I don't know where to begin, I know I don't post much, but there's no one in the world that can sympathize with me except those who have been there. My trio is 2.5yrs old now and were born at 25w0d. They have done extremely well with no long term issues except my smallest Martina. She was born at 1.5lbs and excelled well over her sibs in the nicu. She was the first off the vent, the one with the least problems etc, but had reflux so bad for the first year of life, and we had the most horrible pediatricians until 14 months old, we switched 4 different times and no one ever diagnosed her with a problem. She was always quiet, slept alot, very behind the others developmentally until finally at 14months was dx with severe reflux and put on meds. By this time she was obviously sitting up and pulling up finally and the reflux started to subside but damage was done developmentally I believe. They've been having EI since they came home from the NICU, and she has now been diagnosed with Sensory Integration Disorder. We tried brushing, she hated it. We do listening therapy with the headphones and she enjoys that and for awhile it seemed to do her some good, but just stopped seeing any diff.
Anyway, here is my problem. She is extremely out of control emotionally. She will completely lose it one second and be a sweet angel the next. But she lacks any ability whatsoever to calm herself down. She gets into these major fits and won't stop crying for HOURS!!! Literally HOURS at a time. She doesn't sleep well, she is awake every couple hours and just whines and cries in her crib, even if we come in to calm her, she just doesn't stop. (this is after over a year of no sleep problems at all with her) It just seems that in the last 6 months she is going downhill so fast. The other issue is her eating!! This is the biggest problem. She has an oral aversion and used to gag all the time on anything with a texture that wasn't baby food. She does not like to chew. She just moves it around in her mouth til it breaks down. She will flat refuse anything that isn't red sauce flavor (spaghetti, spaghettios, lasagna, etc) or oatmeal, yogurt, dry cereal and crackers. That is all this kid will eat. We have tried countless times to get her to eat other things and she just wont. The worst part is she holds it in her mouth forever and collects spit with it and then when you pull it out, she screams her head off and ruins the whole meal for her, she's ballistic at that point and won't eat anything else. EVERY SINGLE meal is a nightmare! I DREAD meal times more then anything else in the world, which makes me an unhappy person all day because of it.

I'm so frustrated and cry almost every day over her behavior because I'm helpless and can't do anything for her. I've become depressed over this and find myself often resenting her and snapping at her when she's in a fit. I have no nanny, no help except when dh gets home at 5:00 at night and then its time to cook dinner, feed the kids and then its off to bed, but dealing with her fits to go to sleep, there is no break. I love her so much and I'm just so very sad that I can't help her. Her behavior in itself is such a challenge and then to have 2 more toddlers (as you all know) is so hard to deal with. I know there are some that have more then one special needs child in their trio, and I just don't know how you do it. Some days I'm just ready to give up completely and have to soul search for that will to go on with this.

I'm asking for anyone that reads this, if you have any input or advice whatsoever, no matter how small or insignificant, you think it might be, to please post it. I need all the help I can get. Thank you so much in advance.

~Deejay~

Proud mommy to:
Martina
Tyler
Paige
born 7/25/01 at 25w0d

http://www.aguilartriplets.com

Deejay,

My heart goes out to you. I feel so bad for you. My son sometimes becomes very hard to feed but not to the extreme of your daughter. What works for me is this.....My son does not want to be held when you feed him. We have to feed him in a bouncy seat and that usually does the trick. Today, my son was a little bit harder to feed. He didn't even want to sit in his bouncy seat. He kept arching his back as if he was trying to get out of the chair. I finally put on a Baby Einstein movie and he was quickly in a trance. I gave him his bottle while he watched his video. It's just an example or a suggestion, which ever applies. Is there anything that your daughter enjoys? Have you tried feeding her during her joyful activities? I'm sure you've probably tried everything. Just a suggestion.

Hope this gets better soon. Hang in there! There not babies very long. This will soon pass, I'm sure.


Cristina
Proud mommy to Daniela, Bobby and Vanessa
Born June 28, 2003 - The best day of my life!!!

Cristina
Proud mommy to Daniela, Bobby and Vanessa
Born June 28, 2003 - The best day of my life!!!

Deejay,
Is your daughter still taking meds for her reflux? Do you think she is not eating because of the pain she has from the reflux issues. I have a son who refuses to eat table/babyfood and his GI says it is due to his reflux. He is still currently taking Prevacid and is enrolled in a feeding clinic. Maybe you should have a GI doctor examine her and if there is a clinic like this she could benefit from it. Hope things get better for you, Laura

Laura
Mackenzie,Ashley, Matthew
2-19-03

When you mentioned that she disliked brushing, it got me thinking that she might prefer a firmer touch, such as hugging close. I am an adult, of course, but I myself HATE any ticklish touch, for example when my DH gives me a foot rub, it must be with a firmer touch rather than a ticklish touch. So when she is freaking out, or you see it starting, do you think maybe getting her in a "bear-hug" of sorts would soothe her? Just my thoughts...

And about her mouth, would buying her a "cool" looking electric toothbrush and letting her "brush" her own teeth help do you think? Would it help her get used to something in her mouth? Again, I am just rambling...

I have heard of a book "The Out Of Sync Child" that is supposed to have good ideas for S.I., but I haven't read it myself...

Mom of a princess, age six, and two princes, age 4

I'm not normally one to make this suggestion, but at least for the behavioral aspects... can you have her assessed for ADHD? ADHD is a known risk for preemies, especially in micro-preemies. This was one of the first things my ped talked to me about, especially since my second son was diagnosed with ADHD in middle school. He explained that in preemies its often severe, and evident at a much younger age. Its worth a shot. Maybe if you could set up a video camera to tape her in action for a few hours, and give that to the doc to watch.

I think I would put the food issues on the backburner, and feed her what she will eat without battles for now, you probably frustrating yourself by trying to tackle so many issues at one time. If you have to, put spaghetti sauce on other stuff, like scrambled eggs or green beans. Add cheese to the sauce if you think she needs the calories and the dairy. I know that the diet seems very limited to you, but it looks, except for veggies, to be fairly typical of some tots. I know that two of mine, one of the older ones and one of the triplets, probably spent at least 6 months where the only thing they would eat at any meal was macaroni and cheese and fish sticks or hot dogs. Rather than subject the family to tantrums and to keep meal times quiet, thats what we served, but we offered everything else. Eventually they moved onto other things. None of mine have oral aversions, so I'm not offering advice in that direction, just wanted to point out that her diet might not be all that bad. She's getting plenty of dairy, and grains, if you are concerned about veggies, you could always puree a can of grean beans, or carrots and slip them into the spaghetti sauce.

Good luck.

MTM - mom to Michael(84),Stephan(85), Thomas, Matthew and Kathryn - born 12/27/99 at 32w 0 days

One of mine, Ari, has SID and has very similar behavior issues b/c he also seems to lack the ability to calm himself in any way. It's really trial and error trying to find how to comfort him and it's frustrating since what works today may not work tomorrow. Have you tried deep pressure, like a bear hug? That can be calming for many SI kids. What exactly are you getting as far as EI services? Do you get the feeling that they really know what they're doing with SI? It is a really complicated thing to treat and there are a lot of therapists out there who think they understand it, come out and teach you brushing (which does exactly nothing for a lot of kids) and don't have a clue. If your uncertain, you might want to look into it and find out who the experts in your area are. Someone who really knows what they're doing should be able to help with the behavior issues.

Another thing that really helped me was getting "permission" from my ped. just to treat him just as I would any 2 year old having a tantrum and just walk away. I tell him, "I'll talk to you whan you pull yourself together. Or sometimes I'll sit with him and say, "What can I do to help you get it together?" Eventually, with or without my help, he'll come around.

As far as meals, I don't think the variety she's eating sounds half bad for a two year old. My Max lives on Pediasure, Bob the Builder fruit snacks and toast and butter (he licks off the butter and leaves the toast)and his doctor doesn't worry as long as he gets adequate calories and a multivit. So that's one thing I think you can let go of. I wouldn't worry at all about pushing different kinds of food. Maybe you could get a feeding therapist through EI to help with the pocketing/hoarding issue and help make mealtimes a little more bearable for you.

I really feel your frustration and I know how hard this can be. Please don't feel like you are doing her any harm if you just need to walk away for awhile, or even put her in her room so you can focus on the other two. Hope this helps a little!

One more thing: Ari has actually improved a lot since starting preschool. It has forced him to learn to control his behavior and the "peer pressure" has really helped. Just a thought.

Paula
Mom to Ari, Eve and Max
11/00

Deejay,

I don't have any other ideas as I haven't had those issues but I wanted you to know that I admire your efforts. It's a very special mom who gets pecial needs kids. God knows that only she can handle the day to day struggles. One of my favortie sayings to remember in times of stress is "Sometimes the Lord calms the storm, Sometimes He lets the storm rage and calms His child."

I don't know that this will be of any help, but I'll say a prayer for your family.

Kim
Nate, Nick & Noel(36w4d)and Nia.

<a href="http://www.tickercentral.com"><img border="0" src=""></a>


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Deejay first off with the mealtime. Stop fighting her. If she does have Sensory Intergration you won't win. See if she will take a vitamin so she gets all she needs and let her eat what she will. I would however, put other things out ( might have to do 1000 x ) then she might just try it one day. I have three picky picky eaters. I just finally gave up. It's much nice. One boy actually eats popcorn now... I have no idea why he would never try it befor.. but now he likes it. I have one that gags often too, he prefers to drink most of his meals if he could. They are now taking those gummybear vitamins you can get at costco so I don't feel so bad about the foods. My boys are great on the charts so the ped said not to worry.

If this child does have SID she could also have other things or not. Has she been evaluated by neurologist for other things as well. What do her Ot, PT or ST say. What types of services does she get through EI. They also can provide a behavior modification class and in-home help. I got it from them. It does help. Some of it could be just her but I would have her evaluated to make sure your not missing anything else. With bad eating, SID and sleeping habits could be symptoms of other things. How does she play? Does the ST work on her oral things. Maybe she can see an eating specialist. Hang in there! Email me if you want.

Danielle
mom to Easton, Blake and Hunter
1-24-99

Danielle
Easton, Blake & Hunter
1-24-99

I should probably tell you guys with the eating issue that she is not even on the growth chart for her size. She's extremely tiny and only weighs 21lbs at 2.5yrs. However, her sister is only 22lbs and not on the chart either and eats EVERYTHING she can put in her mouth. I think they are just petite, my dh and I are both short, but with as little as she will eat, I can't help but worry. I started giving her pediasure every day now recently and she loves that so as long as I can get one or 2 in her a day and her mulitvit, I'm not going to worry much about the eating and just let her eat what she likes. Sometimes she'll have oatmeal for dinner, just to make sure she's full. The major problem with it is sometimes she won't eat anything at all, but screams and cries for food, so I know she's hungry. She won't eat with a utensil, she will only self feed if its cereal or crackers and she gets immediately upset if she sees something she doesn't like coming her way and then she's pissed off the whole meal and its a nightmare.

For EI, they get a OT, PT and ST twice a month. They seem to know their stuff and are planning to work a one on one with her seperately from now on. I'm checking into a SI specialist tomorrow that the PT recommended, hopefully she'll take our insurance. Just since reading your responses, I've tried the bearhug a couple times and she seems to like that so I'll keep trying it when she's in a fit. Please keep the suggestions coming, I really appreciate it and your all so wonderful to take time to offer them. Thanks again!

~Deejay~

Proud mommy to:
Martina
Tyler
Paige
born 7/25/01 at 25w0d

http://www.aguilartriplets.com

Have you tried teaching Baby Signs? If not I'd consider it...it will help with figuring out what they want. My kids can tell me if they want more, cookies, crackers, milk, drink. They are 18 mo and have picked up on it quickly. HTH

Click here to subscribe to a parent's group with triplets born in the summer of 2002: tripletsquads2002-summer-subscribe@yahoogroups.com
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Mom of SuperTwins
I believe in miracles - I have three that live in my home. June 2002 @ 30 wks
http://www.michaelclancy.com/ (picture of a baby holding doctor's hand while still in utero during surgery @ 21 wks)

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I BELIEVE in miracles - g/g/g- June 2002 @ 30 wks and they are 10!
Married to my best friend
Financial Peace is possible www.daveramsey.com
Support for Infertility www.pregnantwithhope.com

I feel for you. My advice is related to the sleeping. Does she keep the other two awake, too? If so, what about keeping the other two separate from her at night just until she gets past the waking up every couple of hours? And as for you and your husband, you two have to have some sanity time. If you have checked everything, and there is nothing else that you can do for her, it doesn't hurt to leave her in her crib to whine and cry a little just so you can get some decent sleep. You have to have this to function for yourself and your kids. A happy mom makes for happy kid Hang in there, and remember that nothing lasts forever. My time will be here quickly and I am scared yet excited at the same time. Take care of you and your little ones

Husband to Dan and
Mom to Jamey, age 7
Nick, age 5
Jake, age 10 months
triplet girls due June 20, 2004

As the parent of two children with SID, I'd would say that it sounds like she does have a lot of difficulty with sensory processing. Getting additional advice on sensory therapy would be a good start. There are many other things you can do, aside from brushing, to help with sensory processing. I would also suggest that you consider seeing a developmental pediatrician, if you haven't already. I would venture to say that it's not a bad idea for any child with SID to be evaluated for autism spectrum disorders, this can be done by a dev. ped, a pediatric neurologist or a ped. psychiatrist. Just keep seeking information from specialists until you feel like you're making progress.

As for eating concerns, I would also see about having her OT do some "oral/feeding therapy", we did this with one of our boys and it really helped a great deal. Has your pediatrician considered putting her on meds for reflux? Just because she's no longer vomiting/spitting up, doesn't mean that she still isn't having pain and discomfort from eating. It might be worth a trial.

If you are a member of MOST, please consider joining the online special needs network, we have other families with similar issues and I'm sure they could offer advice and relate. Just keep looking, I'm sure the answers are out there for her. Feel free to email me privately.

Take care,
Kristin
Mom to Hayden, Evan, Conner-13 and Kelsey-11
www.cure4conner.org

Hi Deejay! I haven't heard from you for a long time, and have been wondering how you've been doing! I'm sorry to hear Martina's been having trouble. I really don't have any advice to give you. I just wanted to let you know I've been thinking about you. I can't believe they're already 2 1/2 years old!

I don't have a child with SID but did want to add a couple of things.

Alex has always been my small one, he was 1lb 11oz when born. Mine were born at 28wks6/7days. He is still really small now, in fact in October he weighed 20 1/2lbs. Back when they were about 2.5yrs old he got really picky about eating. If I put something on his plate he didn't like or he didn't want at that time he would start screaming and yelling I don't want to eat. We went thru a 6 month period of him sitting at the table screaming he didn't want to eat. Now we knew he was hungry because when it came snack time right before bed he would eat. So I started giving in. I always put something on their plates that I know they will eat and just offer the other foods. It might be something as little as a piece of bread and butter. Since they were 3yrs old in Sept we ask them to try a bit of everything on their plate, most of the time. Alex if you make him try something might just throw up his own supper, he has a bad gag reflex. Then I set limits on dessert or treats right after the meal.

My ped doctor wanted me to go as far as letting him eat outside the chair and whenever he wanted. For two meals we let him not eat and then Jessica started in with I'm not hungry, so for us that was not the solution. We all still sit at the table together, and if they don't want to eat then they have to sit quietly.

I also second the bear hug issue. I know Alex can get really upset and to calm him down I give him a hug. I think sometimes it is just a way to show them you still care and love them.

Hang in there,

Debbie
Mom to Jessica, Alex, & Tracie

You didn't mention if her Ped or EI folks were concerned. Do you have someone that is your sound board? I am more paranoid about our littlest and I notice if one little thing is off I focus on it till I drive myself nuts. I am hardly an experienced Mom my girls are my first but one thing I do is remove them from the room. I have a screamer it can go on forever in the evening time. I am reading a parenting book "New Parent Power" and the section about temper tanrums he said it will happen and to just expect it and that it's healthy. Since children have difficulty expressing their frustrations and knowing what questions to ask. He said "cardinal rule is don't respond to tantrums by taking over the problem". Soon the child will learn to solve their own problems instead of having a fit waiting for you to fix it. If the toy doesn't do what she wants it to, take it away until she is calm. Rosemond says "second rule of thumb is don' give in to demands b/c of tantrums". He said spanking won't help only make it worse. He said to put her in her bed or in her crib with the side down and if you must say something to tell her "you may have your tantrum in here". Once she is done crying she can come out. If she comes out and has a fit put her back in there with the same instructions. Leave the door partly closed. Remain calm. lol (now that's funny) Be consistant.

She is your baby and most likly is treated as such...I know that's what I do and now I have a spoiled little girl. These suggestions are for 18-36 mo so if she is developmentaly behind you could still implement this.

I am so sorry she is not happy (((hug to you))) that cannot be easy.

Click here to subscribe to a parent's group with triplets born in the summer of 2002: tripletsquads2002-summer-subscribe@yahoogroups.com
*†¯`·.,*† ¸.·´¯`·.¸¸.->*† .¸¸.·*†(¯`·.¸*†¸.·´¯`·.¸¸.->*†
Mom of SuperTwins
I believe in miracles - I have three that live in my home. June 2002 @ 30 wks
http://www.michaelclancy.com/ (picture of a baby holding doctor's hand while still in utero during surgery @ 21 wks)

*†¯`·.,*† ¸.·´¯`·.¸¸.->*† .¸¸.·*†(¯`·.¸*†¸.·´¯`·.¸¸.->*†
I BELIEVE in miracles - g/g/g- June 2002 @ 30 wks and they are 10!
Married to my best friend
Financial Peace is possible www.daveramsey.com
Support for Infertility www.pregnantwithhope.com