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Discussion Starter · #1 ·
I made an appointment this week to discuss the sleep and behavior issues again with my pediatrician, whom I love and trust and have been taking my kids to for over 10 years. I have mentioned them off and on over our other visits, but I scheduled this one specifically to discuss them. Essentially, ds3 is still not sleeping well. Giving him melatonin at bedtime has shortened the time it takes for him to fall asleep from 2+ hours to about 20-30 minutes, but then he is up 4-6x a night "needing" something--a bottle (I cannot manage to night wean him as it causes inconsolable tantrums that do not decrease), a kiss, hold my hand, to tell me good night. Refusal to anything causes longterm tantrums. We are going on over 1 1/2 hour one right now because his bottle was too cold, he doesn't want it, he wants it, it's too something, I need a kiss, cover me up, I can't find my bottle, my bottle fell, I can't find my brobree, I'm cold, I'm coughing, the dog won't leave. Basically anything he can think of. [ETA note: he finally went to sleep with much coaxing and tucking and retucking on my part at just over 2 hours] Like his tantrums during the day, he is inconsolable, can't calm himself, and although he wants me to calm him, it frequently does not seem to help. Eventually, he will wear himself out, day or night, and go on to something else or hopefully to sleep. Melatonin throughout the night still leads to almost the same number of wake ups (not usually as long although it descresed them for the for the first couple of weeks, and a morning wake up at 3:30/4 am. Calms forte resulted in 2 stretches of pretty good sleep, with 2 hour night terrors in the middle, every night he took it. He goes to sleep around 7:30, is up between 530-630, and takes 1 short nap most days.

He was adopted and came home at 1 year, and has never slept well. We had a sleep study done when he was about 17m old, as he has a craniofacial anomaly that likely impairs his breathing. While the results were abnormal, they were not unsafe or really treatable, per his ped, an ENT, and his plastic surgeon. So there is nothing to do on that front at this point. They all described it as like sleeping with a cold, not wonderful, but ok. He has some severe LT food allergies to egg, sesame, and tomatoes, but nothing else. We had extensive allergy testing from an allergist specializing in toddlers, so no other allergies lurking out there. Reflux is not an issue, even if it was he gets thickened milk and an elevated bed due to his swallowing disorder, that may or may not be related to the CF issue.

During the daytime, he has huge impulse control issues, like a very spirited 12-18m old. If it crosses his mind, he does it or says it, without regard to the consequences. He pushes limits, he hits, he yells, he talks back. I have had more broken toys and household items in the 3 years that he has been home than a lifetime of my other 2 boys (ages 12 and 5). My other boys and dh and I have been hit with flying trains, cars and other toys during temper tantrums or just when he doesn't want to do something (share. clean up, etc.). He cannot sit still, often even for a full (quick) meal of favorite foods. He cannot stay in a chair or my lap without wiggling or squirming. He also is prone to running off. I had a lightbulb moment when I realized that I planned to pay to send him to our daycare's preschool program next year because he can refuse to participate/get up/play elsewhere in the room, etc. as long as he doesn't disturb the lesson versus our excellent school district pre-K that is free but requires table activities and sitting still. It is affecting his academic option at this point, and he is not able to sit still to learn Kindergarten readiness type skills. I don't see that changing before August when he official enters whichever preschool. While I know there are differing opinions on school readiness/age/homeschool, he has to go to preschool/daycare because of our financia/job situation. So right now, those are my two choices. I don't want to debate that, please.

So anyway, that is the long backstory. Our ped wants to send him for a neuropsych exam for sleep issues and ADHD, although he told me he's not sure exactly sure what that will involve for someone his age. He is expecting to do a medication routine, and already laid some basic groundwork and reassurance. I am casually familiar with the head neuropsych he is referring us to through work, although we will likely have someone in his office rather than just him. He is good, thorough with my adult patients, and I liked him when I met him, he was compassionate and looked at family systems/effects rather than just the patient in isolation. We have done every behavioral intervention I know of, and sensory issues do not seem to be the problem. Our ped feels like we have gone above and beyond--his words were "you have tried more than any other parents I know would, it's time to take this next step."

We have got to get a handle on whatever this is, it is causing serious damage to my family and my marriage. My other kids don't get enough attention as we are always in crisis mode/catnapping. Dh is at a loss how to handle things anymore. We are severely tired, and don't have the patience or strength to deal with living in crisis mode 100% of the time. I have always been pretty opposed to behavior meds for especially young kids, and feel they are over used for ADHD. But we have got to do something, and I think we are to that point. That I am ready to consider it speaks volumes to me about how difficult this situation is. And he can often be funny, charming, sweet, so I try to focus on that, but... So reassurance, advice, experience, questions to ask?
 

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Oh Carrie, I'm so sorry that you are going through all of this. I think of you often. I'll address the neuropsych/school stuff here and my adoption thoughts on the other thread.

I'm not going to debate his need to go to school next year but I'm sad that the Pre-K program is so structured. Most good ones are like a regular preschool programs and the really structured ones make me crazy. What resources/systems does the Pre-K program have in place to support children with special needs (either diagnosed or not?) My daughter is also In a school district Pre-K class (multi-age 3s. 4s, and young fives) but it's inclusive and funded by our state Pre-K, Head Start, the EC program, and tuition. There's not a whole lot that they have to do in a structured way and there's two assistant teachers who are wonderful and are able to guide the children through the more "groupy" parts of the day and take them away if they need to do something else/differently during those times. I think I would want to know what they do when children just aren't able to do the structured activities for whatever reason. They can't drop the child, so how do they make the more difficult things work? I hear you about financials being important. I waited to do my daughter's adoption until she was accepted to Head Start.

I was diagnosed with ADHD at 39 but I've suffered from it my whole life. No one knew what to look for back them. I wish I had taken medication when I was a child. It would have changed my whole life. I've always felt like there was a blockage in my brain and the meds (when I can afford them) help take that away. My DS was diagnosed with ADHD last year but as of right now, medication is not indicated. But if things change, I'd definitely look into it. We'd have to tread very carefully because of his birth parents history but I would never rule it out. He also works with a psychologist and an OT every week.
 

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ADHD does not have to be treated with medication, such as with counseling and behavior modification. Medication should be decided on your child's needs and not because of the fact that you feel it is over prescribed. If it is what is able to treat the problem, then it may be worth it.

Ds's neurologist pointed out to us that adhd is often misdiagnosed. I think you need to keep following up on the sleep issues because they can cause adhd characteristics. Are you doing an eeg as part of the sleep study?

Ds has epilepsy with learning disabilities due to it. When we did the neuropsych exam, we were told adhd-i and dyslexia (his symptoms change when treating the seizures). With a change in medication, he was no longer adhd-i, but became highly impulsive at school and angry at home. Changed aed meds again and now back to adhd-i, but teacher can not tell, if he is daydreaming or seizing. It is hard to find right balance and what works sometimes; seems more like trail and error. lots of error.

I hope your family gets the rest you all need and you are able to comfort you ds, so that you can spend some more time with your other dc.
 

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Just wanted to post with some hugs for you. We've been through bouts of serious sleep issues and it is so, so, so, so hard on the whole family. I hear ya! I hope the neuropsych eval yields some helpful information and a way forward.

Melatonin has only been occasionally helpful for my DD. My mom keeps asking, "When are they going to make some baby Ambien?" LOL - some days I wish I had some for DD! Anyway, I hope they have some other ideas for you re: getting your child to go to sleep and STAY asleep. (And I hope they really listen to you and don't do the judgy "well you just need to set a firm boundary/expectation with him and he'll get the picture" standard advice that is totally NOT helpful when your kid has atypical sleep problems).

Also: FWIW, my neurotypical son is 7.5 years old and is a spirited and very impulsive child. "Think it, do it" is his motto. I thought we'd never be able to go out in public (it wasn't worth it for me to go somewhere to just spend the whole time chasing after him and making sure he didn't break stuff!). I just wanted to say that it has calmed down as he's gotten older. He still does hair-brained stuff all the time but it's less terrifying and destructive (e.g., isn't as likely to dart across the street without looking, isn't as likely to try juggling a glass object). Just to give you some hope on that aspect of your child's personality!

And I second PP's recommendation to see what kind of special services are available through your school district. My DD is in special ed preschool and staying with the group and learning to sit in circle time are two of the goals they are working on with her. And she's coming along! It's helping, slowly but surely.
 

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Discussion Starter · #5 ·
Thank you both for your thoughts:) He woke me again at 7 screaming, and I was up 2 more times in between when I finally got to sleep around 4 and then. Did I mention I'm sick and Rick is out of town?

Polliwog, as far as the preschool, I'm honestly not sure what classroom supports are avail. When Jimmy went 10(!!!) years ago, he was in a self contained PPCD classroom and there was no other Pre-K program. It was fantastic and exactly what he needed. I can't say enough about how wonderful it was. Connor was in the regular Pre-K last year, and now their PPCD program is mostly inclusion. His class had several SN kids that I could ID from physical characteristics or knew personally. I don't know if she was the only SpEd inclusion teacher, but there was one aid who is now the listed SpeEd teacher this year. About 17 kids, probably 5 SN. Connor's teacher was actually low structure to me, I would have liked more, but there was a lot of table time and table work. I come from a play based background, so that was hard for me. The routines were not as concrete as I would l have liked to see in a SpedEd mainstream class. Connor did fine, but he is the only one of my boys who doesn't need much routine and easily goes with the flow. She was definitely overwhelmed and didn't know what to do with another kid in there that I know from church and from work. Isaac would not qualify for self-contained, and I'm not even sure he would qualify for an IEP based on current guidelines here, even with a dx. 504 yes if he had a dx of ADHD, and for sure for the food allergies. I'm afraid he would get labeled as a troublemaker and a problem kid early on. His current daycare offers a more play based preschool, they are familiar with him, and could more easily work with him just as they already do. They are a great group of women and he does well there, but he will still be going to an academic K the following year, unless I hold him back...Also, unless he is on an IEP, I think they can dismiss him as it is not a mandated grade or Headstart. I don't know that for sure.

I have not done a formal OT eval, but I am familiar enough with what's involved that I am pretty confident not having one. He doesn't respond to "sensory tricks" but I could get one easily if needed (I'm working in a rehab center this semester:) ) Thanks also for your note on the other board. I will dig out his info and take it all with me, I just feel bad about putting it all out there so open for his privacy later on, I guess. I have managed to keep it pretty private, even with the geneticist, who was able to ask specific questions so I only had to disclose parts of it.

Thanks for the person insights on meds. If that is what is recommended, and based on the ped's preparatory speech, I think it will be, then that's what I am going to do. I will just worry.

Melissa 17s, they did do an EEG with the sleep study. Not all the leads stayed on the whole time, but they were pretty confident there was no seizure activity going on. I think we need to get a handle on the sleep first, too, since it can cause ADHD like behavior. That is going to be my first request, just to see how much, if any, the behavior improves. Just being able to handle him rested on my end would be a huge improvement. I can't imagine we can do that without meds for sleep. I would prefer addressing one problem at a time, but will see what the neuropsych has to say. Your situation sounds very frustrating between the ADHD and seizures. I hope it gets easier for you over time. I think Isaac meets all 9 criteria of the hyperactive requirements in the DSM, and some of the inattentive. Right now, I have a lot of behavior mods in place. It's hard, as he appears to have no concept of cause/effect relationship with regards to consequences, natural or otherwise. There is just not a lot that is motivating enough to overcome his incredible impulsivity. Even a 1:1 "first...then..." chart is not effective with him most of the time, and I can usually get a variation of that to work even with my autistic kids with behavior issues LOL. We don't really have any good child counselors, that don't have a huge waiting list and schedule issues. It's not off my radar, but I'm honestly not sure how much they could help us at this point. I know the techniques and such to use, have a lot of them in place as best we can, which does help. But it is still so stressful. Even putting him down for naps, I have to sweep the room. He managed to dump a bottle of bubbles and smear half a tube of diaper cream on the pillow, bed, blankets,and himself once in less than 10 minutes. His behavior is also starting affect his peer relationships, and I don't think he even sees the connection between "I hit him and took all the cars, now he doesn't want to play with me".

Again ladies, thank you both. Hopefully I can get a nap today when they go down, and will feel better. I need a hot shower but won't get one until after bed tonight or after dh gets home tomorrow if I can't swing one tonight.
 

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You could try time-released melatonin.

My son was suspended twice and had ISS at least 5 times in K. He was also looked at, and treated as, a behavior problem (I have a bullet list of many of his behaviors if you'd like to see it). Counseling and behavior modification did not work until he was medicated...with the right medication. The first medication (Concerta) we tried was a huge improvement, but after the newness of his new school/new school year wore off his impulsively was becoming a huge issue. We switched medications and the second one (Vyvanse) worked even better; when it looked like he might need a dose increase we switched to the time-released melatonin (for unrelated reasons) and the remaining problems went away. After we switched medications therapy finally clicked for him; before that point he hadn't been making much progress.

I think your ped made the right referrals.

If you do end up using medication I would go with a specialist and not have this done through your regular ped.

This site isn't an "official" comparison of meds but it seems accurate enough for an overview.

http://healthlifeandstuff.com/2009/12/the-ten-most-important-adhd-meds/
 

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Our Pre-K classes are very play-based and DS's kindergarten class (he's repeating this year) has a lot of time for play/free choice. We are, however, in central NC and much of the current early childhood research is done here at UNC.So, there's a definite effort to keep Pre-K to Grade 1 developmentally appropriate. But, either way, a good Pre-K teacher/teaching assistant should be able to make accommodations for each child's special needs even without an IEP in place.
 

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Quote:
Originally Posted by Emmeline II View Post

I think your ped made the right referrals.

If you do end up using medication I would go with a specialist and not have this done through your regular ped.

This site isn't an "official" comparison of meds but it seems accurate enough for an overview.

http://healthlifeandstuff.com/2009/12/the-ten-most-important-adhd-meds/
I am so glad that the site recommended exercise. I was talking to a friend earlier today about ds and she counsels adults. She said she recommends exercise as part of the therapy for her clients; she really liked swimming because it uses so many muscles. She also said group sports like soccer are good.

One of the other mom's on here has wrote some about her ds having narcolepsy, which had adhd like symptoms. I hope she catches the thread because she might have some good input.
 

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Discussion Starter · #9 ·
isisreturning, I think we cross posted. Thanks for telling me about your son, it helps to know this may gradually go away. Like you, I dread going out in public,and find myslef often rescheduinge or avoid doing things to avoid having to take him out. church is a nightmare--if it wasn't simply so engrained in me at this point, I wouldn't be going. I have gotten to where I even get anxiety every Sunday morning, anticipating it. And we have children's church, so he only has to get thorugh 10-15 minutes of regular service! As far as telling me to set boundaries--my ped asked me some specific questions, so I feel like that info will get conveyed. While I suppose it could be said that I have tried a modified CIO with him, he is almost 4yo and still eating like a newborn. I really feel like it is ok to make him wait a bit. And I lay there and hold his hand, give him kisses on request, etc. Just have tried to wean a bit, with no success. He can last over 2 hours! So there is none of the gradual getting less and sleeping better that is supposed to be occuring LOL I'm just going to lump it all together and say that I have tried every method I could find, and nothing worked and hope that covers it:) Do you think I can check out the school supports without a dx? registration will be in about a month, and I don't know if we will be and tested by then...and I will have to pay to register him for private pre-k at the same time if I choose that...

Emmaline II, that was a great chart! thanks for the info, it is a really good go to reference. I wish it listed which came in liquid form, as I know our options are limited until he can do pills. No such luck yet. Tthat is the same reason we haven't tried the time-released melatonin, which is on my list to try at a future date. Thanks for the encouragement that it was the right thing to do regardig referrals--I have dreaded this convo for the 2 weeks I have had the appointment made. My Mom was very supportive when I talked to her, too. Actually, it was something along the lines of "it is about time" LOL As far aas specialists, our options are really limited due to location. the closest specialist that could prescribe is about 2 1/2-3 hr away. Usually, how this neuropsych works is that he makes specific med recommendations, and the dr works with them to get dosing, etc. At least, that is how he works with adults that I have seen, assuming the same for kids, and that is what the ped implied as well.

Polliwog, I love the info that comes out of there regarding play-based! Our schools have gotten more academic, sadly, over the last 5-7 years from what I have seen between my two oldest kids. They were super low key and play based, with decent academics still hapenning when Jimmy was in elementary, but it is definitely more table stuff now and less play/recess. I know the principal of the pre-K, and she is/was the sped ed director for the elementary grades, maybe I can just meet with her and feel her out. Unfortunately (well fortunately as I have survived and almost made it!!!), I have 2 weeks of clinicals left, then comps at the end of April, so my time is super crunched the next 6 weeks.

melissa17, he definitely does better when he a chance to run things off! We don't get outside as much as I would like, mainly because he requires close supervision, and I often have things that I have to do inside when I am home. But on daycare days, he is outside for hours, and plays inside a lot, too.

I am feeling a little better this evening, the younger two played exceptionally well (oldest is camping with DH and scouts since Thursday) and even helped me do laundry and dishes. My house was a disaster, and while it still looks chaotic, a lot got done--3 loads of laundry washed, dried and folded plus 2 others folded and hung up, dished done, kitchen straightened, and lunch made for tomorrow! Both are down for the night and although I am still on a steroid/cold med buzz (sinus infection) I feel more relaxed having accomplished stuff:) I think it also helped talking to my Mom, she was so supportive and reassuring. Thanks again--keep the thoughts coming if you would:)
 

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Cranio kids, like my daughter, have horrible sleeping issues.

Try getting another sleep study done. Kids with cranio ussues should have them done every 3 to 4 months b/c it can change so fast.

Also, try 1 regualr melatonin and 1 time relased one. Thats what my DD was given.
 

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Discussion Starter · #11 ·
beenmum, every 3-4 months, really? The only thing I remember about repeating is that we would need them periodically, unless we had a new specific issue. I guess I need to check that then. Although his disorder is extremely rare (250-400 cases ever dx), the literature suggests that obstruction/apnea is not usually an issue (and it wasn't in the 1st sleep study, although there were a couple of minor episodes). He is missing the anterior nasal spine and most of the cartilage in his nose, so it is soft and sort of collapses when he lays down and breathes, making him a mouth breather at night. Hence their comparison to sleeping with a cold. The plastic surgeon did say that nose breathing would get more difficult as he got older and grew, as his nose and midface won't keep up growthwise, but I understood that we would notice it first during exercise/high activity that he would have to mouth breath to get enough air. We've pretty much got one shot for corrrective surgery, as it will stop any remaining growth, so the plan was to wait until he is at least a late teen, hopefully, unless breathing becomes an issue. As far as T & A removal, his tonsils are not enlarged. Even if his adenoids are, he has a high likelihood of VPI (submucal cleft). Taking his adenoids out has a high chance of causing resonance issues, and he already has some odd resonance due to the soft nose stuff. So if we don't have any surgical options at this point, and it is the breathing that is causing issues, what other ways do you treat obstruction in kiddos?

I need to work on swallowing pills with him. My other 2 learned quickly and easily with mini m&ms, but I haven't felt like Isaac is even ready to try with the swallowing disorder. Nothing is ever easy, right:) Then I will try the time release melatonin. I think it has a good chance of working, as the bedtime works well. Wish dosing him throughout the night worled better. I think the arousal to take it hindered that effect.

I have been thinking how I want to approach all this with the neuropsych. At this point, I want to address the sleep first, then attempt to tackle the behavior. Surely, no matter what other dx may/may not come, something would get better if he got restful sleep, right??? I know how cranky and difficult I feel being sleep desprived for 3 years, he has been that way for almost 4 years, his whole little life. And I know I could be a better support if I am not as exhausted. So I think I will still ask that they eval for the sleep and ADHD, but will ask that they focus on treating the sleep first. Once that seems under control, then we can approach the behavior through behavior mods and meds if still needed. Does that sound reasonable? And, as a sign of optimism, I looked up jr bunk beds, which I will need once I move all the boys into the same room. I finally started planning to transition him to the boys room! I realized, I hadn't even been considering it as he would disturb the other 2. Just considering it feels pretty hopeful:) like we will eventually find something that works.
 

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I am SO SO glad that you were told that removing adniods in a cleft child will cause VPI. We had no idea and then they removed my sosn adniods and he has horrible VPI also (Both my younger kids have submucus clefts with my youngest also having Pierre Robin Sequence).

For obstructive apnea you can use a CPAP, you can use a nasalphayngeal airway (looks like a long trumpet, also called a nasal trumpet) and in worse case senarios they will do a trach.

I'm not familiar with your sons considtion, so I dont know if I am being much help. I used to moderate a Craniofacial board on ivliiage.

Does he have midface hypoplasia at all? B/c they do do a surgery to help with that condition and often that will help with the breathing issues.
 

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Discussion Starter · #13 ·
beenmum, I'm a SLP grad student (graduate in 6 weeks!!!), and my CF teacher passed on that nugget about adenoids and VPI:) She was adamant that they not be removed in kids with cleft issues unless it was an absolute last resort.

Isaac has Binder's syndrome, or maxillo-nasal hypoplasia. So yep, midface hypoplasia is an issue. So far, it's not too bad. He has an essentially flat profile, but it is not scooped in (yet). Since you are familiar with the sleep stuff, can I pick your brain some more? Does CPAP mask require a nasal bridge or structure to keep it on? He seriously has only a little button tip nose. He can't even wear sunglasses because they won't stay and I have to hold a nebulizer mask because it won't stay up. This article is more than you probably ever want to know about Binder's, but it has some pictures that give you an idea of what I am talking about. Add to it, my little guy is Korean, so his nose is even flatter. Instead of being firm when you press the tip, it is soft like the bottom of your earlobe. I will have to look up the trumpet thing, I don't think I know what it is. Also, I think it was you that mentioned a time release melatonin that you can take the sprinkles out of a capsule? Can you tell me more about this. The bedtime melatonin works so well for him that I would love to give time-release a try...Thanks again!
 

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Thank you for that link. I hadnt heard of this before and I am glad you menationed it.

My DD has midface hypoplasia also, altho she has more nasal structure. Well as much as you can have with a cleft.

The CPAP machiene isnt dependant on a nasal bridge to keep it on. They use it alot for Craniokids with facial malformations. It is strapped behind the head and held in place that way. The mask isnt dependant on any physical areas to hold it in place.

We also adapted our Neb machiene to keep the mask on her little nose. Same with her glasses. They hook right around the back of her ears. My Optho always jokes that she has no nose to sit them on. She has no nasal bridge, just a nose.



Has he been a candidate for LeFort III Advancement ? Which is bringing the midface foreward. I dont know if he would even need this type of treatment, but it is very underrecognized as a treatment option. Most people have never heard of it.

The capsules are great. You just open them up and sprinkle them over yogurt or pudding. I dont know if mine are sold internaltionally, but I will check at the store today and see if they are. If not maybe they know a brand that is sold on a large scale, not just locally.

The nasal trumpy is used with Pierre Robin kids alot. It may be helpful for your son if his nasal passages are not occulded. He doesnt have coanal atresia does he? That woudl limit the trumpet to only one nostral, and that can cause a bit of widening on that nostral.

http://www.healthsystem.virginia.edu/Internet/Anesthesiology-Elective/airway/equipment.cfm

Hope this helps a bit.

But I would really look into more frequent sleep studies. In 6 months our DD went from 0 mixed hypopneas to 12 mixed hypopneas an hour. With desats to 80% nadir.
 

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Discussion Starter · #15 ·
Hey, sorry I disappeared--it was my last week of my practicum and I had a final paperwork push to get it all done (2 evals, 3 reevals and 3 discharges and their reports to write in addition to my regular caseload LOL)! I am going to ask the neuropsych to recommend another sleep study unless we see the ped again first for one of the boys. I feel like I need to talk to him about it if I ask for it rather than just a phone call request, and I don't want to make another appt if I don't have to timewise. I have comps in less than a month, and I really need to do well and graduate. Still waiting on the neuropsych to call me back, I will be calling tomorrow to follow up.

As far as the LaForte III, that is the main repair for this disorde:). Plus rhinoplasty and orthodontics. I'm not so excited that I knew what our plastic surgeon was talking about, as I think I can visualize it a little too well! But he has actually helped with this surgery for a child that has Binder's, which is pretty rare in and of it self, and the before/after pictures were amazing. But he said it can't be done until he is a teenager unless breathing becomes a concern. So far, although his profile is pretty flat, his growth is pretty good. Apparently, for kid's with Binders the amount of dysplasia is pretty variable, and sometimes limited to just the nasal area and between the top eye teeth. Just guessing, but I don't think he is going to have too much cheeck bone involvement, as he actually has some curve to his profile there.

Ds doesn't have an official dx of choanal atresia, but looking at his CT, I am pretty sure I see some and his ped agrees with me (didn't dx becaus the specialist didn't and it's not his area). Plus, the nasal passages atrophy with disuse and there is often extra tissue. So I don't think, having looked at the trumpet, that would be a good choice for him. But something to keep in mind if needed. It is good to know the CPAP mask would work, although fighting him to wear it would be an issue. Funny aside, when we did the fist sleep study, I told the tech that he was a mouth breather only. But he kept coming to check the things around his nose, because they weren't registering. At one point he actually stuck his finger under his nose, and said "he really doesn't breath through his nose, does he?" You can completely occlude ds's nose, and he will not wake up LOL

So far this week, he has had a better week. By that, he is only up 4-5 times most nights, no night terrors or temper tantrums, and no all-night crying. Better than it could be LOL
 

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I am so sorry I forgot to get back to you about the melatonin.

ITs Innovite and it isnt just a local product. You can order it on-line even.

http://www.nationalnutrition.ca/detail.aspx?ID=3916

We use it with Natural Factors sublingual 5 mg.

I am glad he is having a better week. Sorry the trumpet thing wasnt helpful. I hope they can do something...aside from the surgery.

We are going to Sick Kids this week to look at DD's cleft issues and dental issues. I honestly am at a loss about what they can do right now that doesnt involve surgery (whihc they dont want to do b/c of her airway issues).

Ugh.
 

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This is all really out of my league, and my thought I'm sure you have considered, but, in the hopes that maybe one teeny tiny thing will help a teeny tiny bit, I'll post.

My dd1 woke up lots and lots and lots at night. When she got big enough to talk, she insisted she was thirsty. Giving her a sippy cup to take to bed cut out the night nursing rapidly. So, I know there's a ton more going on, but since you mentioned he's a mouth breather, maybe this would help a tiny bit?
 

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Discussion Starter · #18 ·
Thank you all again. Beenmum, ordering melatonin caps tonight:) Just1more, I appreciate the thought. My other two sleep with water sports bottles by their bed, so I can believe that will be helpful down the road. Thanks:)

We had the neuropsych appt today, and I think it went really well. here is what I posted on the adoption board:

So we had the appt today, and I really like her. Isaac did fantastic with her, boisterous but well behaved. But enough to see that he is hyper LOL Was complimented on how well we have done, and on some parentimg moments in the office. Took me seriously! and started problem solving. Feels like I'm on the right track with the sleep being the root of the behavior and where we need to start first. She needs to do some consults on her own (ped, attachment therapists, play therapists), but is thinking attachment/grieving issues were the root of the sleep problems initially, compounded by the physical issues (making up calories at night, breathing issues) and are now an ingrained pattern nutritionally (still used to eating a large portion of calories and liquids at night) and emotionally (reference his preference for routine and rigid schedule for security). Referenced different levels of development emotionally/attachment wise, feeding skills, and chronological age, and that while stubbornness and arbitrary-ness is developmentally appropriate, he is on the extreme end and we want to take away his comfort mechanism and sleep strategy and change his routine all in one at a really difficult time developmentally. She wants me to order and start using the sustained released melatonin, and consider giving him extra daytime doses of the regular kind for extra naps on the weekend and see what it does to his behavior with having more rest. Whatever we do, she feels we need to go very slowly, and bump up security and attachment stuff when we do it, and that what we do "has to fit with out family". We will meet again after my comps (no time to implement changes that could backfire before then LOL) So a little slower than what I would like--I want magic pills and answers LOL--but at least we have direction and validation.

Beenmum, I mentioned the sleep study to her, and think that will be one of the things in the pedi consult. I will mention it to him again when we go next time. We are there pretty often between the 3 boys LOL I can't do one til after comps anyway, as I don't get any sleep there. But her analysis made sense, and is in line with what I have been "feeling" over the years, that it is primarily emotionally based.
 

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Your son sounds a lot like mine. 3.5 yo DS was diagnosed with Sensory Processing Disorder. I'm tired and don't have time to go into all the similarities before I fall asleep. But I highly recommend reading Sensational Kids by Lucy Jane ****** and visiting The Sensory Processing Disorder Resource Center.

What's working for us: preschool. I was sad to send my ds off to preschool every day for 3 hours, but a regular routine was critical for him and I was struggling to provide that at home. He has his school routine down, eats lunch with me at 12:00, naps from 12:30-2. Then the rest of the afternoon follows a pattern until 6pm when we eat dinner. Bed at 8pm. Now that we've been "regular" for a few weeks, ds love the routine and life is easier. We also decided to medicate with a super low dose of clonidine. Different kid at the first dose. No negative side effects. We use a herbal sleep aid by Natural Factor. It's a chewable tablet. It helps him fall asleep after about 30 minutes.

I didn't have time to read through all the replies, but I didn't see this suggestion when skimming through. Thought I'd just throw it out there.

Lysa
 
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