7/12/2005

Guest Post--Mom needs some advice

This is an anonymous guest post from a mom who is worried and would like some advice on a serious issue that is facing her family. Thanks in advance for your comments and help. I just returned from the Pediatrician and am feeling a bit weighed down. I have an almost 7-yr. old daughter who is bright and loving and wonderful. She has certain traits which can be traced back to right after she was born that are getting more pronounced as she gets older. Mostly she gets more delightful, but we have for about a year or so had a growing concern. Here are the behaviors that have worried us: Every night before bedtime she walks around the house and shuts all closet, bedroom, and bathroom doors. She will not get in bed without doing this. On school mornings when I would let her sleep in because she’d been up late the night before, I’d wake her and tell her to skip her chores and quickly get dressed and eat breakfast and we’d go. 10 minutes later I would find her in her room making her bed and tidying up and would get very upset if I forced her to leave it undone. After she goes to the bathroom she will often complain about still feeling wet and go back to the bathroom until she is satisfied that she is completely dry. She is ultra-sensitive to clothing. She hates pants or shorts with a button at the waist because they dig into her when she sits (she is not at all chubby – she’s quite small for her age). She hates denim or other stiff or itchy fabrics. I made her a satin nightgown (her preferred pajama fabric) but it had a seam in the front across her chest and she couldn’t stand it until I sewed a piece of satin fabric over the seam so it wasn’t "itchy" anymore. None of these things are really all that bad especially since they've come on gradually. The most frustrating one for me is the clothes issue, because she wears 2% of her wardrobe and is very difficult to shop for. Even so, it’s just inconvenient and frustrating at times, but what child isn’t at times? We could certainly deal with it all as it stands, but our concern is that if left unchecked, these issues will only get worse and new ones will arise the older she gets. We decided to seek the advice of our trusted Pediatrician. Our appointment was this afternoon, so in we went and I explained the above issues to him. He listened and asked questions and then began talking about the chemicals in her brain and the two medications available to someone her age: Prozac and Zoloft. What? Was I hearing correctly? I have a little Princess and Pea daughter who likes the doors shut, why are we talking anti-depressants? I don’t know why I was so shocked, I knew that it’s fairly common to prescribe those drugs for children with OCD, but is she really at that point and are those drugs really necessary? He went on to say that if she were his child, he would put her on Prozac for 5 or 6 months to help balance the chemicals in her brain and then slowly take her off and see if she could maintain that balance without the drugs. He said that often that is the case, but there may be times we would need them again, but that he didn’t think she would need them forever. I love and trust my Pediatrician and therefore felt free to express my concerns. #1 - Isn’t there anything that we can do through therapy to help free her of her obsessive/compulsive tendencies? He said in his opinion, there really wasn’t – that it comes down to the way her brain is wired which creates the perceptions that create these issues. #2 - I’ve heard that Prozac often sort of dulls the emotions and senses? He said that it’s a matter of finding the right dose. He would never be comfortable with that outcome and would be very diligent in communicating with us regarding her reactions and adjusting her dosage very carefully. He also reassured me that her particular condition would require a very low dose as opposed to depression/anxiety. He didn’t write the prescription, but told me to go home and talk to my husband (who was unable to be there) and call him with our decision. So there it is – the weight I’m feeling. She is not even 7 years old and the thought of giving her an anti-depressant is ... well.. depressing to me. I don’t want a her to be dependant on a drug her whole life, but I certainly don’t want her to be trapped by her obsessive/compulsive behavior for the rest of her life either. We have the utmost trust in and respect for our Pediatrician, but ultimately this decision is my husband’s and my responsibility. Neither one of us has struggled with depression or anxiety or used anti-depressants. We have family members who have and who have been greatly helped by medications, but we still feel very ignorant and sort of nervous about the whole psychological realm. We will consider this decision carefully and prayerfully and will ultimately do what we feel good about, but I am wondering if any of you have had experience in these matters and what you’ve learned and what you would do in our situation?

26 Comments:

Blogger annegb said...

Heather, I'm really sorry. OCD is a very difficult thing for those who have it and those who have to live with those who have it. My husband has a mild case, his sisters and mother had little more severe cases, but none of them do the things your daughter does. And they drive me nuts! They do some really crazy things sometimes.

My husband doesn't take medication, but I think I'm going to have to shoot him in the back if he doesn't start. He honestly drives me crazy with his--I'll call it harping, but it's more than that. It's way weird sometimes.

My stepson started taking Ritalin for ADD (then called hyperactive). He was diagnosed by Esther Wender, then one of the most educated physicians of her time on the subject. I married my husband when this little boy was 5 and determined not to give him meds; like you, I was appalled at the prospect. It took me three weeks to become a believer and from then on, I met him at the door with his pill and a glass of water.

He's not okay now. I believe he has progressed to some sort of mental illness, most likely bi-polar. The only thing Ritalin really did was keep me and his mom and his teachers from strangling him.

I'm not sure about prozac and zoloft. I know there are other drugs for OCD. If I were you, I would start networking like crazy before you decide one way or another. It really does sound like she has OCD. It is very troubling to her, I'm sure--maybe more that it concerns you, it concerns her.

Good luck, hon, and God bless.

7/12/2005 08:22:00 PM  
Anonymous J. Stapley said...

There are a couple of things. 1) Get a second oppinion...and a third if you want. Just because you love your doctor does not mean he is infallible. 2) We are fortunate to live in a time when we have options. If you get a second oppion and prayfully decide to treat your daughter, be grateful that you can.

7/12/2005 08:23:00 PM  
Anonymous Anonymous said...

I KNOW nothing but I understand your reluctance to medicate; it is a healthy skepticism, I think.

I would definitly seek other opinions, starting with a diagnosis. Everyone here seems comfortable with calling it OCD. Maybe it is, I don't know, but take her to someone with some insight and education--I would vote for a child psychiatrist if your insurance can handle it.

Have you read about autism (don't freak out, remember, I know nothing)? It seems that there are so many different forms and I know some autistic kids have severe sensitivities (like the clothing thing) and fears or fixations(maybe that explains the doors, not just neatness).

With a real diagnosis (I am sure your ped. is great, but a generalist by nature), I would feel more comfortable considering med.s, which can be very helpful.

7/12/2005 08:53:00 PM  
Blogger The Wiz said...

If you do decide to go with the medication, I would recommend some sort of therapy as well. I know your doctor said there wasn't any, but a quick lookthrough of the OCD foundation website says that there is therapy available, although it is extremely hard to find a therapist, so often medication is the only route.

I have no experience with OCD specifically, so take what a say however you want, but I do have experience with depression, and have a nephew who was diagnosed with some depression, some ADHD, some OCD. (He was quite the mixed bag, according to the neurologist). Medication helped at first, but the side effects were too severe, so they took him off. They found some great therapy, very similar to occupational therapy, but tailored to each child who went through the program. The difference is astounding. My experience (and research backs it up) is that a combination of therapy and meds is the most effective long-term, if you can find the right therapy.

Good luck to you. My prayers are with you. If I knew your daughter's name, I would call the temple, but I guess you can do that:)

7/12/2005 08:57:00 PM  
Blogger The Wiz said...

Oh, the therapy they did was called Brain Connection. you can go to wwww.brainconnection.com to read about it.

7/12/2005 09:01:00 PM  
Blogger Julie M. Smith said...

I'm going to second the idea of getting a second opinion. While I wouldn't rule out Prozac for a 6yo, it wouldn't be my first choice either. (Not, mind you, because I actually know anything about medicine, but just because I'd be concerned *in general* about what it might do to her developing brain.)

And just so you know, I could never sleep with a closet door open anywhere in the house and my husband has to cut all the tags out of his shirts. There's a fine line between OCD and being a perfectionist.

7/12/2005 09:07:00 PM  
Anonymous Susan M said...

I asked my sisters-in-law to read this post because they're much more familiar than I am with these kinds of issues--their kids have autism and/or other related issues. It sounds to me like it could just be a sensory integration disorder, which I myself have (and my kids as well), but I haven't done much research into it and how it differs from OCD or autism or whatever. I hope they have time to weigh in. I'd really recommend getting another opinion, and not necessarily from another pediatrician--possibly an occupational therapist.

7/12/2005 09:48:00 PM  
Anonymous Rosalynde said...

I have a brother who as a younger child struggled with a number of obsessions---hand-washing and other cleanliness rituals mostly. It made him a difficult child to live with, but didn't interfere with the quality of his life or his general ability to function (it did make BOy Scout camping really, really difficult, and I believe my parents didn't make him go every year). Now that he's in his teens, he seems to be getting a handle on it---he was even the senior patrol leader at scout camp this year! He didn't receive treatment of any kind.

Anyway, just FWIW, the experience of one child who seems (knock on wood) to have learned to deal with it without medication.

7/12/2005 10:16:00 PM  
Blogger Heather O. said...

I second the thoughts about sensory integration. I would try to talk to a developmental psychologist, somebody who has experience with this kind of stuff. The sensory integration kids I've been exposed to (there aren't many--remember I prefer to work with 90 year old stroke victims) have lots of issues with clothes and stuff you describe. They usually also have learning issues too, which it sounds like your daughter doesn't. But it still wouldn't hurt to find somebody a little more specialized than your pediatrician,and you might want to read up on sensory integration stuff. I'll post a link if I can find one!

7/12/2005 10:19:00 PM  
Anonymous Anonymous said...

When I was about six, I began to do many of the things you describe your daughter doing. The memories are very, very clear; I felt that the routines and special little things I did kept me safe. There was nothing tramatic happening in my life. Nonetheless, doing repetitive tasks, things like closing doors, flipping light switches a certain number of times, and rituals with my bed and my pillows, all made me feel more in control of my world. There were some pretty elaborate things I felt I had to do each night. Then, as I got a little older, the compulsion to do all of these little things just gradually relaxed. One night they just stopped altogether. While I am certainly not a doctor, I would agree that a second and perhaps a third opinion would be a good idea; she may be nothing like I was, and there are certainly cases where medicine is a good thing. I outgrew it, and am a happy, normal (as well as any mother of small children can be!), well adjusted adult now. Have hope.

7/13/2005 02:21:00 AM  
Anonymous JKS said...

1. Research on the internet about sensory integration disorder and OCD.
2. Talk to more experts than just one pediatrician. Definitely. Don't rely on one person to make this decision.
3. I would wait to medicate until there was a definite feeling that she couldn't function properly. If her issues are mild enough that they don't cause major problems and she can get through life as a kindergartener, first grader, second grader, etc., by just working around the issues, then go with that.

I'm a mom of three with a 5 yr old speech disorder child. No sensory issues but my 7 year old wouldn't wear anything but knit pants until 1st grade. My 5 year old still sticks to sweats and knit shorts. My son also has never really enjoyed icky stuff on his hands but he doesn't freak out about it.
Anyway, my point is that MANY kids have minor sensory issues and so your possibly OCD or sensory disorder child may not be THAT much different than what is considered "normal."
WHere do you draw the line between individual personality and a disability? I ponder that myself since I have a child that 3 years ago was tested for things and I got some results I did not agree with.
Anyway, get online. There are tons of parents out there with support groups and suggestions that you can think about. Creative solutions. And the support of other moms with similar issues is absolutely invaluable at this time. Take advantage of it.
Medication may be a solution at some point in time. Who knows? But definitely take your time to do your homework, find out your options, feel more confident about what the actual issues are.
IT is EXTREMELY difficult to be your child's advocate in a situation like this. It will take time and energy--emotional energy as well as physical energy. But, I'm the kind of person who can't just go with the flow. I had to do all of the above--talk to experts, months of research, daily working with my son to help him reach his potential, carefully construct his environment to help him, have professional therapy, take advantage of school district services.
And of course, pray, and sometimes cry.
But, honestly, I must say I am happy with what I have done. I feel that we have done everything possible for my son. I did the best I could, left no stone unturned, you know? Made the right decisions and he's come a long way.
Good luck.

7/13/2005 02:50:00 AM  
Anonymous Anonymous said...

Just like jks said: Research on the Internet. I'm sure that there are many other families who deal with the same problem. It is all a matter of finding them. I'm sure that there are Self-Help groups out there, where families can share their situations with each other.

7/13/2005 03:10:00 AM  
Blogger dede said...

I agree, do TONS of research, and definitely get a second opinion. But I will add two stories that are pro meds:

First, we had good friends whose child at 2 would not walk on the floor of their apartment, among a lot of other OCD tendencies. They had to arrange their furniture so that he could get around without touching the floor.
After trying a lot of things, they put their child on prozac and the difference was amazing. He could go out and play, etc. without a breakdown.
This child is now 11 and still on prozac. His parents and doctors think he always will be.

Which brings me to story number two about a child born before prozac or zoloft. A child who suffered not understanding why he/she had to turn lights on and off, touch every surface everytime they came into a room, etc. Only "knowing" that if they didn't do these things something "bad" would happen.

What a difference medication made for this person when they became an adult and prozac/zoloft was around. He/She has said many times that they wish they could have had the medicine earlier in their life and what it could have done for them. What a burden it was to have these unexplained thoughts, feelings and tendencies. Especially as a young child when you just can't understand why.

Hope it helps.

7/13/2005 08:45:00 AM  
Anonymous Vanessa said...

This doctor is a pediatrician, a specialist in child health, *not* in mental health. Get a second opinion from a doctor who specializes in mental health (specifically for children). You will find more and better options that way.

7/13/2005 10:14:00 AM  
Blogger annegb said...

Yeah, I agree with everybody, I would research the hell out of this before I gave my child those drugs. Prozac is not made specifically for OCD, I don't think, and that's a pretty tough drug for a 7 year old.

My kids all have had some form of ADD (well, my kids with this husband, I know it's genetic, because my kids with my other husband had none of these traits) and they, every one, had to have the tags cut off their clothes and wore only those clothes that didn't "bother" them. They would say "it bothers." I was good about that, not so good about other things.

I wouldn't stop until you had exhausted the subject.

7/13/2005 11:06:00 AM  
Anonymous Anonymous said...

Wow, thank you all for your input. I truly appreciate all the comments so far. Let me clarify that I'm not Heather or any of the regular bloggers. I appreciate them letting me use their blog to seek some input from all of you.

We will definitely seek other opinions and weigh this carefully. I've heard that one of the big indications of OCD is repetition. In other words, checking the doors 6 times which she doesn't do.

I hadn't heard about the sensory integration disorder -- thank you to all of you who mentioned it. I'll research it.

Rosalynde, I'm intrigued and encouraged by your brother's experience. Truly I'm not all that worried about the way things are right now, just that it might get worse and to a point where it will seriously impact her quality of life. It may be worth waiting a little bit longer to see if it does worsen or if it manages to be contatained to just the things she's currently dealing with. I'm curious what your parents thought as they watched him deal with those issues when he was young.

Thank you all commenters thus far, you've all been very helpful.

7/13/2005 11:12:00 AM  
Anonymous Anonymous said...

Since we're all sharing thoughts and experiences without much medical evidence to back it up, here are mine. Sometimes I wonder if our culture is becoming too intolerant of differences and "normal" but strange behaviors in children, and we just want these difficult behaviors to go away, because they are very disturbing and because we have medication that says these behaviors will go away.

For example, a close teenage relative of mine is currently on Zoloft, and in my very uneducated and maybe insensitive opinion, from what I can tell she is merely going through the same teenage trauma I went through, but without medication.

I'm no medical doctor, but it seems strange that a six year old would need Prozac. Also, I hate to say this, but have you ever thought that you might be paying too much attention to fulfilling your child's demands? Again, I don't want to appear insensitive, and maybe it's just from my experiences growing up in a big family where if we weren't in danger of imminent death, we pretty much fended for ourselves, but maybe your daughter just needs to learn to "deal" with wearing the clothes that you buy for her.

Because of my family experience, I'm very skeptical of children who are fussy or picky - my parents just didn't stand for that. I really don't mean to be insensitive here - sorry if I've offended anyone.

7/13/2005 11:14:00 AM  
Anonymous Amber M said...

Hi, my 5-year-old daughter is involved in the school system for some of her "special needs" and this is where I would start if I were you. The school has specialists that are free and can refer you if you need private help as well. Just enjoy the summer with your daughter while educating yourself on the net about all her behaviors. Also, keep notes on it so you have a good list of what her quirks are to show someone.

When fall comes, get in touch with the school psychologist and the occupational therapist and they'll know how to help you. I told my team that I wanted to consider medication as a last resort. Instead, for my daughter's sensory challenges we do therapy and a "sensory diet" that really helps her, as does my simple acceptance of many things (like that she won't wear anything but knit clothes). For my daughter's social anxiety, we've set small goals and she and I have been gratified to achieve small successes that will breed more success over time. She also has a few OCD quirks but they don't impair her functioning. She mostly collects and classifies things -- weird things like cut-up straws or lint. :)

I try not to worry too much about what she'll be like as an adult, I just try to have fun and love her and I figure my positivity will help more than my worry.

Good luck, and stay positive -- you have many options for helping her overcome her challenges!

7/13/2005 11:20:00 AM  
Blogger Kristine said...

My oldest son has some of these issues, especially sensory integration stuff, but also some obsession/compulsions (maybe a bit milder than what you describe with your daughter). I do think there's a spectrum of many of these behaviors, and just being somewhere past the midline on some doesn't necessarily warrant medication. I wouldn't rule out meds, though, if that ends up being the best way to help your daughter be happy and functioning.

Some books that have been helpful in trying to figure out my son:

_Raising Your Spirited Child_ (cheesy title, very good book), Mary Sheedy Kurcinka
_The Out-of-Sync Child_, Carol Stock Kranowitz
_The Difficult Child_, Stanley Turecki
_The Explosive Child_ (useful even if your child tends to implode rather than ex-), Ross Greene
_The Optimistic Child_, Martin Seligman
_A Mind at a Time_, Mel Levine

That list should also be enough to convince you that the "experts" don't know as much as you do about your child--they can't even come up with even *slightly* original titles for their books! Good luck--you'll figure it out. Fortunately, you can have help from heavenly parents who love your daughter even more and more wisely than you do.

7/13/2005 05:39:00 PM  
Anonymous JKS said...

To follow up my earlier post. I would consider medication as an option. I probably would wait until there seemed a clear need--she had TOO much difficulty functioning in the world.
I think that automatically saying "no meds" is silly. Who knows what things will be like now, 5 years from now, 10 years from now. But jumping to meds first isn't the wisest course either.
With my son, I tried fish oil (with essential fatty acids) that DID help at 2 1/2. I researched it and felt there was no harm in trying it. I was skeptical. But he finally spoke his first word after he was on EFAs.
Also, I tried him on the autism diet (no dairy, no gluten) at age 3 1/2. I was very skeptical, especialy since I was pretty sure he wasn't autistic spectrum, despite what others might think. It did no good that I could see. But it was worth the extra money, research and time it took just to check to see if it made a difference. I don't regret any "failures" like this. I don't regret any attempts I've made to see what might help my son.
And, if there was a pill that would help him, I'm sure I research the pros and cons and would eventually try that too, to see if it was the right treatment for him.

7/13/2005 07:04:00 PM  
Anonymous Guest Post Mom said...

Thank you all again for all of your advice, it's amazing how helpful it is to read all of your comments and be able to learn from your experiences as well as just feel supported.

Kristine, thank you for all the book recomendations, I'll be heading to the library.

JKS, thanks for your wisdom and experience.

Anonymous, I'm not offended by what you wrote. I understand what you're saying, but I don't feel we're overly concerned about some abnormal behaviors and just want it to go away. My concern is truly for her and the progression these issues may take. I could care less if she is a little quirky and unique, I just don't want this to turn into something that will impede her quality of life.

Also, I know it must sound crazy to be sewing extra peices of fabric in her nightgown to cover a seam. I'm sure it does seem like we're coddling her and that's been my dilemna. My natural attitude is sort of the "buck up" one, but I have come to see that she isn't just being spoiled or fussy -- she is incapable of just dealing with it, and I want to help her learn ways to compensate for what she naturally lacks.

7/14/2005 12:29:00 AM  
Anonymous claire said...

I wanted to second many of the book recommendations Kristine mentioned. I'm currently reading Mel Levine's A Mind at a Time and it has been very interesting and I like his approach. He is against needless labeling and feels like it can be very damaging. He prefers to identify the specific behaviors that are stopping the child from succeeding and how to change them. He also points out how a lot of 'problem' behaviors in children can be turned into positive traits that help them succeed as adults.

7/14/2005 01:41:00 PM  
Anonymous Anonymous said...

Is your child suffering in any way? Is she struggling in school? Is she sad or upset? Or is she just driving YOU crazy? If she's fine with the way she is, just enjoy her, adjust your life to accommodate her little personality, and keep an eye on things. Who's to say what's "normal?" Maybe her abilities are talents she's been given to be put to good use someday. Our jobs as mothers are not to make our children fit the mold, but to help them discover and rejoice in their potential. (I would love to have the desire to have my beds all made before I left the house!) If you put her on medication for what you just described in your blog, it sounds like you might be the one who is a little compulsive herself.

7/15/2005 07:46:00 PM  
Anonymous JKS said...

We certainly all have to adjust to our children's quirks. My 5 year old takes about 10 minutes to put on socks, shoes, and coat.
Whenever he is doing something, he moves in slow motion, he has to tell you things or ask questions while he is doing it so that slows his progress, the gets easily distracted, etc.
It's annoying and very difficult to plan that whole 10 minutes thing.....and if I am doing other things, he stops, so I need to be watching him the whole time saying, "What are you supposed to be doing?"

7/15/2005 10:50:00 PM  
Blogger mindy said...

I don't have time to read all of the comments, so forgive me if I repeat myself. My BIL has OCD, as does one of my best friends. My BIL exhibited many of the same symptoms as your daughter--extreme sensitivity to clothes and such. But when he was growing up, OCD wasn't known about to the extent that it is today. He wasn't diagnosed until he was on his mission and had a nervous breakdown. My friend wasn't diagnosed until around the time she got married, and was dealing with the stresses of that. Typically, most people aren't diagnosed until around age 20, and it often takes something akin to a nervous breakdown before they go in for help. But having spoken to both of them in some detail about their struggles with OCD, they were just so glad to know that it wasn't their fault that they had such awful thoughts sometimes. Violent and/or profane thoughts are common for a lot of people with OCD, and it is just traumatizing to them to not be able to control it. They just think they are evil or bad. So, my point in all of that is to be grateful that you know about this in your daughter now, as it is likely that she will be able to be able to work through the OCD and won't suffer in silence for years. I would find a support group online and/or in person, as I think it would be great to learn from parents of other children with OCD. Then you will have an idea of the treatment options out there.

I hope that was helpful and that you are able to find a therapist who will be able to help your daughter. I really do think that in the long run, she will be better off for having it diagnosed young.

7/19/2005 12:34:00 PM  
Anonymous Anonymous said...

Having been on porozac myself, I wonder how small a dose they would give her. I think I was only taking about 10-15 mg. I didn't feel as though it was a very strong drug, just helped me cope, but I would seek another opinion before jumping on the bandwagon. SSRI's like Prozac and Zoloft can sometimes lead to only make problems worse in kids.

8/14/2006 11:01:00 PM  

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