Tuesday, August 14, 2007

Re-evaluating current priorities (Updated)

Well, I am going to have to re-evaluate my current priorities on TTC... I think at this point, Chris needs my undivided attention now more than ever. This means, of course, that I am probably going to have to put off TTC again (and, no, I have not heard back from Dr. D's office yet **UPDATED BELOW** - I am aggravated, but it is not high on my check-list today).

First off, I can honestly say our pediatrician really, REALLY let us down, and we are very unhappy. Hubby and I are very much in agreement that we will be finding a new one soon (certainly before he needs to go for his next check up at 4 years old). We have for the past year been concerned about his speech (not being able to express himself clearly) and some behaviors he has been displaying (hand-flapping or jumping when excited, not always responding when he is addressed) - every time we brought it up with the pediatrician, we were told to wait - it was probably nothing and he would catch up. They (it is a practice of two) assured us it was not Autism or autism-like disorder since he was very affectionate and was not regressing in speech (just a little behind).

So, we waited - we enrolled him in that nursery school program in February - he improved, but not to the point at what he should be doing verbally for 3 years old.

We went against their recommendations of waiting again in May at his 3 year check up and scheduled the neurological evaluation (we at least got the referral for a neurological eval back in May!). His appointment was this morning - which was a loooong time from May, but the earliest appointment we could get.

Chris was officially diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified this morning. It is an Autism Spectrum disorder, but the doctor told us it is not Autism or Asperger's specific.

The doctor was very positive about his potential - his gross/fine motor skills are very age-appropriate, he has not regressed in any way verbally, he is affectionate, smart, curious, funny, knows his shapes/letters/numbers/colors, happy. We just have to work on getting his speech in line with his age and teach him the appropriate venues for expressing himself. She feels that if we can really work on addressing this now and fast, that he may very well fall out of the diagnosis by the time he his 5 years old.

We are glad, so GLAD, someone has finally listened to us - and given us the path to helping him and helping him now. It is very frustrating when you know your child is a smart, good child but there is something holding him back and no one is willing to help.

So, when I got in to work today, my afternoon has been spent setting up his hearing test (for 9/10 - and, no, our pediatrician NEVER told us he should have one by age 3 anyway!), trying to see if the Child Study Team in our town's Board of Education could move along his eval (we registered him in early July and of course, they can't move up his eval, so we have to wait until mid-September for that - which delays us in getting him in to any specialized program), calling other centers suggested by the neurologist to at least address his speech until we can get him through the district, calling in personal favors (i.e., my boss' wife who knows the director of a particular speech center at another local university) to help fast track other avenues of help, and research the ABA recommendations so we can at the very least work with him on our own better than how we have been this past year.

So, I think it may be in Chris' best interest if we wait again to TTC for now - just a couple more months, until we get him in the right programs to help him on his way. We are setting up so many appointments now for him anyway, I am just not sure there is time to even TRY the monitoring for an IUI. Hubby and I still have to talk about that tonight...there wasn't time this morning since we both had to get in to work.

I will call Dr. D, though, tomorrow - today is surgery day (he is rarely in on surgery Tuesday) and since I got no phone call back yesterday, it is pretty clear Liz did NOT talk to him yet. So, I will call around 10 am tomorrow morning (when Lee, the good nurse, usually is the only one answering phones) and see what I can get.

I am not sure I can justify TTC right now with Chris just starting out on his path to a better future...

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UPDATE: Lee (the nice nurse) called me back a few minutes ago. Dr. D had suggested just starting Clomid and doing an u/s in a week to see where things were. I told her that I really wasn't comfortable with that plan - I would personally like to see a new cycle start and try to verify that no scarring has developed from the d&e/d&c's done. She mentioned that sometimes he does let patients go about a month past the last Provera pill to see if something will start - but, she said to call in a week (and ask for her - yeah!) if I still don't have my period. We will then go from there.

I am okay with that, for now, since Chris has to be our first priority right now - and I told her that. So, it is an update and a temporary answer...we'll see if anything happens over the next week.

9 comments:

DD said...

So many times the pediatrician will make the parent feel as if they are overreacting b/c they are supposed to look for the common cause b/c most people are common. After so long, they forget that "most" does not mean "all" and shame on the pediatrician for not listening to your concerns and spending just a little extra time with your son. Shame.

I think your decision to possibly wait on this next cycle is valid. A couple of months is a lot of time for a 3 year old and best spent on focusing on where you want him to be in a year.

Adrienne said...

I know you're worried right now, but I'm here to tell you a story that I hope will make you feel better. A very close friend of mine has a young son who also has developmental issues that were not addressed until last summer, after he turned four. She has been very aggressive in his treatment - occupational therapy, social skills classes, behavioral therapy, etc. The improvement in one year has been nothing less than astounding. So when your neurologist says that Chris will likely fall out of the diagnosis by the time he is five, given the right treatment, he is not kidding. I've seen it happen.

As far as TTC goes, do what is right for you right now. If anything, a break from it and time to focus so strongly on your son can only help.

All my best wishes to you, Tina.

Di said...

I agree with both ladies. sounds like you are doing the right thing and sorry your doc didnt listen to you sooner, but you and dh are smart and you will get the best care for Chris. And i think youre right with the ttc, if thats what your gut instinct was, then thats what you should do, there probably would be too many appointments to keep straight in combination with work and life in general! hopefully with the extra services, chris will continue to improve. BIGHUGS!!!!!!!!
and on a side note- at my docs I have a good nurse and a bad nurse too! it stinks! i am calling tomorrow to hopefully talk with the nice nurse!

Delenn said...

I can understand your dilema, and it in fact sounds similar to what my husband and I went through two years ago. Our son has now-diagnosed ADHD and Social Pragmatics issues. The last few years have been getting him the help he needs (he is going into 3rd grade this year). With all the team meetings at school, various doctors appointments, etc. It became obvious at the time that we needed to focus solely on him. Now that we feel he is progressing, it is time for a sibling (we hope).

Good luck to you and I am sure that things will work out--you are dealing with this early and that is so important.

Jessica said...

I am glad you finally were able to be listened to, had some answers and whatnot. It does sound like you need to find a new pediatrician. Our place is very thorough and they take the time to understand our child, you should be somewhere you are comfortable with.
Your gut instants are always best and you know the right thing to do TTC wise, as long as you aren't over stressed, and you & your family can be happy that's what matters. Still, I will be praying for that TTC path of yours, whenever it may begin again.

dawn said...

I am glad that you were able to get some answers to your questions and concerns. Looking for a new pedi sounds like a great idea. On the TTC front you know what is best for you and your family and you don't needed the added extra stress while trying to help figure out everything with your little one.

Amy said...

As a parent with a child who has PDD/NOS, it's hard to hear that anything is wrong with your child. But trust me, now that he's diagnosed, he will get all the help and care that he needs. I know parents who have children deep in the autism spectrum and when they see Peter, they tell me that he's going to be ok. That's because he does/did more than their children at his age. And that's what I'm going to tell you. Chris will be ok. If you ever want to talk, email me and I'll give you my direct number. I'm here if you need anything.

The Town Criers said...

Sweetie, I'm sorry that it took this long to get an answer. And I hope the catch-up happens easily. It is beyond upsetting when waiting, waiting, waiting gets you nowhere but waiting when this could have been monitored earlier. Definitely, a new doctor. Someone who will listen and refer out without waiting for problems to build.

simon said...

well written, affectionate, and interesting blog.

if you ever get the chance, come visit me

Best,

Simon

my blog is http://nastypredator.blogspot.com (not nearly as menacing as it sounds :-) )