County's Early Intervention Program says DD3 has delays, can you help me decipher this?

[DeChRi]

x-post in Life with Babe

Hello,

My DD3 is almost 9 months.  She was born at almost 39 weeks, natural birth with no meds/interventions, 8lb7oz.  She went on to have some pretty severe GI issues that we are still working through.  She spent much of her first 4 month screaming and being held. 

She is on a no food diet and we started Neocate Nutra at 6 months (an elemental pudding kind of stuff...just like Neocate or Elecare, but thicker). She had severe eating problems then...we tried over and over and over.  Eventually our ped recommended we just get checked over by the Early Intervention team here.  We knew she was not busting through the developmental chart, but nothing alarmed us.  Our first two DDs did everything early or on time.  Motor skills were right on schedule and cognitive and communication were way far ahead. 

So with DD3 we just figured she was a but slower since she had such a rough start, and continues to battle some health issues.   We got the report in the mail the other day.  There was no explanation or anything, just the report.  Every category (except fine and gross motor) were 5-6 month vs 8-9 month. 

I am trying to make heads and tails of what that means.  Are these significant delays? Are these normal for babies with rough starts and likely she will catch up?  I don't really have anything to compare it to, does that make sense?  She seems to be making huge strides every day, now that we have a protocol that has her feeling better.  There were notes like "has trouble controlling her saliva"....but both my other kids were drool buckets when cutting teeth, or #2 when on reflux meds.  IS this really abnormal for almost 9 months? 

Just trying to figure out how concerned I should be.  Thoughts on this from anyone that has had reports like this?

[sbgrace]

Did they have other notes--you mentioned the saliva one. That mention makes me wonder if they were looking at muscle tone over-all but I would expect other notes if that were the case.

Many evaluations are set up so the child must do everything listed in a particular area at a particular age to move their score out of that age. If this were that type of evaluation missing just one or two skills at the 8-9 would put her in the next age group down--or the first one she mastered them all. Sometimes the evaluations are subjectively scored though it shouldn't be that way.

Significant...it would really depend on what is missing and why. It doesn't sound like you got the what but you should be able to get that information. The why you won't know yet unfortunately. Kids with major pain issues certainly can have delays associated with being preoccupied with misery. There can also, sometimes, be a connection between the health issues being battled and the delays (say in a low muscle tone situation). It's hard at these ages to tell what is what. What is she doing gross motor wise? Did she hold her head up and roll over on time?

What, if any, things have you noticed her being behind?

I hope someone is going to meet with you to go over her assessment--are they?

Are her eating issues ok now? Are you working with pediatric GI?

[DeChRi]

We are still working closely with the Ped GI, but are in the process of changing. This GI just wants to drug her more and more, with out a diagnosis, and it just isn't sitting well with us.  Our Ped here is wondering if it is an eosinophilic disorder, so we are also consulting with Cincinnati Children's. 

They noted things like she seemed to understand (her receptive language) most things, but only made some vowel sounds and one consonant (dadadadada).  Comments with cognition and the likes were along the lines of she doesn't raise arms to ask for "up" (but does get excited when I ask her if she wants up. She doesn't wave bye bye.  Doesn't shake head "no".  Doesn't sign even though we work with her on it. 

Her motor and muscle tone actually seems great.  She will be 9 months on the 22nd and is Very physical and strong.  Sits, crawls, pulls up, cruises, stands for 10-20 seconds at a time, not holding on to things, while she plays with a toy.  Has tried to take a step but crashes.  Her core strength is fantastic, arms, legs...all really strong.

The flagged her feeding issues as "severe"...for the reason that.when she was here we did the Neocate Nutra, which is baby food puree consistency. SHe just slopped it out of her mouth over and over.  So we are slated for regular feeding and ST visits.  BUT, the next week after seeing her, we consulted with Cincy Children's.  THey asked us to feed her certain foods to wait for the reaction, so we can see about re-scoping her in hopes for a pos or neg on the EGID possibility.  So this morning I gave her some finger food and she picked em up, popped them in, chewed em up, and swallowed.  Maybe she just is not a fan of purees? 

My main concerns are this point are not so much feeding (I think this is self-resolving and it will be watched by everyone, regardless)....nor the physical part.  She is super strong and physically moving and shaking.  My concerns are the cognitive stuff that my other two did that she just doesn't.  Waving, head shaking, signing, Up, bye bye, noise making other that shrieking.  I think this MOSTLY concerns me because the other areas keep developing in spurts (when she feels good)....like at 6mtnhs all she did was roll, then in the scope of 7 days was crawling and pulling up.  Eating seems to bust through too.  But she cognitive stuff...I don't know.  She plays with toys, like to engage with people, but it just feels like there is something missing I guess.  I am just trying to figure out if it is because of all of her pain and problems.  It is 10:12am now, she has been up since 7am, and been crying for 2+ hours of it.  So not a lot of time to figure things out.

[sbgrace]

Ok that gives a clearer picture. My instinct is they put her at the 5-6 month because she wasn't eating solids (in their minds...sounds like she is!) and the nonverbal communication is behind.

That nonverbal lack is the biggest concern I have developmentally in reading your stuff. Lack of age appropriate nonverbal stuff is significant in my experience (my son also had nonverbal delays). That said, an 8 month old doesn't have to be waving, pointing, and nodding her head developmentally. The one she should certainly be doing is the raising arms to be picked up. Another thing (not entirely nonverbal but shows a lot of things including preverbal communication) is does she hold things up and look at you to show you, get your reaction, etc? Does she consistently respond to her name?

[Chamomile Girl]

Except for the feeding issues that you have mentioned none of the other stuff sounds at all abnormal to me. Especially not for her age! Goodness, I appreciate that they wanted to have her seen because of her GI issues, but nine months is much too young to be able to draw many conclusions about her developmental path. Especially in regards to verbalizing! Mama, I just had my DS into Early Intervention on Thursday because of the fact that he doesn't speak yet (he basically only says dadadadada like your daughter. ) But he is 19 months old, not nine. And the EI people basically told me not to stress about it, some kid just talk later than others (although they still approved him for speech therapy lol).

Your kid is nine months old. Its too early to know yet about significant delays. In fact even with the eating, there are lots of kids out there who will not eat solid foods until around 10-12 months (although I realize that your DD needs to because of her GI issues...but if she has texture problems it might be making the whole process more difficult).

For the record...my kid also does not wave bye, bye, and did not 'ask' to be picked up until he was about 15-16 months old. He is a happy, normal kid who was assessed at 24-36 months on everything they checked for except for language development. Nothing in your post is raising red flags to me, and I suspect that the EI testing was just a hoop for you to jump through (although I remain amazed that they wanted to test a baby so young!).

Hugs.

[DeChRi]

Thank you.  I really think our best route right now is just to interact and work with her as much as possible and see how the next few months shake out.  I feel good that we are "on the radar" and EI says we qualify for whatever help we need or don't need.  I guess all in all, we are pretty lucky to have good support all around. :)  I just can't shake the mama vibe that something is amiss.

[khaoskat]

D - Long time no see, we were in the same DDC club with this pregnancy...

I am in similar boats with my DS3...we have been through the ringinger and are currently working with a new Ped...

As for GI docs..I recommend avoiding Dayton, we only have one or two, the rest have all defected to Children's in Cinci...and the one we have is not always the easiest... (Not sure where you are from)...

[khaoskat]

Ok, have had a chance to read your entire thread..

1) Our children are like 8 days apart (mine the earlier of the two).

2) Language/Speech - both are doing the exact same thing..

3) Motor Skills - both doing the same thing, but your DD is a bit ahead of my DS.  We have not done any solo standing or even attempts at solo stepping/walking.

4) Eating - wow...I can relate on so many levels here..but you also have the allergy/food issues that caused you to stop nursing and switch to the Neocate stuff, and I was able to continue to nurse.  I am not even sure where to begin with my DS and how similar (other than that one thing) they are on eating.  He is a drool box..and I know he is cutting at least 2 teeth, but they just refuse to break through (it is like they have come into full position, but the skin/tissue just wont let them out..you have a definite tooth and can feel it and see it, including the fact that it is now below and not in the gum line)...but he drools all the time and has for months.  We also have GI issues and have moderate to severe GERD.  Right now the last couple of weeks I am seeing a lot more visible reflux in him (he already has a huge amount of silent)...

As for solids --- We also have a huge issue with purees.  Stage 1 and most Stage 2 foods run out of his mouth a lot.  I have to use thicker stage 2 goods or home made where there is not much liquid in them.  For instance -- Mango is great, because it is like a gel, but sweet taters are like water and do not work well.  Now I can cook a sweet tater and he can eat that mashed up just fine..actually can eat it cut into small pieces as it is extremely easy to mash in the gums.

I have noticed he does much better on very mushy solids that are cut into tiny bite size pieces (ie green beans cooked really well and cut into about 1/4 inch pieces..or even he can sometimes handle them whole...mushy carrots, mushy sweet potato....he has even done a few tiny pieces of meat...

We also have EI involved, and are doing more OT to work on feeding issues.  We have failed two swallow studies which suggested liquids thickened to nectar consistency.  But the stuff we tried while he was in the hospital just made the breastmilk too thick (almost consistency of molasses).  We are also getting constant ear infections because of the reflux and swallow difficulties.

I will say SBGrace has been great answering questions about reflux for me on the Health and Healing Board.

[happysmileylady]

Stories like yours are why I haven't taken my dd to first steps despite being advised to do so by many others.

We don't and didn't have the same feeding issues that you have, though we did deal with refusal to nurse and ended up having to stop bf ing all together at 5 months.

My dd is currently 2.  We did have a LOT of screaming and crying for her first 6 months or so.  It was miserable.  We never found a cause though and kept getting brushed off as colic.

Her expressive communication has always lagged behind, been at the very very back end of normal.  I think she was almost 2 months old before she smiled.  She was almost a year old before we got a true laugh out of her.  She was approx. 15 months old before she would wave at all, and I am pretty sure she was 18 months old before she ever raised her arms to be picked up.  I know she was between 16 and 18 months before she said her first word.  I just did a total count of the words she can say last week, it came to less than 100 and she cannot say her name.  She KNOWS her name, she cannot say it.

I am confident that if she were to be tested by first steps (our state's EI program) they would say she was delayed.  But it's stories like yours and several others of friends with kids who do and do not actually have issues that keep me from doing it.  I don't think there's anything wrong with my dd, just that she's spent so much time learning all the other stuff (like climbing the banister and how to pull out drawers to make stairs to climb up to the counter.) that she didn't really focus on expressing herself.

And this week, it truely seems like my dd has started speaking in sentences overnight.  It's not really OVERNIGHT, but she was not speaking in sentences last week, and she is now.  She spent time on Saturday at my sister's cake shop pointing to every painted dot on the wall that she could reach saying "Hey!  It's a circle!  Hey!  It's a circle!  Hey! It's a circle!"  Today, we asked her where her drink was.  This has been a good distraction technique in the past, because she would run and get it.  Instead, today, we said "where's your drink?" and she responded clear as day "I don't know" complete with hands out, palms up and head shake.  My youngest stated crying and dd2 said " Oh No!  Baby is crying!" 

She's still got a ways to go, she still can't say her name and there are still a lot of words she doesn't say/know, but she's making progress very quickly, very suddenly. 

[marge234]

It can't hurt to take whatever services EI will provide, and press them for a verbal explanation.  These programs are short-staffed--I'd guess they used to go over these reports with parents in-person but now simply mail them. And by all means keep listening to your mama sense. So much of the brain grows in the first year, it's smart to be aggressive. As I'm sure you've realized, many issues are much more easily resolved when a child is younger.  

Oh and GOOD FOR YOU for being skeptical of the specialist who wants to drug/treat symptoms without knowing what's going on. (Not saying you shouldn't medicate, maybe DD needs them, just that it makes sense to push for a better explanation.)  And for acting on your feelings.  It's hard to challenge an expert.  

There are people who can come up with a helpful working hypothesis as to what's going on with your DB--if not a diagnosis--and give you a plan to help her.  Unfortunately, these people can be tough to find. FWIW, I've read good things on here about Cinci Childrens. Again, keep pushing until you're satisfied.

It's outside the typical experience, but it's actually not at all surprising that EI evaluated your child this young--that's the purpose of the program.  My DS was assessed at 7 months and the evaluator said our ped should have referred us at 4 months when he wasn't bringing his hands together.  Unfortunately, our EI missed what was going on with DS. Still, they validated our feeling that something wasn't right, and the PT he did through them was helpful. We ultimately found specialist who figured out what was at the root of what we are seeing--motor planning/sensory stuff--and our LO appears to be catching up.  

A friend's DB had feeding issues from birth, and was assessed before 6 months.  He's been getting OT, doing lots of floor-time, and they are confident he will not need help past age 1.  

I'll ditto that SBGrace's posts are extremely helpful.  I searched for her and read all of them when I was trying to figure out what was going on with our DS.

Just some random thoughts.  I hope you get some answers and support.  Take care.

[khaoskat]

Happysmileylady - Just wanted to say that I have had an absolutely positive experience with our State's EI, twice now.

DS2 - we got referred to them when he had a speech eval at age 2 (totally non verbal).  Except a bit of a slow start due to the 4th of July Holiday and some work being done in the building around that time, we had no problems.  We started him in a Parent/Toddler group during the summer (EI school not available during summer, but the P/T group was).  We got one of the very first openings, for the full week (4 days a week) that came open because he was so far behind.  They even worked with us on potty training him when he was not at home (at home he would just run to the potty and go by himself...out of the house he couldn't express his need to go so we had to put him in pull ups them.  We figured out a sign to use for potty, and started using it with the word potty and every time we took him to the potty or we went ourselves or the school took a child.  It was not long before he was training out and about.  I really miss his EI teachers and programs...they were so much better than the 2 1/2 years we spent in the public school system.

DS3 - We technically qualify for it due to his multiple diagnosis (but mainly due to his pyloric stenosis being misdiagnosed as a milk supply issue and him being labelled FTT).  He also qualifies because he has failed 2 swallow studies and also I think because of his GERD (causing weight gain issues again).  They think he is doing great, and is working with us 1:1 about every 2 weeks (I cancelled last one because of me being sick; and this one is cancelled because our person is on vacation).  They evaluated him and talked to me about it at the very end (preliminary results)...they are basically just monitoring in case his diagnosis causes problems then we are already in the system with an open case and don't have to wait 4-8 weeks to get evaluated and services implemented.

So, please know that there are some good experiences out there as well.

[DeChRi]

THank you all for your replies.  I have a million comments but am fighting through a family of strep throat and have limited brain power right now. :)  I will come back soon and comment. :)

[coyotemist]

My guy has had feeding issues since birth, and is now 27 months.  Despite all of that, he is very smart, and has caught up with most of his delays with help from feeding clinic, developmental clinic, the ENT, the GI doc, and early intervention.

We still don't know what caused his issues.  His endoscopic biopsies showed no eosinophils, despite atypical tissue.  No one can answer my questions, at least not in the western medicine side of things.  We are continuing with supplements and immune supports that hopefully someday he will be better all the way.  In the meantime, he's doing very well (despite a 24 hour hospital stay for bronchiolitis).

At 9 months, it's very hard to tell where they will be in 2 years or 12.  Continue doing what you are doing, get help from as many different sources as possible, be skeptical, and have faith in her, and that she'll do what is right for her when it's time.

[DeChRi]

Since my original post, she has made large strides. I've decided that more than likely she will catch up and if not, well then we are set up the right resources. :)

[Chamomile Girl]

Originally Posted by DeChRi 

Since my original post, she has made large strides. I've decided that more than likely she will catch up and if not, well then we are set up the right resources. :)

Yay!

You know reading threads like this make we really realize how much I can't wait for my LO to start being able to talk to me. I guess patience is not one of my strongest virtues.