Topic: Has anyone had a child with Lyme whose herxes are mostly psychiatric?
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
We are trying a short course of Flagyl with my 5 year old son to see if we can move beyond the plateau he as been on for over 6 months.
He has been on it for 12 days so far and in the beginning did have a little joint pain (for the first time in months) and some headaches but the most significant symptom has been manic, aggressive, hyperactive, OCD, oppositional behavior. His attention at preschool has completely deteriorated. In music class he is especially bad b/c of the stimulation.
I am wondering if anyone has experienced this with their child, and if so, how long did it last and did he/she improve after taking a med which caused these symptoms?
I am hoping that he will be improved once we stop the flagyl in a few days. We are trying a 2 week pulse. I haven't seen any improvement in behavior so far, although he is no longer having physical symptoms herxes from it.
Thanks,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
If these responses are possible in adults I don't see why they wouldn't happen in children.
Think of these as symptoms just like the pain. I hope you're not taking the behavior, words etc personally. It's the sickness, not your child.
Also ask your LLMD if it could be a sensitivity reaction to the abx.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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lymebytes
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Member # 11830
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These side effects, or even herxing can cause this in adults, so I can just imagine a small child.
My son did Flagyl, but he was a teen, he was hallucinating on it and depressed and just completely out of it. He was so bad, I wanted to take him to ER, but he wouldn't let anyone touch him.
His LLMd recommended he "mop up" (detox) the toxins with Activated Charcoal, sent me to the store to get it and I was just livid. I thought what kind of nonsense is this? I cannot tell you how well it worked. I was so grateful to have him "back" no longer hallucinating and depressed. Seriously the most amazing herx "recovery" I have ever seen and 6 in my family have LD.
Ask your LLMd about detoxing. Activated Charcoal was a miracle for my son. Some doctor's worry that it can absorb the medications, but our LLMd told us to keep the A/C 2 hours away from any meds and it would be fine and it was. A/C is said not to aBsorb, but to aDsorb, there is a difference.
Here is a thread I wrote about A/C because I was so amazed by it, but do check with your doctor before starting anything new. You might want to ask about using a lower dose of Flagyl and/or pulsing to make it more tolerable for him: http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=286
momintexas
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Member # 23391
posted
Yes. My son is having a lot of the same issues.
He goes through various different things. Depression, anger, severe anxiety, difficulty with concentration and now this week....hallucinations.
He's only on Amox and we are only in week 11.
It's tough to watch our kids suffer. I understand how you feel.
Posts: 1408 | From Tx | Registered: Nov 2009
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julielynne4
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posted
When my 6 year old daughter is on antibiotics for lyme (she currently is only on nystatin), her herxes are almost completely emotional/psychiatric.
She becomes SO weepy,cries over everything (and all day and night). She has rages, major mood swings, MAJOR difficulty falling asleep.
Another herxing symptom, like you mentioned your son is experiencing, is the oppositional/defiant behaviors.
As with herxing in general, I like to think that these are all very temporary. Julie
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In fact, when I think about it, seems like these behavioral and emotional symptoms would be worse in kids due to their limited abilities to express themselves verbally etc, not to mention lack of experiences which might've included other devastating physical challenges. As adults even, nothing can prepare you for how awful lyme is.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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lymewreck36
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Member # 4395
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HI. My middle daughter, have three daughters with lyme/babs, was always very neuro. The other two not so much.
So, the middle daughter had neuro herxes mostly, and yes, that included things you mention.
It took four years of treatment for my daughter to be highly functional, but still today, 7 years later, she still has to be on her antibiotics to prevent a relapse.
But she is doing well and is happy.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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2roads
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Oh Tickbattler.
I have no answers to give you, I'm sorry.
At least take comfort that someone is listening to you and trying to help you help your son.
My son had mentioned recently in the mornings that he heard a voice in his room which scared him so he came in to my bed.
I never really thought too much about it until I layed in bed with him last night in the quiet of his room and he said" You see, I told you I heard something". The voice says " Come here", he whispered as if repeating it. There was no sound at all Tickbattler.
I wanted to put my head in my hands and just die.
The only saving grace was that he was sound enough to cover himself and say it was probably the wind.
If he does not get help soon, I may not be hear to help him.
I cannot watch this anymore-
2rpads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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tick battler
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posted
Thanks, all for your comments and support.
Lymebytes - thank you for the info about activated charcoal...our LLMD isn't into supplements at all so I don't think he will be much help on this. I will check with him, but can you tell me whether young children can take it? My boy cannot yet swallow pills, so do you know how I would give it to him? I am going to research this further. Did you buy the Nature's Way brand?
sickpuppy- yes, thanks I do not take things personally as I am not new to this disease and know he is very sick. I am just hoping to hear from others how long it took to see a change in the psych symptoms.
My son did a trial of Rifampin for 3.5 months and was hyperactive and very difficult the entire time. (He is always difficult, but was more so when on this drug.) He was a bit better for a few months after we stopped this drug. I am trying to figure out if he will remain this way while on the Flagyl or we will see improvement soon. After this first 2 week pulse, I am really hoping to see some improvement once we are off the med. I do think that the charcoal may be a good idea, as I believe more and more about detox, even though my kids' LLMD doesn't!
For those of you who did see improvement in behavior and psych symptoms, was there a particular drug that helped this more than another?
momintexas - what type of hallucinations does your son have? My other boy started seeing colored spots shortly after starting treatment. Based on my observations, I have deduced that the spots were from babesia in his case. Once we treated for that, they eventually went away after several months. Later, when we tried to stop the babs meds, they started coming back (along with his other symptoms).
2roads - sorry to hear your son this is happening with your son. Hang in there! He WILL GET BETTER. You just have to keep at it. What drugs is he on now?
I haven't ruled out rife as an option as well to get these bugs if the abx can't. I have been reading a lot about it and it sounds very promising, and probably safer than holding a cell phone to your ear.
I also saw that thread about borna virus. Could be another thing to look into for psych issues.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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GiGi
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Member # 259
posted
Maybe you should take a look at the different "young people" protocols used for autism. All autistics also have Lyme. Many have KPU. EMF exposure. Environmental toxins. You may find something you are overlooking or your doctor is not aware of. Lyme is has many causes, without a doubt.
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