom of neurological Lyme.
Is your son's skin extremely sensitive? Can't stand to have tags on shirts or to wear or touch anything that is rough-textured?
Add in dryness,and the kid is miserable. Our ped. told us that baby/kid's shampoos and soaps are actually quite drying, as are virtually all bubble -bath products so we avoid them; Dove soap bars work very well.
The OCD stuff you describe sounds very familiar, as is you son's need for structure and routine; since my son's Lyme is congenital, i have no idea what of that is personality and what is Lyme-driven.
You said- ..he is depressed and angry, because he doesn't feel good, because he feels like he can't do the things that other kids do, or that he can't do them as well as the others can. He is a perfectionist, and even though he is keeping up with the other kids, he feels the strain of trying.
That was actually what i came back on to write about. Not being able to keep up with peers at this age is absolutely devastating. I'm surprised your son is able to do so at all, even with all the effort in the world. My son sure can no longer do so, at least not with anything physical or involving stamina.
Not being able to keep up, including with how other kids are now able to socialize has been very harmful to his self-esteem. There are days when he doesn't even have the spirit to try- which is utterly unlike my little boy of even a year ago, and VERY painful to watch.
Have you looked into counseling of some kind for your family? Having a chronically ill child is a lot to handle- i bet all of you could use the support,and a good counselor may be able to help your son with more coping mechanisms.
By the way, I completely agree with Phyllis about letting yourself and your son feel OK about not going to school -certainly if he isn't feeling well or is simply tired, but also at least sometimes to simply have an unexpected break.
I do that with my guy, and we make it special- a picnic, a get-sloppy experiment or art project, quiet time just sitting right next to him and kissing him a lot, playing super heroes....
in any case, i know it is difficult to believe right now, but your son WILL get better. It will take time...
meanwhile, take care of yourself too along the way.
hugs- dilly
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