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MY "ocd"---while worrying about child with pandas?/tics/ocd


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Hello all,

I've been posting on the pandas forum mostly, as i have a little one (almost 7) who has had some "ocd" tendencies for a year or so....can't touch her food, sip out of her cup, etc. as well as sensory issues with clothing. No big deal....we homeschool and we deal. This early spring, she started smelling her fingers, scrunching her nose, and rubbing her head with a finger. Again, no big deal...my oldest had transient tics for a while. I have 4 kids, and 3 of them even-up when they are scratching an itch or something. Anyhow, in JUne after a high fever, she started thrusting her jaw out, then within a couple weeks, shaking head, nodding head, stretching mouth, sticking tongue out, smelling things, flicking fingers (says she has to flick the germs off), kicking legs, opening eyes wide, flaring and scrunching nose. Separation anxiety is worse, and she's hyper. So we are trying the pandas route---but bloodwork has been "normal" thus far.

 

My brother has Tourette's and ocd, and I believe I am suffering from it as well (the ocd). I believe I have a form of trichotillomania, as i too rub my fingers on my scalp till it feels just right, as well as pull hair (not to the point of balding, just a few throughout the day). I get obsessive ruminating thoughts, and my anxiety goes up. I am now feeling depressed, having a hard time getting out of bed, but waking up with major anxiety and ruminating. I go over an over things in my mind, research incessantly, write things down, etc. So I am having a hard time dealing with this, as the tics really, really, really stress me out an make me anxious.

 

I had postpartum depression really bad after my last two pregnancies. It started with worrying about stuff and ruminating, then depression, anger, etc. Zoloft helped after my third. My fourth, I took Zoloft, but started at a high dose right away, and felt like I had had a ton of caffeine or major anxiety. When it got out of my system, I felt better (well, still depressed, but not like super-anxious). But with my fear-the-worst issues, every time I tried to take it, I would get major anxiety attacks. They put me on klonipin, made me stop nursing, switched to Celexa....it was bad. I wasn't eating, sleeping was hard because of worrying, etc. I took another drug for a few months to get me eating, sleeping and less depressed, then weaned off. Been on Celexa since (over 6 years). I think it has been okay for me, as I don't worry as much, unless there is something that 'gets me"---however, i had started to wean off the Celexa right when my daughter started having issues (bad idea). I was doing okay with it, but it's crept up on me, the obsessing, etc., and I've started to go back up on Celexa. But I don't feel it's been the "wonder drug" for me.

 

I know I probably need some therapy of some sort, but does this sound like ocd to you?? Does major anxiety, ruminating and depression go along with it? ARe there any other drugs (weird I'm asking, because i sooooo hate drugs....was trying to wean off Celexa to try 5 HTP.....) that might get me off the "ledge" of obsessing here?? I am scared of the drug crapshoot, as often things are made worse, from my experience.

 

Okay, I've bared my soul, and thanks for helping.

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Funny- I was just thinking about starting a discussion on this today!

 

I think we all know that after dealing with a child's illness for years, we can develop PTSD. I know I have this. I used to be a vibrant, happy, energetic, super athletic, gregarious person who could burn the candle at both ends- holding down jobs, taking school classes at the same time. As soon as I started having to deal with one disorder-related behavior after another, I began losing it. I am now in rubble- every aspect of my life. I am not blaming my child, but the PANDAS stuff killed me. I too tried meds- celexa, zoloft, etc. etc. Meds take care of one issue, but cause another issue. I don't know the answer. I can say that a few things have helped me, but I'm still incapable of concentrating very long, organizing my thoughts, handling life tasks, simple things are difficult. I think most symptoms are caused by anxiety- anxiety leads to depression. What helps me most is outdoor activity-- being in nature. I was doing something daily, like hiking, surfing, running. Running helped me the most. It is a transfer of focus off your child onto something else. THAT is what you need to be able to do. Whatever you can find that takes your focus off where it has been, and gives you a chance to get exercise (which changes your body chemistry), do it.

 

Therapy didn't help me much...

 

 

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Just want to chime in here and say once again something that I'm sure you have already heard.....when more than one family member is ill with the same types of unexplained disorder---please look at the environment as the cause of the symptoms. I too used to be a vibrant, working woman who burned the candle at both ends. When one by one my entire family got ill with tourettes, ocd, fibromyalgia, tinnitus, balance disorders, neuropathy, chronic fatigue, headaches, joint disorders, double vision, frequent urination, eczema, etc., etc., etc. I found toxic mold in my home. I do realize that caring for a sick child can burdensome to the point of illness---I have three ill children and used to think that I was sick myself because of the stress of it all. Since I found toxic mold in my home and moved out, I have finally started feeling a little more like my old self again. In fact, I havent felt this good in 4 years....and I can now take better care of the kids, enjoy life a little bit more. When they see me enjoying life, they enjoy it more too. Having a "healthIER" caregiver is one of the most important parts to getting the kids better. Please look for environmental triggers to your health problems AND take care of yourself by excercizing, taking time for yourself, meditating, whatever you can do----but don't forget to look for environmental triggers if more than one member of the family is sick. Just had to share as I am an emphatic believer that my family/children all had a genetic predisposition to have tourettes/OCD, etc., but it was the mold that triggered it and destroyed my precious babie's immune/nervous system. Now I am spending every waking hour building their bodies back up (and mine--my husband's too!).

Best to you.

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familyof5--thanks for the post. because of my ocd, I tend to go down so many rabbit-trails, and I am totally overwhelmed with which one to go down next. my latest is ruling out Lyme---even though western blot only showed p41. i just cant sit well with the sudden increase (without decrease) of tics.....3 to over a dozen in a couple weeks time???? What happened!?!?!

wondering if you are doing a "pandas protocol" with your TS/ocd kids if you think it's immune??

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familyof5--thanks for the post. because of my ocd, I tend to go down so many rabbit-trails, and I am totally overwhelmed with which one to go down next. my latest is ruling out Lyme---even though western blot only showed p41. i just cant sit well with the sudden increase (without decrease) of tics.....3 to over a dozen in a couple weeks time???? What happened!?!?!

wondering if you are doing a "pandas protocol" with your TS/ocd kids if you think it's immune??

 

No, I have not gone down the "pandas protocol". I really don't fully understand what the protocol is. My oldest daughter was tested for it years ago: negative. And I really don't believe hers, or my other children's illness is an infection based illness. The reason I don't believe that is because I became sick at the same time. So, I would feel sick and flare the same time they did. The treatment I was on worked for me, so I put them on the same treatement. I believe the mold illness is more like lyme disease where the toxins are released into the body and start destroying anything it can "attach" to (fatty cells). This sets the immune system off and starts to turn autoimmunity on. One suggestion is to see if you can get your doctor to prescribe "cholestyramine" as a toxin binder for you on a temporary basis (4xs per day for at least 2 weeks, I'd try it for a month though). If being on this medication makes you feel better, then you may be able deduce that some kind of "toxin" is causing your illness/flare. Beware though, surely you will herx and I suggest just trying hard to get through it as quickly as possible. After I was on this medication for three days, the brain fog and numbness I was experiencing began to subside for the first time in a year. The rest of the symptoms followed (not all, but certainly the debilatating symptoms cleared). Maybe my family's illness also falls under some type of PANDAS Rx. The major remaining symptoms my kids have are tics/ocd/add. But I can safely say that we all (including myself) flare with symptoms when we are exposed to a water damaged building. For instance, when my children and I went to buy halloween costumes this year, I walked into the store and immediately felt my muscles start twitching. If I looked up at the ceiling it was covered with water stains and moldy ceiling tiles. Two of my children were with me and had tic flares all night and the next day. The third child who was not with me, did not have a tic flare. I've learned a lot about this illness by having all family members ill from it. I believe it is very important to rule it out. Look hard for mold in your home--it can be hidden very well! This site has been so valuable lately in helping me to manage our remaining symptoms, I can't tell you how grateful I am to have found it. I am gathering new information everyday that I believe is helping me make decisions that are crucial to our "healthful" future.

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