Topic: Update - What should I do about my little boy?
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I have a question. My five year old boy has been off antibiotics for quite some time and was symptom-free for many months.
My husband and I were hoping that he'd never get symptoms again.
Lately he's got me worried, though, because his behavior has changed. He is aggressive and attacks other children with kicks and hits. He is sarcastic and abusive with his words, too.
He worries about everything. Lately he's been holding his hands up to keep them away from "germs" and "poison". He spits all the time to get the "poison" out of his mouth.
He always asks me if he has poison on himself. I always try to reassure him that he's fine but he's never satisfied.
When I told him swimming lessons start up soon he screamed at me that he didn't want to go. Last spring his brother dunked his head under the water during a lesson and now he's terrified of swimming.
Unfortunately, he recently saw a news story about an airplane crash and now he says he'll never fly in a jet again. Tonight he was lying in bed staring at the ceiling and when I asked him what was wrong he just reiterated that he will never fly again.
I feel he's demonstrating OCD behaviors, aggression, and anxiety. I have an appointment with my LLMD next week and want to talk to her about all this.
Do you all think that antibiotics will help him with these issues? He had a positive Igenex test for Lyme about a year ago but was symptom-free so my LLMD didn't put him back on antibiotics then.
I want him to be the happy, sweet boy I know he is! He was the gentlest baby you'd ever want to meet. How I hate this disease!!!!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It is likely a manifestation of the infection based on the pattern. I would retest the boy with an IgM and IgG Igenex test. The IgM is of more concern, and yes I think a course of antibiotics will likely be warranted.
It is not certain that this is the cause of his symptoms, but it is the first stone I would turn if a child with a positive test began manifesting this pattern.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I am sorry your family is having to go through this. I hope your son starts to get back to his happier former self soon and I too would suspect bartonella.
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posted
Not sure by your comment if you are saying that your son had a positive lyme test but no symptoms so he has not been on antibiotics since that test?
I would not stop treating lyme until his Western Blot came back IgM negative.
Sure sounds like he's having some neuro issues - maybe asking about poison means his skin is having weird sensations?
I would get an IGeneX Western Blot and start treating asap and monitor his behavior during treatment, write things down!
My 11 year old daughter has lyme so I know how sad it is to deal with a child having lyme.
Trust your instincts.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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So sorry you are going through this with your little one....I would also think antibiotics couldn't hurt... not taking them might...especially if its neuro symptoms.....
Just curious ...have you asked him why he thinks he has poison in his mouth or on him?? ...and what he thinks the "germs" will do to him??
It breaks me when I hear of a little one going through this...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
My grandson had the same behavioral problems before he was diagnosed. His mother also has lyme, so she recognized that it might be the cause of his problems; also a little OCD.
He has been in treatment for just about 1 year and has totally turned around to be the wonderful kid he was before.
Good luck with your son; get him to an LLMD. If you don't have one, go to the "seeking a doctor" section and people there will help you out.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
My son (age 6) also had many of the behavioral symptoms that you described, and after a year of treatment they have resolved.
He currently tests IgM positive for lyme (we didn't test the IgG with his most recent test, but it was positive last fall), and has a few lingering symptoms (nightsweats, still tired at times, abnormal EEG) so treatment continues.
To me the decision to not treat a child because they are asymptomtic is difficult. Small children often do not recognize what they are experiencing as a symptom (its normal to them) so the don't communicate it to you, or if they are very young, they don't have the verbal skills to tell you what they are experiencing.
As a mom, you have to trust your gut and look for answers if you feel that something just isn't right with your kid.
I wish you and your little one the best, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks for your support, everybody. I feel really sad about the situation with all my kids.
Some of you may remember that I have three sons - the oldest with Down syndrome/autism, the middle with milder autism and a recent positive Lyme test, and the youngest born with Lyme, ehrlichia, and mycoplasma and now exhibiting the troubling behavior.
We have an appointment with my LLMD next Monday. I will bring up bartonella. I'm sure she will put my two youngest sons on antibiotics and other protocols. Soon I will get an Igenex test for my oldest, too.
My husband told my youngest not to roll around in the neighbor's grass last spring because pesticide signs had been placed. Ever since, my son has had a thing about "poison", but it's only in the last week that he's been holding his hands away from his body and spitting.
I'll let you know what the LLMD has to say. Take care, all.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Lymelady in NY,
There's a post in general that I wrote what I thought was the problem with psychological manifestations in relapse of previously physiological manifestations of lyme disease and the brain.
I don't know how to bring it over here so I will ask LouB to do it for me....
Are you aware that in the conference in ST PETE this past January, a definite link between AUTISM and TBI's were found?
You might have to do a search on it because I don't remember all the details.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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bettyg
Unregistered
posted
tony,
i did a search in support using your member no. and psychological manifestitations ... got nothing in subject and text searches..
lou's on vac; jenifer is moderating plus her dad, bill!
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks, Tony Z - yes, I'm aware of the autism link and I completely believe it's true.
So, I feel hopeful that our LLMD can help us out with this.
Thanks for the info! - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I second Tincups nomination to check for bartonella..my son had all the sypmtoms you are describing with bart..and WORSE when he herxed on bart meds..
finally , after treatment all of the aggression and anxiety went away..it is nice
LIsa
Posts: 14 | From Rhode Island | Registered: Sep 2008
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
LymeladyinNEWYORK and BettyG or anyone else....
That post of mine in General Support is under a thread started by....
MommaK...titled....Lyme symptoms better, but now dd is so TOUCHY! dated 15 sept 2008 @12:11PM.
I wish I knew how to yank it from there and plop it down here....sorry....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
I did not know which one you wanted copied or I would have copied and pasted it here.
Posts: 4681 | Registered: Oct 2000
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tickbattler
Unregistered
posted
Dear lymelady,
So sorry you are dealing with this with your young child. I can relate, as my young children are infected too.
Your description of his behavior sounds exactly like one of my twin 4 year old boys. Until he started treatment 4 months ago, he was becoming increasingly aggressive and anxious about everything. He would freak out this summer if there was any hair on the floor of the shower at the swim club. He is afraid of flying. He was scared to go to soccer this past spring because there was a male soccer coach.
He would constantly antagonize his siblings. He would talk back and fight me on everything. He would wake up unhappy in the morning and talk back immediately when I asked him to do anything. He would say violent things. He would become manic in large crowds or parties and be aggressive towards the other children.
I was just commenting to my husband tonight how much easier our life has become since we are starting to get our little boy back. He has probably had lyme and bartonella since he was two years old.
I would definitely start treating him again, based on what I have seen with my son.
Best of luck to you. You are a great Mom to be so on top of this.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I went to see my LLMD. I told her I wanted to talk to her about my son. During my exam, she asked me, "What do you want to tell me about him?"
I told her he sometimes complains of painful knees. Before I could get another word out, she pounced on me.
"I've told you time and again that your son is still infected with Lyme, but you won't listen! All your sons are infected! You want to be in denial and won't get them any treatment."
I didn't say anything, but she couldn't be more wrong about me!! I was about to tell her about his phobias and aggression when she interrupted me with that outburst.
The reason my son's treatment ended was because he went for months without any symptoms whatsoever. SHE's the one who said she didn't need to see him anymore.
I was merely trying to ask her for more treatment now that symptoms have reappeared.
Well, she didn't want to talk about him further because he didn't have an appointment. She said she'd be happy to see him in two months when I, his mother, come again.
Sigh. You know what? I'm sick and tired of being judged by every Tom, Dick, and Harry around. People yell at me without knowing all the facts.
I am really fed up. I was rarely treated this way before Lyme disease came into my life. Now it seems I'm apologizing and explaining myself to every person I come across, even my LLMD.
In the meantime, I have to wait two more months for his treatment to begin again.
He's on omnicef right now for impetigo. I hope that helps him some.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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