Second verse, same as the first.

We saw a psychiatrist Thursday. Based on what he has read about our case, heard from our psychologist, what he has learned from me, and what he saw for himself at the appointment, he agrees that we are likely looking at pdd-nos. He opted to keep her at the 10mg dose of Strattera instead of increasing it because she is so small, and has already had trouble with the side effects. We also switched to giving it to her at night. He was able to clearly see the eye tic and mentioned Tourette's as well.

We received a referral to yet another psychologist at a different clinic and I wasn't going to make an appointment because I didn't see the point in seeing another psychologist... but when the lady called me about my paperwork and I told her that, she responded that our PCM specifically requested we see this doctor so that we can get a diagnosis in our records and start on a treatment program. So I figured it can't hurt to get another opinion, especially if this doctor is more willing to put it in writing.

So, that appointment is Thursday at 3. It could (and likely will) take more than one visit to pinpoint the problem. They are also recommending ABA (Applied Behavioral Analysis) if they agree with the pdd-nos diagnosis. I'm not sure how I feel about that yet, I have to research it more. Plus it may take a while to jump through all the hoops with our insurance to get the extra benefits for special needs.

Tic Tac Toe

Well, really only tic. We went to the doctor today and had her evaluated for the eye blinking thing. The doc said it is definitely a tic and is just another piece that will help complete our puzzle. He mentioned Tourette's, which I have read sometimes goes along with autism. Let's hope it doesn't progress into what most people think Tourette's is!
The main reason we went in is because our psychologist and our PCM finally managed to actually speak to each other. They agree with an ADHD diagnosis for now and a medication trial to "take the edge off" so that the underlying problems will hopefully become easier to decipher.
The doc is putting her on Straterra, which he said is not usually his first choice, but because some of the other ADHD meds can cause or exacerbate tics this one should be better for her because it is sometimes prescribed to help with tics.
Obviously we will be starting at a very low dose. 10mg for a week, then 18mg if she tolerates it well.
I'll keep you all posted!

Is this a "tic"?

A couple of weeks ago we noticed our daughter was blinking her eyes a lot, like squinting rapidly. It lasted for almost a week. We thought maybe it was a nervous tic, or possibly something as simple as allergies. It went away, we didn't think much more about it.
She's doing it again. I noticed it last night. Is this something that could be part of the PDD-NOS? She's not having headaches or vision trouble or anything. She actually just had her eyes checked at school 2 weeks ago.

Anyone know anything about this?

Chidren's Hospital, here we come!

Apparently despite the psychologist telling me that the pdd-nos diagnosis was firm, the letter he sent to our PCM didn't say anything about pdd-nos. Instead it mentioned a whole bunch of confusing things, as if the psychologist still hadn't made up his mind.

Based on what the psychologist said and everything discovered in my daughter's Occupational Therapy evaluation, he agrees that pdd-nos fits so our PCM is sending us to the Children's Hospital up north to see a Developmental Specialist. They should be able to figure this all out for certain so we can finally quit wondering and get a treatment plan in place.

It could take a while to get an appointment. Please say some prayers that we can get in soon!

Guess it does make sense.

Interesting post I just stumbled across:
http://pediatricot.blogspot.com/2010/04/look-homeward-angel.html

Someone, PLEASE PLEASE

PLEASE explain this to me. The instant we start putting on shoes in the morning, my daughter starts throwing a fit. They don't feel right, tie it again, ehhehhehhehhehhh, whine whine, complain. Same thing with the jacket. Continues until the instant I drop her off at school, whether I have to walk her in because she is screaming with tears running down her face or I drop her off because she is just whining and I can't do anything about it anyways. The instant she walks out of school she starts picking fights with her brother, lying, arguing, complaining, blah blah blah. Yet apparently between the time she gets out of the car in the morning for school and walks back out the door in the afternoon, she is a perfect angel.

Either the teacher is full of shit and just doesn't want to be bothered with taking note of any issues with my daughter because she doesn't disrupt the class whereas at least one other student in that class disrupts it every single day - or I need to reevaluate things and take bipolar disorder as a much more likely diagnosis. Because she is anything but an angel at home. Or in the car. Or in the store, or the restaurant, or anywhere else we go!

Someone please explain how she can apparently have no problems at all in school, not even with putting her coat on for recess, never pouts about anything, argues, or complains, is apparently a perfect angel, yet from the instant she walks out the door in the afternoon until she walks back through the door the next morning, she is practically impossible to deal with.

I want a video camera installed in that classroom because I find it very hard to believe that she does nothing at all but say yes ma'am, no ma'am, please and thank you all freaking day.

EDITED AFTER SOME CALMING TIME: Okay, once again the wonderful Internet has saved me from completely losing it. I know I've read it before and even heard it from our psychologist, but I needed the reassurance - this Jekyl and Hyde thing is normal with ASD kids. The use all of their energy to hold it together in school, then they let it all go when they see Mom and feel safe to do so again. It sucks that the parents and siblings are the ones who have to deal with all of the bad behavior, but at least she is doing well in school. I need to stop and remind myself that she does not mean to drive me insane, that she honestly can't control herself.

So....

I'm feeling rather alone here. Stressed, worried, and alone.

PDD-NOS

This is the official diagnosis... at least for now. The doc said that to him she is clearly Asperger's but because she is missing one of the core requirements for the diagnosis as set by the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), this would put her in the PDD-NOS category - Pervasive Developmental Disorder, Not Otherwise Specified.
It's really confusing, because PDD-NOS covers so many different things. It's the fall back diagnosis for kids who exhibit several signs of one of the ASD's (Autism Spectrum Disorders), but don't fit every requirement of the DSM-IV.
Honestly, I'm not sure right now if this is a diagnosis that could change down the road, or what it means for our family. Based on my research thus far, PDD-NOS is considered to be on the Autism Spectrum and therefore to be a form of Autism, but because it does not have specific criteria like the other ASD's it's much harder to get support such as state services and special education in the schools. Some states do provide services for PDD-NOS just like the other ASDs, but Colorado is not one of them. They exclude Asperger's and PDD-NOS from the state programs. As if these kids wouldn't also benefit from the behavioral therapies and such.

So... I'm not really sure how to get this verified. I mean, I guess a diagnosis from the therapist might be enough, but I don't know. Until I see this in writing somewhere, attached to my child's records, I don't know if it is real. Do I need to get used to saying that my daughter is autistic? She certainly doesn't appear autistic to the average person, but that's part of being PDD-NOS - if she was clearly autistic to the average observer, she'd probably fit into all those requirements of the DSM-IV. Do I say that she is developmentally delayed? She's so smart people will look at me like I'm nuts!

So, for now I guess I just won't say anything. No matter what she is diagnosed with, she is still my beautiful, wonderful little miracle who I thank God for every day.

October is SPD Awareness Month!

While doing some research on ways to raise awareness, I learned that October is Sensory Processing Disorder Awareness Month! So please, take some time to learn a little about SPD and how it affects the lives of those who have it or love someone who has it.

My daughter has SPD and I wish we had known about it sooner so we could have gotten her the help she needs sooner!

A couple sites I've found really helpful:
http://www.sinetwork.org/
http://www.sensory-processing-disorder.com/index.html

Stupid rules

In order to see a specialist, my insurance requires a referral from the PCM, Primary Care Manager. In this case, our pediatrician. Now, I have to give him credit, because he has been very helpful to us - we got the referral for the psychologist from him and the referral for the Occupation Therapy eval based on the psychologists recommendation. Based on the OT recommendations, we went today to request a referral for a Physical Therapy eval and an Ortho consult. He agreed to put in the referral for the PT eval, but not the Ortho consult. He said that without a specific diagnosis attached to it, the insurance would definitely deny it.
So, we have to wait for all the paperwork to go through, probably 2 weeks, before we can even schedule the PT eval, which will then take 2-4 weeks to get in for. Then we'll have to start the whole process again for the Ortho consult.
It just seems stupid to me that one specialist can't just refer you to another specialist directly through your insurance, instead of you having to jump through 6 different hoops to get the approvals.

There's more?

Apparently, yes there is. We finally had the Occupation Therapy evaluation for my daughter yesterday. After 2 hours, we left with a definite referral for the actual OT for SPD, as she qualified in several categories for it. However, we also left with a referral for a Physical Therapy eval and an Ortho consult. There were concerns with my daughter's spine and asymmetries in her upper extremities and pelvic alignment. Or something along those lines anyways, I had trouble keeping up. Her muscle development is not adequate either. She also had some motor delays.
So, my poor baby is apparently going to have a lot of challenges ahead of her. On top of the psychologist we will continue to see, she will now have occupational therapy at least weekly once the paperwork is in order, and likely will end up having physical therapy weekly as well. As far as the Ortho referral, I expect that she may end up with x-rays at a minimum and possibly even an MRI.
On top of all that, we learned on Friday that my husband will be losing his job with the milit@ry by the end of February. He should be able to get a new position as a civilian, but it's going to mean a lot of changes for us.
Please pray for our strength in dealing with all of this, and for the health and happiness of my daughter!

New contenders..

So the doc threw out 2 new terms today - Fragile X Syndrome and Bipolar Disorder. Yay. We're still thinking Asperger's is the leader though.

On a much brighter note (I hope), we finally have Isabelle's OT eval this coming Wednesday. It should at least finally bring us some relief with an official diagnosis and a game plan!

Diagnosis...

... still unknown! Surprise, surprise, the doc says my daughter is such a complex kiddo that it's hard to pin her down! She fits portions of 4 different things, the primary one being the Sensory Processing Dysfunction. She also has characteristics of some OCD, some ADHD and some Aspergers. But she doesn't completely fit into any of those categories! So, what he wants to do for now is continue with the plan for Occupational Therapy and see how things go once we get the sensory stuff more under control. The theory being that if you remove the SPD from the equation, it will be easier to figure out what is causing the other problems. Because he is still convinced there is something else going on in addition to the SPD. He's just not willing to "put her in a box" without being totally confident with his diagnosis.

The leading contender right now is what he called "a complex form of Aspergers," but since that generally requires medication to treat, he wants to be certain before we go down that path. As long as we are willing to be patient, he wants to continue evaluating her. Patience is not my strong suit, but in this case I will do all I can because I want what is best for my daughter. If she needs medication down the road, then fine, but we don't want to jump the gun. I personally find it reassuring that this doctor wants to be absolutely certain before labeling my daughter for life, and that he agrees with us that medication should be avoided if at all possible.

So, that's where we are. Still waiting on the referral for OT, going back to see the doc in 2 weeks, and in the meantime I get to try to analyze my daughters relationships. As in, what are the triggers to her often thinking her friends are mad at her and don't want to play with her. Thus far it seems that all the other kids play like normal kids, but Isabelle has trouble inserting herself into the group. She does okay with one on one, but with a group it's like she doesn't know how to interact. Unless they are actively trying to include her, she takes it as that they don't want her to play. It's kind of hard to explain. But I guess an example would be the last time we were all at my neighbor's house - kids from age 1 through 7, and Isabelle kept coming into the kitchen, climbing on my lap, and telling me that no one wants to play with her. I'd tell her to just go join in, shortly thereafter she would be back telling me the same thing again. A couple of times I went and helped her get in with the group by asking the other kids what they were doing then suggesting a way for Isabelle to join. Shortly thereafter, she'd be back upstairs pouting again. When I'd go down it looked to me like everyone was playing together fine. She often seems to have trouble fitting in with the group, but I can't really pinpoint the problem.

Anyways, this got to be a lot longer than I intended! I basically wanted to say that we're really not much further than we were 6 weeks ago! I guess it is kind of nice to have an expert confirm what we've always known - our little girl is one tough cookie!

With any luck, you'll never know...

what it is like on a day to day basis, dealing with special needs. It's exhausting. It's extremely stressful. It takes a huge toll on your mind and body. It's non-stop all day long. And often there is no help, because who can you leave your child with when even their own parents can't take it?

Coming soon...

the results of all the questions, forms, test, etc.! Next Friday at 1pm I meet with the doc to go over his findings. Our PCM also finally put in the referral for OT. So hopefully we will have some answers soon!

The looks

As any parent knows, when your kids act up in public, you get dirty looks. Generally, you can ignore these, because you know you are doing what you can to correct the behavior. What are you supposed to do though when your 6 year old acts just like a 2 year old and your 2 year old acts like a 2 year old on steroids? It seems no matter what I do, I can not control my kids. My 6 year old can not sit in a chair for more than 30 seconds at a time. She is up and running and jumping and talking no matter how many times she is told to sit quietly. My almost-3 year old refuses to sit, runs away all the time, completely disregards any possible danger, doesn't stop when yelled at or called, thinks it's hilarious when you have to chase him down, laughs when you try to tell him what to do or yell at him for bad behavior, and is just plain very loud and active all the time.
At the clinic today, my kids once again embarrassed the crap out of me. They were clearly disturbing other people with their loudness and constant motion, but nothing I did or said made any difference. I tried to hold my son on my lap and he fought me, screaming that I was hurting him! My arms were wrapped around his waist and the only pressure was from him fighting to get away.

We spent 1 1/2 hours total at the clinic, between seeing the doc, going to the lab for a urine sample (which is a freaking horror story of it's own) and waiting for medicine. By the time we left, I barely made it to the car before the tears started.

I get looks everywhere we go. I don't even understand why my kids act the way they do, so how can I expect others to? I would hope it is enough that I am trying to discipline them, calm them, whatever, the entire time we are out, but I know it's not enough by all of the looks I get that clearly say, "what the hell is wrong with you and your children?!"

We went to a Special Needs Information Fair this weekend. Once we get a diagnosis for my daughter (and probably for my son in the future, because he is getting horrible about things), I am going to take some advice and have cards made up that I can give to the people who love giving me "the look". Cards that explain that there is a medical reason why my child acts this way, and that it's not for lack of proper parenting.

In the meantime, I ask that we all try to be more tolerant of the kids who are annoying us when we are out and about. There are so many unseen and not obvious medical conditions that can cause kids (and even adults, to be fair), to truly not be able to control themselves. Try giving the parents a look of support and understanding, maybe even actually tell them you appreciate how hard they are trying to keep their kids from bothering everyone else. At the very least, don't assume that they are lousy parents and that their kids must just be wild, crazy, undisciplined animals. Because that parent may very well be standing on the edge, ready to fall into the abyss.

Why SPD?

In case anyone is wondering why I agree with the SPD diagnosis...

My daughter has always been very picky about her clothes and shoes. The past year and a half it has really escalated. She has 2 pairs of jeans that she will wear, and on some days even those drive her crazy. When I take her shoe shopping, she will try on literally 20-something pairs at 4 different stores and still not find a pair that "feels right". She has to have her shoes on very tight - if she had her way, she's wear a size smaller than she actually needs. She has been wearing a size 12 for a while now. After much searching we finally found a pair of shoes for her this summer, that she rarely complained about. She wore those shoes out playing outside, so we went to find new ones. After many hours of searching, we finally ended up buying the exact same shoes she wore out, in the exact same size. The shoes are maybe a month old now and most days she completely melts down when she has to put on her shoes because they aren't tight enough. She stretches the velcro so tight all the time that the straps are too stretched out to fasten anymore, unless she doesn't pull them really tight, which she just can't handle.

She has been late for school once already this year because she had a huge tantrum over her jeans not being tight enough. The same adjustable waist jeans she has been wearing for the past 6 months or more, and have been patched on the knees because we cannot find new jeans that don't drive her absolutely insane.

I had to take her to the counselor's office once already this year with us both in tears because her shoes were "not tight enough" and after 20 minutes of it at home I finally had to get her in the car and drive to school with us both crying. She refused to go to class because her shoes didn't feel right - the counselor and I did get her to go, but she ended up going with her shoes unfastened until recess.

Oh, and when I say she melts down over these things, I mean that the instant she puts on the "offensive" item, she will start wriggling all around, whining, trying to fidget it into just the right spot so it feels right, to no avail, and she will quickly progress to screaming and crying. With her shoes she will stomp her feet and practically dance around trying to make them feel better. She will adjust them a million times. Most days she leaves for school still "grumping" about her shoes.

So apparently, this whole SPD thing would mean that these "tantrums" as we call them are not her being stubborn, they are because the shoes or jeans or whatever are literally driving her crazy. Her nervous system or brain can't process things properly so it can feel to her as if there are nails in her shoes or pins on her jeans. Let me tell you, it is so hard when she is having these fits, because there is nothing we can do! She has to wear clothes, and she has to wear shoes. We have no choice right now but to force her to wear what is obviously causing her extreme discomfort. If we do get the official diagnosis of SPD, she will go to Occupational Therapy and we will also likely be taught how to "brush" her to retrain her nervous system to handle different sensations properly.

Here's a site that has a lot of great information...
http://www.sensory-processing-disorder.com/index.html

SPD?

Our psychologist thinks my daughter may have Sensory Processing Disorder. She certainly does fit the bill for it in many ways. We're waiting on a referral to Occupational Therapy for a thorough evaluation.
He met with her today for the first time. I have met with him alone once and with my husband two additional times before now. Based on everything we have told him, and his meeting with her today, he does think there is something deeper to this than just her being stubborn about things. He will meet with her again next week. For now he will not give me any idea what he thinks it could be, because he says he would still be guessing at this point. Honestly, I'd kind of like him to guess so I can at least know what he is thinking!
I hate waiting, but apparently that is what we must do. In the meantime, we need to work on having more patience with the, uh, idiosyncrasies, because she truly may not be able to help herself.

Our new challenge

I realize I have seriously neglected this blog. Every time I try to get back to it, I fail! Due to recent events, I am anticipating the need to have a place to document events and feelings once again, so I thought now was a good time to stop in and let anyone still lurking in the wings that I plan to come back! It will all depend on time really.
We finally pursued therapy for the problems we have been having with our daughter, who just turned 6. We have now received a tentative diagnosis of Sensory Integration Disorder, which we will be having a complete evaluation done for once we get our referrals in place. We are still working with the therapist to determine what, if any, other issues are causing the problems with our daughter.
That's about it in a nutshell.

Yup

So, I'm pretty sure that my daughter has ADHD and/or some sort of depression or anxiety issue. This kid fits the description for the HD part of this to a T and has for years. Here's what Wikipedia says:
"
Predominantly hyperactive-impulsive type symptoms may include:[34]
Fidget and squirm in their seats
Talk nonstop
Dash around, touching or playing with anything and everything in sight
Have trouble sitting still during dinner, school, and story time
Be constantly in motion
Have difficulty doing quiet tasks or activities.
and also these manifestations primarily of impulsivity:[34]
Be very impatient
Blurt out inappropriate comments, show their emotions without restraint, and act without regard for consequences
Have difficulty waiting for things they want or waiting their turns in games
"

She also has serious anger issues and can be very mean and disrespectful. And the topping on this cake is that she honestly seems like she just can't control herself sometimes!

I've been saying I should take her in for an evaluation for years... I'm at my wits end right now and have been for months, so I think I'm going to have to break down and do it. I don't want my child to have to be on medication, or to have the 'stigma' of a diagnosis like this, but I honestly don't know how much more of her behavior I can take!

So, anyone out there have experience with these types of things? Any advice? I've tried cutting sugar out wherever I can (and not substituting fake sugars), we've tried just about every form of discipline out there. All to no avail.

It's interfering with our family significantly. My daughter will be 6 next month. My son will be 3 in December and is starting to pick up a lot of her behavior. I spend so much time disciplining my daughter that neither one of my kids gets enough positive quality time with me!

I don't know what to do.

Freaking out just a little...

So... I've been sick. For about 2 1/2 weeks now. I'm getting better... probably because I started on antibiotics last Friday. Also got a good cough medicine that day and the DH and I actually BD'd for the first time in over a week. Haven't since because I just don't feel that good. So why am I freaking out? My period was due this week. Usually comes Tuesday night, Wednesday morning... every now and then it waits until Thursday. But it is rare, and it doesn't usually wait until this late on Thursday. Yes I am on birth control... but antibiotics can interfere with those. We all know I'm infertile because of the PCOS... but even us PCOSers ovulate now and then. What are the odds that having sex on the first day of taking antibiotics could get an infertile girl on birth control pregnant not even a week before her period is due?
I'll keep you posted!

EDITED TO ADD: It is 7pm and this is officially the latest I will have started... if I do! Yikes! At the moment I am still convinced it will come and that the antibiotics and other meds plus being sick probably screwed my system up a bit.

EDITED AGAIN: Whew! Got it this morning. Breathing a sigh of relief. I might like another baby, but I don't think we're ready right now!

humf

Yeah, it was inevitable. I have bronchitis - now Julian is coughing just like I started out. I knew it was inevitable because he is basically attached to me from 5am - 8pm every day. No matter how much I direct my cough away from him and wash my hands, I breathe on him all day long. This really freaking sucks.

I am only one person...

and I am not functioning at 100 percent right now. I have bronchitis; my husband just had surgery. Neither of us is functioning at 100 percent, or anywhere near it. Hopefully together we can at least come close to getting everything taken care of.

My miracles

I promised pictures, so here they are! I meant to put them up yesterday, but it was my birthday and I kept pretty busy.

Julian


Isabelle

Single parents? Military?

Okay, I need some sympathy here from those who understand because they have been there. We are a military family. Yes, we chose this life, but mainly because we would not have one otherwise since neither of us could find work when we got married. Anyways, we move every 4 years. We have no family nearby. My husband is sent out of town pretty frequently, usually on short notice. If I'm sick, tough, there is no one to help. My husband and I have been out by ourselves maybe 5 times since my daughter was born 5 1/2 years ago. He was also deployed for my past 2 birthdays, probably more I just can't remember. He was deployed for last Thanksgiving, our sons first birthday, and Christmas. When he is gone, there is no one here to help me. I do it all, without a break. When he is here, I still do it all, because he works long hours and there is no one else. My husband is having surgery next week and will be put to sleep for it. Will I be at the hospital in case something goes wrong? No, because I can't keep the kids up there for hours, so I will be home with them, waiting for the hospital to call me to pick my husband up. My daughter will likely be either late for school or miss it completely.
Why am I ranting about this? Because I am sick to death of certain people who have no idea what it's like telling me I have it easy. When these people have a mother living very close by who watches the kids for free whenever they want to go anywhere, be it an appointment, the store, etc, takes the kids to and from school when it is inconvenient for the parents, has the kids all spend the night so Mom and Dad can get a break, it seems to me that they are the ones who have it easy. They spend every holiday with both sides of their families. They have no idea what it is like to not have Daddy around for days, much less weeks or months.
So please, anyone else who has been in my situation, please extend a little sympathy, because I am so sick of hearing how easy I have it just because I don't (can't) work outside the home. I promise to return the favor!

I'm back!

It has been a long time since I posted. Once I gave birth to my son, I didn't feel comfortable continuing with my infertility blog. Not to mention how busy having two kids keeps you! Yet, I have often found that I really miss having somewhere I can come and write about what I am thinking and/or what is going on in my life. So, the blog has been revamped! Hopefully someone out there still has me on their bloglines. If so, give a shout out!

My daughter is now 5 years old and goes to kindergarten in the afternoons. We really wanted to get her in all day (as did she), but we moved here too late and were actually lucky we were able to get her in at all at the nearby school. She loves school and is doing great. Unfortunately, her being so smart seems to come along with a terrible attitude problem. So don't be surprised if you see frequent posts about her mouth driving me to my wits end! She is beautiful and smart and lots of fun, but boy is she a difficult one.

My son just turned 2. He seems to be a bit behind on his verbal skills, but he definitely makes up for it with his personality! He's handsome and silly and a definite Mama's boy. I wouldn't change it for the anything! Lately he has been refusing to take his nap - I'm not ready for this! Hopefully his sister going back to school Monday will help get him back on schedule.

I love our new home in Colorado, but I miss my friends in Texas. I find myself feeling lonely a lot and have to fight off the depression that goes along with that.

So, that's a little bit of an intro. I'll be back soon!