14 year old daughter - Severe OCD - Feeling lost?

[Language Of Flowers]

Hi,

 

I have a 14 year old daughter who currently has extremely severe OCD (she is currently in hospital on 24 hour watch). It has had an enormous impact on our family (we have a younger son) and we feel like we are sprinting into the darkness with no idea of direction. If anyone has a similar story and can provide guidance on pitfalls, things to try, ways to cope, etc, I would really appreciate it. I will tell the story to give you an idea of how difficult and bizarre it has become. I will try to be brief, but apologise if this gets a bit long;

 

When she was about 11, DD displayed your garden variety OCD - wash hands a bit long, absolutely had to straighten bed before sleeping, worried clothes were too tight and she wouldn't be able to breath in her sleep, so had to change them, that kind of thing. With the help of a local psychologist we went through CBT and a little ERT and things improved. Not easy, but we got there. the last 6 months of last year, she was almost symptom free.

 

In February of this year DD said she was feeling unwell and had a couple of nights not sleeping very well at all. the OCD came back a bit (garden variety, mixed with the idea that she was going to turn into someone famous). We went back to the psychologist who recommended she go back to school to distract her. At school she collapsed, started babbling that she was going to turn into this famous person, picked her nose then babbled about not doing it. Ambulance was called. She got admitted to the adolescent unit of a local hospital's psych unit. They initially thought she had some virus, did some tests, but all normal. She was quite uncommunicative for the first week or two of hospital. Lots of fits of crying. When we visited she would latch onto some small thing and accuse us of not caring for her (all said in a fit of uncontrollable crying).

 

She came out of hospital on Risperidone and an SSRI (can't remember which). She didn't tolerate the two meds very well and after another admission, was eventually swapped to Olanzapine and Chlomipramine. Around the time of the swap, she started to get very irritable at home (usually around 4 or 5pm for an hour or two). Her memory also became really bad (couldn't remember something from the day before) and she became very restless (wandering around the house, not settling on any one activity for any length of time, etc). Her OCD in the meantime had reduced in severity in the sense that the thoughts were no longer torturing her to the point of tears, but there were bouts of depression (head down, non-responsive). Her thoughts still featured the same things;

- worried about turning into this famous person

- thoughts of a sexual nature about almost any male she saw (including me, her father - very hard to take for both me and her and yes, I know they are not real)

- constant doubt and subsequent checking. i mean everything "Can I have a glass of water?" "Can I have this apple?" "I have to touch his penis. Is that OCD?" "Should I wear these clothes today?" "I spilled some food on my top. I washed it off, but should I change it?". It is relentless.

- constantly going to the toilet, or at least worried about having to go to the toilet before she goes anywhere, even if it is only a 5 minute trip

- constant need for hugs and reassurance that we love her or care for her or will forgive her for having behaved badly, etc.

 

Her irritability started to turn into anger. It was often directed towards us if we were unable to spend the time to talk with her when she had thoughts (which was all the time) or if she did something wrong and we gave consequences (small things that became bigger things when she would not accept the consequences). Her aggression led us to try and go to different rooms to diffuse the situation (including calming down ourselves), but she would follow. If you shut the door she would open it. If you held it shut, she would break it to get in. If we thought it was getting out of control we would try to leave the house. she would run to block us from leaving, sit behind the car so we couldn't pull out, etc. One time she was kicking out at us, punching the walls, etc. We went get our son out of the house. She tried to stop us, so I held her while my wife and son left. She bit me so hard it has scarred. The police were called (not the last time). There were other times when she kicked over furniture, messed up our room when we were out, threw things down the stairs, etc. Most recently she has begun harming herself. We hid the knives, etc, but she will grab a butter knife and scratch up her forehead. She has said she has to do something when angry or stressed, as it makes her feel better.

 

One other feature of her OCD is the belief that the hospital is the only place she will get better. There are nurses there who can sit with her whenever she wants, chat, draw a picture together, watch her paint her nails, that kind of thing. The doctors have tried to keep her out of hospital for this reason, but last week she called an ambulance herself, twice. We ended up taking her to emergency after she spent the night banging her head against the wall. She was admitted. Since admission last week, she has slipped into catatonic states, fainted several times a day. Will chat away, suddenly stop, stare and drool, then suddenly get up, run to the wall and start banging on it. She has used her fingernails to scratch up her arms, legs and face. We don't know if it is OCD telling her she has to do these things, or something else completely. The nurses think some of it is behavioural. Perhaps a way to show "Look, I am really sick. You will have to help me." She has lost the ability to distinguish any of her thoughts as OCD thoughts, or not. She has said several times recently that she wants to die (though I don't think she has a specific plan of how). I have recently thought, she will kill herself one day. She can't possibly go on like this. She has been off school pretty much all year. The few times she has seemed to be doing better and we have tried to ease her back in (an hour or two a week), she regresses. We have wondered if we should just pull her from school altogether (she said it is a huge stress because she needs to look good everyday, people ask her how she is and she has to answer 'Good thanks' when she is not, lots of kids at the school mean lots of people are looking at her, etc).

 

We feel more than a bit lost. If it is OCD, we feel like we have not pandered to it, as advised, but also that she (or her OCD) will take things to a level that ensures she gets attention/hospitalisation/etc. Prior to the current hospitalisation we were going to try and lower the olanzapine and increase the chlomipramine (she is on a low dose) in the hope it would help with the aggression and lower the strength of the anxiety. Now that she is off the deep end in hospital, I think they are going to increase the olanzapine. It is a nightmare and I can't see any light in the near or distant future.

 

Any comments, observations, suggestions will be appreciated.

[MomWithOCDSon]

Yes. We've had a similar trajectory in terms of our DS's story . . . diagnosed with OCD at the age of 6, managed with therapy alone for almost two years, then suffered a dramatic increase at about 9, and then we added an SSRI (Lexapro). He did fairly well . . . almost "normal" in terms of academic and social behavior . . . until the spring of his 12th year. Then he fell off the edge of the world, and nobody and nothing seemed to be able to reach him. He had his first full-on panic attack that sent us to the hospital. After that, he was convinced that he was going to die. He wouldn't leave his room, spent his days completely immersed in rituals that, if we interrupted, he'd become enraged. He couldn't do anything without anxiety, and other symptoms showed up, too. He developed insomnia, separation anxiety. He couldn't speak in sentences anymore; he repeated words constantly. His memory, always exemplary before, failed him miserably.

 

The psychiatrist kept trying different meds and different doses of meds, but nothing seemed to help. We had to pull him out of school because he couldn't sit in class for more than a couple of minutes at a time. He'd become convinced that he'd missed something the teacher had said, some piece of instruction, and that he was going to do everything wrong. That would ramp him up, and he'd bolt from the room. Eventually he spent his days curled up in the fetal position on the floor of his room, or in the bathroom. Yes, urinary frequency or, more accurately, fear of urinary frequency and pooping frequency had him spending more and more time in there, unless we forcibly dragged him out.

 

Then one day in a bookstore, I came across a book called "Saving Sammy: Curing the Boy Who Caught OCD" by Beth Alison Maloney. Her son, Sammy, also 12 at the time he fell ill, went from being a bright, functional, happy kid to a basket case within a period of about 2 months. No meds helped, no therapy helped. He just kept spiraling downward. Then, finally, through a family friend, she heard about PANDAS/PANS and, even though Sammy had never had a classic strep infection in his life (no sore throat, no fever), she found out he did, indeed, have PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). Put on antibiotics, Sammy eventually recovered and today he's a senior at Carnegie Mellon University.

 

When my DS was first diagnosed with OCD at 6, I'd come across PANDAS in my research, but I couldn't get anyone to take it seriously, especially since we had no history of strep with him. When he had his first major uptick in OCD at 9, I came across PANDAS again and again tried to get someone to pay attention, but I got nowhere. I even managed to convince the pediatrian to give him the standard swab culture on the premise that strep had been going around his school (which it had), but when it came back negative, I thought that was the end of that road. It wasn't until "Saving Sammy" came out that I realized someone might be classically asymptomatic for strep but still be suffering from an autoimmune reaction to it. I talked the attending psychiatrist at a partial outpatient program we had DS attending at the time into ordering the strep antibody blood tests (ASO and antidnase ; DS's levels were 5 times the high end of the lab's "Normal" range. Now, though this test is far from definitive, it was enough for me to take to his pediatrician and get her to agree to try a round of antibiotics.

 

Within 48 hours of his first dose (4 doses into a 30-day abx trial), DS was a different person than he'd been for the previous 5 months. He wasn't miraculously "cured," but he started to become functional again. He came out of his room and sat down at the dinner table with DH and me for the first time in more than 3 months. He started sleeping better. Within 6 weeks, we had him back in school part time. And the healing and gains have continued since then. He still takes a low-dose SSRI and attends therapy every few weeks, but he is happy and healthy again. He's a high school sophomore, taking honors and AP classes who enjoys a social life and excels academically. The road continues, but I don't know where he would be now had we not been successful with the antibiotics.

 

Perhaps you've heard of PANDAS/PANs before but thought it wouldn't apply because your DD has had an existing OCD diagnosis? Turns out that's not true, as demonstrated by my DS and a number of other kids. Dr. Susan Swedo of the NIMH has also acknowledged that an "abrupt increase" in OCD behaviors is also potentially indicative of an autoimmune response and not just an "abrupt onset." You mentioned that one doctor thought maybe your DD was responding to a virus? What about infection? Was she tested for things like strep, myco pneumonia (walking pneumonia) and/or lyme? These have also been identified as triggering neuropsychiatric behaviors when antibodies cross the blood brain barrier and get to the brain tissue.

 

More recently, there's been a new book published: "Brain on Fire" by Sussanah Cahalan. This is an autobiography about this young adult woman's descent into "crazy" within a matter of weeks due to autoimmune illness.

 

Below is a link to the most recent paper on PANDAS/PANS authored by Dr. Susan Swedo of the NIMH, along with Dr. James Leckman of Yale. If you haven't already ruled out autoimmune contribution to your DD's condition, maybe you could consider this?

 

PANDAS and PANS

 

All the best!

[nicklemama]

I would advise you to explore all avenues of infectious disease being the cause. I urge you to look into PANDAS/PITANDS/PANS. If I had believed the doctors we took our son to see, I don't even know where he'd be now. Read Saving Sammy. Check out the website http://pandasnetwork.org and http://webpediatrics.com (and scroll down to PANDAS/PITANDS. My son has PANDAS. Its not easy to find doctors who recognize and understand it, but they are out there.

[Language Of Flowers]

Thanks. We had a meeting with the psychiatrist at the hospital yesterday and I bought it up. She didn't seem to think it was relevant and looked at me like I was an idiot for suggesting a spinal tap among other tests. As she had been discussing the possibility of going onto some pretty severe medication (the type that lowers the body's ability to produce bone marrow) or ECT, if the new medicine failed to work, then I told her I wanted to do every other test possible to rule out PANS, etc. She didn't seem enthusiastic.

 

Can anyone tell me the specific tests needed for PANDAS/PITAND/PANS? If I have a list of specific tests I will push until they give in and do them all.

[MomWithOCDSon]

Thanks. We had a meeting with the psychiatrist at the hospital yesterday and I bought it up. She didn't seem to think it was relevant and looked at me like I was an idiot for suggesting a spinal tap among other tests. As she had been discussing the possibility of going onto some pretty severe medication (the type that lowers the body's ability to produce bone marrow) or ECT, if the new medicine failed to work, then I told her I wanted to do every other test possible to rule out PANS, etc. She didn't seem enthusiastic.

 

Can anyone tell me the specific tests needed for PANDAS/PITAND/PANS? If I have a list of specific tests I will push until they give in and do them all.

 

I would check the pinned threads at the top of the PANDAS forum here on the ACN site as there is a ton of information there.

 

Typically, what most of us get are tests for strep titers -- ASO and antidnase b -- and then a full immune panel (IgG, IgA, etc.). If there's any possibility your DD has been exposed to lyme disease (hiking, camping, etc.), then testing for lyme infection and co-infections would be important, also (there's a Lyme forum here, as well, that you could check in that regard).

 

It may seem overwhelming. One place to start might be with the most "likely" culprit, i.e., if your DD has had strep recently, go after those tests first. Or if she spent 3 weeks camping in the wilds of Maine, go after Lyme first, etc. Everything you rule out will help you move forward, even if you're not getting it done all at once.

 

And if your doctor is "less than thrilled" at the prospect of helping you track this thing down, you might consider making an appointment with one of the doctors (a list appears on the pinned threads on the PANDAS/PANS forum here) who've helped others of us figure this thing out and get our kids the help they need.

 

Good luck!

[Language Of Flowers]

Thanks again everyone for the replies so far. I would happily see one of the doctors on this forum, but live in Australia!

[MomWithOCDSon]

Thanks again everyone for the replies so far. I would happily see one of the doctors on this forum, but live in Australia!

 

Ooh! There are a couple of other Aussies over on the PANDAS/PANS forum, so perhaps you can make a connection and get some referrals. Unfortunately, can't recall offhand who they are, but if it comes to me, I'll drop you a PM.

 

Edit to Add: Also forgot to mention, at least one of the leading PANDAS/PANs experts here in the States, Dr. T., will do telephone consults for those who are unable to get to him in person. I believe these consults are somewhat expensive and generally aren't covered by any insurance, but Dr. T. is very highly regarded and skilled. Just another option, should you need one.

 

Good luck!

Edited November 21, 2012 by MomWithOCDSon

[MamaOnAMission]

My first comment is that the nurses are probably 100% wrong saying she wants attention!!!! OMYGOD!!! why would ANYONE want to feel the way she does!!! She is sick!!!

My second comment is... How did my daughter get into your house????? Carbon copy of my child!!!!! My child is the most stable I have seen her. There is so much more work needed here, but I see some changes and calm. This is what she is taking right now. She tested possitive for Lyme and Bartonella.

 

 

10am - 12.5mg. Lamictal - 1 Bactrim -2000 units Vit. D

 

 

 

8pm - 1 Bactrim, and 1 Doryx

 

 

1 New Chapter Probiotic Cleanse

1/2 culturelle

1 Melatonin

Edited December 16, 2012 by Lilly

[rowingmom]

I'm pretty sure "Ozimom" states in her signature line that she is from Australia. You might try PM'ing her. I hope your daughter is doing alright.

Edited December 17, 2012 by rowingmom

[pr40]

we had some success with understanding such behaviors as compulsions. the first rule is that compulsions are made worse by any kind of "no".

Second, parts of methylation process should be checked. metylcobalamin b12 helps our daughter.

and, of course, look into PANDAS as others suggest

[Chemar]

Hi, I noticed your comments about your daughter not tolerating the meds. Although my son is not dx PANDAS/PANS, he does have OCD associated with his genetically inherited Tourette Syndrome, and may have some infection associated symptoms as he is also a Crohn's patient and did have Epstein Barr virus.

 

He has never been able to tolerate *any* medications and it puzzled physicians and us greatly!

 

He now has an official diagnosis of Multiple Chemical Sensitivity, which explains why he has always been so reactive to anything with chemicals in it, including the medications and even those supplements that use chemicals in the "other ingredients". I mention that just to say that whenever there seems to be this general intolerance to meds, sometimes MCS may be the reason. My son has even reacted badly to antibiotics and so called "mild" OTC meds, and if there is a possible, even "rare" side effect...he got it!

 

I do agree with the others that you should explore the possible infection connection to your child's intensive OCD. Hopefully a PANDAS/PANS literate physician would also know about MCS .....if that is relevant for your daughter...I am not saying it is, just mentioning it after the long road we have been on not understanding why my son was so adversely reac tive to all these meds! When I first learned of MCS, I was also shocked at how many physicians negated it as a "real diagnosis"...so be prepared to have that reaction too from some! But it is now recognized as a diagnosis from allergists, even tho many conventional docs are ignorant about it!

 

I do hope you get answers and please please do not let them to ECT on your precious child or do drastic things until you have investigated PANS etc fully (personally, I would not permit ECT nomatter what! )

[mommybee]

Thanks. We had a meeting with the psychiatrist at the hospital yesterday and I bought it up. She didn't seem to think it was relevant and looked at me like I was an idiot for suggesting a spinal tap among other tests. As she had been discussing the possibility of going onto some pretty severe medication (the type that lowers the body's ability to produce bone marrow) or ECT, if the new medicine failed to work, then I told her I wanted to do every other test possible to rule out PANS, etc. She didn't seem enthusiastic.

 

Can anyone tell me the specific tests needed for PANDAS/PITAND/PANS? If I have a list of specific tests I will push until they give in and do them all.

 

I would check the pinned threads at the top of the PANDAS forum here on the ACN site as there is a ton of information there.

 

Typically, what most of us get are tests for strep titers -- ASO and antidnase b -- and then a full immune panel (IgG, IgA, etc.). If there's any possibility your DD has been exposed to lyme disease (hiking, camping, etc.), then testing for lyme infection and co-infections would be important, also (there's a Lyme forum here, as well, that you could check in that regard).

 

It may seem overwhelming. One place to start might be with the most "likely" culprit, i.e., if your DD has had strep recently, go after those tests first. Or if she spent 3 weeks camping in the wilds of Maine, go after Lyme first, etc. Everything you rule out will help you move forward, even if you're not getting it done all at once.

 

And if your doctor is "less than thrilled" at the prospect of helping you track this thing down, you might consider making an appointment with one of the doctors (a list appears on the pinned threads on the PANDAS/PANS forum here) who've helped others of us figure this thing out and get our kids the help they need.

 

Good luck!

 

In addition to a Western Blot for Lyme, you should probably also run Mycoplasma pneumoniae IgG and IGm, Ebstein's Barr and a complete immunological work-up. In February, Madeleine Cunningham's diagnostic test will (hopefully) be available (http://www.moleculera.com/).You may find the links bekiw helpful for determining additional blood work you may want to ask your doctor to run to rule out PANS.

 

http://pandasnetwork.org/busterfaq.html

http://pandasnetwork.org/diagnostic-tests/diagnostic-tests/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292400/

[Wombat140]

How's it going?

[Language Of Flowers]

Thank you all for your replies. I need to apologise for having not checked this thread for a long time. I really want to provide an update, as things are much improved and it started with people who posted on this thread pointing me in the direction of PANDAS and PANDAS doctors in the US.

 

 

By way of update on our situation, I had a fight with the hospital over getting PANDAS tests done and in the end went direct to Dr T in the US ourselves and organised the blood work here in Australia ourselves. Thank you to MomwithOCDson for your above initial post and subsequent post on DR T). Sure enough, our daughter had strep and mycoplasma. She started 1 month of abx and from the day after she started, we saw marked improvement. The anger was still there, but there was a great degree of control, so it never got out of hand and didn't result in physical aggression. Her OCD symptoms reduced dramatically and rather than being concentrated on pretty much everything, the OCD focussed on one thing - eating. While we were worried that anorexia would be the result, at least we had gotten rid of a lot of other stuff (particularly the psychosis and aggression).

 

The month's abx suggested by Dr T came to an end . He was impossible to get hold of and our local doctor did not want to give any more abx (she was reluctant to give the initial month's worth). Our daughter started to regress slowly, but not as bad as before. In the meantime we came across a family who live locally who have a son with PANDAS. The mother of that boy knew of a local doctor who was willing to prescribe abx long term and generally happy to help navigate the medical system here. We had a day when the physical aggression came back and I went straight to that doctor. She is back on the same abx that Dr T suggested (biaxin for the mycoplasma and augmentine for the strep). The physical aggression again disappeared. She gets angry and a little nasty in terms of what she says, but nothing like before. Her OCD has slipped backwards since stopping the first lot of abx, so that is perhaps the most frustrating thing at the moment (constant questions from her seeking reassurance on almost everything - and I mean constant!).

 

Our daughter is starting back at school slowly. This was something that last year we did not think was going to be possible. I had the results of some blood work come back yesterday. Her mycoplasma infection has gone. She still has strep, but it is coming down. My son and wife have strep, so we will give them a course of abx to try and clear it up and stop her from being reinfected. Hopefully that will see some more gains in terms of her OCD.

 

We have also started seeing a Biomed doctor. He has found some vitamin deficiencies and diagnosed her with Pyroles. I am sceptical on the whole Pyroles thing, but like most parents, willing to give the treatment a go to see if we get any improvement. It is still very early days for us and I feel like we are feeling our way in the dark a lot of the time, but the change and improvements cannot be ignored (no matter how hard the hospital and psychiatrist are trying). Thank you to everyone who has replied to my posts. It has helped greatly to see others in similar positions, to reassure myself that we are on the right track when the medical profession have no idea, or even worse, no interest in finding the right track themselves.

[Sheila]

Thank you for bringing us up to date, and so good to know you have seen some improvement.

 

How did things go when you started school up again?

 

If you have a chance, please let us know how your biomed doctor recommendations go, including looking into pyroluria--sure hope that will be a helpful approach. Sheila