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Will this ever get better? - bbgrl - 12-05-2011
Our now 14 month old was diagnosed with SPD a few months back, but we've been coping with her exhibiting symptoms since she was a month and a half old. And of course we've been fighting with her doctors since about that same age. Most of symptoms relate to sleep and movement. Since she was just a few weeks old she couldn't sleep without very specific, constant movement, which unfortunately automated swings could not provide. Initially we just had to hold/rock her for naps with a lot of time being spent trying to get her to sleep and though soothing at night sometimes took an hour or so but she would sleep for 4-5 hours at time and getting her back to sleep wasn't as labor intensive. Then in April of this year, the daytime sleep issues progressed to the night as well. Most of the time it takes between 1-2 hrs to get her into a deep enough sleep to attempt laying her down. On average she stays down between 20-40min with another 40-60min of soothing between each wake up. This results in about 3-4hrs of fragmented sleep per night on her own; the rest is on us. My husband and I usually take it in two hour shifts which give each of us between 3-5hrs of sleep a night. To say we’re exhausted is the understatement of the year.
We just recently came back from a month of intensive therapy at the STAR Center in Denver and though she showed amazing improvement in language development and motor skills, her sleep still hasn't improved. We do think that she may have some food sensitivities exacerbating her SPD that we are working through with a specialist. Most of our family doesn't get the SPD thing and think it's all behavioral and that we are coddling her, so support is scarce. Has anyone gone through similar sleep issues? Did it get better with therapy or age?
RE: Will this ever get better? - AngelaVA - 12-05-2011
Big giant hugs to you, i have been there is it SO hard. Sleep and potty stuff are so hard with these kids and "experts" like OT are so reluctant to try to help with them (maybe they just have no idea either). Even though it is miserable your daughter is on the right track in a way, she is neurologically very disorganized and lots of touch and close parental presence is what tends to organize babies neuro system - it's just that she needs so much more and she still only has two parents! What would happen if you let her sleep next to you to begin with so that she could be reassured by your touch before she fully awakened and became upset and anxious? (I know this is a shift in paradigm but co-sleeping is very popular among certain groups and a common need for our special needs kiddos) Would she let you wear her in an Ergo or Mei Tai carrier for a few hours during different parts of the day while walking, shopping, doing housework ect so she can have that kangaroo care that she is seeming to want during the day too? What else does she find calming?
Absolutely explore the food sensitivities too. Casein free gluten free is very popular and there is a newer one called GAPS that is very focused on healing so you won't always have to be on a special diet. We are currently transitioning from CFGF to GAPS and so far I've been very impressed.
RE: Will this ever get better? - bbgrl - 12-05-2011
Thanks for the input. We did actually try co-sleeping, but she truely can't fall asleep without movement and she is so sensative that even I got her to sleep and laid her down, I couldn't get into bed without waking her up. Right now her diet is super restricted, but I'll defintely look into the GAPS.
RE: Will this ever get better? - LynnNBoys - 12-06-2011
My older son was never a good sleeper. He needed parental contact to fall asleep and stay asleep. He never took a pacifier, I was his pacifier (weaned him at 12 months). I remember the no-sleep part. At one point, I almost fell asleep behind the wheel because I was so tired. That really scared me. Hubby convinced me to cry-it-out at 11 months and I hated it. I cried too. It worked for a month or two but then we were back to bad sleeper. In hindsight, I'm sure he was showing signs of anxiety even as a baby (he was diagnosed with SPD and anxiety at 6 years old).
As I mention in the other sleep post, I read Healthy Sleep Habits, Happy Child by Dr. Weissbluth and got several good things from it. I do recommend reading it even though I wouldn't follow it exactly. But all the stuff about set bedtimes and the importance of children getting enough sleep, I agree with wholeheartedly!
When he was 2-3 years old, I had to rock and sing him to sleep. It still took a long time for him to fall asleep, but once he was asleep, he'd stay asleep for the most part (unless he was sick). Then around 4 years old we tried stories on CDs. That wasn't too bad. But he would listen through the whole thing 2-3 times. Then we tried a CD with ocean waves and that was better.
He went through cycles of good sleeping, bad sleeping, good sleeping, bad sleeping... The worst was around 1st grade when it took 2-3 hours a night for him to fall asleep and that was with my husband and I taking turns sitting in his room until he fell asleep because his anxiety was so bad. But luckily that was the turning point for him. He started OT in school and privately. I learned to do joint compressions. He started going to individual therapy and social skills group. By 8, it took him an hour. By 9, it took him 30 minutes. My older is 10 years old now. It takes him about 15-20 minutes to fall asleep, but we still sit in the room because otherwise his anxiety peaks and he calls to us every 5 minutes. It's hard to tell if he got better with the therapies or with age. Probably both.
Things to try with your daughter--joint compressions, white noise CD or white noise machine or fan, heavy blanket (my younger loves his), consistent bedtime routine.
RE: Will this ever get better? - beck7422 - 12-10-2011
Is your child too young for a weighted blanket? That might comfort her.
Diet wise, if the foods she is eating is causing acid to come back up her throat that could cause sleeping problems.
RE: Will this ever get better? - bbgrl - 12-13-2011
Per the OT's suggesttion, we did try a weighted blanket, but it actually seemed to keep her up more as she is so restless - rolls around SO much, that it seemed to get in her way and wake her up.
As to acid reflux, we did an upper and lower endoscopy which ruled out reflux,but showe lower inflamtion consitent with allergy, this is after having tried all three perscription meds that she had significant reactions to.
We're currently six days in to a month long process of trying to transition her over to a different elemental formula called neocate jr. She's on neocate infant right now but apparently that has an oil that is derived from soy that the allergist is concerned about. Her diaper rash looks like it's getting worse which is one of her tell-tale allergy signs so I don't think it's going to work.
Her developmental ped had a IGG blood test done which shows sensativities as opposed to just IGE mediate allergies. Almost every food she was currently eating, she was also reacting to. She's now back down to just four solid food items, three of which she is testing postive for. Her feeding team didn't want to take her down to just one items as they felt the developemental advantage of having more variety was greater than the possible reactions she was having considering that she is significantly delayed in speech and given the theory that the soy based oil could be driving the overall sensativities. However given her seeming negative reaction to the new formula I don't think we're going to get that far. The crazy thing is, to look at her you'd never know, she looks quite the healthy cherub. It's taken working with doctors that are really familiar with neorolgical issues like SPD to realize that just because she gains weight doesn't mean there isn't something seriously wrong going on in her immune/digestive system.
I think this has been the most befuddling thing for me as a parent. The complexities and scope of a neorological disorder are so unlike other diseases and ailments in that you can't expect that symptom + treatment = problem solved. I think about this constantly - how can we solve this, what haven't we tried, what have we tried that was maybe to close to other things we tried and maybe wasn't a true result that we should try again. Still very little has changed despite our efforts and I can't help but wonder, will I be able to out last this? We were assured that it was colic and wouldn't last past 4 months, then it was reflux which shouldn't go past 7-9, then it was "it reallly get's better when they walk," and now I think comming to terms with reality in meeting with doctors who understand this disorder, it may get better but it may take a while and thinking about that just make me tired and I'm already tired.
This probably sounds silly, but right now my greatest hope is that someday Julia and I will be able to snuggle to sleep together, lying still in bed. If that doesn't happen I hope some genius will invent a swing that holds both a sleeping child and a sleeping parent.
Sorry this has turned into a bit a diary entry... I'd still love anymore suggestions.
RE: Will this ever get better? - Marci - 12-20-2011
(12-13-2011, 01:38 AM)bbgrl Wrote: I think this has been the most befuddling thing for me as a parent. The complexities and scope of a neorological disorder are so unlike other diseases and ailments in that you can't expect that symptom + treatment = problem solved. I think about this constantly - how can we solve this, what haven't we tried, what have we tried that was maybe to close to other things we tried and maybe wasn't a true result that we should try again. Still very little has changed despite our efforts and I can't help but wonder, will I be able to out last this? We were assured that it was colic and wouldn't last past 4 months, then it was reflux which shouldn't go past 7-9, then it was "it reallly get's better when they walk," and now I think comming to terms with reality in meeting with doctors who understand this disorder, it may get better but it may take a while and thinking about that just make me tired and I'm already tired.I think I spent half my son's first year in this old rocking lounge chair that I have. I could put my feet on the ottoman, balance him on my chest and nap while keeping up a gentle bouncing motion. He has always been death on swings - he lasted less than 15 seconds in the infant swing before he began to SCREAM in abject terror. He was only a couple months old then, and this wasn't crying, it was outright terror. So swinging didn't do it for him, but a gentle bounce worked for both of us. The first time he voluntarily got on a swing, he was 11 years old.
This probably sounds silly, but right now my greatest hope is that someday Julia and I will be able to snuggle to sleep together, lying still in bed. If that doesn't happen I hope some genius will invent a swing that holds both a sleeping child and a sleeping parent.
Sorry this has turned into a bit a diary entry... I'd still love anymore suggestions.
When I read your post, I thought of a chair that IKEA sells. I don't know there might be an IKEA store near you, but if so, see if you can "test sit" for a while in http://www.ikea.com/us/en/catalog/categories/series/07472/ (Poang chair or rocker). Their flexible frame allows for just a bit of motion, but it isn't a swinging motion. I found things like that were helpful.
BTW my son's OT tells me that an aversion to swinging is usually the first sign of vestibular/balance problems - if I had only known it then!
RE: Will this ever get better? - Valkyrie - 01-27-2012
Sorry to hear you are having such a difficult time. We had issues with my daughter needing to be rocked to be able to sleep. I found a unique infant car seat rocker at a garage sale. It didn't swing, but rocked. Similar to this... http://www.onestepahead.com/catalog/product.jsp?productId=537552
She used this until about 14 months old. Then I spent a few years sleeping with her in a recliner.
However... check this link out... for floating beds... QUOTE: "No other bed has this motion. It feels totally different from all other beds (including waterbeds, etc). This is the most simple, stable, predictable motion, and the only motion suitable for a bed, or for relaxing. Why? It is the only motion that tells your Vestibular System that you are safe to relax." http://www.floatingbed.com/features-benefits/better-sleep/
also indoor hammocks... http://www.digsdigs.com/cool-indoor-hammock-le-beanock/
Might be of some help. Fingers crossed. My best to you.