6 year old ds has compulsive behavior

[bass chick]

I'm a bit disheartened because I fear that my ds6.5 is headed to some sort of mental illness.

For the past 3 years he has been exhibiting odd behavior. Sometimes he just touches something over and over, but it's not like he is just sitting touching something, he will be across the room and see something and he'll run and touch it in a specific place, then run back to where he was. He'll look at it again and sigh and go back and touch it. He will do this over and over again until he finally complains that he can't stop himself from having to go touch it. Sometimes it's a toy. Sometimes a chair or a basket or a specific part on a door or door jam, sometimes a light switch. He has several things that he continuously does this too, but it isn't always consistently the same things every time.

2 years ago he was running to the bathroom to pee every 2-5 minutes. This continued on for MONTHS. He had blood work, a urinalysis, and ultrasounds to rule out anything medical. Each time he would leave the bathroom he would do a strange sort of dance...sort of running on the spot with huge exaggerated movements. He did this "bathroom dance" for a few days and then I helped him out of it by coaxing him past the spot that he would always do this. After helping him past it for a few days, the urge to do it stopped for him. Sometimes I catch him doing this and he seems so frustrated because he has such a strong urge to do these odd behaviors and can't stop, so I catch him and physically keep him from doing it. He never gets mad when I do and it doesn't seem to cause him anxiety when I stop him. Then he gets distracted and stops this behavior. It doesn't seem to interfere with his daily life. It happens most often between activities or when he's laying in bed or sitting quietly. It drives me nuts and worries me to no end because I know that OCD can be so enslaving.

We don't have a family doctor because there are no family doctors anywhere around that are accepting new patients and it has been like this for years. My only hope of seeing a doctor is going to a walk-in clinic. And I really don't want to go that route because I'm confident it will end with prescription medication.

Can I help him overcome his compulsions? Am I foolish to try? Am I worried about this too much? Or not enough?

It saddens me greatly...

[One_Girl]

Kids that age do a lot of compulsive and strange stuff, but that sounds like it is outside of the range of typical.  Have you considered tourettes?  Some of the literature about that may help you.  Do you have pediatricians in your area accepting new patients?  If so I think that would be the route to go because they specialize in kid related stuff and can help weed out what is normal childhood stuff and what needs a further look.  If there are no pediatricians accepting new clients in your area I suggest getting yourself on the waiting list and going to the drop in clinic about this and asking if they can refer you to a pediatrician or barring that a family practice doctor.  Sometimes doctors will pull strings and ask other doctors to take you in even if they aren't formally taking new clients.  

[meemee]

momma that frequent urination is called Pollakiuria - and it is fairly common in kids btw 3 - 8. they dont really know much about it but they say its due to stress. when dd had it we went back to diapers for a few months.

his behaviours are outside the realm of typical but mama even if he has some form of mental illness he will never be alone. you will always be there helping him through it. my friend son who was s diagnosed with bi-polar - he's an adult now - has said how wonderful it has been to have his mom there for him, to help him thru his many stages, to help him figure out medication - to take or not, etc. and because she has always helped him - sometimes its just going for a walk together to figure out strategies - he does much better. 

[oceanbluemomma]

I would get an alternative doc to run blood work on mineral deficiencies - zinc possibly.  Also foods can cause OCD behavior and frequent urination - you need to get an IGG and IGE panel run for this - run both as one is for sensitivities and the other is for allergies.  Heavy loads of mercury, lead, cadium, alum, and more can also cause OCD behaviors a urine proph test (which is sent to France) will let you know the toxic load.  A great DAN! clinician or biomedical medical professional (don't let the Autism name deter you - they know tons about kids and their bodies) 

This is not behavioral - something is up in my opinion.

Hope you get help and figure it out,

[bass chick]

Originally Posted by One_Girl 

Have you considered tourettes?  Some of the literature about that may help you.  Do you have pediatricians in your area accepting new patients?  If so I think that would be the route to go because they specialize in kid related stuff and can help weed out what is normal childhood stuff and what needs a further look.  If there are no pediatricians accepting new clients in your area I suggest getting yourself on the waiting list and going to the drop in clinic about this and asking if they can refer you to a pediatrician or barring that a family practice doctor.  Sometimes doctors will pull strings and ask other doctors to take you in even if they aren't formally taking new clients.  

Actually, after I posted this thread I did some searching online which linked me up to some info on tourettes. At first I thought "Oh gawd...maybe he has OCD and tourettes," but the more I think about it and chat with him, the more I think it is more on the tourettes end of things. He has tics - exaggerated blinking (which I do too btw, but I can control it if I'm relaxed and not tired) and when he is sitting quietly he sometimes makes a short little hum sound 3-5 times. So the physical and verbal tic has me thinking. He also sniffs and sniffs and sniffs when he's just sitting or laying down. Basically, when he's not doing anything, these tics come out.

Last night while we were laying in his bunk bed he sat up and touched the ceiling and laid back down. Then he immediately sat up, touched the ceiling again and laid back down. He did it a 3rd time and on the 4th time I stopped him. I asked him if he gets upset when I stop him from touching stuff. He said no. I have determined he has no anxiety around these things.

He said to me last night "Mom...I think I was born with it." I asked for clarification and he said, "Well, with wanting to touch stuff."

I have a bit of anxiety about this because I have a few of these quirks...like I said, I have exaggerated blinking, coughing and I have trichotillomania (hair pulling) and have had no top eyelashes for 25 years, have chronic depression that I take an SSRI for, and suffered with severe anorexia nervosa for 7 years during which I was hospitalized for over 6 years because it was so severe. So I'm no stranger to mental illness and worry about the genetic factor of it. I was also given several other labels - kleptomania, OCD, & panic disorder (which I think were just bogus and an excuse for me not to be accountable. All of these things I have got a hold of and abolished from my life.) The only 2 things I struggle with now after my recovery from anorexia are depression and trich and a few little tics.

Anyways, do you think its important to get a diagnosis? I am not interested in medicating my son.

Originally Posted by oceanbluemomma 

I would get an alternative doc to run blood work on mineral deficiencies - zinc possibly.  Also foods can cause OCD behavior and frequent urination - you need to get an IGG and IGE panel run for this - run both as one is for sensitivities and the other is for allergies.  Heavy loads of mercury, lead, cadium, alum, and more can also cause OCD behaviors a urine proph test (which is sent to France) will let you know the toxic load.  A great DAN! clinician or biomedical medical professional (don't let the Autism name deter you - they know tons about kids and their bodies) 

This is not behavioral - something is up in my opinion.

Hope you get help and figure it out,

This is very interesting to me. He has had a lead toxicity test, but none of the others. I am thinking this is definately something to look into.

[blessedwithboys]

You may not be interested in medicating him right now, but if after you have eliminated all possible environmental causes, and if he gets to a point where his life is being ruled by his compulsions, please rethink your anti-med stand.

I also was not interested in medicating my "ADHD" ds1.  We changed his diet and stopped vaxing and gave him tons of outdoor playtime.  He's 16 and still inattentive, but he's excelling in all areas of life.

Ds2 is seeing a specialist next week for a definite answer as to whether he has a mood disorder.  He is 8yo and suicidal.  I am hoping, no praying, to walk out of the hospital with a prescription in hand.

JM2C

[A&A]

A diagnosis might be helpful if he's in school and needs a 504 plan to allow for accommodations.   OCD often runs in families with Tourette's, so it wouldn't be unusual to have both. 

[bass chick]

Originally Posted by A&A 

A diagnosis might be helpful if he's in school and needs a 504 plan to allow for accommodations.   OCD often runs in families with Tourette's, so it wouldn't be unusual to have both. 

He is homeschooled. He told me the other day that he is *never* going to go to public school. I told him I wouldn't hold him to that, but that it was totally his choice. So a diagnosis isn't important in that aspect.

[bass chick]

Originally Posted by blessedwithboys 

You may not be interested in medicating him right now, but if after you have eliminated all possible environmental causes, and if he gets to a point where his life is being ruled by his compulsions, please rethink your anti-med stand.

That is a very good point.

[oceanbluemomma]

Get a magnesium and Zinc level on him as well as ASO -titer and anti-DNase antibody titers test

....Feel free to email me off boards... It sounds like mineral deficiencies, chronic strep in the gut(not a rapid test strep) and a bit more.  Have you had an EEG done?  Read about absente seizures.  Dr. Frye is outstanding at this in Houston, TX.  Check out the book: Healing the New Childhood Epidemics by Bock.

Read about PANDAS and chronic strep in the gut. 

Hang in there -there is help and it may be with supplements and diet changes.  Seizure meds if needed. 

Edited by oceanbluemomma - 1/1/11 at 12:53pm

[One_Girl]

I think it is important for you to rule out other things going on and I think a diagnosis can help you know what to expect and how to help him with or without medication.  If you struggle with depression some of what is going on could be him trying to cope with your ups and downs.  Ups and downs are very hard on kids and can bring out a lot of anxiety, there was something on NPR a few years ago that talked about the effects on kids.  He may also have a more serious underlying medical cause that needs to be ruled out.  My friends son has tourretes and she says he can't be distracted from it so it may be a mild form or he may just have anxiety that needs to be addressed in another way.

[aubryphillips]

I think a diagnosis is a must even if you don't want to medicate him. If you know what's going on there could be other things you can do to help him without drugs. but you can't help him at all if you don't know what the problem is. 

[AllisonR]

Originally Posted by aubryphillips 

I think a diagnosis is a must even if you don't want to medicate him. If you know what's going on there could be other things you can do to help him without drugs. but you can't help him at all if you don't know what the problem is. 

 This! Sometimes knowing XY and Z are issues, it opens up so many possibilities. And I don't mean medication or a label. I mean it can open up to you new, more supportive and concrete ways to cope and deal with the situation.

[sbgrace]

You are describing OCD I believe and there is treatment (non drug) and the sooner it starts the better imo. The OCD foundation will have lists of therapists with specifics on whether they work with pediatrics. I "know" OCD and it's treatment and I still think I will need help if my child begins showing signs.

Tamar Chamsky (or is it Chansky...I can't remember) has a book that I think is called Freeing Your Child from OCD that might be helpful to get. Our library system (interlibrary loan) had it. You can look at reviews too via amazon. There is a yahoo group parenting OCD or similar (if you need a link let me know) too where parents will give advice.

You can treat OCD--there are good and effective treatments without drugs.

Do read up on PANDAS. If he looks consistent (sudden night and day onset of severe OCD especially with other behaviors--I can't tell if what you were describing was urinary frequency and if so if it coincided with sudden OCD but if so that is "textbook" PANDAS and/or PITANDS). I can give you names of doctors who know and can help via distance if that is the case. My best friend recently dealt with that with her daughter. This is a different "situation" than regular OCD.

[bass chick]

Thanks for all the replies.

I have finally found a family physician (who has specific interest in pediatrics and adolescents) after being without a doctor for 4 years. So I will be discussing my concerns with her and take it from there.

About PANDAS, It is interesting that we had many bouts of Strep Throat the winter before the Spring that I noticed the exaggerated and excessive eye blinking. I had Strep Throat 8 times that winter and spent 4 months on antibiotics (which I found out later from a ENT that I should not have been prescribed any antibiotics). When I insisted on getting a throat swab for ds even though he had no symptoms, we discovered he was carrying the Strep bacteria but having no symptoms.

The urinary frequency of ds was extreme....it interfered with his life because he would be playing, go pee, come back and play for 1-5 minutes and go again...I stopped counting after 100 times in ONE day. But it gradually disappeared, while other things have become more apparent.

I am definately checking out that book "Freeing Your Child from OCD". I'm sure I will find some useful information in there for myself as well. :)

I hope I find some answers from our new physician. We go for the "meet & greet" appointment next week (I was amazed we got in so fast!)

[mama2six]

All of his symptoms fit with PANDAS.  I hope you find a doctor that can help you, and that your son is better soon.  Also, there is some research that shows that children with PANDAS do worse on SSRI medications that are often prescribed for OCD, I think you are right not to want to medicate your son, especially untill you know what the behavior is being caused by.  Good luck.

[~Charlie's~Angel~]

FYI, I know this is a tad old, and Im not sure if OP has come back with a DX on another thread. But I just wanted to say that my sister had the excessive nose sniffing, a bit of a head shake, and eye blinking starting back when she was about 4 or 5. She is now 16 and was just recently diagnosed with Tourettes. I feel the diagnosis should have come years sooner, but I dont like her ped, and I believe he kept fluffing off her "ticks". Also, they would come and go. The head shaking just stopped one day. Then a year later, the nose sniffing appeared. She is also a VERY active child and always has been. Always needing to do SOMETHING. Into every sport you can immagine, and not being able to sit idle for more then an hour unless she is sleeping. Im not saying all active kids have tourettes, im just pointing out that looking back, putting all the data together, Im a little peeved she didnt get the help shes getting now, sooner.

If you ask for help, are told all is well, but your mama instinct is still screaming, get a second opinoin. Dont take everything at face value just because the doctor said so. Your mama gut knows when something is up.

[bass chick]

Originally Posted by ~Charlie's~Angel~ 

FYI, I know this is a tad old, and Im not sure if OP has come back with a DX on another thread. But I just wanted to say that my sister had the excessive nose sniffing, a bit of a head shake, and eye blinking starting back when she was about 4 or 5. She is now 16 and was just recently diagnosed with Tourettes. I feel the diagnosis should have come years sooner, but I dont like her ped, and I believe he kept fluffing off her "ticks". Also, they would come and go. The head shaking just stopped one day. Then a year later, the nose sniffing appeared. She is also a VERY active child and always has been. Always needing to do SOMETHING. Into every sport you can immagine, and not being able to sit idle for more then an hour unless she is sleeping. Im not saying all active kids have tourettes, im just pointing out that looking back, putting all the data together, Im a little peeved she didnt get the help shes getting now, sooner.

If you ask for help, are told all is well, but your mama instinct is still screaming, get a second opinoin. Dont take everything at face value just because the doctor said so. Your mama gut knows when something is up.

I finally found a doctor and he has his initial check-up next week with her. I guess we'll see what happens. My ds isn't terribly active, but very squirmy.

I'm curious as to what help a child with tourettes needs.

One thing that has helped ds and myself is just me knowing that this is a possibility and now I no longer nag him to stop sniffing and to "just blow his nose".

[srs]

Originally Posted by bass chick 

I finally found a doctor and he has his initial check-up next week with her. I guess we'll see what happens. My ds isn't terribly active, but very squirmy.

I'm curious as to what help a child with tourettes needs.

One thing that has helped ds and myself is just me knowing that this is a possibility and now I no longer nag him to stop sniffing and to "just blow his nose".

I used to be a child with Tourette's, and now I'm an adult with Tourette's, and what help a person needs depends on the severity and the degree to which it interferes with life, which changes as one ages.  I'm glad you found a doctor, and I'm sure the visit will help with your peace of mind. 

It is interesting to me that your son says he was always like this, because typically TS symptoms have a clear onset in childhood, although I think it can be as young as 2 years old, so maybe for him it does feel like his whole life (or it is another problem entirely). I know I remember a "before" and an "after" for when my tics started. 
 

[LynnS6]

A couple of book recommendations:

Natural Treatments for Tics and Tourette's  It's published by this group: Association for Comprehensive Neurotherapy

Freeing your child from obsessive compulsive disorder by Tamar Chansky (someone else recommended this too).

I would recommend an evaluation to see if you can figure this out -- the treatment for OCD is different for that of Tourette's, though they share some features. Given your strong history of mental health issues, I think it is important to keep an eye on his. Not so that you can pathologize him, but so that if he does have trouble, you can hopefully help him learn the tools, and or get him access to tools (which may or may not include medication) that will help make his life easier.