Thursday, July 24, 2008

Anonymous Asks....

I received an email from a parent who is asking for guidance and information. This parent has asked to remain anonymous. I hope everyone will take a minute to read the post and see if they have any suggestions, as they have in the past. I have already sent a response to the parent, which you can read in the comments section.

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I'd like to know if it's too early to make an independent decision to take my son to a neurologist. He is a 22 month old 27 week preemie who weighed 980 grams at birth. His apgars were 0 and 0 at all intervals - and the hospital spent 45 minutes resuscitating him. He is currently in the less than 3rd percentile for weight and refuses to take a sippy cup or eat decent quantities of solids. He seems to have some sensory issues, i.e. won't take our hand when walking, must get down on his knees to move from a 1" thick mat to the floor.

He was recently assessed by a developmental group and received the following scores:

Bayley Scales of Infant Dev II

MDI: 107

PDI: 73

Classification: Mental 18-19 months, Motor 16 months

Receptive Expressive Emergent Language Scale-3

Receptive Language: 12 months

Expressive Language: 15-17 months

Rossetti Infant Toddler Language Scale

Language Comprehension: 12 months

Language Expression: 17 months

No one has interpreted these results to us, though I have found some information on the Internet regarding the Bayley PDI score - with the mean score at 85 and mental retardation at <70.

Our speech therapist insists that he isn't anywhere close to mental retardation, but his score worries me. When I asked the gal doing the assessment if I should be concerned, she replied, "Nooooo. He's just going to be a 'different' kind of learner." I have NO idea what she meant by that!

Long story short, I'm wondering if it would be effective to move forward and see a neurologist who specializes in preemie development. Or, should I just wait until he gets older for a more valid assessment?

THANK YOU for all that you do with your blog, especially when you share your own personal stories. I cannot tell you how much you have helped us!

9 comments:

ThePreemie Experiment said...

This is a portion of the email I sent to the parent...

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I am not a doctor so please understand that my suggestions only come from a parents point of view but... if I am doing the math correctly (it is late and I'm tired-lol) your son is roughly 19 months adjusted age. The scores that you shared are close to that adjusted age. Speech always takes a backseat when other milestones (large and fine motor) are being worked on so, at his age, I would expect the speech scores to be low.

As far as the sensory issues, if they are interfering with his life, a qualified occupational therapist may be able to help. Please make sure they are qualified to handle sensory issues. But, like I've blogged
about, Paige's sensory issues became more manageable as she aged. I'm really not sure how much of the improvement was her maturity level or
the assistance from OT.

Feeding... your son sounds like a very typical preemie. Does that mean that we, as parents, shouldn't worry? Nope. That is what we are there for. If he is growing and following his curve (even though he may only be barely on the chart) you know he is getting the right amount
of calories. Paige (now 9 years old) just got out of the 3rd
percentile this year and it is only due to her meds that treat her
OCD. Quite awhile back there was a thread on a preemie group about adding calories to foods for preemie toddlers. Since Paige is out of that stage I didn't pay much attention to it. I'm sure if you joined and asked, people would love to share their ideas.

Sarah Blake said...

I would agree with everything you said. I would also add a few tidbits just for informational purposes (from both my preemie experience and my psych/special ed/child care background).

* Keep offering new challenges in a relaxed environment. One day he may surprise you and take that food or the sippy cup, especially if you are not looking.

* It never hurts to see a doctor, even if he tells you not to worry. If nothing else, it can be reassuring to know you're on the right track.

* If your child did not have an adjusted age, it would still be too early to worry about mental retardation. There needs to be a two year delay in adaptive behavior in order to make this diagnosis. With scattered scores, it likely would not happen until he is older and really falling off the charts behaviorally. The important point, though, is that he is getting what he needs to keep learning. As worrisome as it is to ensure that he reaches milestones, there is no advantage to an MR diagnosis at a young age if your child is getting appropriate PT/OT, etc. It becomes more important at school age when you need to evaluate whether he will be able to do academic work. This is why ongoing assessment is important.

HTH.

Anonymous said...

from Laura

I just have a couple of questions. What is your son's weight for height ratio? Especially at this young age it seems to be more significant than either height or weight.

Have you used a feeding therapist? Feeding therapists allowed my daughter to eat. Because of a wonderful feeding therapist my daughter (438 g, 22 weeker) nursed until she was 22 months old. Feeding therapists in our area are also speech pathologists. She was able to retain a good relationship with food even with severe GERD (remains post Nissen), and constant worries about caloric intake for years. She actually loves butter a bit too much now!

Some ideas for adding calories: put powdered potato flakes in food, add lots of butter, use only whole mild or cream, etc. Carnation Instant Breakfast is quite healthy and is very caloric when combined with ice cream and cream or whole milk. I would suggest that you do NOT taste this yourself unless you have a need to pack on quite a few pounds yourself.

The results you describe seem within normal limits. When my daughter was an infant we chose to avoid most therapy. I'm glad we did because it allowed us to have fun doing kid things. I'd suggest going to the park, swimming, playing with other kids, etc. Play is hard and important work for a young child.

mom to 3 gorgeous children lilike locke and anjeni born july 22nd 2008 :) said...

I wonder if term babies that appear healthy can have sensory issues also? Amazing he survived what a precious baby! Outcomes as a child may not determine the future for a child. Lilikes teacher asked if shes listens at home lol the gorgeous little princess Lilike. Goes off at school and does other stuff she wants. Although I admire her teacher for being so sweet and calm and understanding with her. Really jsut one of kindy teachers always seemed annoyed at how barely audible and shy she was with them. Not talking to them much but preffering to talk to Margaret. I remember when Lilike refused to go to kindy and she just wanted to go home and be with us. The kindy teachers pulled her away from me and she screamed and stressed more and refused to go back inside but would burst into tears when I had to leave :( Agggggg glad I got to leave behind an annoying midwife today called Linda who gave my daughter Anjeni the hep b injection wheeled her undressed all the way from another room back into my room with her sleepsuit undone legs exposed and walks off out the door and just turns around and says do up her outfit her temp was a bit low you might make her cold and put the blanket back over her to so its not near her face.

Anonymous said...

To: mom to 3 gorgeous children
From: Laura

"I wonder if term babies that appear healthy can have sensory issues also?"

Yes, they do. I have 2 kids. One was over cooked (~44 weeks) and one was raw (late 22nd week). The overdue one had many more sensory issues than my preemie. He's now a young adult and they are finally thinking he may have Asperger's.

There are sometimes underlying issues that may overlap with prematurity. For example, we have a suspected mitochondrial disorder. These disorders are beginning to be suspected in much of the autism spectrum disorders.

Over time, the sensory issues seem to change. Sometimes I think they're better than they were when the kids were little but mostly I think it's a combination of our family making accommodations and the fact that the sensory issues have changed over time.

Kate K. said...

I'd like to echo Sarah's comment when she says: "It never hurts to see a doctor, even if he tells you not to worry. If nothing else, it can be reassuring to know you're on the right track."

My sentiments exactly.

We met with a pediatric neurologist when our son was 7-months adjusted. Our son was born 25 weeks (1 lb 3.65 ozs). At the time that we made the appointment, there was nothing wrong with him per se. It just that he is in such a high-risk group in general, we wanted to get a baseline on him in case things appear later. It takes so long it get initial appointments with specialists, we figured the best approach was to get him listed as a patient with one of the pediatric neurologists as soon as possible.

At the time, she told us that he looked fine for his adjusted age. She thought his head was a little small (for some reason, she used his actual age for the HC which put him at 2nd percentile; his adjusted age HC was 25th percentile). And, she also told us it was probably too early to do a meaningful cognitive evaluation (which didn't surprise us). We have a follow-up appointment with her in a few months.

Hope everything goes well for the child of the Anonymous parent.

Anonymous said...

I sense that you are having a great struggle with yourself, trying to decide what to do and trying to know what is best for your son . . . This struggle is about you--it is yours to own.

The 2nd issue is your son's difficult start in life, his Apgar scores; and now the red flags that you are describing. This part is his, with you playing a supportive role.

The first part, your part, can be changed if you have "the political will". You must force yourself to live one day at a time, even one hour or one minute at a time, not looking ahead, not anticipating anything for the future. (This is the hardest thing I have ever had to learn.)

The 2nd part, your son's part, deserves a 2nd look: Is he able to enjoy toys, treats, a book, your companionship, a pet? In other words, does he seem curious, happy, reaching for toys and pets and for your hand and your lap?
If he is "okay" this way, then it will be that much easier for you to live one day at a time, and enjoy, with him, following his lead, what interests him and piques his curiosity.

I would use joie de vivre and curiosity as my 2 "indices" of how my son is doing. If he smiles and laughs and splashes in the water and gets into things--your pots and pans, the electronic equipment, the knick-knacks, etc., then I would enjoy him enjoying his toddler life . . .

. . . and I would just wait and see (another name for the hardest thing I ever had to do).

I, myself, waited till my son was 6for that first I.Q. test and for the neuropsych evaluation. I believed that any testing done sooner would be invalid.

But there is something you might be able to rule out sooner--and that is vision. If your son needs to get down on his knees for the one-inch drop-off between carpet and floor, it may be that he has depth perception problems . . . I think you can find this out now, with the help of a ped opthalmologist. In my area, the Children's Hospital has such a clinic. Strabismus/amblyopia, an eye muscle problem, leads to a lack of depth perception. Ruling out vision issues would take away one of those worrisome red-flag symptoms . . .

Parenting is not for sissies, is it??!!

Chris and Vic

Anonymous said...

I didn't really read all the information, but the answer to your question, "Should we seek a appointment with neurologist?" came to me after reading the first paragraph of the post.

Like Kate K. and Sarah said, if you think it would be useful, go.

When we had our 26 week twins, a neurologist was part of our "follow up package" but nevertheless, I liked hearing his perspective and knowing that he was one of many eyes that were keeping watch over my daughters' development.

If your speech therapist, dr., heck,even if baby's grandma says things are on track, it isn't going to hurt to have someone else give you their opinion. I feel that everyone has their own experiences and perspective that will broaden my own and show me ways to help my girls develop to their potential. It takes a village.

Good luck!
Jenny

Anonymous said...

I am a PNP/NNP who works with premies and I have had one myself. See a pediatric neurologist, if only to establish a relationship and have some input into maximizing your son's abilities. Choose one who works with a developmental team and includes other disciplines in their visits. Parent concerns are more accurate than any screening tool.