Monday, January 12, 2009

full disclosure - very long post

First - regarding my last post. I still haven't actually sent the mail. I'm a chicken. I guess maybe because I don't even want to know what his reply will be. I asked my mom what she thinks he knows. She says she's never said a word to him about it. She said my other sister just knows that we did IVF, so he's probably heard that piece from her. I do think I need to reply to the mail, and I will eventually. I just need to get up the courage. But your comments were all really helpful, I appreciate your support. And I really love it when some of you lurkers come out to offer your supportive comments.

Next - as promised recently, I've got a very long update on Danny. I wrote a very long and detailed document outlining the full situation, I emailed it first to all his grandparents, and today I have posted it on our family blog, and have copied that post below. I've probably over simplified some of the facts, and some of you who are living similar situations might recognize areas where I'm not quite accurate. But I wanted to write it in language that would make sense to our family, who aren't googling every term the doctors utter. We've given various combinations of our parents various updates over the last month or so, but at this point I wanted to make sure that they all were getting the exact same information, and it's too hard to keep track of what we've said to whom.

here it is.....

I’m long overdue on giving our family and friends a more comprehensive update on Danny. Apologies if posting this on the blog seems like an impersonal way to tell you all of this information, but it’s the easiest way for me to make sure that everybody is getting the full story and the same information, without having to repeat myself many times.

It is probably obvious if you do only a little bit of reading between the lines (or the photos) that Danny is behind. And maybe it’s obvious that I never mention it. I’ve never talked about it specifically, I tend to gloss over what he doesn’t do and just focus on updating you on what he does do. But I’m sure it’s obvious that he’s not yet walking, only just starting to pull to standing, not talking, etc. I haven’t talked about this largely because we had a lot more questions than answers, and we wanted to wait to discuss this until we had more information, maybe a diagnosis, maybe a plan. At least some answers.

As a parent I think it’s normal that at some point along the way you start to notice little things, and you stop and ask whether your child is ok. This is probably especially true when you have twins, as it starts to become more and more obvious that there are big developmental differences between them. You ask… is he just a late bloomer? Is he just on the low end of normal, but still normal? Or is he falling off the bottom of the curve? We started asking ourselves these questions several months ago, first privately in the back of our heads, and then out loud to each other, and then to his pediatrician.

But then we also started asking the pediatrician the other self-doubt questions. Are we over analyzing things? Are we doing too much comparing when really all kids are different and develop at their own pace? Or do we have reason to be concerned and should we intervene? The simple answer from the pediatrician finally was yes, we have reason to be concerned and we should collectively intervene - to make sure there isn't any underlying problem that needs to be addressed, and do what we can to help him catch up.

The pediatrician recommended a series of things, all of which we have done over the last couple of months. And one recommendation leads to another, which leads to another, which gets us to where we are today.

The very short version of the story: Danny is developmentally delayed. But there’s a lot of story behind that, so I’ll try to go through the obvious questions, and the best answers I can give.

What’s the diagnosis, and who diagnosed him?
The pediatrician referred us to a neurologist, to see if there were any neurological reasons for him to be falling behind. There aren’t. The official diagnosis that came from the neurologist is “non-specific mild global developmental delay”. Non-specific means that he is behind for no specific reason that can be attributed to any disorder, syndrome, brain damage, birth defect, etc. Mild just means mild – it’s not severe. Global means is pretty much across the board – he’s not behind in just one area, but pretty much all areas. Developmental Delay means: “…any significant lag in a child's physical, cognitive, behavioral, emotional, or social development, in comparison with norms.”

She also sent us to Seattle’s Children’s Hospital – to their Neurodevelopmental Clinic, where he was evaluated by a therapist and a neurodevelopmental nurse practitioner. The conclusion is the same – he is developmentally delayed, but for no specific reason.

We have also had him tested at a few different places – Children’s Hospital, Swedish Hospital Pediatric Therapy Services, and the Boyer Children’s Clinic – all as part of the process of figuring out what kind of treatment he needs. I’ll get into more detail on those later – but every one of those places and their tests show varying levels of delay across a variety of areas.

Why is he delayed?
Nobody knows. There is nothing to be found in his history that would indicate reason to believe that he has any kind of brain damage – no issues with the pregnancy or the birth. I’ve talked to my OB about all this and agreed that there was nothing in the pregnancy or birth that might have contributed to this. I had a very healthy pregnancy – one of the least complicated twin pregnancies he’s ever seen. And we had a relatively uncomplicated birth. Danny did have a few minor problems at birth, but everyone that has reviewed his records has indicated that these things were minor and would not have caused this. We asked the neurologist whether this was because he was a twin – we got an enthusiastic “no” to that question – being a twin has nothing to do with this. “It is common for non-identical twins to not be identical”, that’s it.

The best answer that the neurologist was able to give us is that this is most likely an issue of brain maturity – that his brain is just immature for his age. If this is the case, then his brain will eventually mature and he will catch up. It could be that there’s some little part of his brain that developed a little differently, and maybe an MRI would show us something. But it’s unlikely, not worth the risk of the general anesthesia that would be needed to do an MRI on a 15 month old, and would not likely result in any information that would lead us to any different treatment or therapy than we’re already doing. So for now, the neurologist, the pediatrician, the neurodevelopmental NP, and us are all in agreement that doing a brain MRI is not warranted.

What kinds of tests were done?
We were careful to not put him through anything overly traumatic or invasive that wasn’t necessary. The most traumatic thing that he’s had done is to draw some blood. And really the being held down is the most traumatic part of that procedure.

As for medical tests: the pediatrician had some metabolic screening run on his blood, to rule out any metabolic disorders that would impede development. She also had a test run on his chromosomes, to rule out any chromosomal issues. His chromosomes are fine. We also took him to an allergist and had him tested for food allergies, as it was suggested to us that food allergies can delay development, and he doesn’t have any food allergies. (And before you think that allergy testing must have been traumatic – it was barely a scratch and he was more bothered by the cold alcohol swab and sitting with his shirt off, and hardly even noticed the actual test). The net of all the medical exams and testing is that he’s healthy and normal.

The neurologist went through a series of little tests on his reflexes, strength, tone, etc. All in the form of playing games with him. These confirmed developmental delays, but no neurological problems.

And the various therapists and therapy clinics have gone through some standardized skill, language and activity tests, which I’ll tell you more about later, but which all indicate developmental delays.

We have also had his hearing tested – as the doctors and therapists want to rule out any kind of hearing problem as a cause for his speech/language/cognition delays. His hearing is toward the low end of normal, but still within the normal range, and the audiologist concluded that hearing is not a contributing factor to a language delay.

What does this mean for his future?
We don’t know yet. Most likely, and hopefully, with all the right therapy, his brain will mature and he will catch up and by the time he goes to school nobody will even be able to tell that he started out a little behind. It’s possible that he may always struggle a bit in school, or he may always be a little clumsy. Only time will tell.

What do the developmental tests look for, and what are his results?
Every clinic uses a different set of standardized tests. Some involve seeing what he can do in a playing environment, and some involve asking us specific questions about what kinds of things we observe that he does or doesn’t do (does he hold his bottle/cup, does he take his socks off, does he point, etc.). Some of them give us standard deviation, and some give a more useful number of an age equivalency. And for the purposes of determining which types of therapy services he needs, they look at a % of how far behind he is for his age. So for example, a 14 month old testing at an 8 month age equivalence would equal a 43% delay. Depending on which set of tests you look at, he is anywhere from 4 – 8 months behind in the major developmental areas that they look at, or a range of 26% - 53% behind. Anything more than 25% qualifies as delayed.

Here are some of the recent results across the different developmental areas, based on two different tests that were done at 14 months and 15 months:

Gross motor skills: This is things like crawling, standing, walking.
At 14 months old he tested at an 8 month age equivalent.

Fine motor skills: This is more about using your hands – holding things in both hands, pincer grasp, etc.
At 14 months old he tested at an 8 month age equivalent.

Cognitive: This is about understanding the world around you, including language, what objects are for, problem solving. There’s a lot of overlap here with the language development, fine motor and adaptive.
At 14 months he tested at a 10 month level. A different test at 15 months showed him at an 11 month level.

Receptive language: The ability to understand what is said to you.
At 15 months old he tested at a 7 month level.

Expressive language: The ability to communicate – with gestures, words, etc.
At 15 months old he tested at a 10 month level. The other test at 14 months put his speech development at an 8 month level – I think that one was a combination of receptive and expressive.

Self help/adaptive: This includes things like self-feeding, dressing, participating in one’s self-care.
At 14 months old he tested at an 8 month level. At 15 months old he tested at an 11 month level. I’m not sure that he’s made 3 months of progress in one month, I think this is more of a difference between the two different tests.

Social: The ability to play with family members and other children.
The test at 14 months said he was on target for age, but the different test at 15 months put him at a 9 month level. You can see how the tests really vary. The first test didn’t really ask us how he interacted with other kids.

So you can by all of the above, that he is more than 25% behind in all of the key areas – therefore his delay is called “global”.

What does that all really mean? What does Danny do? What does he not do that he should be doing?
Danny is crawling, going from sitting to tummy and tummy to sitting, and pulling up to stand and he’s just starting to “cruise” (taking steps along the furniture). But he still does not roll over, he does not walk. He doesn’t climb or get down from places (like the couch). He feeds himself finger food pretty well and holds his own bottle or sippy cup, but he does not use a spoon to feed himself (he will put a loaded spoon in his mouth, but does not understand to put the spoon to the bowl to get food on it). He does not attempt to draw, or stack blocks. He does not hold out his arms or legs to help you dress him. He does not try to take his shoes or socks off (although he has recently started playing with his shoes and pulling at them).

Danny doesn’t seem to understand most of what is said to him. He responds to his name, and sometimes seems to respond to “no”, but he does not look for a person or object when asked. He will recognize a desired toy from across the room and crawl to get it, but he won’t point to it or respond if you name it. He does not follow simple comments (“go get ___”). He will not hand you an object that he’s holding (if you ask if you can have it – he doesn’t seem to understand that). He does not wave bye-bye, and he does not use any other words or gestures to communicate. He does not have any way of communicating what he wants other than crying, he does not raise his arms to ask to be picked up, or point at or gesture toward something he wants. He does babble a lot, mostly simple vowel sounds and a few consonant sounds. And he has recently starting proactively playing peekaboo with us, which is very fun.

What are we doing to help him?
We are getting Danny enrolled in an Early Intervention program, also sometimes called “birth to three” program. These are programs that are mandated and regulated by the state (every state has them), because research has shown that early intervention results in significantly improved outcomes when kids go to school. Getting him in a program like this, rather than just making appointments with individual doctors and therapists, means that there will be a team of therapists and doctors looking at his development, discussing it as a team, and he’ll get a more complete evaluation of how he’s doing. In this program he’ll be getting a variety of therapies to help him catch up in the various areas that he’s behind. This program covers kids up until age three, and after age three if he still needs help then he’ll get it either through the school district, or private therapies, or maybe a combination of the two.

I don’t have the complete plan yet, but his program will include some combination of physical therapy, occupational therapy, speech therapy and teaching. The center we are enrolling him in provides all of these services, and they have an on-site preschool, and it’s just 4 blocks away from our house. The preschool starts at age 18 months, so we have a couple of months before he gets to go there. In the mean time, we will get home visits from the teacher and/or therapists. Probably weekly, although we’re not sure of the schedule yet.

We’ve already gone ahead and gotten him started with physical therapy at Swedish Hospital, as it is taking a while to get the full early intervention program coordinated and we had opportunity to get him in for PT so we decided not to wait.

Once he’s old enough to go to school, that will be 2 days a week for 2 hours a day. Callie gets to go too – as they like to have “typical” kids in the class, they think it will be good for Danny to have his sister there with him, and it will be a great environment for her to learn too. Being in the school environment with other kids will help him with some of his social delay, help him be more comfortable in social situations. He will continue his other therapies as well, but at this point it will happen at the center, either in class or separately depending on what he needs. I’ll tell you more about the school as we get closer to starting that.

The basic idea with all of this is to get a variety of therapy to help him develop in the areas that he is behind, and hopefully help him catch up more quickly. And we’ll have regular follow-ups with the various doctors to assess his progress.

Ok, I know you’re thinking that I’ve avoided one obvious question – what about Autism?
We don’t know. 15 months is too young to diagnose autism. This usually isn’t diagnosed until around age 3. Although they are now thinking that there are some early indicators that can help doctors and therapists diagnose, and therefore treat it, earlier. And so far we’ve been told by everyone that he does not exhibit any of the early signs of autism. He makes great eye contact, he smiles, he laughs, he interacts with us and he does babble with some sounds. These are the things that a child with early signs for autism would not be doing. So that is a relief for now. And this is certainly something that we, and all of his doctors and therapists, will be watching very closely for as he gets older.

How are we feeling about all of this, as his parents?
It’s frustrating that nobody can tell us why. Jim and I are problem solvers – tell us the problem, and we will do whatever it takes to fix it. It’s hard to have such a vague diagnosis and to not have any real answer for why Daniel is delayed. But, beyond that, we’re feeling pretty good about where we are at. We are very glad that we have pursued the avenues that we have pursued – that we took him to all the right people, got all the bad things ruled out that can be ruled out for now, and that we are aggressively getting him the early intervention therapies that he needs. We feel confident that we are doing everything we can do for him. And it’s really important to note that he is making progress, even if it’s a little slower than everyone would like to see.

And in the mean time, he is happy and healthy and he is the most unbelievable joy to be around. We can’t ask for anything more.

Did I answer all your questions?
If not, feel free to ask me more and I’ll answer what I can. Leave a comment, send us an email, or give us a call. We’re talking about this now. And I promise to be more open about it moving forward.


kelly w said...

what a great, comprehensive post! good job summarizing everything! i have commented before at various times, but ALWAYS i've said, i'm an occupational therapist. i'm very impressed with your extensive pursuit of answers. sounds like you are being a SUPER advocate for danny! that's all any therapist can ask for! the doctors and therapists will be able to give you lots of suggestions that-if carried out consistently at home-can result in some major strides for little man. i'm not sure if it was excluded on purpose, or done and not mentioned, but did you have his vision tested as well? my daughter started wearing glasses at 22 months, so i know pediatric ophthalmalogists have ways of testing young ones. just one more avenue to explore. of course, not having seen his files/past medical history/test results, i am commenting based on what you have disclosed on your blog! again, i am so impressed by your tenacity! danny AND callie are so lucky to have you as their mommy!

Kelly said...

I just wanted to say my daughter (2 weeks or so younger than your twins) had a skull tumor. She had an MRI at 8 months and the surgery to remove it at 9 months. She was put out both times. It ended up being benign and all is well now. She just has a scar between her eyes. All that to say I was a mess over all that and this has got to be scary. I am thinking about you all.

Anonymous said...

I am glad that there isn't anything more serious wrong with Danny. You have done your homework and I hope you will start to see the improvements soon.

Beth said...

I work in an elementary school as a guidance counselor so I see the Early Intervention kids daily. They have made such tremendous progress since school has begun in September!

Danny is very lucky to have you as parents... so caring and resourceful (and of course you are so lucky to have HIM and Callie)! It seems like he is/will be receiving the best possible therapy for his delays.

Wishing you all a very happy and healthy New Year!

Jaimie said...

Wow, that is quite a post. I think you did a very good job of covering the bases. I'll tell you though, reading this post and all your others, I would never have considered autism.

You guys are doing a great job. The frustration with all of this must be so horrible for you. It is so much easier to deal with concrete tests, concrete answers, and concrete solutions. The program sounds great. I think I wish Jake could be in a preschool two hours a day two days a week. I'm impressed

cat said...

Thanks for the comprehensive post. Good luck with all of this and know that you are being great parents in doing exactly what he needs right now.

Love and light to you girl!

Sarah said...

wow, that is all so interesting. i don't mean to sound trite, i realize it is much more than that to you, but you have learned so much.

i guess it would be hard now that they are at an age where you really have to start toddler-parenting, teaching callie what no means and beginning to lay the ground work for early discipline - it must be hard to know how to teach her what is expected of her when he's not ready for the same rules to apply. although i guess if he's not walking he doesn't get into the same kind of situations she's learning about, but have the experts given you any advice for how to balance basically having two babies at different development stages? i mean most moms wouldn't normally face parenting a 15 month old and an 8-10 month old at the same time - what a huge challenge!! you really are a supermom!!

Bea said...

Wow. Very comprehensive. Certainly can't think of anything more to ask.

As you say, there does seem to be some positive - it's mild, and he's making progress. Fingers crossed he catches up in time. Meanwhile, he certainly is seeing all the right people.

Also, my word verification is "cuddle". Thought you might like to know ;)


Anonymous said...

You did a wonderful job of disclosing this information to your family. Your post was so thorough and thoughtful. I wish you the best as you get Danny the help that he needs to thrive. Although in some sense I'm sure it's frustrating not to be able to identify a cause of the delay, I'm so glad that the tests did not uncover a serious medical condition.

I know you said that Danny hadn't had an MRI--just wondering if he had a CT? A CT usually doesn't require general anaesthetic. I only ask because one of my 13 month old twins recently had a CT which showed a cyst on his brain. Our situtation is different than yours--the CT was ordered b/c his head circumference increased rapidly. No developmental concerns as of now. Anyway, we were able to do the CT with a small amount of oral sedative and then I restrained him while he was getting the CT--it only took about 2 minutes, so it worked fine. Unfortunately, when the CT came back with the abnormality, we had to do an MRI, which did require general. Thankfully all went fine. I just bring all of this up because now that I've had to educate myself about these types of cysts, I know that they can in some cases impact development.

It sounds like you have a very capable team of doctors/hospitals at your disposal and that you and your husband have been strong advocates for Danny. He's a very lucky little boy to have you as parents. Thank you for sharing your story with us as well...