This is topic Child with OCD symptoms in forum Medical Questions at LymeNet Flash.

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Posted by jkmom (Member # 14004) on :
My daughter's OCD has flared again. She is now afraid to go to sleep because she is scared. Once she goes to sleep, she wakes up several times in the night and has trouble getting back to sleep each time. If she sleeps in my bed with me, she doesn't have this trouble. If I sleep in a bed next to her, in her room, she does.

Could this be a herx? Should I try stopping the abx for a few days to see? She is on doxy, Mepron, and zith.

Should I take her to a psychiatrist for something to help?

Maybe I should go to the psychiatrist for something to help me? I am losing patience with this.
Posted by adamm (Member # 11910) on :
I wouldn't necessarily assume it's a herx--I know from personal
experience that OCD naturally waxes and wanes in its intensity.
Posted by Shosty (Member # 12232) on :
How old is this child?

All of my 3 kids, whether they had Lyme or not, went through periods when they slept with me. Why don't you just let your child do that, until it eases up for her on its own? Mine are all living at college or on their own now, so it all worked out!

Avoid psychiatrists as much as you can. Treatment for OCD, if that is really a big problem, would depend on your child's age, but as the other person says, it will wax and wane.
Posted by princesslee (Member # 12141) on :
I agree with all the posts regarding age. But, I do have 3 children, 2 of whom have OCD along with severe depression. My oldest who will be 20 yrs old in Dec. began meds for OCD/depression when he was in 5th grade (10 yrs old). He has tried to go off it, but so far, no luck. He can tell he is feeling different and can't handle things.

My daughter (who got lyme infected along with babesiosis, bartonella, and erlichiosis at the age of 5 yrs) who is 14 1/2 now (with a PICC line now), battles OCD, severe depression, anxiety attacks, panic attacks, and has been most recently diagnosed with bipolar disorder. Lyme caused all these things to come about and to get worse.

She began meds for severe depression/OCD at the age of 8. She was fine until her menstrual cycle started and was bitten once again by a deer nymph tick about a month later. She totally went off the deep end.

I know people say avoid psychiatrists at all costs, but he put her on abilify about 5 months ago and after two years of pure Hell in our house, things are finally quiet.

She does cycle, but not as often, and not nearly as bad! Your daughter could be herxing because I believe my daughter herxes and that when she has her worst issues, she is herxing.

She also goes through sleep cycles. She can go to bed at 10PM, then wake up about 2 hours later, then be up until 4:30 AM or later. Then, she will sleep all day. She cycles with this as well as sleeping for 36 hours straight!

BTW, my daughter is currently on IV Rocephin, zithromax, zoloft, abilify, cogentin, and diflucan, along with vitamins.

It's a difficult thing to go through and I spent many nights sleeping with my daughter. So sorry you are having to deal with this.
God Bless and hang in there!

[ 06. November 2008, 01:09 PM: Message edited by: princesslee ]
Posted by jkmom (Member # 14004) on :
She is 10.

I would probably not mind her sleeping in my bed so much but my husband can't sleep when she is there. So I either have to sleep in a twin bed with her or my husband has to sleep some where else.

She was scared to sleep in her bed before but would sleep on the couch downstairs. It took about 6 months for her to get over this the last time.

She did go to a psychiatrist before we knew about the Lyme. She tried all of the SSRI's and had side effects. Some of what we thought were side effects may actually have been Lyme symptoms coming out.

It might have happened anyway, but trying all of those SSRI's ended up with her having a constant headache and we discovered her LD. I'm a little scared of making things worse if we go back to the psychiatrist.

On the other hand, she is extremely anxious now and she might need some additional help.
Posted by Shosty (Member # 12232) on :
My husband slept on the couch for years. His sleep was disrupted by our child waking anyway. My daughter slept with me, then moved on her own when the time was right. But there were times when she came back.

I should quality the thing about psychiatrists. A lot of us have had trouble with psychiatrists who do not accept Lyme at all.

However, our daughter, who is now 18, got a lot of help from a psychiatrist in a study, this past year. She did not mention Lyme, or autoimmune illness (which she also has) but just the psych. symptom itself, which was bdd, similar to ocd, and also horrible, crippling panic attacks. She was scared of MD's and shrinks by that time, but went on her own, and loved the psychiatrist.

Another thing to think about, especially for a child. People with Lyme are very sensitive to meds. The study our daughter is in was for people to work up to 30mg of a certain SSRI. Everyone else is at 30-40mg now, after a couple of months.

Well, she told them she was sensitive, so,instead of starting at 10mg, she started at 2.5mg, 1/4 of the lowest dose pill. It was horrible! She got sleepy, then, 5 hours later, woke at 3 am and was very agitated. Also nausea and vomiting.

Instead of giving up, she went down to .06mg!!!! This is 1/6 of the lowest dose. Also, she took it at 2am, figuring it would help with sleep, then wake her in that 5 hours that she had experienced before, in time to get up. This worked fine.

In a few weeks, she was all the way up to 2.5, where she has stayed. She is 90% better and thriving at an Ivy league college. And, she has not been on antibiotics for a few years.

I would add that she tried everything before going to the psychiatrist and trying meds. She did hypnosis, EFT, energy work, meditation. The self-hypnosis is still very useful, before exams and so on.

Watch out for interactions with all those meds. I can say that from experience.

Just to say again, with a kid who is 10 years old, I would prefer to sleep with them than do meds for sleep, if sleeping with the child corrected the problem. But that is my family, not anyone else's.
Posted by catalysT (Member # 10786) on :
Hey.. This is a bit off topic but I want to comment anyway. I've had OCD since I was a child. I don't know what caused it, but its possible it was some reaction to bacteria, which possibly triggered some kind of auto-immunity in my brain (PANDAS)

Either way. I suffered from it from about age 6-7 until about now (25). I tried SSRIs, but they didn't work real well and made me feel weird/lazy. What DID work for me, was a combination of memantine (brand name: Namenda), and low doses of lithium orotate (the safe OTC kind, not the toxic high dose lithium carbonate!). I get 0 side effects from either drugs, and I feel 100% like my normal self. I barely think about my OCD anymore, which is weird because it uses to bother the heck out of me. I also like that both drugs are neuro-protective (protect the brain, which is important with Lyme, especially).

Like I said, my post is a bit OT (off topic). I just wanted to throw my success story out there for anybody who reads this and suffers from OCD. Memantine would have to be prescribed off label, which is expensive if your insurance doesn't cover it or you don't have insurance. But I buy mine off the net real cheap so its not a problem for me [Wink]

As far as your daughter jkmom, there are some really benign supplements you could try on her. Sounds like its mostly anxiety to me (although I had a lot of trouble with sleep as a child, which wasn't ever really addressed properly). You could try L-Theanine, even at high doses its 100% safe and I find it really effective for anxiety.

You could also try L-tryptophan for sleep, which converts into serotonin and may help OCD as well. However, make sure she takes enough antioxidants like selenium if she has lyme and you give her tryptophan. Two more things that are super-benign and decently effective: Time released melatonin, and high dose (myo-)inositol (hint: it outperformed prozac in clinical trials for OCD/anxiety).

I still take theanine and tryptophan as needed myself. (Wikipedia - Theanine) Theanine is an amino acid found in green tea. It's said that's why green tea is less jittery than other caffeinated beverages (which I confirmed, by taking theanine with caffeine and decreasing jitters/anxiety). They even put it in dog treats. You can take 100mg-1g doses.

I'm just really not fond of most the drugs that psychiatrists push out on people, especially children. A lot of these drugs are disgusting to feed a child to imo. Especially when there's safer and potentially more effective treatments to try.

Anyway, I wish you and your daughter and anybody else with OCD/anxiety the best of luck. Feel free to PM me if I was not clear or you want more info on anything I mentioned.

Btw, Shosty- that is an interesting story about your daughter! Glad she got better.

1. Inositol versus placebo augmentation of serotonin reuptake inhibitors in the treatment of obsessive-compulsive disorder: a double-blind cross-over study.

2. Double-blind, controlled, crossover trial of inositol versus fluvoxamine for the treatment of panic disorder.
Posted by BOEJR (Member # 1734) on :
Hi Folks,

This may sound strange but children on the spectrum present with varying degrees of OCD when their yeast level is up. Have you considered trying some activated charcoal to treat yeast?

BTW, Activated Charcoal does not discriminate it must be taken two hours away from any meds or supplements.

Just a thought,,

Posted by jkmom (Member # 14004) on :
Thanks for the ideas.

We are trying some of the natural supplements now but there are some ideas here that I haven't heard about.
Posted by jkmom (Member # 14004) on :
She takes Nystatin and doesn't appear to have a yeast problem. Could she have it without obvious signs and with the Nystatin? I know it is a risk with her being on abx.
Posted by Shosty (Member # 12232) on :
Inositol works for many but when our daughter tried it, it caused a lot of nausea, and she had only worked her way up to 1/3 of that high dose needed for OCD.

Supplements are very potent- things like L_theanine and 5HTP. For a child, you can get them from Neuroscience in single dose sprays, which are low dose for one spray, and also contain just one ingredient per spray. You could get one for 5HTP (which will help the OCD) and one for L-theanine, which will help with sleep. Expensive though.
Posted by Mo (Member # 2863) on :
ocd can most definitely be related to infection(s) in the brain.

mycoplasma, lyme, strep, to name a few. if a certain brain "center" is effected, this can be one of many symptoms.

if it's flaring, could be a form of neuropsychiatric
herxheimer response, OR an unidentified infection that is flaring as can happen as other infections are being treated (untreated infections present can take a lead when co-contributing infections are being addressed).

this is just my knowledge based on working with LLMD's regarding these issues over the years.

if you are interested in this, read the work of dr. r. br. in nj (psychiatry) and dr. v.s. in pa (psychiatry as well).

both immensely lyme literate, and i believe their work is on the ilads site, as well as

Posted by clairenotes (Member # 10392) on :
I agree that it could be some manifestation of the illness.

My daughter didn't have OCD, but she did have anger problems... This would increase in die-off reactions, so her anger was my gauge to back-off from the lyme killers and allow some detoxing.

You might ask your LLMD about this. But I think these behavioral issues can be important cues that help us in navigating this illness with our children, i.e., when to move forward, when to back off etc.

And supplements that help with calm/sleep may help a lot also, but make sure it doesn't cover up something important that might be going on that needs to be addressed differently.

Posted by princesslee (Member # 12141) on :
Just got to wondering while following this post, jkmom does your daughter mention night terrors at all?

My daughter goes through spells of them and they terrify her because they are so realistic and very gorey, bloody dreams. She would wake up crying and be scared to death and want me to sleep with her.

She still cycles with most of her symptoms. Right now her OCD and depression are beginning to resurface.

If I remember correctly though, her anxieties about sleeping alone were usually fueled by her night terrors.

Good luck and hang in there! God Bless,
Posted by jkmom (Member # 14004) on :
She doesn't have night terrors.

Her sister recently read a scary story off from the internet to her to celebrate Halloween. She has been scared ever since about this story and it has brought up "other scary things" that she thinks about.

She was scared of zombies and monsters a few years ago but eventually got over it. I think it has just returned.

I've been giving her some supplements to see if it would help. She is calming down some already. At least she is able to sleep in the same room with me but we don't have to be in the same bed. When she wakes me up in the night, I just tell her to go back to sleep and she does. Last night, she didn't wake me up at all. [Smile]

I'm hoping her OCD is TBD related and will be decreased if not eliminated with continued treatment.

I think I've read OCD can be related to babs and that's what we are treating. Maybe we are just bringing it out before it gets better?

She also tested postive for bart. Her LLMD thinks we are hitting bart with her med combo, too.

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