start pt?

Hi all. I'm just wanting to see what some of you think about pt. My DS was born at 29 weeks. He spent 5 weeks in the NICU with no major issues (cpap for about 5 days). He was breastfeeding fully after being home 2 weeks. He did have several heart murmurs but they have all closed. He's not a great sleeper, but we have really not had many difficulties outside of that and colicky stuff.

He is now 10.5/8 mos and is rolling over both ways and sitting up very well on his own. He doesn't like tummy time as much anymore since he can do more sitting. He will occasionally get on all fours from his tummy when he's on something soft. My ped said if he is not crawling or pulling up (which he really isn't working toward at all) by his 12 mos check up then she will refer for pt. I am wondering if I shouldn't ask for the referral now.

I understand that just because we haven't had many major issues yet, doesn't mean that he won't face difficulties in the future with his health and/or development. I want to be proactive, but I feel kind of silly because he seems very much like a "normal" baby if you consider his adjusted age. My DH wants to wait until the next check up but will follow my lead. I am wondering if there are any benefits to waiting? Or any benefits to starting sooner? Does 1.5 months matter?

Thanks for reading. It is so nice that you understand.

-Grace

Report post

21 replies. Join the discussion

A few thoughts:
1 - Crawling is not a milestone, so your pediatrician wanting to see it by 9.5 months adjusted (1 year actual) is pretty arbitrary.
2 - If you ask for an Early Intervention evaluation for PT, he likely won't qualify b/c he is showing no signs of delays. If you are asking for a private referral, you can do that anytime you want. However, with no issues yet, they may recommend you waiting. There won't be a whole lot of exercises for them to do if he doesn't have specific issues.
3 - If you ask for an Early Intervention for PT, and he doesn't qualify, you have to wait again 6 months or so before asking again. And since he was denied once, it may be harder to get.

Personally, I would wait to see how he does. Keep encouraging tummy time (on your belly if that's better). Good luck.

Report post

I would probably hold off as well. In the meantime, I have a couple of suggestions. Definitely keep up the tummy time, even if he hates it. As well, what about getting some toys to pique his curiousity and "require" him to move (i.e. crawl) to investigate? We had a little tikes playhouse type of thing for DS. It had doors for him to crawl through so he could play with the things inside. You never know when he'll suprise you with the pulling up. DS was sitting in the bottom of a shopping cart when he was about 9 months old. I was browsing at some plants and sat the one I wanted in the seat (since he wasn't using that spot). At that moment, DS pulled to a stand for the first time and reached for that plant. Of course, I quickly rearranged things and belted him in, since he was no longer immobile, but my point is the proper incentive to achieve physical milestones can be anywhere.

Report post

Is the doctor well-read on issues of prematurity? Specifically, when he or she says 1 year, does he or she "get" that preemies do NOT follow birth certificate age and that development tracks "adjusted" age (under best case preemie scenarios)?

I agree with mygirlsmom. Crawling isn't a milestone. Moreover, for kids who do crawl, there are "healthy" kids who do it AFTER 9.5 months adjusted. In fact, babycenter places crawling between 7 to 10 months (for full-term babies). See: http://www.babycenter.com/0_developmental-milestones-crawling_6501.bc

I know that having a preemie is stressful, but there often isn't a way to predict things early. You just have to wait it out and hope that shoes don't drop. That your child has done well so far is a great thing and may his good health continue. And a month or month-and-a-half is HUGE amount of time for a child who is really only 8 months adjusted. Given the range noted above, I wouldn't even begin to bother with anxiety over the issue until your child is 10 months adjusted. And even then, some kids don't bother with the crawling stage.

Report post

mygirlsmom: Thanks for the input. We did talk with EI a few months ago before he was pushing his chest up when laying on his belly. The pt at the NICU follow-up clinic was concerned about that though my ped wasn't. The EI didn't do the full assessment but we talked about his development and she said it sounded like he wouldn't qualify. I wasn't concerned at the time either so I didn't push it. I didn't know about the 6 mos time frame to re-apply, that's probably why she didn't encourage me to get the full assessment. I guess I would be asking for a private referral at this point, but I don't want to push if it's not necessary.

madison 2001: Thanks for the suggestions. He has been more interested in toys that make sounds. It seems to help him do more tummy time, so I will keep it up. My husband does a lot of the belly-to-belly time with him in the evenings. It is a good reminder that progress can seemingly come out of nowhere. Things have been much slower with him, but I remember my DD doing things all of a sudden. He could surprise me!

katek: Yes, the ped gets the age thing. I think she may be concerned more about the development of his upper back and arm muscles (he has very skinny arms), not exactly just that he's not crawling/pulling up. We don't talk a lot about preemie issues, she's never mentioned RSV, she mostly just comments that he's keeping his growth curve even though it's at about the 10th percentile for his adjusted age and that he is interacting well. Sometimes I feel like I am missing something, but maybe it is because he hasn't had a rough go for birth scenario. Thank you for the encouragement. I see your reasoning about the month and a half being a lot of time -- a lot could change by then.

I think I've fallen into the "caught up by 2 years" trap, wanting him to be doing more than he really needs to be. My family has also encouraged me to get him started on therapy sooner rather than later. It really means a lot coming from other preemie parents that it's okay to give him more time. I think I need to cool my jets and enjoy this stage of minimal mobility. Thank you.

Report post

RE: Sometimes I feel like I am missing something, but maybe it is because he hasn't had a rough go for birth scenario.

You seem pretty wise in trying to balance the knowledge that your son is doing really well going by adjusted age and knowing that sometimes problems appear later. It's true. Sometimes they do. But then again, sometimes they don't. The child who hasn't show problems yet has a better chance of making it through without "issues" than the child who had a rougher start, all else being equal.

RE: I think I've fallen into the "caught up by 2 years" trap, wanting him to be doing more than he really needs to be. My family has also encouraged me to get him started on therapy sooner rather than later. It really means a lot coming from other preemie parents that it's okay to give him more time. I think I need to cool my jets and enjoy this stage of minimal mobility.

That's actually sweet that your family understands that there are risks to being a preemie. I'd say that the majority of parents on this website have the opposite problem with family in that their families say things like "he's fine," "all boys do that," "stop worrying," "well, I think he looks normal," etc. Families often go into denial mode.

Sometimes families compare the preemie to other kids in the family who were born full-term NOT correcting for the child's age, which leads to faulty comparisons and much unnecessary anxiety. Of course the child born 11 weeks early isn't standing by 7 months actual unlike his little full-term cousin who is 7 months, etc. Then, there's the talk of "poor" preemie Joe b/c he is "behind" when in reality he very well may NOT be behind at all going by adjusted age and taking to account that some "normal" babies don't pull to a stand until much later (10 months adjusted maybe more).

I'm glad to hear that you are very conscious of adjusted age. It's always a good thing when parents understand that's what "should" have been the goal IF baby had been born "on time." If the preemie is meeting all bench marks by adjusted age, he isn't delayed or behind. He is doing very well for a preemie. It's almost as though the whole preemie thing didn't happen.

Given that development starts to unfold after the sperm meets the egg NOT when the baby happens to come out of the womb, due date age will a better marker of development than birth certificate age. But given that our society isn't exactly that smart when it comes to scientific thinking generally speaking, it does make it easier when one can merely use birth certificate age so that one can avoid all of the blank stares from those people who don't seem quick on the uptake after one explains preemie development. Fortunately, by 2-3 years old, there's enough natural variation in what kids do that if you use birth certificate age, it probably won't make that big of a difference. After all, by age 2, people often drop the discussion of skills in months, even though young 2s are less developmentally sophisticated on average in comparison to older 2s.

My son was one of the fortunate cases in which we were able to use birth certificate age by 2 for simplicity's sake. In fact, at 26 months actual, we put him in daycare into the 2 year old room even though he wasn't yet 2 adjusted. And it was OK for him. No question in my mind that he looked and acted like the youngest 2 in the room by far. He'd been tested by his OT a couple months earlier on visual cognitive integration tests and either looked like he was on the high end of normal for his due date age OR the low end of normal for his birth certificate age. Big picture was that he was in the normal range either way, which is why we went ahead and made the leap to birth certificate age at that time.

If you end up being able to use birth certificate age sooner than later, just keep adjusted age in the back of your mind if some later skills don't happen quite as fast as the child's peers. For example, potty training. We often see parents return to this site b/c they were told use actual age at 2 and gasp their 2 year old isn't potty trained yet. Is the child "delayed"? What's wrong with him? Etc. And often times the answer is "adjust" and keep in mind that some "normal" kids don't potty train until later.

I've said this before on other posts. My child is in K. I can tell the January birth days from the April birthdays from the August birthdays. Even though they are all kindergartners, one sees 3 months in age make a difference even at age 5-6, which is why I suggest preemie parents have adjusted age in the back of their heads even after age 2.

Report post

You could also qualify for services based on birth weight (we did)- you could do a little checking before calling....follow your gut. If you need PT- the sooner, the better.

Report post

RE: Fortunately, by 2-3 years old, there's enough natural variation in what kids do that if you use birth certificate age, it probably
won't make that big of a difference/

This is making sense to me now. I'm not trying to make sure he is caught up by two, but by two he may seem enough like a 2 year old that his birth date age will seem to fit him. Thanks for explaining it so well. And yea for your son for doing so well!

I totally understand the "blank stares!" I hate to use his adjusted age, because I haven't had a full night's sleep in 10.5 months, not 8, and that is a big difference ;-) But, it does make it so much easier to say the age that he looks most like. And occasionally, when a stranger asks his age and I explain he is a preemie, they say, "Oh, he looks like a 10 month old to me!" Warms my heart, even if it is just a stranger's opinion.

jthran: He is just above the threshold by birthweight and age. That's what I keep hearing, "the sooner the better," but I think you are right to say "if he needs it." And I think at this point, he's not showing that he does. Thanks for the encouragement.

Report post

Depending on the rules in your state, trying to qualify for EI services doesn't always follow "the sooner the better" rule. In fact, some states have rules over how many times in a given period of time they will do an evaluation. So if you ask for an evaluation before the child really shows a "delay," the you might have to wait a couple months before they do another evaluation, which is why one probably should wait if there isn't an obvious delay. One exception may be if the child was born exceptionally early or light, the EI program *might* have some monitoring services in place.

My son received OT and PT for about two years. During that last year, the OT services took place every three months (for monitoring). One thing about therapy is that the therapy sessions in and of themselves won't help the child. But the therapists will train the parents/caregivers to do exercises which have to be done daily (sometimes several times a day) that will hopefully help the child. I bring this up b/c some people think "the more sessions the better" and if a problem doesn't really exist OR the problem is pretty light, it just means that the therapist will be working with the parents/caregiver more on the same stuff. I guess that's great if you want visitors in and out of your home a lot. I liked my son's therapists but I found having people in and out of my home a little disruptive to routine after awhile. Consequently, we only had therapy as long as we felt it was necessary and beneficial.

There are things that one can do to help a child build up the chest and arms. If baby is handling tummy time and scooting a little bit, you can use pillows or cushions (with parent monitoring of course!) to create a little harder of a course for baby to scoot around. We often took our couch a part. Also, you can put baby in-between one's legs, sitting on the floor and make a jungle gym with one's legs for baby to try to pull up on a little. And of course, one can do modified tummy time on one's chest where baby does tummy time on top of parent and parent varies the level of the inclined (parent gets a work out too).

Report post

It sounds like your baby is doing great and is not behind at all. I share the opinions above that even if he is not crawling by 12 months, he still has plenty of time.
The way you put it, it doesn't sound like you pediatrician is alarmed, just very conscious of the situation. While I agree that your baby has plenty of time to crawl and all babies develop differently, it is good that someone other than your family is keeping a close eye. Where I live, there is a wide government sponsored network of PTs so babies can get referred quickly. I have several friends whose full-term babies were referred (and nothing was really wrong with them). They were a bit apprehensive at first but then they really welcomed the opportinuty to ask different questions, as the PT showed them the best ways to promote healthy development of gross motor skills, told them which prop to use/not to use, which shoes to choose etc. So perhaps even if your baby is referred, it is beneficial and they will tell you what to watch for later on.
One thing that seems to fascinate all babies is mobile phones and cameras. My daughter actually started crawling in order to reach my mobile phone. I wiped it with alcohol wipes several times a day because of the germs :). This was also useful - the ball moves on its own a bit so they have to crawl or support themselves with one arm in order to reach it http://www.amazon.com/VTech-Move-Crawl-Electronic-Activity/dp/B000231EX2/re f=sr_1_46?ie=UTF8&qid=1359727732&sr=8-46&keywords=baby+crawling Before she started crawling, we found this to be great. I like it because it is so simple http://www.amazon.com/Earlyears-Fill-Fun-Water-Mat/dp/B000E82WRM/ref=pd_bxg y_ba_img_y
Good luck!

Report post

It all sounds like good advice above and it does seem a little early to intervene. I wonder though if you may want to consult privately to get something tips of things that to you could be looking for? Katek has posted in the past about the way a movement is made, not just the age at which it is done. In this case, it may partly be a matter of knowing your temperament. I felt better having a list of what to look for and how things should be done. Others might prefer not to watch so closely as that would cause the parent stress. (and it's common in families to have one spouse feel close watching is comfortable and the other spouse feel the opposite).

As an example from our experience, our daughter crawled late but she did crawl. Her EI OT pointed out then that when she was crawling she was looking at the floor underneath her and not looking up in front of her. This sounds subtle, what could such a small thing mean later, etc? Another therapist explained that it may be a problem at school age when she has to look at her desk in front of her face and then look up at the board. So, I am glad that we were encouraging her to look up in front of her, even though she was technically crawling, it wasn't quite right.

I don't mean to concern you more, but as you are already concerned, this is one option for watching and tracking development.

Report post

This is one of the most useful things our OT recommended. A great introduction to babyhood development. There are five episodes on DVD. Our library had some of them and I think Netflix had them. Absolutely amazing.. especially the one about movement called "To Walk."

http://www.amazon.com/Baby-Human-Geniuses-in-Diapers/dp/B000127IG6

Report post

My first was full term and she never crawled! She was pushing herself backward on the belly, turning around and continue backward. Then, sitting, she started to make her way from one place to the other using her feet and arms. She got so good at it that she disn't want to do anything else. She was not even interested to walk until 15 months! But she was a really careful bb, never bump her head and was doing things only if she was sure she wouldn't hurt herself, naturally. At 3 she was a shy and careful gymnast. Her development totally reflected her personnality and no doctor ever doubted that she was totally normal.
I wouldn't even try to make him crawl if he doesn't like it. Doesn't matter. My 30w crawled a few times but very closely before walking at ~13 months and she had a perfectly normal development!
Try not to worry. :)

Report post

RE: Florinas_Mom's comment: Katek has posted in the past about the way a movement is made, not just the age at which it is done. In this case, it may partly be a matter of knowing your temperament.

That's true, Florinas_Mom. Our son was already enrolled in PT (b/c of perceived delays when he was about 5 months adj) by the time that he started standing and walking. Now, if an evaluator had done an eval at 12-13 months adjusted, our son would have technically "passed" the evaluation (based on their "tests" which aren't that nuanced; they're pretty crude really). His PT, however, made some pretty keen observations that were pretty subtle. They had to do with foot placement and stance. As a result, she had us put him in what I call "hot pants" a couple times a day and work with him. This helped close up his stance and side step issues that would have occurred down the road if we hadn't caught them early.

For pictures of the "hot pants," see this old thread: http://www.inspire.com/groups/preemie/discussion/18-month-old-with-strange- gait/

I have a friend with 32-week old twins in Maryland. Sounds like Maryland's early intervention is fairly progressive as her twins are being monitored by EI every couple months even though they are seemingly doing everything appropriate for their adjusted ages. I think that's great that she is in a state with a progressive view of early intervention.

It probably isn't a bad idea for those with kids 32-weeks and under to request some sort of EI evaluation around 1 year adjusted if their pediatrician isn't really that focused on development (which many are not). By 12 months adjusted, there are some markers that should be met on speech, as well as gross and fine motor skills. Not a bad idea to get that extra set of eyes on baby just in case. Plus, a lot of preemie parents have some justifiable anxiety around their kids b/c of "risks." Having an evaluation at that time should either (1) alleviate anxieties if no problems exist or (2) get kids help early if there are any perceived "lesser strengths." :-)

Report post

hi - you got great answers from everybody!
i would like to add (as PT) one thought:one nice fact about PT is, that there should never be a situation to regret that you did a PT-assessment (of course in condition you got a professional and friendly pt).
if it's not necessary, it is good to know and will give you (and family) peace of mind; if it is necessary, so you better start now and same time try to get the EI (i do not know about their rules...); if you decide to do some treatments and guidance, maybe follow-up ( just to be on the save side), so you do know that it is maybe superfluous - BUT - physio is not like superfluous medicine, it does not do any harm.

i thought bertat's ideas are very helpful (and i like her toys!)

if you have a video , you could send it!

ps. DS sounds ok, but "sounds" gives much less clues than to see him. i surely would refer to assessment/evaluation, probably no treatment, only handling-instructions and follow-up.
ok?and good luck !

BTW: did you check up the sleeping-problem? there are ways to do to try to improve the situation. ((-:

Report post

Thank you for all of the suggestions! Cornelius has been pulling his knees up to be on all-fours much more in the past couple of days. It has really helped to put favorite toys just out of reach ;-) His sleep/eating is changing a bit too, and it seems to me that change always begets change. He is nursing much better overall and eating a bit less at mealtimes (or throwing up a bit so I am decreasing his amounts). He was only up once last night, but I didn't go in and he went back to sleep in about 45 min, and he has been napping much less during the day. All that to say that he may be switching things around to focus more on his motor skills for a bit. It's so funny how babies go through phases of heavy sleeping, eating tons, or making headway in gross or fine motor skills.

Florinas_Mom: Thanks for the video suggestion. They're at the top of my Netflix queue.

Katek: I like your suggestion of the EI evaluation at 1 year adjusted. He will be going to the NICU follow-up at 1 year actual that will hopefully give us some good feedback as well. I will definitely keep this idea in mind and discuss it with our ped.

Rutiphysio: Thank you for your comments. I see what you mean about pt not being superfluous medicine. It would be helpful to have more ideas of exercises to do, I'm just going of off a "Tummy Time" pamphlet we got at the 6 month NICU Follow-Up Clinic. I think I will give it a bit more time though before doing an eval since the next Follow-Up Clinic is pretty close and we will see a pt there. About the sleeping, I think things are moving in a positive direction, though slowly. I have always deferred to feeding him if he wakes at night for two reasons: 1) I don't want him to go hungry 2) His sister (23 mos) is right next door and though I rarely hear her really wake up, she is more tired after his louder nights. He has been a very distracted nurser for months now and I've had to nurse him just before naps which has created its own set of problems. I think he is finally coming to a point where he can put himself to sleep well and is getting more milk during the day so he doesn't need it at night. It's been a long road, and it's not over yet, but to keep nursing has been my priority and I think we're going to make it!

Report post

Bertat: Thanks for the comments. My neighbor has that ball. I think I will ask to borrow it and see what he thinks.

BellaC: Thanks for sharing. It's so easy to worry when you have a perceived disadvantage. It's great to hear that your 30-weeker had very normal development!

Report post

I've thought of some other things you can try:
- sit on the the floor with you legs straight, a bit apart, and put your son between your legs (he should be looking in the same direction as you). Put a small ball or another small toy on your thigh and encourage him to take it, first with the hand closer to the thigh and then with the other. Make sure that the ball is not behind him so that he doesn't stretch back (it should be roughly parallel to his knee). Then put the ball on the outer side of your thigh. Increase the distance as you see fit - the goal is for him to reach over the leg, support himself on one arm and grab the ball with the other. Hope the description is clear. I'll try to find a photo. If he enjoys this activity and because he already sits well unsupported, you can it without your assistance. Make sure that the toy is not behind him. It may be interesting for him if you put several toys in a smaller box and he can choose one (the idea is that if the toys are in a box, he will have to eventually support himself on one arm and reach with the other) or if you put a low obstacle in his way (rolled towel, your yoga mat, etc.).
- similarly if he is sitting in your lap at the table: turn the chair so that the table is on your left or right hand side. Place a small car/train etc. on the table and again encourage reaching for it with both hands. When he pushes the car farther, he will probably eventually want to climb on the table, which is fine, but rather than allowing him to stand, provide firm pelvic support so that there is a lot of weight on his arms
- eventually you may try to put him in a cardboard box and see if he can climb out
- when you change his diaper or put him to bed, try to lay him down on the side. Do it slowly so he can anticipate what you're doing and he will extend his arm. Let the arm touch the surface first so that he can feel the weight of his body on it, then the hip, then the head.

Report post

hi bertat - i really like the exercise during nappy-time: great!

(the first exercises are meant to be in sitting? .... i like it little less.....i prefer......tummy-tummy-tummy.....!
he will sit so much in coming years.....(as we all do.....) ..

sprinkldonuts: DS does sit up by himself??? i do not mean : stay in sitting position, but, you write : "he sitting up very well", so -
if he does sit up by himself, and does go up on all fours....that's really nice!!
anyway... some golden rule (ok, maybe "golden"...only!): creeping and crawling, and sitting up from laying position - it's now or never, i mean, as soon as baby knows how to stand and walk......he will prefer to get up, and not crawl much....crawling on 4 (or 6) is rather hard work, very nice working on shoulder-girdle etc, so in a baby who shows sitting up at age 8m, i do not have to push anything, just to give him the opportunity to be "on the floor".
ok?

Report post

The other exercise starts with sitting yes but is about transitioning to all fours from the sitting position, activating the arms and eventually crawling (by moving the toy further and further away). I thought it was appropriate, because sprinkledonut said that the ped was concerned about weak upper back and arms :)

Report post

I hear you on the concern on development. But you have some great advice on here. Keep that worry in the back of your mind and keep a focus on what you can do now.

The issue with EI is that in many states the % of delay is significant. That is likely why your son wouldn't qualify right now. I would suggest calling the EI program and asking what their % of delays should be in the various areas of development. That way you know.

Now, you could contact a private therapist and get an evaluation done privately. Yes, $$$. But you might have an answer now regarding not only what is going on but what you could do as things progress and you, yes, potentially wait. Its a thought. Call it "peace of mind" that you pay for. Or perhaps your insurance would allow for coverage? Since I recall our EI program took insurance, this might be a possibility.

Also - our Health Department had an Infant Monitoring Program which gave us access to a social worker monthly to check on our daughter overall and a PT visit every quarter to do an overall developmental check. That was free and it was an "option" on our discharge papers that I jumped on when we got home and settled in post-NICU. Perhaps your state has such a program? It might be worth a call to your local Health Department or to your local Family Services organization for your state/region/county.

Good luck!

- Deb

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Discussion topics

Preemie links and resources


Narratives from the NICU -- Read the special report

Community leaders