Home › Forums › Special Topics › Toddler Reflux Issues › 24 Month old…still no solids
- This topic has 8 replies, 1 voice, and was last updated 17 years, 11 months ago by
Anonymous.
-
AuthorPosts
-
May 13, 2006 at 12:03 pm #7986
Anonymous
InactiveAlex will be two in a few days and he’s still taking 8 to 9 bottles of formula with Gaviscon a day. Nothing else. He still won’t drink from a cup, he won’t drink water, juice, etc. He takes a few bites of bite and dissolve foods a day and will sometimes eat a bite of my food or his dad’s food.
He hasn’t had anything from a spoon in a long time (just finger foods) and recently I offered him some yoghurt and when he took it he had no upper lip strength to clear the spoon. He used to be able to do this and now he can’t. I’m so worried that he’s regressing with his eating and his oral abilities.
I can tell that he is still refluxing and he is up a lot during the nights screaming and thrashing around, presumably in pain from the reflux. I thought that we’d be over this by now…how much longer can this go on?
I’m the only mother with a huge toddler slurping down bottle after bottle of milk…and if he doesn’t progress how is he going to start nursery at 2 1/2? If I don’t force the milk on him then he just won’t eat at all and sometimes I still have to strap him in the stroller or carseat to get him to take the formula. He is also loosing weight, I think this is because he is not increasing his formula intake even though he is growing and physically more active now.
He’s got another review with a new SLT next week and I’m hoping that they can offer some kind of therapy for him. I don’t know what to do anymore.
Any advice? Help!
Darla
May 13, 2006 at 12:40 pm #7988Inactivedarla—has he had any testing done? sometimes kids won’t eat solids because it is easier to drink a bottle—–i’ve been there with one of my kids. when they get used to the bottle as they get older, it gets alot harder to get them off of it. i don’t know what your son’s condition is, but unless he has some real developemental delays, he may not start eating solids well until the bottle is taken away completely.
May 18, 2006 at 4:18 pm #8285InactiveDarla,
I’m sorry that it took me so long to reply to this post. I really feel for you with your circumstance with Alex. I feel like it’s been a long and exhausting road at a year, so I can only imagine at age two.
I hope that you don’t mind my frankness in responding. I recall you posting to me a while back that Alex had basically gotten over his feeding aversions. To me, it sounds like he is at the point where he can eat, but is still getting too many calories from his bottles. It sounds like he needs to be pushed a bit outside of his comfort zone and given the opportunity to get hungry, and to feel satiety from eating food. 8-9 bottles really sounds like much too much at his age, but I understand your predicament believe me. Having another non-eater, I always said that if Hailey ever took a bottle awake I’d let her go off to college with it! I also understand that when you’ve spent so long trying to get them to eat and in fear of weight loss and a feeding tube, it’s hard to shake the thinking that you need to back off from the bottle, which has been their primary food source. It’s very scary to do. So I understand completely. If it makes you feel better, my daughter only takes 12-15 oz of formula a day, and we work with a feeding doc who wants to cut this by half! It sounds like Alex is taking much more than that.
I think it reaches a point where they have the skills needed to feed themselves and to reach success, and we need to put them in the position to be successful- to challenge them so that they can move forward and learn to eat. I know that you have been working with a feeding therapist in the past, and if you are not still, I would suggest seeking help with transitioning from the bottle to solids. If you don’t have a therapist, work with a feeding doctor, or your GI, or your pediatrician. I would not suggest doing it alone, as you need guidance on how to proceed and how much to cut back. We were told that up to a 5 pound weight loss is acceptable, and that some degree of weight loss is expected during this transition. Of course he will not be happy with it, but they need to move forward. We are currently trying to get the aversions and sensory issues under control, while moving toward self feeding. Once she has moved beyond the sensory stuff and has adequate self feeding skills, we are going to go through the same process ourselves (a drastic bottle cutback in an attempt to create hunger and eating). If you are still working with a feeding team, what does the therapist say about his current bottle situation?
I also wanted to recommend another forum- http://www.parent-2-parent.com. Someone recommended it to me- there are lots of people dealing with feeding aversions and toddler issues on that site. Good luck to you. Alex’s story is dear to my heart, as he seems so similar to my Hailey (except that Hailey also dislikes the bottle). I hope that we are both out of this situation soon, and that they are soon eating us out of house and home. If you ever need to chat, feel free to email me at [email protected] .
May 19, 2006 at 4:18 am #8326InactiveThanks Christine & Hailey so much for your replies, I really appreciate your honesty. I think I probably need to realise that I am going to have to go cold turkey with the bottle. For Alex there doesn’t seem to be any other way.
I really went over and over *when* we should go cold turkey off the bottle. I decided to wait until yesterday when he had an appt with the ped & dietician. They both still feel happy with his progress!! Mostly they had been concerned that he had lost almost 5 pounds in the previous month so they had told me to push the milk for the last two months and not to worry about the solids.
I’ve persisted with feeding him with a spoon a cople of times a day and he seems to have remembered how to use his upper lip now.
Yesterday the ped said that there were three areas affecting his eating: psychological (from reflux), oral motor skills and potential neurological disorder. We are waiting on a referral to a neurological developmental specialist to assess whether or not he has something like autism (which would be mild) or any other underlying disorder. Developmentally he is a little bit behind but he certainly doesn’t display any signs of serious neurological developmental delay.
We will have another SLT assess him on the 31st. If she says that his oral motor skills are up to par as far as chewing and that he is able to eat then I think we will probably either wean him off the bottle or cut it out completely. I think it is best to make sure all the variables are in place for success then to push him rather than to attempt it and revert back to the bottle.
The last couple of nights I’ve sat him in front of the TV with his food and he has eaten (or tried to eat) for at least 30 minutes. The problem is that he will only let me feed him vary rarely and he still can’t really get the food into his mouth very quickly. He is however, still eating all textures and temperatures of food which is great.
I’m a bit torn about the neurological assessment though. We may have to wait another couple of months before that happens but I can’t see that that would have too much bearing on how we would cut out the milk.
Oh…I’m rambling now. Thanks so much for your lovely posts, ladies. I hope your babies are doing well. Will keep your email Lori for one of those dark days when I feel all alone! And will check out the website, thanks so much and wish you all the best with Hailey.
Darla
May 19, 2006 at 7:39 am #8327InactiveDarla,
Good luck with the weaning! For what it’s worth, our ped has also mentioned autism. How much does he weigh? Is his weight good? What happened to make him lose 5 pounds in one month… that is scary. I assume he was sick. It seems like every little thing is catastrophic to these kids in terms of their eating. Hope he’s feeling better, and happy b-day to Alex.
May 19, 2006 at 8:02 am #8328InactiveOh Lori, isn’t it so scary when they start throwing around “autism” and other stuff like that? I find it all so overwhelming right now!
His weight is good now – he’s in the 50th percentile but his height is in the 95th percentile so he’s skinny and tall. He definitely doesn’t look undernourished or anything. He’s got a flat tummy and his ribs are obvious but he’s not emaciated or anything. He’s continuing to grow in his height so they think his nutrition is adequate. He’s gained back 2 1/2 pounds. He’d lost the weight because of sickness, one right after the other. He had bronchitis and he practically stopped taking his formula for about a week and then he was really slow on the uptake. He almost completely went off of it because he kept choking on the phlem. Anyway, he’s back in good health now.
What is your gut feeling about Hailey? Do you think there is another problem other than reflux? It is so hard to tell when it is your only child, isn’t it? I’ve agonised over his smallest behaviours, trying to figure out if he is autistic or unusual….I’ve tried not to read autism stuff because then I’ll just freak myself out. I guess we all come to accept these things in time. It’s just hard to imagine, kind of shocking.
How’s Hailey doing? How’s her weight? Is she showing progress with her texture sensitivites? It’s good to know that they will have you push her like that, I think it is reasonable for me to assume that Alex may loose up to 5 pounds if I take away the bottle.
Take care,
Darla
May 19, 2006 at 8:26 am #8329InactiveHi Darla,
Hailey is now surviving on about 12-15 oz of formula, no purees, and a few puff type foods in small amounts. She still has texture issues, and won’t let you spoon feed her.
Why did they bring up autism with Alex? What kind of things are they looking at? You mention that he is a bit slow in terms of development. (If you’d rather reply to my private mail, I put my email above). For Hailey she has just started to crawl at 11 months, but the main thing at this point is her SEVERE fear of social situations. She is very scared of anybody outside of the family and will scream and cry hysterically in social situations, or even in new places. She is scared of our patio door for some reason. She is actually my second child. I have a 2.5 year old daughter named Sarah as well. She was also a bit over sensitive but nothing like Hailey. It’s really hard because there’s such a fine line between normal and abnormal at this age.
I’m glad to hear that he’s feeling better and has recovered from the bronchitis. Is he in daycare, or are you at home with him? I worry about daycare for Hailey and all of the illnesses that come with it. For now I’m at home with her.
Good luck with all of this. I hope things turn up fine for him.
May 19, 2006 at 11:11 am #8339InactiveHello Ladies!!
Please forgive me for intruding on this post, but I feel I need to add a few
things. I’ve been MIA for a while now, not only are things crazy around
here, but we’ve mainly outgrown any real reflux issues and I don’t feel
that I have to much to add to all of your wonderful knowledge. I do
however read up on posts from time to time and when I read this post I
felt that I should add our story to it. Please know that this is only one
story and that I am just a mother speaking from her heart, in no way
would I want anyone to be offended in any way and if I unintentionally do,
I apologize in advance!!
Okay now that the disclaimer is out of the way!!!
Forgive me cause this may be long!!
A few of you may remember me posting a while back concerning Aidan’s
pickiness in eating, lack of any real speech, and tantrums. You may want
to dig up the post to refresh. I took Aidan to his doctor and asked for a
referral to a SLP for an eval. I was told that I need’nt worry till Aidan’s 3,
but I said he has tantrums because he can’t get his point acrossed and
he’s very frustrated, we’d tried sign language and picture communication
to no avail. Well we got the referral and Aidan went for the eval. back in
March. The SLP asked me why I thought Aidan wasn’t talking and I told
her that I thought Aidan’s oral aversions (he only eats a handful of foods)
were effecting his oral dexterity therefore effecting oral motility. Her
eyebrows shot up and I think she realized that she had a momma who
cared in her room!! The eval went well and at the end the SLP told us she
wanted Aidan eval. by a ped. neuro. and that she thought he may have
verbal apraxia along with sensory difficulties.
Skip ahead 2 months (that’s how long it took to get into the neuro.)
Meanwhile we’d continued with the ST and I have an aunt who’s an OT
who gave me sensory activities for Aidan. Now Aidan was doing a LOT
BETTER!!! He was able to communicate better at home, with the few words
he has along with gestures, and the frustration meltdowns were almost
non-existant, I was really proud of how far we’d come in such a short
time, and I was really confident going to the neuro. Oh I should also
mention that our PCP wouldn’t let us go ahead and work with an OT we
had to wait for a referral from the neuro. The day of the neuro appt we
had a 1 1/2 hour car ride there and another 1 1/2 hours in the exam
room. in retrospect next time we will get there early and let Aidan run
around for 20 minutes or so. Well you can imagine how a sensitive 2 1/2
year old would act being in a strange place with 4 strangers staring at you
for 1 1/2 hours!!! You guessed it, he had a meltdown, the biggest one
he’s had to date. The poor kiddo just sat on my lap and cried the whole
time!!! I wanted so badly to just walk out of the office long enough to
calm him down but they wouldn’t allow me. The neuro didn’t really say to
much for about 1/2 hour just stared at Aidan and said, Yes he has some
issues. Well no sh#t, why did you think we were there!! Finally he said to
me “yes some things are going on here that we need to further
understand, I would like to run a CBC, lead level check (which our home is
only 5 years old, if there’s lead I’m sueing someone!!!!) and also a genetic
screening to check for Fragile X (from what I’ve been told Fragile X
children are pretty severely MR and it would be fairly apparent physically
if Aidan had it). What the Neuro left me with was that Aidan is most
definitely on the “Autism spectrum”. Talk about BLOWING my mind!! I
asked the doctor how could that be when Aidan and I are DEFINITELY
BONDED, he has no trouble with eye contact and affection with any on his
family. The neuro replied that Aidan wouldn’t make eye contact with HIM!!
You can guess that I also about had a meltdown in the office.
We left there and headed down to the lab for the blood draw, Oh I should
also add that as soon as the doctor opened the door Aidan jumped off my
lap shut the tears off and GRABBED the doctors hand and walked down
the hall with him, not caring that mom and dad were still in the exam
room. To me Aidan had proved that he had just wanted OUT of the exam
room!!! On the way to the lab I looked at the diagnosis sheet the neuro
had left me with and there were 2 Dx, developmental delay and autism
were circled. I about fell over!! I had to keep it together because we had
to get the blood draw over with. That was the single most hellish
experience I have ever had in my life!!! They made us hold him down and
even with mom and dad and the lab tech, she still wasn’t able to get
enough, so she slit Aidan’s thumb and spent 10 minutes milking it out of
his thumb!!!! The next time ANYONE wants his blood they will either strap
him down or sedate him, I will never go through that again!!!
When we got back home I called my Aunt that’s an OT I should mention
that her 2 daughters (my cousins) are FRESH out of college and are early
intervention teachers. She was also blow away by what I told her about
the neuro appt. I am fortunate that my Aunt is a town away and she came
over and did an OT eval on Aidan. Keep in mind this isn’t a Dx, that will
come from our actual OT next week. However the eval my Aunt did
showed that Aidan had oral defensiveness, tactile defensiveness, and
auditory defensiveness. When my Aunt talked to her co-workers about
Aidan getting me further advice 2 different therapists asked if Aidan was
a refluxer!!!! I think that is especially interesting to note personally! We
went this week for the OT eval and the OT and ST are going to co-treat
Aidan once a week for an hour till we go back to the neuro (4 months), I
don’t have the blood test results yet I am to call the office in 2 weeks. I
personally think it’s in bad taste to possibly be giving news of a MR child
or something like that over the phone!! I also think it was in extermely
poor taste for the doctor to mention autism after only seeing Aidan for 30
minutes!! The neuro has one more chance and if I leave there feeling the
same way as last time I will search for a new neuro!!!
I am anxious to see what the OT eval shows, if it comes out the same as
my Aunts or different. I have been reading the out-of-sync child and it
has become a bible to me!! There is so much in there that pertains to
Aidan. The mention of autism to me was/is very disturbing or maybe I
should say scary, but as my Aunt told me it can’t TRUELY be Dx till
around the 5/6 year mark, also she said that so many symptoms of SPD
or DSI are similiar to autism and MR and that not enough doctors
(including neuro’s) know enough about it to recognize it without
confusing it with other things. So I’ve made my mind up to push forward
with the therapies, doing as much as I can at home. Aidan has a sensory
box filled with dry beans that he can play with whenever he needs/wants
too. I also do joint compressions by having him lay on the floor on his
belly with his arms and legs straight rolling a pilates ball up and down his
body– He LOVES it! Any activities that I can get him to do pushing or
pulling things around are also good to help coordinate the nervous
system. We aren’t on an actual “sensory diet” yet, but I look forward to
starting one with him. Hopefully that will be in the next couple weeks.
I find it exteremly interesting that some of these older reflux kiddos are
showing symptoms of SPD, I also find it interesting and reassuring that
others are having autism mentioned to them at such an early age. Like I
said at the beginning this is just our story that I thought others may be
interested in. So sorry that it turned into such a looooooong post. If
anyone wants to talk to me off the boards you are free to e-mail me at
Hope this helps someone! Thanks for letting me share our story!
May 19, 2006 at 11:13 am #8342InactiveHi Lori,
Awww, I didn’t know you had another daughter. (I feel like saying “congratulations” but that’s a bit silly. LOL!!!)
I’m at home with Alex – we’ve almost never been apart. He’s quite sensitive to social situations too. And to new situations – being in the hospital or in other new places is very distressing for him although he is getting a little bit better. He’s still not talking, gesturing, pointing or role playing (copying us). He is affectionate and maintains eye contact but his play is a bit unusual – when we go to playgroup he spends the whole time stepping up and down up and down, etc…he doesn’t really “play” like other kids but that’s my personal evaluation of him, not a professional one! He may just be “weird” (for lack of a better word) and that’s fine, the sensitivity is hard to deal with though.
I’m not worried about pushing him though, he’s sensitive and we respect that. He’ll come around when he’s ready. If he gets too stressed out at a group event (like yesterday at a birthday party) then we just leave. I’m not particularly keen on big groups either so I don’t blame him. He’s always been at the end of the developmental spectrum – he didn’t sit up till 9 months and didn’t walk till 18 months. Still within the normal range, just at the tail end of it all. It’s still not that unusual for him to not be talking (I think it is acceptable up until age 3) but coupled with the feeding aversions, they just want to evaluate him to make sure everything’s okay.
Darla
-
AuthorPosts
- You must be logged in to reply to this topic.
