Son has Failure to Thrive and mom is in need of a hug

Cheryl - posted on 11/24/2010 ( 9 moms have responded )

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New to this site, and I am in serious need of some comfort. My 14 month old son so far is undiagnosed, aside from the failure to thrive, no underlying cause has yet been found. I'm working with early intervention, and he seems to be going backwards. He slouches when sitting, so we've been working hard on tummy time to try and strengthen his core muscles, but he will no longer tolerate it.

How do I keep my patience, and (more importantly) how do I keep from becoming depressed?

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Irene - posted on 02/24/2011

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You've had lots of great posts, but if I can add one suggestion? As far as tummy time is concerned, my daughter prefers to have me down there with her. She lays on my chest, face-to-face or I get on my tummy with the tops of our heads close together and talk/sing to her softly as she moves. She can now tolerate about 10 minutes at a time.

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Kathy - posted on 02/22/2011

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I realized just now you asked about yourself too. Patience that's a good one. You start with, if he could do anything about it he would, and walk away remembering you are only frustrated because you love him so much and want him not to have to struggle. Then forgive your self you are only human. Network with positive people who are supportive of your struggle. The most supportive people I have found are other people with kids with special needs because others just can't understand how hard it is, that you grieve for your child because no one dreams about having these struggles and you grieve for the "normalcy" if there really is such a thing.
I just started treatment for depression because I never had time to deal with it before. If you need that kind of support go get it. Remember you are not alone in your journey.

Michelle - posted on 02/22/2011

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I also agree with going to see a developmental pediatrician or a pediatric neurologist. I have surviving quads and one of my children was like your child. We found out he is hypotonic (still do not know the cause) and it can effect speech and eating.

Kathy - posted on 02/22/2011

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If you haven't done so take him to a developmental pediatrician and a pediatric neurologist. My son has low tone issues. Now that he is 6 I find out there are a whole lot of things he struggles with and I didn't know to ask and the people I was working with didn't know either. Things to look up are Sensory Processing and Regulation and Motor Planning. If the therapist mention things like Hypotonia look those up too. I keep finding out things I wish I had known before we missed out on develpmental stages. Different therapists in each specialty specialize in different things and may not be educated on some types of treatment or may not be explaining what they are doing. I agree it is important to be comfortable with therapist. Sometimes it just take a lot of time. I've seen things I've done with my son pay off years later when I wondered if it was doing anything. Make sure you are have had an OT, a PT and a Speech theapist evaluate him. My son should hace been getting OT and becuase there wasn't one availble not one told me he needed it. I even had a Dr tell me not to disappoint my self by pursuing therapy my son needed if it wasn't available. How crazy is that. Keep going you will never regret having put in the work and remember to take care of yourself too.

Kat - posted on 02/06/2011

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My 4th child, 7 years old, started early intervention at 18 months, basically has poor muscle tone from her core-which branches out to speech issues, fine and gross motor skills etc. It's important to like and trust any providers working with your child, and that as he gets older that HE likes them as well!! Hang in there, my daughter has come a long way, and is one tough cookie!! Talk to everyone and anyone, 9 times out of 10 the person you chat with has or knows someone with a child with some sort of special needs. YOU can learn a lot in a short conversation in the dr's office, at a birthday party etc. You are your son's BEST rep and you CAN do it!!

Marie - posted on 01/28/2011

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Hi kimberly,my son is similar he's nearly 6yrs old and still not diagnosed and underweight, he's only in age 3-4yr clothes, and on 4 meals a day, he has special milk on prescription with added vitamins, and a god send when he's ill and off food his milk is the only thing he will have and he still has a bottle, you do have the patience your just mad in a way because you can't mend your own child, you will get stronger and you may get a bit depressed when your least expecting, ask for help and let people help you thats the most important. My son sat independantly on a school chair today at nearly 6yrs old, i can't tell you how happy i was to see that, it was lovely.

Lisa - posted on 01/24/2011

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My eldest son was also the same when he was a baby/ toddler, our specialist recommended a peg tube in the stomach and a special feed and a glucose syrup which we used to boost his growth. He also has a serious kidney problem which can affect growth. we also had problems with him with his slouching, plenty of swimming and upright activities help to encourage him to sit up and work on holding back his shoulders. when he was old enough we got him into riding sessions for special needs and disabled kids. this has been the best for correcting slouching and encourages them to sit upright and pull the shoulders back.

Its hard work being a mum and even more so when things arent straight forward but you will get there. make sure you and your son are involved with mother and toddler groups and also ask your local health nurse if there are any other mums who are having to deal with challenges for their kids, it doesn't even have to be the same problem you have its just good to have someone you can talk to that can share a frustrated moan and a sanity restoring coffee. hang in there are keep at the doctors to give you a diagnosis, it really does help .

Sheryl - posted on 12/13/2010

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best advise i can give it hang in there and keep trying to be there for him and showing him lots of love. plus keep working with him all the time on his things throught out the day. best of luck! just know your not alone.

Kimberly - posted on 12/04/2010

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You're not alone. But you will need patience. Don't let it get you down. Find as much support as you can and that will keep you sane. Just keep working on that tummy time, he'll get used to it. Try a Boppy to start off with then without. As far as adding extra calories- you can try Boost Kid Essentials, Duocal, adding olive oil, butter, cream...to his diet. best of luck to you and sending over a BIG HUG.

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