Special Needs

Need some ideas..

edited November 2013 in Special Needs
May cross post on the girls "home" boards but I have 2 issues I need some help with...

1. DD2 (who will be 3 in Feb) still has a bottle.  She typically only has 2/day, of her milk.  She will only drink her milk from a bottle, and I put her kidney pills in her milk.  That's my dilemma.  She does use the night time bottle to put herself to sleep.  Sometimes my grandma will give her juice in a bottle at her house, but she does not drink any juice here.  Ideas on the whole bottle thing with a child who does NOT do well with change.  I have done this before, so I know the routine, I did it with P for bottle and pacifier, but M just has ZERO ability to cope.  She doesn't eventually get over something.  You know, cry for 30mins that a bottle isn't coming, she will cry for the whole day until she pukes.  So..do I put it off until after she turns 3 and hope she has gained some reasoning skills in the next few months, or does someone have some ideas to try now.  H is pissy about the bottles, I'm indifferent.  

2.  DD1 still sleeps with us.  She is overly emotional and has always had separation issues.  She won't even fall asleep on her bed in our room, because we've tried that.  Bribery/chart doesn't work.  If I move her to her bed, when she wakes up she's hysterical until she finds the bed and climbs back in.  Of course H hates this but he leaves for work at 130am so it doesnt' bother him much.  I, on the other hand, am a light sleeper and she insists on laying right on top of me, and kicks alot.  So, ideally, I really want to work on this.  I know children who have had strokes tend to have a huge issue with this, but does anyone have any ideas?  The kid would give up disney world to not have to sleep in her own bed.  So her logical reasoning skills are obviously flawed with this scenario.  I've tried over the past 2 years so much, and I must just be approaching it wrong.  

ETA: dd1 does sleepwalk, and she can unlock all the doors in our house, and since H leaves at 130 he can't lock the one that is high up (like a hotel) and still walk out the door.  So i really would prefer she stay in our room, just in her own space.  I'm not sure her and dd2 would do well sharing at this point in time.

Thanks in advance everyone.  
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: Need some ideas..

  • Does DD2 drink water? What type of cup does she use for that? Is she very particular about that, too, or will she drink water out of any type of cup? My DD1 would only use one type of sippy cup for water, and I didn't wean her off of the bottle for milk until she was about 2.5. I did separate the bottle from her bedtime routine around 18 months and just offered water at bedtime. At two and a half I convinced her to try drinking milk from one of those milk boxes that comes with a straw--she never wanted to use an open cup because she was afraid of spilling it on herself. I also started "forgetting" some of her preferred cups, utensils, etc when we traveled and that helped her become more flexible around that.
  • Baby bottle:
    Have you tried the "There are babies who need your bottles. Let's donate them!" Method?

    Has the pedi given you any tips?

    Bed: Electric Blanket to warm it up and make it toasty? Maybe she doesn't like the cold sheet feeling. Flannel Sheets?
    WAY 2 Cool 4 School


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  • Bed: Do you have a cat or dog that would sleep on the bed with her?

    Weighted blanket?
    WAY 2 Cool 4 School


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  • mrszee2b said:
    Does DD2 drink water? What type of cup does she use for that? Is she very particular about that, too, or will she drink water out of any type of cup? My DD1 would only use one type of sippy cup for water, and I didn't wean her off of the bottle for milk until she was about 2.5. I did separate the bottle from her bedtime routine around 18 months and just offered water at bedtime. At two and a half I convinced her to try drinking milk from one of those milk boxes that comes with a straw--she never wanted to use an open cup because she was afraid of spilling it on herself. I also started "forgetting" some of her preferred cups, utensils, etc when we traveled and that helped her become more flexible around that.
    She's not picky about water cup, but we usually use the recyled milk jug ones because they don't leak.  P drinks milk out of the ziploc take & toss type but she won't use those even though its what "sissy" does.  
    If I "forget" something and I don't want to go psycho I usually have to go back and get it, she's that rigid.  We did that with P, when we went to Baltimore for an appt, I "forgot" her paci, and that was easy peasy for a kid who was pretty obsessed with and relied heavily on it for comfort.
    Bed: Do you have a cat or dog that would sleep on the bed with her?

    Weighted blanket?
    I will look into a weighted blanket!  We don't have any pets.  I hate to throw the girls together in a room and destroy both of their sleep habits.  This sucks lol
    Baby bottle:
    Have you tried the "There are babies who need your bottles. Let's donate them!" Method?

    Has the pedi given you any tips?

    Bed: Electric Blanket to warm it up and make it toasty? Maybe she doesn't like the cold sheet feeling. Flannel Sheets?
    No, the pedi didn't give any tips but the EI team obviously thinks I'm psycho when I told them she still had a bottle, they didn't offer any tips either. :-\
    My cousin just had a baby so I told her we needed to get the bottles together and give them to the baby so she could have something to drink out of.  She wasn't amused by that, she said to buy her some bottles.

    Bed:
    She's been sleeping with a soft blanket when I move her in our room but I had thought about electric blanket.  She overheats and sweats most of the night though, she doesn't usually have any covers on her.

    Thank you both so much!!  I think it's gonna have to be me sticking to my guns and really ready to commit to the insanity and hell these things are going to cause.  GAH parenting is hard!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • You know, when I finally got S off of the bottles, I just kind of had a feeling that she was ready.  It was weird.  I had been trying all different things, and this one day we were sitting at the table doing play doh, and I said, "hey, I got a new kind of milk for you to try," and she tried it.

    The pedi had told me to just drop them and who cares if she didn't drink milk, but I seriously felt like it was traumatic for her every time I tried to take them away cold turkey.  I know people judged me for letting her keep them that long, but I understand how hard it is with some kids.  If you have to take small steps with it, don't feel bad about that.

    The thing that got S out of our bed was that I bought her a beautiful new aqua blue bed that she is in love with.  When she's super-anxious, DH does still have to lie in her room for a while to help her fall asleep, but it's not every night just once in a while.  P just turned 4 right?  The bed thing was still a work in progress when S was 4.
  • I do get you on the kid with so much rigidity thing. DD had a bottle until almost 2 1/2. She still uses a pacifier at night and she is 4.5. Honestly, we were never able to transition to milk in a cups she refused. I tried 3 times a day for a year, every single thing you can think of. Now she just drinks water in a cup. Straw cups are the only thing she will use for on the road or open cups at home. She eats yogurt and cheese everyday. Sleep is so hard. DD still comes to get me every night to sleep with her in her bed. Since you want her in the room, have you tried a toddler bed next to yours? For the milk, what about flavouring it chocolate or strawberry but only in the cup? Not the healthiest but you gotta do what you gotta do lol!
    Warning No formatter is installed for the format bbhtml
  • FWIW, we had house guests over the summer, so we did a trial for a week of having DD1 and DD2 share a room since they are going to have to do that when the new baby comes.  They LOVED it, and they did really well.  They can't wait until they get to be in the same room again.
  • -auntie- said:
    Bottles?

    They need to go. A bedtime bottle of milk sugars is a great way to add root canals and crowns to your medical spending. Not worth it. DS had a fractured tooth that got a huge cavity in it when he was about 2; it was a big hairy deal. What was especially awful was the attitude the dentist gave me because he assumed DS still had a bottle. FTR, DS was EBF and never took a bottle so his whole mouth wan't filled with caries as the dentist expected. She can hydrate with water and get calcium through diet and supplements. 

    Our dentist office didn't even ask if she was still on bottles, and of course I didn't offer that either.  She does suck both of her thumbs when she's very upset so she has an overbite.

    I get that she doesn't do well with change. But she has to do this sometime and now is better than later. My kid doesn't like change either. He's quoted in Parenting Your Aspergers Child on page 63- "I'm Flexible, I Just Don't Like Change".

    I think it's me too..I don't like change. Ick.

    Co-sleeping?

    Not a fan. I think it interferes with allowing a child to become independent. Sometimes parents use it to avoid intimacy in their adult relationships which isn't great for the family in the bigger picture.

    H sleeps from 7 or 8pm to 130am so we wouldn't "sleep together" most nights of the week anyway, or do the dirty when he has to work lol.  If we need cuddle time I just move her.  However, moving 50lbs of sleeping child isn't exactly easy.  

    Do you have a therapist working with either of the girls. I know that sometimes parents of kids with medical or behavioral issues don't see autonomy in sleep as a priority given other stuff they need to deal with. And that it can be hard being an authoritative parent with kids who have been dealt a crappy hand in life. Do you think the period when DD#1 preferred your grandma has made you a little gun shy around instituting a policy of age appropriate sleep independence? 

    I don't think it has anything to do with her period of hating me.  I can't get rid of her now :-P  I can't bribe her to stay at my grandma's house.  I really think it was directly related to the cathing, I was hurting her and my grandma wasn't.  It's been well over a year since she asked/wanted to stay there overnight.  They are there while i'm at work or at an appt, and she always says, "I'll stay for a little while mom, you come back and get me."

    I do think I may "worry" more about her than if she didn't have medical issues.  I really just want sleep, not interrupted by her kicking/coughing/climbing in the bed/rolling over on me/hitting me.

    I get that this won't be pleasant. And I get that they may have some sleep regression initially. JMHO, you are too invested in DD#1's sleep. 

    I'm directly relating my investment in her sleep to dd2's sleep.  If she wakes dd2 up, I will have hell to pay.  M 95% of the time sleeps all night, but on the off night she wakes up..it's not fun.  She doesn't really put herself back to sleep, we have to do the whole bedtime routine again, including another bottle, and it's a mess.

    I don't see the point of having a sister if you don't have someone to giggle with at bedtime.

    This is true.  I was an only child so I don't think of it that way.  I asked dd2 this morning if she wanted dd1 to sleep in her room with her, and she looked at me very seriously and said, "no daddys room, much better" lol.  She likes her alone time I think when she falls asleep.  I'm just scared I will end up with 2 not sleeping which will equal zero sleep for me.  I tend to over think things, obviously. 

    Another thing I'm unsure of is if P gets up in the  night and opens M's door it's going to wake her up and M does not like her door being open.  And if it's open when H gets up at 130am then she will likely wake up.  Her medicine in the milk is an issue too.  It's a capsule I open up, and it's disgusting, if she isn't drinking her milk, she isn't taking the pill.  



    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • In re to the milk, I would gradually switch the milk in her bottle to water. Over the period of a few weeks, start giving her 95% milk to 5% water until you get to the point her bedtime bottle is mostly water with maybe an ounce of milk. You could give the medicine via syringe--this is what we do with DDs crushed pills/seizure meds. You could also make homemade Popsicles with plain yogurt, mix the pill in that and give that as either part of dinner or an after dinner snack so you would be able to brush her teeth afterwards. I agree with the suggestion of starting on a sippy that is close to a bottle and gradually making the change though I think tackling the milk issue should be your first order of business.

    In terms of ending cosleeping you may want to look into the sleep lady shuffle as its not straight cry it out and is a more gradual transition where you can provide comfort to your child while laying the groundwork for independent sleep. Good luck!
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  • I'm going to try the water/milk thing.  If that doesn't work, just less milk each night.  She is super picky about her milk (she drinks almond milk) so she may pick up on the water added, we'll see. She *might* just think it's gross and throw it down and go to sleep without it.  I did tell her, no bottle anymore during the day.  No juice or milk, except at bedtime for now.  She wasn't happy about it, and didn't drink milk this morning or juice in the hour or so we were at my grandmas.

    In her defense and somewhat mine, she was on formula until 18 months and then pediasure until 24months.  Her milk is important since she just got back on the growth chart so i'd rather not have it vanish.  

    And medicine in a syringe is a no go, she is awful, pukes it right back up.  

    Gonna take advice from everyone and hopefully something will work and i'll stick to my guns. FWIW I had a bottle until I was 4 or 5.  I distinctly remember when my mom took it away.  I'm really going to focus on it though, because she doesn't "need" it.  

    And DD1, Ugh lol.  Maybe once DD2 is sleeping without her bottle, i'll throw them in the room together and see how that goes.   
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • realisticdreams said: I did tell her, no bottle anymore during the day.  No juice or milk, except at bedtime for now.  She wasn't happy about it, and didn't drink milk this morning or juice in the hour or so we were at my grandmas.
    And she did OK with a single bedtime bottle? She's more resilient that you give her credit for. And so are you.

    She did "ok" but she refused to drink her milk in the AM or juice out of the cup, so she just got either.  She had a fit about both but eventually got over it.  
    In her defense and somewhat mine, she was on formula until 18 months and then pediasure until 24months.  Her milk is important since she just got back on the growth chart so i'd rather not have it vanish.  

    Milk is filling, you may find she'll have more of an appetite if she's not filling up on fluids.

    She eats and eats and eats..wayyy more than P who is over the 100th percentile but she just never gained weight.

    And medicine in a syringe is a no go, she is awful, pukes it right back up.  

    We never had any success with syringes. And since this is a chronic condition, you need to make the process something that could be done nightly. Maybe a dollop of pudding, jam or honey will help it slide down. Then a rinse of water to clean her mouth. 

    She will likely refuse anything that she "knows" has medicine on it and I can't think of anything she would want each night and not question.  She's so picky/choosy.  She should be having her kidney surgery in March so hopefully no more meds.

    Gonna take advice from everyone and hopefully something will work and i'll stick to my guns. FWIW I had a bottle until I was 4 or 5.  I distinctly remember when my mom took it away.  I'm really going to focus on it though, because she doesn't "need" it.  

    She needs, air, water, food and her medicine. You having a bottle until 4 or 5 is more about your mother than anything to do with your DD. Only child? Yeah, there's a topic to mine.

    Once M is able to fall asleep without the crutch of her bedtime shot, she'll be able to put herself back to sleep without so much drama if she does wake up.

    Fingers crossed to that!

    And DD1, Ugh lol.  Maybe once DD2 is sleeping without her bottle, i'll throw them in the room together and see how that goes.

    I think it's wise to start with DD#2. It seems like she is the tail wagging the dog in your house. She's driving your bedtime routine to the point where she deciding who sleeps where and fostering dependence in her older sister's sleep hygiene and creating a disagreement between her parents.

    Then you can move on to fixing DD#1's sleep needs.  I'd present it as a "school kids are old enough to sleep in their own beds" and maybe find some books about sisters who share a bedroom for your nighttime reading. I would work really hard to "fix" this prior to school starting. You don't want a kid with her medical history talking about how she and daddy go to bed together in mommy's room before mommy does. For someone who doesn't know your family situation, that would be a CPS visit for sure. You have enough on your plate.

    Never thought about it like that.  I do lay down with her, she won't just go to bed with him, but I can see where it could be turned into something bad/gross.  She won't start public school K until Aug 2015 because of her bday, and I do have family that works at the elementary school she will go to so i'd like to think it wouldn't blow up.  But, lets face it she knows more about her anatomy down there than most kids her age due to cathing.  Sigh.  Why can't anything be easy?  I also totally slept with my grandparents until I was like 11 lol.  And her sleep issues started because we didn't know about her spinal cord and she would scream and cry and kick her legs all night, she rarely every slept, we thought she was bionic, it did improve greatly after her surgery but M was born when she was only 15 1/2 months and she had still yet to sleep in her crib, and in light of her not screaming and waking up M it was easier to just keep her in bed with me.  She had her back surgery at 20months but then the sleepwalking started (she used to have night terrors too, legit ones) so bed/sleep for us has never been normal, unfortunately.   I am going to try and come up with some game plans and stick to them though.  Thanks so much for all the help.  I'm currently wanting to pull my hair out because M's new obsession is her dora socks.  As in, toting socks around with her, sleeping with her socks right now..so odd.



    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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