I need to be stopped (vent)

grbnik · July 2012

So, DD's eating issues have consumed me. We just had our first EI appt today, and it was basically a full intake done by a social worker. She said since it is summer, most of the therapists are on break, and they are only obligated to serve those 0-3, so getting appts are difficult. So, if we qualify, we will see an OT maybe in a week or two. We also are trying to set up appts now that we have seen a feeding therapist at our Children's Hospital as well. I find myself doing tons of research, diagnosing her with everything under the sun, and I actually put in a call to a psychologist in CO to see if she can help us. I received her name because she wrote some articles that the feeding therapist copied off for us. I don't know what I am expecting if she calls back. She can't give any clinical advice. I am just looking for a reason/diagnosis/whatever that would get me started as to how to resolve these eating issues. And, the therapists have said that eating issues take a long time to see progress on. Patience= not my strong suit. I think I need to turn off Dr. Google, but I am having such trouble fumbling out there with no idea where to turn next. We do go back to the Ped GI next week, so hopefully he will shed some light, but since she is gaining weight (I think) I am sure I will get the whole 'there is nothing to do, she is gaining and wetting her diapers'. He is supposed to be really good, but maybe I am needing to get a second opinion. I find myself almost wishing that she would not gain weight, so someone takes me seriously. Okay, maybe not that, but it is so hard to try to convince someone that something is wrong, when she shows no outward physical signs of anything. Just eating 12ish oz of BM a day, and refuses all solids. For the past 6 months. And, she is exerting lots of energy by starting to crawl/pull herself up/play/etc. Not sure where she is getting the energy from! Doctors say that all kids have different metabolisms, but this seems ridiculous. And, I am reading about more kids with sensory issues to food being diagnosed for Asperger's, so I am not sure when I should start looking for that.

So overwhelming. Sorry. Vent over. Thanks for listening.

grbnik · July 2012

-auntie-:
It would be almost impossible to dx Aspergers at this age. Most of the kids I know with Aspergers were good eaters prior to about 15-24 months of age. Often they were babies who didn't need as much sleep as other kids and would have words at 8 months. My own DS was using 2 word phrases by 6 months.

Oh- I am glad that you said this- I thought the sensory thing happened at the time of introducing purees and such, so that will be good to keep my mind on. And, holy crap! Two word phrases by 6 months! Wow- did you know that this was a sign at the time, or did you just think, wow, how is my kid doing this?

I always thought I was so laid back and calm prior to having kids, and now I am finding that I am more of a control freak than I ever thought possible. And, I am finding how little I can control in all of this (I guess, life in general). Very humbling.

Thanks for the response. I hate being a debbie downer, but I just can't seem to let it leave my mind, even at work. Probably not good for my bosses to find out!

Jcrab · July 2012

Hugs! It's great that she is still gaining weight but I definitely understand why you are still feeling so overwhelmed. It sounds like you will be starting to get more help soon, try to believe that things will gradually start improving. My DS was in feeding therapy for an entire year, he is still very picky but has made tons of progress. The help we got at the chikdren's hospital made so much of a difference, I really fear where we would be today without that therapy. Try to do some sort of stress relief for yourself if possible, having your child's feeding issues to deal with can really take it's toll. Hugs!

grbnik · July 2012

Jcrab:
Hugs! It's great that she is still gaining weight but I definitely understand why you are still feeling so overwhelmed. It sounds like you will be starting to get more help soon, try to believe that things will gradually start improving. My DS was in feeding therapy for an entire year, he is still very picky but has made tons of progress. The help we got at the chikdren's hospital made so much of a difference, I really fear where we would be today without that therapy. Try to do some sort of stress relief for yourself if possible, having your child's feeding issues to deal with can really take it's toll. Hugs!

Thanks so much for this, Jcrab! I have been debating doing a massage at the local beauty school, maybe I should just go for it! Thanks again!

JoJoGee · July 2012

You sound like me when Lily was 8 months old (But, Lily wouldn't eat anything at all - she can, she just won't). I don't know what to tell you. We've been in feeding therapy since January and she is still not eating. But, her oral area is less sensitive and her gag reflex is less pronounced, so we must be making some progress. She will even take a small bite of some food now and then. I find she does better if I don't stress about it so much - I swear she can sense my anxiety. I've also found that she doesn't want to interact with me if I'm anxious. But, I know it's hard to turn that switch off.

Last week, I asked our feeding therapist, "With children like Lily, is it like a lightbulb turns on or is it a slow process of 2 steps forward and 1 step back." She said it's a slow process of 2 steps forward and 1 step back. Sad

Anyway, for now, in addition to our therapists recommendations, we include our daughter during meal time. We place her in her high chair and put food on her tray. And, because she is g-tube fed, we feed her in her highchair (hopefully she'll get the connection that when she is in her high chair, her belly gets full). I am also looking for a book about eating that we can read to her. Our therapist says to always end her therapy exercises on a good note - so I'm tryint to carry that over. If I can show her that eating is actually fun and enjoyable - not scary, hurtful (reflux) and stressful - and if I can show her that many, many, many people around the world eat. Then, maybe one day, she'll be brave enough to give it a go.

Hang in there, it's a rough row to hoe.

MomsMuddle · July 2012

Back away from Dr. Google! Put the keyboard down and watch something humorous on you tube! I can google a look up on a headache and somehow end up convinced I have a rare Jungle fever that is going to cause my vagina to fall off.

My Aspie was small. She didn't sleep for long periods of time. She ate horribly, 2 ounces here 2 ounces there. I took her in, she was less than 0 percentile for weight and 5 - 10 % percent length. They ran all kinds of tests, checking her bili rubins and iron and blood sugars. But each time we went in, there was growth. She did plateau for about 5 months and they started getting worried but then she started growing again. At age 2 shortly after we introduced whole milk we learned she was lactose intolerant, by age 5 she had outgrown it.

My Aspie does not eat a lot. She hasn't since birth, but she is healthy and growing. She is a picky eater and sometimes forgets to eat. Or she just eats slowly, a small amount and then stops.

There was one appointment when she was only 3 or 4 and I was once again momming out about her eating and her doctor looked at me and said, "it is ok, she is growing, she can eat only when she is hungry and to her own schedule, she is not going to starve to death."

And he was right she is doing very well. She is very petite and sometimes I do have to make her meals that are different from ours, but she finally eats a more healthy and balanced meal plan now... As long as I keep any form of potatoes away from her and remember to only serve broccoli with cheese.. Oh and nothing too "smooshie"

I hope you find your answers soon but be patient it may take a little time for all the pieces to come together!

Good luck!

grbnik · July 2012

MomsMuddle:
Back away from Dr. Google! Put the keyboard down and watch something humorous on you tube! I can google a look up on a headache and somehow end up convinced I have a rare Jungle fever that is going to cause my vagina to fall off.

My Aspie was small. She didn't sleep for long periods of time. She ate horribly, 2 ounces here 2 ounces there. I took her in, she was less than 0 percentile for weight and 5 - 10 % percent length. They ran all kinds of tests, checking her bili rubins and iron and blood sugars. But each time we went in, there was growth. She did plateau for about 5 months and they started getting worried but then she started growing again. At age 2 shortly after we introduced whole milk we learned she was lactose intolerant, by age 5 she had outgrown it.

My Aspie does not eat a lot. She hasn't since birth, but she is healthy and growing. She is a picky eater and sometimes forgets to eat. Or she just eats slowly, a small amount and then stops.

There was one appointment when she was only 3 or 4 and I was once again momming out about her eating and her doctor looked at me and said, "it is ok, she is growing, she can eat only when she is hungry and to her own schedule, she is not going to starve to death."
And he was right she is doing very well. She is very petite and sometimes I do have to make her meals that are different from ours, but she finally eats a more healthy and balanced meal plan now... As long as I keep any form of potatoes away from her and remember to only serve broccoli with cheese.. Oh and nothing too "smooshie"
I hope you find your answers soon but be patient it may take a little time for all the pieces to come together!
Good luck!

Oh my god- I am sitting at my desk and just peed a little, I laughed so hard. Thanks for that- very much needed!

Thank you all for posting. You can totally overwhelm yourself with this. I am just so happy to hear from others that their kids didn't die from this- I think that was my biggest fear- was that she would have a problem with electrolytes and have a seizure, or dehydrate herself and I wouldn't know when the point would be to hospitalize her, all sorts of nonsensical things.

Thanks again to everyone who answered me. Your posts have helped me tremendously. I am so grateful that you are out there, to 'talk' to. It means a lot. Thanks

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