Our lives with OCD

We all hear people say it, "I'm so OCD," or "I've got OCD". They all say in jest, heck even I do myself and a bit of a personal thing, I actually do have OCD!! So, do my sons, both of them! When you think of OCD, your typical response is to think of organizational people. The ones with their cans all facing forward in their cupboards, their towels all lined up evenly on the rack, the drawers all organized with clothes folded perfectly or their closets color coded. Yes, to some degree this is OCD and to others it's just functional. For me, with my cans in my cupboard, and the items in my fridge all label forward, it is OCD. Though I have managed to understand that nothing bad will happen if they are not facing forward, I can still feel anxiety creep in if I leave them askew!

So, what is OCD? 
OCD is a neurobiological anxiety disorder (often genetic in nature) that significantly affects 1 in 40 adults and at least 1 in 100 school aged children.

Obsessions are defined as uncontrollable, persistent worries, doubts or fears that significantly impact normal life. They create unbearable anxiety and often times the person feels compelled to perform rituals or activities  (aka compulsions) to relieve the anxiety.

Compulsions may be either physical or mental rituals that are done over and over and over again in an attempt to control or relieve the anxiety the obsession causes. This is always temporary and just ends up reinforcing the original obsession.

For children with OCD though, like ASD (autism), SPD (Sensory Processing Disorder) or even TS (Tourette Syndrome), it is a spectrum disorder. Most of us have some OCD-ish issues but, you can rationalize that your 'urge' is irrational and move on. Those with OCD honestly feel like something bad is going to happen.

Personal experiences: 
OCD is often recognized in adults and some older kiddos but, for a small few, the signs are evident at an early age. For example, my oldest son, took to hand washing at a whopping 2yrs old. His little brother has just started it at 3 (in case you wonder, he didn't learn it from big bro because, big brother hasn't done it since before little one was born). DW became obsessed with having to put things back EXACTLY in the same spot that they were taken from. Which sounds great but, heaven help you if you were on the way out the door to go somewhere and there is more than one thing out of place. Don't get me started on taking him grocery shopping!! If someone (a stranger) put something back wrong, the whole store knew it! Then he had to "unwind". Which meant that if he crossed in front of you entering the room, he had to cross back on his way out. Or if he walked around the right side of the van to get in, he had to go back the exact same way to go back inside. He started to need things in his bed just so, to get to sleep. I could go on but, I will spare you the whole long history of how his OCD progressed. Keep in mind this is all happening at 2yrs old.

I'm aware that there are naysayers who will say that this is "learned" behavior. I'm here to tell you that they are dead wrong. Ask any geneticist, they will tell you hands down, it is genetic and the child cannot pick what their OCD focuses on anymore than you can change the color of your eyes. I've heard, "well, you have OCD, so they must've learned it from you"....DW's issues, AND JD's obsessions are NOT mine at all! For example, DW became a hoarder! No joke when I say this, he would panic if you threw out old food, old containers, papers, etc. I even have a friend whose son kept and hid toilet paper....toilet paper used for #1!!! JD, he's obsessed with different things than either DW or I have even considered. JD can't have anyone's things away from them. For example, if you come over and set your purse and coat on my table, he will bring them to you. If you sit them next to you and then follow me into the kitchen for snack, he will bring your coat and purse to you again and again and again. He will not stop! It has worn out many a guest here. He is also obsessed with having flat surfaces, completely bare. Which sounds dandy but, imagine walking into a room everyday and finding the bookcase shelves completely bare. Or every child's bed unmade daily. He also tends to panic if you take a different way to go to and/or from a store or relative's house. Keep in mind that he is only 3yrs old and though DW and I both have OCD, our "issues" are not like his. The ones that JD expresses that are or were similar to DW's are things that DW has long since worked through. So, he'd never seen DW do them.

Common Obsessions/Compulsions: 
Contamination fears
Fear of acting on bad impulses, i.e. harming another, insulting another, being the cause of harm to another, etc.
Perfectionism
Washing/Cleaning
Mental compulsions (or as we call them in our house, mental hiccups)
Skin Picking
Trichotillomanina (hair pulling)
Hoarding
Checking
Repeating

Other Conditions related to or in conjuction with OCD:
OCD can come alone or in cohorts with another condition such as Tourette Syndrome, Asperger's, ADHD/ADD, Anxiety Disorders, depression, etc.

What to do as parent of a child with or suspected of having OCD? My first bit of advice as an adult with OCD, do not wait to get help! Tell your child's pediatrician that you suspect OCD. Take them into a mental health staff member and have them evaluated. If they poo poo you, remember: You're the parent, they work for you! Doctors are great resources but, they are not the be all end all to all medical and psychological information! Remember that the earlier they get help, the easier it will be to overcome it. So, if they stonewall you, get a second opinion. I say this to everything from Asperger's, to SPD! Do what is right and fight, kick and scream for your child. I didn't have to do this to get them help with their OCD, it was that obvious but, I have met parents at their wits ends because their child's doctor kept telling them to wait it out or having a kid who wants things put away is a good thing. Just listen to your gut, you know your child first and foremost! If you're in need of more information or support, a great site that offers you a lot of resources, information and a super supportive FB page is, International OCD Foundation.

The point of this rather long post today? Again, instead of glaring at that woman whose hair is sticking out in odd places, whose eyes look a little panicked, who may look on the verge of tears and is managing the best she can, with the screaming child in tow, try offering her a kind word instead! That may be the thing that helps her get on with her day with a renewed spirit.
Instead of glaring at the child for something that they can't quite grasp isn't "normal", try to look at them through a new lens and not with contempt.

Scary times and how we've dug our way out, Part 2

So, one night on the full vitamin regimen with probiotic I didn't think we'd see a single thing.

We were all sitting in the living room playing and watching a little TV when DW comes over and says, "I'm hungry".

We were stunned! I promptly got up and ran to get him food. As I may or may not have mentioned previously, he never knew when he was hungry!! I had to practically argue with him to get him to eat or drink!

The next day, he told us again that he was hungry. He drank a full 8 oz of fluid and by the end of the day, he hit 12 oz.!! This is not a lot in the grand scheme of things but, it was closer to 20oz than he'd been in weeks. For the first time in weeks, we were hopeful that we could keep him from the hospital!

Within four days, the minimum fluid intake was 12 oz. and closing in on 20 oz a day! He went from barely eating enough food to qualify as one meal to closing in on 2 meals a day! To top it off, he quit asking for all his "cheese" foods! Which prompted me to remove milk/casein from his diet on the third day.

That was a rough one because he acted out badly as his little body detoxed for a few days.

After two weeks, he dark purple circles under his eyes, I would come to know as "allergic shiners" disappeared completely! His skin went from grey and very pale white to a soft, porcelain, peach color! He was laughing and smiling! His eye contact which we'd worked so hard to maintain and had promptly disappeared was back!! His meltdowns dropped to almost nothing! He still had them but, they weren't at the level they were before!

Let me explain, if you've not had a Tourette Syndrome child or an ASD child, you'll not understand when I say "rage episode", it does not begin to cover it! There are tiers to rages in TS children or so I am told by the neuro. Rage being the first one, ODD (oppositional defiant disorder) being the second and the third is rare and it is called Explosive Behavior Disorder. This last one is where DW fell into. When he would have an episode, as we call them, he would break windows, tear his bed and bedroom apart, charge the bedroom door over and over again like a linebacker, which would always break where he hinges met the doorframe! This from a little 5 year old! He would hit, kick, bite, scream, etc. Children with EBD grow up to become wife beaters, in jail more often than not for assault! This was the lowest point in this whole journey for me!

So, to see these episodes drop to the level and lower even then when we first added medication to treat them, it was a miracle!

He still tics, especially when stressed or when he can let go at home, after being out are still there but, he went from not being able to finish a sentence, beating himself over and over again to barely having a noticeable tic! I know that there are down times but, even his down times were exhausting to watch! So, to see them just drop so drastically....again all I can say is miraculous!

His anxiety level over his OCD issues and Sensory things, while still there, have also dropped dramatically!

That's not to say that he doesn't have his days or his tics don't explode now and again but, the change simply from the vitamins, which prompted the removal of milk, has made a HUGE change in our lives!

For the first time in years, I have such hope for his future!

Part 2 and pic heavy! :)

Well, as you can tell, my well meaning "every day" post didn't happened! Instead everyone got this cold that won't go away, Thanksgiving came and went as did my oldest son's birthday! He is six now, where has the time gone?!

So, in honor of his 6th year here I will share the rest of his story.

Where was I....oh yes, we were in the hospital, our third stay with him thus far. May I just say that this was 6 years ago and understanding of MSPI, though it's not a common diagnosis overall, was still in it's infancy. It is more common in the heartland of the US than anywhere else in the world! Does that say something about our diet?!

Anyway, let me tell you what the treatment for MSPI was back then around here. It was an order to stop breast feeding. It was putting my son on an IV ONLY for 48 whole hours. An IV of just clear liquids, they contain no calories, no real sustenance at all. Just some vitamins and electrolytes. So, for two whole days I had to hold a starving baby and somehow pray that his hunger; his tummy pains would go away. I prayed that his weight loss would not be too terrible too. As he was already severely underweight.  Then we tried one formula, only allowed to give him mere ounces ever few hours. Again, having to watch your child starve is not an easy thing to do. If the formula did not take you would know as the SCREAMING would start, and there would be blood in his stool. So, you would again have to go back to nothing but an IV for two days on a child that was already starved.

During this time he was also diagnosed with reflux. And began medication for it.

We got to our third formula and he seemed to be adjusting well or maybe I convinced myself because watching him suffer for two days with no food, it was almost unbearable. He was not screaming though, he was not fussing all the time and when he was I couldn't blame him, being as hungry as he must've been. So, after about a week and a half of this we were released to go home. Where I just thought, hoped, prayed that all would be ok. We were released under the primary care of a gastro-intestinal doctor. A pioneer in reflux and MSPI research. The best in the region. We were to check in weekly with weights and any concerns.

So, we did just that. Checked in weekly with weights, that were not getting any bigger and every so often loosing an ounce or two. I would call with concerns of his stools and the doctor would reassure me that this stools were normal for an MSPI baby. Since no formula is entirely clear of milk or soy proteins, this was how their diaper was to look. I was still a new mom and though the voice in the back of my head told me otherwise, I ignored it. Thinking doctors know best.

Almost a month to the day, I was changing his diaper and found yet again, blood in his stool. Back to the hospital we went. This time, he'd dropped a lot of weight since his last visit and though he was near 4 months old, he was still in newborn clothes!

This visit was different. There was an air around the nursing staff, who'd now been around him for his whole life, that worried me.

Remembering that time is hard for me, for many reasons. One, it is severely emotional for me, knowing that this is the visit, he could've died.. Two, because though I would hold him for hours on end, attend to his every need and play the mother role to a T, I still was not emotionally attached to him. Which as a mother, makes one feel very terrible. I know now that this was because of all that was going on with him, the emotional toll on top of having a new baby, struggling with hormones and my new roll. Never really being allowed to bond with him as a normal mother would. I understand that this can easily account for why I didn't fully bond with him but, the guilt of it, still kills me.

For months after he came home and the months he was in the hospital, I had refused to call him by his name. Instead choosing to call him by some nickname I'd made up for him. Afraid that if I'd say his name, somehow that would make him more real and hurt more if he didn't make it.

So, the last visit, was terrible for everyone that knew him, knew us and for my family. It was days of IV starvation, and this time he was put on an NG feeding tube and pump. NG meaning nasal gastric, which simply means that it went down his nose, throat and into his tummy. He was hooked to a 24/7 pump, which automatically pumped the prescribed amount of formula into his tummy.

This was the worst thing ever. He went from 2 days of IV starvation to quite literally, drips of formula into his tummy per hour! Single drops!!! The increment increased every few days until the symptoms would start again and the cycle of starvation would begin again. I say this though, as if the simple drips were sustaining him. The truth is, even with the drips, he was starving; he was dying.

Every time they would try a new formula, it would only be days before we'd have to start again. All the while, his diapers were increasingly disgusting and worrisome. He began dropping weight at an alarming rate and considering he had very little to work with, it began to take it's toll on his body. He lost the ability to cry first, replaced instead by this, pathetic sounding whimper. A sound that will haunt me for as long as I live. He then lost the ability to lift his left leg, followed by his arms and other leg and then the ability to hold his head up. His skin began to hang off of him. His face began to resemble that of a skeleton. Even now I tear up at the thought of it.

Right before the day he lost enough weight to hit 8lbs even, a mere 5 oz over his birth weight, the pediatrician stood his ground and took over the case. He came to me and told me that they could do a surgical procedure and put a port into his tummy for a direct line but, that they didn't think he'd survive. It was my choice though. He told me to have him baptized just in case. He listened to me about the stools and did a test. It came back that he had C. Diff. Don't ask me the proper name for it, I can't even say it, let alone spell it! I chose to forgo the port and stick with the NG tube but, most importantly, when the pediatrician asked if I trusted him enough to take over, I let him. I had nothing else to loose and watching my son starve to death was becoming more than I could take.

He was put on a regime of strong antibiotics. And since we'd finally found a formula he could tolerate, the pediatrician increased the ridiculous drips over the course of several hours to an ounce every few hours. The next day when he hit the 8 lbs though, I remember dropping to my knees in the hall outside the room. The nurses held me up and held onto me. I refused to go back into the room though. I didn't want him to see me crying to think that I'd given up on him. Even though I'd secretly prayed that if someone upstairs was going to take him, then take him now so he would not have to suffer. Something like that is incredibly hard to do as a mother, attached or not to your child. To get to that point, it's heart wrenching and even now, as I type this, the tears pour down. I would never wish that on any mother.

That was the worst part of the whole thing, over the course of he next few days the formula was increased, he began to stop loosing and weight and maintaining it. He started to smile and act a bit like a baby should.

When he finally began putting on ounces, we were allowed to take him home, once again reassured that this would be his last time there.

Here is his first day home, playing with his snack tray in his carseat. That toy was the only thing he would attempt to play with! Still weak, he would swing his right arm over the spinning snail and watch it spin.

 Below is a picture of him the very first time I put him in the crib that had patiently waited months for him to sleep in and still would for many more. His NG tube set up did not allow him to sleep in the crib. He was hooked up 24/7 so he could've gotten tangled up in and choked to death if not put someplace safe.

Another month later, still small as can be and in summer clothes. This was a big deal to me as I never liked to let people see him like that because they would stare.

He was almost 9 months old when he yanked the tube out on his own for the last time. He was chubby and healthy then.

He's not been without his struggles, Sensory Processing Disorder, OCD, ADHD, Tourette Syndrome, Explosive Behavior Disorder, anxiety, hearing loss, etc. but, he's come through it all! There is not a day that goes by, even on the days with meltdowns that I don't thank the heavens that he is here with me. I don't take one smile, laugh, milestone, etc for granted and I hope I never do. He's gone through all of this, all that life has thrown at him and he's still here. He's fought tooth and nail to be here.

This is him now! My adorable, cheesy, hard to handle, sweet, kind, exhausting, funny, smart, wonderful little 6 year old man!

Other than being a bit small for his age, you'd never know. Never. On the days when I cannot get myself to look on the bright side, when getting out of bed seems to be too much to do, when I do not want to do another IEP, specialist or doctor's appointment, I think of all he's gone through, all he will and I get off of my pity pot and just do it.

Hello

So, I guess I should start my first blog by introducing myself. : )

Um, I'm a SAHM of two boys and stepmother to another boy, who resides in the most part with his mother.

My youngest son, now almost 2yrs old, has just recently been given the diagnosis of CAS: Childhood Apraxia of Speech.

My oldest, will be 6 at the end of November, has sensorineural hearing loss (genetic in nature), TS (Tourette Syndrome), ADHD, OCD, SPD (Sensory Processing Disorder), anxiety disorder, etc.

The oldest, DW, is in OT and PT 3 - 4 times a week. JD, the youngest has just finished his first week in ST. He goes 3 times a week. He will need PT and will be getting qualified for it sometime next month. DW sees a psychologist once a week to help with the TS/ADHD rages and OCD issues. He also has a neurologist and developmental behavioral pediatrician that he sees monthly or bi-monthly. He has a geneticist, an ENT (specialist in cranial facial surgeries and issues), a GI doctor and his regular pediatrician. Then you throw in JD's hearing tests every 3 - 6 months and life in our house if usually revolving around therapy or doctor's appointments!!

DW was first diagnosed with SPD at just under 3 years old. OCD was the diagnosis given to him at age 3 as was ADHD. By not quite 4 the tics we'd spent the last two years, chalking up to sensory issues, allergies, etc were undeniably not coming from those issues. The sniffing, blinking, odd breathing noises, constant tugging on his clothes, arm/shoulder jerk, swiping at his nose, etc were no longer mild or in anyway dismissable.

That was our life. Full of meltdowns, medications, various therapies. Then came the dreaded audiology exam. DW's father and grandfather has familial sensorineural hearing loss. So, when as a baby, there was a VERY mild problem in certain tones, it was no surprise. This year's exam though...showed that bilaterally his hearing loss was mild and in some areas, came close to being moderate. It was my choice to do hearing aids or not....when they let me hear how he hears, it was all I needed. He's being fitted for molds next week.

JD has just started his ST therapy a week ago. So, the CAS diagnosis is also new and added to the hearing loss that DW has, it's worrisome. JD's hearing exam was inconclusive in the lower tones, which gives me no comfort.

So, now we add yet another chapter to our lives. Another layer to this crazy cake. It is devastating, it is hard, it is crazy, it is full of tears but, it's priceless, the moments where the light shines in is blinding! It is full of laughter and silliness as you learn to never take a thing to seriously.

I'm just hoping I can hold on tight enough and NOT mess up! :)