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    Old 08-06-2004, 12:27 PM   #1
    r_helpmom
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    My toddler's story so far

    Hi,

    SUMMARY of my 20 month daugher's status
    MAJOR ISSUES are 1. Sleep Problem 2. Verbal and communication ability 3. Attention deficiency.
    CURRENT Treatment: GFCF diet and DAN supplements. EI/ABA to start soon

    This is my first post. It may be very detailed but I thought it may be useful to you and me if you knew as much as I do. I have a 20 month old daughter who was diagnosed at 18 months with PDD and Suspected Autism. we live in NJ and both, me and my husband work and she attends a home-based daycare 5 days a week. These are her symptoms and her treatments so far and THANKS in advance for any suggestions, advise and information:

    SYMPTOMS/ISSUES:
    1.She has minimal eye contact - except sometimes if you sang her favorite songs or rhymes, she may look at you.
    2.She has had the most terrible sleep cycles and we've never had a complete night sleep since she was born. It's worsened lately. She wakes up crying at about 1.30 or 2am. The moment she is picked up and put on the sholder she stops crying and settles down. If we put her down, she wakes immediately and cries. She wants to be walked. If we sit, she cries. If we stop walking and just stand she cries. lately we have been trying to rock in the rocking chair while she is on our sholder. Two nights ago, when my husband could not walk any more he just lay down on the couch with her and she sat up crying but then went to sleep sitting up! She was asleep for about 20 minutes when my husband tried to make her lie down when she again woke up crying. This tends us to believe that something is bothering her when she is lying down in the night but immediately becomes okay when she is upright. Is it reflux of some sort?
    3.She will toe-walk a lot
    4. No communication with us parents. I.e. she would not ask us for anything. If she cannot reach for anything she'll just walk away. If someone grabbed something from her, she would not get upset, just let go and look for other things to do.
    5. When she is hungry, thirsty or sleepy, she would just start whimpering.
    6. She would not point at things.
    7.There has been no progress in her language/vocabulary since she was 12 months.She still mumbles the same words she knew when she was 12 months- though she still babbles a lot.
    8. She does not say mamma or dadda or any words that refer to us.
    9. She does not respond when we call her name but immediately looks up if we sing her favorite song.
    10. She has a very very short attention span. It's near impossible to sit her down and read a book to her or point her attention to pictures, or make her follow an activity if she is not in control.
    11.She mouths almost everything! She is prone to picking even the most minutest of stuff off the carpet and putting it in her mouth. She does respond to "NO MOUTH!" but after 60 seconds, she's mouthing some other object.
    12. Not sure if this is a symptom but she loves romping in cushions, pillows, comforters anytime. It looks like she is stimming. She loves running fast and crashing her torso into the soft couch cushions.
    13.Again, not sure if this is bad or not...She'll watch other people playing and doing funny actions but will not want to join in. E.g. She'll play 'Ring around the Rosy" but will prefer watching everybody else fall down.
    14. She won't play wth other kids and prefers playing alone. Infact when kids try to interact she runs away. They think she's playing tag and hound her more till she throws a major tantrum or an alert adult places a restriction order on her stalker.

    TREATMENTS and RESPONSES (if any)
    1. She was evaluated by two Neurologists. The first was referred by our primary because she was supposedly good. But she turned out so pessimestic and didn't even spend time directly with my daughter. She gave a very grim diagnosis that we cannot do anything but try EI and LIVE WITH IT! This doc was absolutely cold and insensitive during the short evaluation. Infact most of her questions were stereotypic and the information about Autism she gave us was blurred overly-photocopied material. The second doc was very patient and extremely detailed in his evaluation. Spent about an hour. He suggested that she is very mild and didn't prescribe any medication, saying that EI may be more than enough to get her into the mainstream. None of these neurologists were enthusiastic about diet!
    2.She has been on a GFCF diet since 18 Months. Most immediate dramatic change we found that her chronic ear infections disappeared when we stopped milk and switched to Rice-milk.
    3.We put her on DMG at the same time we started her diet. So any benefits may have been masked. Also if she has a yeast problem - which we are testing for, we hear that dmg may not be effective.
    4. Due to her chronic ear infections, she had a lot of fluid in her ears and that was suspected to impact her hearing. "If she can't hear well , she can't speak well" and we read that temperory hearing loss impacts learning abilities. Also that it mimics the symptoms of Autism. Tubes were surgically put in her ears by an ENT who said that she should be free of any further fluid buildup in her ears. If fluid in her ears(this is even if she has no more infections, the fluid can stay for many months) was complicating her Autistic condition, atleast we were happy that it was out of the way.
    5. She is being treated by a DAN doc who prescribed
    - ImmunoKids capsules strting 1/2 a day going up to 2 a day in three weeks. May be a coincidence but since we increased the dosage to 2 caps, she has been waking at 2am and would be awake till 4am.
    - Cod liver oil - clear not emulsified
    - Kirkman - Zinc, Calcium YeastAid
    - Chamomile Tea to help sleep - My daughter does not drink it even disguised
    - At bed time Bach Rescue Remedy cream to be rubbed on wrist and temple and Bach Rescue Remedy tinture- 4 drops by mouth. We just started it and there's no positive effect on her sleep.
    Based on the Dan doc's advise, we sent her stool and urine samples for tests last week. Awaiting results to see if she has a major yeast problem..which we suspect and/or allergies.
    6. She has been just been evaluated by the state and is starting EI - Verbal/ABA in a couple of weeks. We are really looking forward to start a structured program rather than the ad-hoc attempts we try to teach her by ourselves without training.
    7. We play the Bumblebee video Vol 1 (30 min) every day , sometimes twice a day. She has picked up words like "flower", "baby", "teddy" after 3 weeks of viewing.
    8. We are constantly pointing to objects and labeling everything. After about 3 weeks of doing this, she now points to the cuckoo clock when we repeat for the 4th or 5th time "where is cuckoo?" and she is not overly distracted.


    POSITIVE TRAITS that she always seemed to have and not really due to treatment: She is a busy body. Always has to keep herself busy doing something or the other. She gets bored if there is nothing new to explore or play with.
    1.She eats almost any food and has very few dislikes
    2.Her physical abilities are excellent. She runs and can climb almost anything and enjoys gingerly exploring the big kid's jungle-gym in the park and sliding the down the spiral slide. Only danger she seems to be is in being run over by the big kids. She is very concious about heights and getting too close to any open edge.
    3. She has picked up peg puzzles very quickly and can match any new peg puzzle with the underlying picture. Loves playing with mega-blocks and stackable cups.
    4. Likes to doodle with crayons and pens
    5. When in mood says numbers in sequience from 4-10 (because we start with 1,2,3). This she started saying when she began daycare at 12 months but we noticed she is not saying it as clearly as she used to.
    6. About imitating our actions: She proactively says "hello" when she picks a phone handset or remote that resembles a cell phone. SHe pretends to water the plants with the watering-can.
    7. She does look at strangers in the eye the first time and smiles if they interact. But then getting her to make eye contact again is diffficult.
    8 She'll let us brush her teeth and change her clothes without a fuss
    9. She tends to be okay eating with a spoon but is still very messy, flinging spoonfuls of food around (but we think that's age appropriate). In her defense, we haven't given her too many opprtunities for her to eat with a spoon by herself.

    Going by the above status report, I would be very grateful for all your comments, suggestions and information which would help accelarate her progress. Also if you have any questions, I would be happy to answer them.

    Thanks for your patience in reading this post.

    Real

     
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    Old 08-06-2004, 08:58 PM   #2
    BetsyAnn
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    Re: My toddler's story so far

    Since you are having some success with the Bumblebee video I would like to recommend the Signing Time Video's. My son loved them! After seven months of speech therapy (45 min twice a month) he had five signs and two words he could speak. After watching the videos he gained 30 signs in under two weeks. He now can also vocalize most of the vocabulary introduce on the videos. My other kids and husband liked watching them also and it really helped all of us with our ability to sign with him.

    Good luck with everything. I know that you are going to see alot of improvement after you start the EI and ABA. It is great that you have already implemented dietary changes.

    Lack of sleep was our biggest problem until my son was CF. Going completely casein free solved most of the problem. I was wondering if it is possible there is a hidden source of casein in your daughters diet. I know if my son eats even a small amount of something with only a trace of milk in it (like a flavored potatoe chip) he does not sleep well? Also, is your daughter soy free? We discovered that soy had the same effect on sleep that milk did but not as dramatic. I do hope you are able to resolve the sleep difficulties. Lack of sleep makes everything else so much harder.

     
    Old 10-20-2004, 12:44 PM   #3
    Star2002
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    Message for Matt's Mom

    Hi,

    My son seeks for visual stimulation as well. Just as you described about your son, mine also looks at blinds and stairs railing from the corner of his eye. While outside the house, he deliberately runs and sees sideways to see the visual effect that he achieves from running. His OT has not addressed that issue so far. She thinks that he should be distracted by showing him more colorful books or objects to fulfill his visual needs.

    I want to know if any of his therapists has looked into this issue about your son and if they did how?

    Thanks,
    Star2002

     
    Old 10-20-2004, 07:44 PM   #4
    Chases Mom
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    Re: My toddler's story so far

    Sounds like you've got your hands full. A great thing is that she is so young and you're doing a lot of things for her early on. There seems to be alot of trial and error when it comes to drs., meds, tratments, and therapies.

    I would also suggest occupational therapy. The eye contact with my son has just improved 10 fold since he started 2 mos. ago. And he actually tries to get the therapist to engage with HIM now! (He just turned 3). The thing about the cushions and sofa...some kids love deep pressure. Being surrounded by the cushions probably feels good to her. Where light touch may really bother her. My son prefers someone being rough with play, jumping on the trampoline, swinging on the swing and diving into the cuchions as well. Thats all deep pressure. And thats all explained at OT.

    Where do you get the Bumblebee videos? My son greets people and says hi, but thats pretty much it for words. Oh yeah-say ready ,set and he'll say GO for you. We're trying to get him tosay "more" when he wants something vs. dragging a chair across the room to get it for himself..

    Good Luck, you're doing great!!
    Try to get some sleep...

     
    Old 10-21-2004, 03:59 AM   #5
    KathleenW
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    Re: My toddler's story so far

    Hi I have never used the Bumble Bee Video, but I have seen them at several of the library's I have gone to in the video section. Also at our library if they don't have something they will order it. I thought that would be great for people to be able to see if their child likes it before spending the money on the tapes.

     
    Old 10-24-2004, 12:26 PM   #6
    kitswan
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    Re: My toddler's story so far

    One of the things you could try for the eye contact is to point toward your eyes (by tapping your nose just under the bridge) and say "look at my eyes, honey, look at my eyes" OR "where do you look when you're talking to Mommy" when she's talking to you, but not looking. I do this all the time with my son, and it really gets him to look.

    I do the same thing when he is "screeching" instead of asking -- "use your nice words, honey, use your nice words." OR "How do you ask?" He will inevitably say "I want milk please, Mommy" .

    I have learned these techniques from his two therapists from our aba/floortime program (2 hours a day, 5 days a week.) I adore them! My son was just re-evaluated (turning 3 next week, time for preschool) and he is behaving at a 36 month level on just about everything.

    Last edited by kitswan; 10-24-2004 at 12:27 PM.

     
    Old 11-01-2004, 09:48 AM   #7
    River'sMom
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    Could my 11-month-old be autistic?

    Hi everyone. Thank you for taking the time to read this. I know this post is going to be a little long, so please, if you have a moment, tell me what you think. I have read through all of the posts and I see some similarities with my son, as well as some differences. He just turned 11 months old, and here is our story:

    CONCERNS:
    * poor eye contact. he does make eye contact at times, and looks at me when he wants a response to something but a lot of the time he seems too 'into' what he's doing to take the time to look me in the eyes. He is a very physical and active child, and is usually on the move. Note-he will look at me every few minutes in the eyes, or after he sees something he likes, but he wont stare into my eyes for long periods. Not sure what this means.

    *This is perhaps my main concern because I can't think of any other reason why an 11 month old would ignore his name. River does not respond to his name a lot of the time. When he was younger he would respond to it more often but now it seems to be just like any word to him and he rarely turns when I call it out. Yet, if he hears the word "River" (his name) on a video he will snap around. I am very concerned about this!

    * River likes to be carried, but does not like to be cuddled. He likes to be rocked, and his back to be rubbed but he doesn't like long periods of me holding him still and close. He likes to be picked up, and played with, but not confined. If he is well-rested, he'd rather go play than snuggle.

    * He does say "dada" but doesn't understand what it means. He says no other real words. He babbles and makes a lot of sounds, but sometimes he will make one long-pitched monotone sound. He doesn't do it often, but occasionally he will. Is this normal?

    * River does not seem to recognize many objects. For example, if I ask him to point to a character or animal in a book, he will not. If I set a few objects in front of him and ask him "where is your puppet" he won't know which object is his puppet, and sometimes will not go to any of the objects. I think he knows what "ball" means, although sometimes he ignores me and does other things. I also think he might know what "book" is, and he does know what "kiss means." I feel like he should know a lot more objects by 11 months!

    * He doesn't nap much. He used to sleep through the night, but this has changed the past 2 months. This could have to do with his recent teething.

    * River does not obey "no" and does not shake his head "no."

    * River only mimics a few things such as rolling ones lips, waving, and occasionally "dada" and "ahhhh." Sometimes he will momic other sounds made by ones mouth such as smacking lips, but not words or word-like sounds.

    * River will flap his arms sometimes. This is pretty rare but he does it when he gets excited. He is only 11 months, so this might be normal for a baby this age, but I worry that it's not since it is a sign of autism.

    ***All of these things lead me to suspect some sort of autism. However, here are the things that River does that don't seem to coincide with autism:

    * will sit and flip through pages of a book. I think some autistic children do this fine, but I just thought I'd throw it in there.

    * Shows lots of toys to people, as if asking them to join him in play. He insists on handing books to be read to other people.

    * points to some objects as if to ask what they are.

    * loves to socialize with other children and adults. He will smile at strangers, and wave his arms wildly at other babies and children.

    * River smiles socially, and in response to everyone else who smiles at him.

    * Immitates some actions such as banging on things, rolling lips, and waving.

    *Is not at all phased by change. Does not thrive on a consistent schedule.

    *Laughs very interactively at things people do.

    *Crawls quickly to the door and pulls up on people who enter, especially mama and daddy.

    *reponds to some commands such as "give it a kiss" and "hold it."

    *Reaches out for people to hold him, or put him down.

    * Plays back and forth games such as stacking toys, or putting his pacifier in his own mouth, then tries to put it in mamas, then his own again. He will also roll a ball back and forth for a short period.

    Other things to note are that River is in no way a shy child, nor is he antisocial. Quite the opposite. He is also very high energy. Also, a possibly very important note is that he was born with the umbilical cord around his neck. It was cut promptly and it took 15 or 20 seconds for him to breathe and regain color. I have read that there is a link between oxygen deprivation at birth and autism.

    If anyone can help me at all with this issue, I would greatly appreciate it. Please feel free to [ removed ] post responses on this forum. Thank you very much.

    Last edited by moderator2; 11-01-2004 at 02:06 PM. Reason: please carefully review the posting rules - no emails

     
    Old 11-02-2004, 08:25 AM   #8
    r_helpmom
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    Re: My toddler's story so far

    Hi River's mom,

    First, you definitely want to get a diagnosis. Get your pediatrician to refer you to a neurologist. DO NOT TAKE "DON'T WORRY" as an answer from the pediatrician. Just insist on a referal (if you need one, per your insurance). Not sure which state you are in but get in touch with Early Intervention (EI) services in your county or state. They will do their own evaluation. In NJ you don't need a diagnosis for the EI. Your tax dollars are fundng the EI program in your state so you don't have to worry about expenses. Even if River is not on the spectrum but if he qualifies for EI, consider it to be a great tutoring program for toddlers to become super intelligent

    Rather than brood and worry.. ACT!!. River is at a great age where he will benefit most from the behavioural treatment for autism.

    One biggie piece of advise is that ANY treatment you are evaluating for him should be looked at from an age appropriateness angle. It's very difficult to differentiate between what is normal for his age and where you are pushing him over and above his normal peers. Especially if you are starting this young, everybody will say that this is a great age but very few people will give you a confident answer about what program is age appropriate and what is not.

    My comments to each of your points are below.

    CONCERNS:
    * poor eye contact.
    >>Your description shows that eye conatct is way better than most kids on the spectrum. Even though it is not great, River's eye contact is appropriate and definately better than my daughter who is diagnosed as high-functioning.

    * River does not respond to his name a lot of the time.
    >>Yes, this is a legitimate concern.. I think that unless the name is used as part of someting attractive, they do not respond. I think It's almost like an ambient noise to my daughter. I sometimes wonder that because it may be used before EVERY sentence when talking to them, in his case he may think that the english language always begins with the word "River".

    * River likes to be carried, but does not like to be cuddled.
    >> That's another sign of most kids on the specturm. my daughter pulls away too if we try to cuddle her. Except when she comes of her own accord when we call her for a "big hug".

    * He babbles and makes a lot of sounds.....,
    >>My daughter babbles a lot and now it is so refined that it resembles a foreign language. Not sure when you ask about "normal" do you mean as in 'normal' for autistic kids or 'normal' for typical non-autistic kids.

    * River does not seem to recognize many objects. I feel like he should know a lot more objects by 11 months!
    >> Expecting a 11 month old to know lot more objects may be unrealistic even for normal kids. Even if they do.. expecting them to answer everytime to your question by pointing or gestures may be far out.

    * He doesn't nap much.
    >> Could be teething but could also be his routine. My daughter had the most terrible sleep cycle till we began one only nap between noon and 3pm and she slept thru the night very well. Could also be a gastro problem. You could try biomedical intervention to address that

    * River does not obey "no" and does not shake his head "no."
    >> I think that's okay at this age

    * River only mimics a few things such as rolling ones lips, waving, and occasionally "dada" and "ahhhh." Sometimes he will momic other sounds made by ones mouth such as smacking lips, but not words or word-like sounds.
    >> It means that her verbal imitation skills are fine ad it could develop into mouthing the words.

    * River will flap his arms sometimes.
    >> The experts will see taht as a sign of ASD

    * will sit and flip through pages of a book.
    >> My daughter is obsessed with books.

    * Shows lots of toys to people, as if asking them to join him in play. He insists on handing books to be read to other people.
    >> This is GREAT. One feature that autistic kids lack is referencing. Just as in eye contact to see your reaction. This kind of sharing is a very Poisitive sign and shoudl be encouraged with praises

    * points to some objects as if to ask what they are.
    >> Pointing is SUPER too.. Encourage more of that.

    * loves to socialize with other children and adults. He will smile at strangers, and wave his arms wildly at other babies and children.
    >> Wonderful....Keep that up.. Does he participate>> My daughter too gets excited when kids are playing but she love to watch and not participate nor imitate.

    *Is not at all phased by change. Does not thrive on a consistent schedule.
    >> Change is constant with my daughter too....

    Imitation and social interaction should be encouraged. Reinforce every positive feature with a social praise.. Yay!!! Good job!!! etc...

    I hope that River does not get the diagnosis but if he ever qualifies for EI..take advantage of it anyway.. your taxes are already paying for it. Good luck and God bless

    Last edited by r_helpmom; 11-02-2004 at 08:26 AM.

     
    Old 11-02-2004, 04:53 PM   #9
    River'sMom
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    Re: My toddler's story so far

    Hi R HelpMom,

    I really appreciate you taking your time and energy to respond to everything I wrote. It is very healpful for me to have input from people who have known and lived the experience of having an autistic child. I am feeling more optimistic! Here is the update:

    River has been consistently responding to certain commands, including "where is your ball" "give it a kiss" and occasionally "book." In addition, he attempted to feed his babydoll a bottle today, as well as share a book and his ball with her.

    He has been making pretty good eye contact since I started paying closer attention. He looks up at me, in the eyes, periodically throughout his play time to see my reaction to what he's doing.

    He still does not respond consistently to his name. However, he responded to his grandparents using it, and responded many times on the first try this evening.

    He loves to interact with people...not just watch them. He loves to share toys, play games, etc.

    Good signs? I hope so!

    Thanks again,
    Sara (River's Mom)

     
    Old 11-03-2004, 05:47 AM   #10
    matt'smom
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    Re: Message for Matt's Mom

    Hi Starr,,My little guy was always doing this, but it seems that as time went on, he did it less and less frequently. I'm not sure exactly why he did that, but I'm still confused as to why our kids do these things to begin with. Instead, he jumps and hits his tummy (kind of flapping). I'm guessing that this will change over as he ages, too.

    It's kind of hard to figure out. [ removed ]

    Jen


    Quote:
    My son seeks for visual stimulation as well. Just as you described about your son, mine also looks at blinds and stairs railing from the corner of his eye. While outside the house, he deliberately runs and sees sideways to see the visual effect that he achieves from running. His OT has not addressed that issue so far. She thinks that he should be distracted by showing him more colorful books or objects to fulfill his visual needs.

    I want to know if any of his therapists has looked into this issue about your son and if they did how?

    Thanks,
    Star2002

    Last edited by moderator2; 11-03-2004 at 05:54 AM. Reason: please carefully review the posting rules - no emails

     
    Old 11-03-2004, 07:45 AM   #11
    River'sMom
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    Re: My toddler's story so far

    I also wanted to ask a question about arm flapping--

    What does this look like? The kind of arm flapping River does is when he's really excited he bounces up and down on his bottom and kind of waves his arms, bent at the elbow.

    Is this the same arm flapping of an autistic child?

    Thanks,

    Sara

     
    Old 01-15-2005, 06:21 AM   #12
    RowansMom
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    rivers mom . . .

    OK, First I am going to say that you are RIGHT in being worried. My now, almost 3 year old son was ALMOST identical to what you have explained regarding your son. At about the same age, as well. I KNEW something was wrong, I think I knew when he was born that something was just not, um, I just KNEW. It's so hard to explain. UNFORTUNATELY I floated in denial for almost 2 years. I guess that I wasn't ready for someone to tell me that something was wrong, who knows.
    My son has ALWAYS been very social. He LOVES people, and yes, this is a good thing. This means that he will be more likely to learn from other people. It's good. My son will be starting a preschool ina month, and I can't wait. (has been at home with me since birth). He was also very happy, and smiley. He would play games with people. LOVES people. It is the other stuff that is so major. The not knowing that Dadda necessarily means that man over there. My son STILL requires a great deal of gesturing to get him to follow commands.
    I don't have a TON of time right now, but just want you to know that your child sounds sooo much like mine did at the time. . .. you are right in being worried. BE STRONG, and push. Listen to your belly, and dont be afraid.
    I would seriously look into any dairy issues. . .just to check, as this is something that can be easily changed.
    GOOD LUCK
    keep me posted on how you are doing, ok?
    AMY

    Last edited by RowansMom; 01-15-2005 at 06:27 AM.

     
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