OT-I am losing my mind

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Registered: 04-28-2007
OT-I am losing my mind
9
Wed, 03-26-2008 - 7:35pm

I know I have mentioned it before, but I don't think I have really gone into detail (and I mean DETAIL) as to Roan's high needs behaviours.

1. Sleep-she doesn't, or at least for no more than 2 hours at a stretch; it is usually an afternoon nap but again only when all the cosmos is in allignment and the world is spinning on that perfect axis; ie: it's a rarity)

2.Eating-again, she doesn't. She refuses to be spoon fed, will play at feeding herself and again that will be yogurt and puddings etc. Every so often she will scarf a hamburger, but again eating is a CONSTANT battle. In fact her weight to height ratio has expanded, now 25% weight, 50% height where before she was closer to 60% in bothy these numbers.

3. Breastfeding-it is the ONLY way she will take any fluids really. Again she plays with the sippy/bottle, but after what I think is ages I look and she's not even tapped a half oz. I'm talking, milk, juice and water. She also wakes to nurse several times a night. We have tried ferber and various other ways to get her back down but nope, only the girls will do. Oh, and when she does nurse her legas are literally flailing everywhere, and if I try t hold them she has a fit; yes my boobs hurt too.

4. General neediness-She is SOOOOO High Maintenance. She needs to be in my arms or else running all over the place like a chicken with its head cut off; there is no median.

What I've tried to do-
I have attempted time and again to bring this up with the family doctor, but as much as I like the guy, he's proven pretty useless with the kids with their developmental issues (he even questions Cian's AS dx). We have a new ped set up and I will make an appt as soon as insurance clears him.

I tried EI but I was given the cold shoulder as she's hitting all the physical & cognitive milestones, makes eye contact, babbles like a 15 month old should. So why do I feel there is something not right here. I mean I do not know anyone around me or even on the online boards that have a toddler that won't take a cup/bottle at all. Oh there are plenty of extended breast feeders but all will also take a cup/bottle if necessary. Roan will literally go 12 hours of needs be.

The irony is Cian at 15 months was a dream baby, co-operative, pleasant, took a bottle/sippy, weaned at 11 months; it wasn't until age 2 and the speech was slow that I saw any real red flags. I feel Roan is one giant red flag, but for what I honestly do not know.

I've scoured other spec needs boards and all I can find that's any way fitting is the high needs baby board, but it's slow and no one really seems to be experiencing what I am (other than no sleep;)

I guess I'm whinging here as I don't know where else to go. I see my therapist once a month but I am feeling like I just rehash the same issues again and again. Dh is working 70+ hours a week so he's no use to me either during the week, and although he tries at the weekend, I find myself resenting him them....isn't that odd?

What the hell can I do here. On paper she's fine, but in my daily 24 hours she is soooo not right!

Dee




Edited 3/26/2008 8:38 pm ET by roanmom
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Registered: 03-04-2007
Wed, 03-26-2008 - 8:56pm

Dee,


Oh how I feel for you!

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Registered: 05-16-2006
Wed, 03-26-2008 - 9:46pm

(((Dee)))


I really don't have an answer for you...sorry. I do understand the anxiety of not eating....I finally got Adam to chow but the whole not eating thing will make you nutty. On top of that you really don't sleep....that's finally gonna make you crack too. I don't blame you for "looking" for a red flag to come flying at you since you have 2 boys on the spectrum but I'd be nervous too.


I'd ask for a second opinion from another doc of what to do with her sleep, eating, and jsut neediness..that's her age too.


Just know that I do understand the eating issue...it can be down right scarey.


Nora

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Registered: 11-28-2006
Thu, 03-27-2008 - 1:13am

Girl, you can't loose what you never had lol.

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Registered: 04-07-2003
Thu, 03-27-2008 - 1:42am

I mostly just want to echo everyone else's comments. I know how hard it is to be sleepless, esp when you're also dealing with over-tired, high-needs kids, and I'm so sorry you're having to experience this.

Obviously you know your kids best, but I will say that my last (4th) child is a "spirited" child but definitely not AS. She was almost exactly as you describe your dd. Occasionally over the last couple of years I'd question whether I was overlooking any AS in my dd, but I've come to realize that even tho' she has some overlapping symptoms, she definitely doesn't have an ASD.

My 11yo NT ds was also similar as a baby, but he at least liked food and occasionally a sippy cup. Fortunately ds has outgrown most of his issues (except sleep, and since I learned about melatonin on this board, that problem has been addressed). My 4th child, NT 4yo dd, is outgrowing many of her issues, too. She's still high maintenance but much less so than when she was younger. I started using melatonin with dd about a year ago, and it's helped temper some of her neediness since she's now better rested. Prior to melatonin, she wasn't napping, and she'd only sleep 6-8 hours at night. Now she sleeps 8-10 hours.

I hope you find a doctor who listens to you better. I don't mind a doctor telling me I'm wrong as long as they can explain to me why they think I'm wrong. When a doc just dismisses you out of hand, it feels like they're not listening, so I can't accept their diagnosis.

iVillage Member
Registered: 03-26-2003
Thu, 03-27-2008 - 2:16am

Sounds like at least a sensory integration or possibly self regulation issue. Dave was lots like that and is mostly fine now, but as you know it can also be red flags for something else. And Dave is only fine I think in part because we started dealing with his regulation issues early on.

How about a private OT eval or through insurance. Did EI send out an OT type person?

I had EI come out for Dave and I would hear from some "gee there is something but we don't know what and he is fine on our "tests" so he doesn't qualify. The only thing they really could definitely weed out was sensory issues. It didn't qualify him but I was able to get enough tips, information and evals to help direct me until he was able to get some help in preschool.

It is hard to wait for sure. I hated it myself. It is easier now that I am on the other side but I felt like I was going crazy the entire time Dave was tiny until he hit first grade and I knew he was gonna be ok (a bit ADHD and excentric but ok).

Disney08

APOV on Autism
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iVillage Member
Registered: 07-21-2007
Thu, 03-27-2008 - 7:24am

Dee,


Have you tried having Roan drink through a straw? She may like the sucking action. I am sorry that you are so sleep-deprived. I think that trying a new pediatrician is a good idea. I am thinking of you. Let me know if you need anything.


Love,


Susan Sz.

Avatar for betz67
iVillage Member
Registered: 03-26-2003
Thu, 03-27-2008 - 8:01am

oh my gosh Dee. She sounds just like Owen! (((HUGS)))) I remember how difficult it was!

Owen refused all other forms of nutrition until I weaned him at 15 months, and then once he finally started eating (after a couple of days) he would only drink chocolate milk. Later he would eat applesauce, graham crackers and hot dogs, that was all, for more than a full year. He never slept more than 2-3 hours at a time. He had reflux and was colicky until 12 months. He was in constant motion, running, climbing, banging all day long. Inconsolable when tired but not able to fall asleep. We tried everything. He quit taking a 'formal' nap about 14 months but would sometimes fall asleep mid-walk and cat nap for 20 min then off he'd go again. He loved tight spaces and rubbing up against things. The only way he'd sleep more than a couple hours was if I was right next to him. The co-sleeping in our bed was too disruptive for DH so we slept on the sofa for a long time then I moved Owen to a big kid bed so I could sleep w/ him there. I asked time and again for someone to give us some kind of Dx, but he was on target for everything. I finally got Weston's OT to give us a SID dx, but our insurance wouldn't pay for therapy and w/o some other Dx EI wouldn't give us services since that's not a stand alone reason for services. At age 3 our family Dr said, "I can give you an ADHD dx now-- but you really need to have a psych do that and they usually don't dx a child this young. And I don't believe in medicating a child this young myself so you'd have to have a psychiatrist do that as well. How bad is the situation?" So rather than have to deal w/ another dr right then, we just waited-- I am the queen of waiting (probably not the best thing but....) and did a sensory diet as best we could at home.

He SLOWLY got better. I remember the first time he ate meat other than a hotdog, I was so thrilled. He's now 6. He's still a very very picky eater. He's still extremely high energy. He still has issues w/ sensory integration. But he's a GREAT sleeper now-- that happened when he was 3 1/2 or so. He now has a pretty good diet tho he still does not eat very many veggies and refuses most breads and cereals. He's doing great in kindergarten. He loves school and he's becoming open to trying new things. His teachers think he's the best kid and so well behaved-- who would've thunk it? Dr still says we could have an ADHD dx, but until it's needed for school we'll just wait it out and give him plenty of opportunity for lots and lots of exercise and hard work for his muscles.

I know waiting and getting through this is hard! Owen was doing this when we were going through the worst of the Weston issues (1st and 2nd grade). I was a zombie and trying to deal w/ people who thought my other kid was awful too. (((HUGS)))

Betsy

iVillage Member
Registered: 04-28-2007
Thu, 03-27-2008 - 9:02am

Thanks all,

More and more I do think this is a regulation/sid issue as as so many of you pointed out not something EI cover. We may well be staring at an adhd situation but who knows and no one is willing to go there until preschool anyway. Do you think I could try melatonin this young? I have the liquid form that we sometimes use with Cian.

It doesn't help she has a dual nasty ear infection (and only a month after tubes too). I mean icky ear drainage type. We see the ENT tonight. Should prove interesting. As I type she is ;iterally hanging out of my leg begging for "nu nu's" ugh....

Dee

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Avatar for insideout418
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Registered: 03-25-2003
Thu, 03-27-2008 - 4:04pm

oh but Deeeee she's so CUUUTE, how could something be wrong?!?!


Re: your OP title, I don't think losing your mind is OT...lol


I, too, think you are on the right track paying attention to this stuff, and asking for a new dr.

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