posted
Hi new here, but unfortunately not new to lyme. Quick background. Brought my 5 yr old to the Dr. (Sept. 06) because of flu-symptoms. While there I showed the Dr. a red circular rash around his belly button. I asked, "could it be lyme?" Dr said, "No" & questioned me about different soaps etc. I had a gut feeling then, but decided the Dr. must be right. Kicking myself in the butt.
Fast forward to May 07. My son woke up unable to walk, his knee had swollen to three times it size. Diagnosis, lyme. Went thru 2 rounds of antibiotics (amoxycillin) and things seemed to quiet down. (though he still tests positive). All quieted down, except for frequent vomiting. Pedi sent him to a gastrologist, after testing, gastro thinks it must be reflux. Prevacid didn't seem to make much difference. My son still vomits a few times a week, he's nauseaus almost every day.
For the past month, my son has been complaining of tingling headaches & "seeing things". I didn't think too much of it until he informed me that I should make him an appt with an eye dr. because he was seeing "whales, dolphins & fish that wanted to take me away." He said, "I know I don't see things that are actually right, because yesterday I saw a bug blowing bubbles, but Sammi (his sister) didn't"
Pedi sent us to a pediatric neurologist. After giving him a brief history, first thing that the neuro says is he doubts this is lyme. Goes on to say that hallucinations (along with tingling heachaches and vomiting)are almost unheard of with lyme. Son passed the neuro exam and spoke with the Dr. (For a 5 yr old, he's pretty well spoken). Dr. said he believed he's having "complex visual hallucinations" but again stated, doubt lyme is the cause. He questioned us about psych history in family (none), any changes at home (none), or if he was an overly-anxious child. (he's not). Dr. said that these kind of hallucinations happen primarily because of anxiety, and then said it might just be a "phase". He did say he'd take it seriously, and has ordered an EEG and MRI.
I learned one thing today, because of my son's young age, it will be hard to have a Dr. believe him. I do not believe this is a phase or something pretend my son has made up.
When he learned that he needed to have more tests, my son asked why? I told him because your eyes are fine. (He believed it was a problem with his eyes). His eyes misted over and put his head in his hands and said, "If my eyes are fine, then why am I seeing things?" I told him it might be his brain.
I live on the northshore MA, have the name of one lyme specialist (Dr D in Boston). Considering going to see Dr. J in New Haven. Anyone else have similar issues with their children? Where did you turn for help?
I know I said, "quick background" but guess I had lots to say.
I respectfully disagree with the neurologist that you saw. Headaches and GI issues are indeed a part of lyme.
Lyme can also cause neuropsychiatric symptoms in both adults and children.
You might want to check the columbia lyme research center web site to read up on the neuropsychiatric manifestations of lyme.
I can only speak from my own experience with my son (who is 6 and has been in treatment for a year). His physical symptoms faded the quickest, with occasional manifestations up until recently. His behavioral symptoms were very persistant, but have also improved with time.
We have seen impulsive behaviors (throwing things, aggression, making threatening statements) compulsive cleaning (scrubbing floors with a toothbrush for hours) and very distinct personality changes, which typically occured in the afternoons, between 3 and 5.
All of this has cleared up with treatment, his symptoms at this point are limited to encopresis (bm accidents) which is improving in that we have more clean days than soiled (he used to have accidents 3 to 5 times a day) and a recent EEG shows temporal lobe seizure activity, which may or may not be lyme related.
Night sweats have decreased considerably, and he finally has the energy to keep up with other kids.
I know that doesn't sound great, but it's a lot better than where we were at 6 to 9 months ago.
I hope that you are able to get your child into see an LLMD soon, so that he can also start to get better. This is a tough illness, for kids, and for their families.
As to the hallucinations, I cannot say for sure that they are lyme related (that's why I suggested the Columbia site) but I can say as an LCSW that worked for years with the mentally ill, that psychosis in 5 year olds is EXTREMELY RARE. As a mother, I would say, do everything you can to rule out all possible medical conditions that could be causing this symptom, including Bartonella and babs, before you go and embrace a psychiatric diagnosis.
Typically, psychosis presents with additional symptoms, like a significant drop in level of functioning ie:your child is no longer able to do things that he was able to do previously, like dress himself, recognize his letters, tie shoes, ect.
Try to see if this symptom occurs at specific times of the day (in the afternoon, when tired). True psychosis can occur any time day or night, not just in the afternoon.
I hope this is all helpful, and that you are able to find more answers for you child.
Feel free to pm if you want to ask questions as well.
Take care, and hugs for your child. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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bettyg
Unregistered
posted
songbird,
please edit your post by clicking PENCIL which opens up both subject line and BODY TEXT.
now go down towards the bottom and delete dr. D'S LAST NAME....
you can show Dr. D in Boston, Mass, BUT NO LAST NAMES EXCEPT FOR DR. CHARLES JONES *************************************
since he currently has health dept. charges against him.
i'm sorry it's so confusing!! click edit when done! thanks! *******************
read the med descriptions your pharmacy gives...what are SIDE EFFECTS? HALLUCINATIONS...are they listed? if yes, contact whoever it states...pharmacy or the company who made this!!
best wishes to your son/you!!
my husband was on parkinson's pills, amandydine, sp, and taking an extra pill, 3/day caused him big time hallucinations, and he talked all night long in long conversations with me ... did NOT remember a thing!
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
songbird,
I'm sending you a pm.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Bird, I am not a Dr but have lived thru this Hell long enough to know that most Drs don't get it.
And yes, hallucinations can be part of this. When my daughter was at her worst with IV abx herx's she saw a lot of things. I think a woman and child were often coming out of her closet.
She also heard things...When the brain is infected, anything can occur.
Good luck . lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Yes, hallucinations are part of lyme (could it be bart too?).
Your child must be very bright to be able to communicate this to you at such a young age.
Bart treatment put the oratory hallucinations to and end for us.
Hang in there, and we wish you well.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
There is a mother here who has posted that her little girl was drawing terribly sad and depressing art work. I think she was just about 3 years old.
For a child who had been bubbly and cheerful and engaged - this sudden shift was alarming.
Turns out the kid had bartonella and after treatment began - in a matter of days - she was all cheery and herself again.
I saved that post to my file, but I can't figure out how I coded it and can't find it now.
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