SPD or PDD-NOS or something else altogether in my 19 mo?

[doulawoman]

Hi everyone,

I've been writing about my daughter on and off for some time now...we;ve bounced around the forums, and some others too, and been to numerous health professionals. I think her issues are mild compared to some, however, they are inetrfering in everyday life to the point that I am in tears most days out of exasperation and frustration. I don't even know if I have the energy to go into great detail anymore...we are hopefully getting her evaluated and getting an OT and sensory help at the end of it... but i think it'd be helpful to have an idea what direction I need to *push* in. I know she is quite young... Ifeel quite certaint there is a snesory issue. Been reading the checklist from the Outof Sync child and am getting the book.

here is some random info that is by no means complete that might help you mroe experienced mamas help me look in the right directions

quirks:

-as a baby she could onyl be bounced to sleep on a yoga ball in the ergo for hours...we logged over 1000 hours by eight months old

-could not lay her down on her back while awake, nor her tummy

-diaper changes were a nightmare of wrestlign and stress, we often had to change ehr sitting or standing even at 6 weeks.

-she has always been a bit hyper-alert, was never "sleepy" ever.

-is very phsyically strong, even right after birth, holding head WAY up, standing early, crawled at 5 months, can carry heavy bags and rocks and stuff that most tots would find too heavy

- extremely noise sensitive. a fan is going in the room she sleeps constantly. We still whisper if we manage to get away from her in the evenings. She HATES the vaccuum and is very very upset by it, also blenders, toilets are ok at home now but not in public washrooms, any loud machine. She notices noises very easily and has a coping strategy of going "ha ha, noisy!" but you can tell it bothers her.

-hates the car, had to be turned around early, screams on even 5 min car trips, the only thing that helped was a portable dvd player and we are anti-media, waldorf oriented family!

-gags when she sees me brush my teeth, wash my face, or sometimes random stuff like washing her teddy bear y hand. Also been gagging when she sees me use the diaper sprayer to wash of her poop.

-throws up because she is so upset (only sometimes) when we rock her or try to put ehr to sleep CALMLY and don't leave her to cry. she vomited everywhere the other nigth because she was *so* upset.

-history of reflux which is actingup now from all her screaming

-can stop moving her legs when trying to sleep, she has slowed down abit oevrall though during play, where she used to be always in motion. She sometimes responds well to lots of pressure/massage on her legs to sleep but it has to be *just* right

-she has benefitted a lot from homeopathy and crainosacral. We've done extensive elim diets for both the sensory stuff and reflux and it didn't do much...like 6 months no wheat/dairy/hidden gluten/corn/sugar.

other:

-no developmental delay

-no social delays far as i can tell, been studying aspergers sites etc, as she does seem much like some of my friends with kids with aspergers in her sensitivity

The biggest issues are just feeling like I'm walking on eggshells, stress about the car, and SLEEP. and she's not growing out of it, only a few of the quirks. I am due with a baby boy in January and I am more worried she'll wake the baby up and not be ok with the needs of a newborn when she is *so* needy.

she used to nurse nearly non stop from seeming over stimulation and also to help with her reflux...

ask me any questions. her birth was quite traumatic and she was separated from me for a while, had spinal taps and all that jazz, some think this is important some don't.

I'm really frsutrated and exhuasted, an find myself leaving her screaming at times becase i've run out of ideas

she is 19 mo...oh wait i said that in the title.

[Kokolove]

Hi, doulawoman.  I understand how frustrating it can be to have a child who just won't go to sleep.  My son has autism, which includes sensory processing disorder.  He wouldn't go to sleep either, and it was driving us nuts.

After a year of sleepless nights, we now have him sleeping 12 hours per night.  Here is what we did:

1.  white noise machine

2.  full sippy cup of water in bed with him

3.  complete darkness in his room (blackout shades on the windows)

4.  weighted blanket

5.  1 mg of melatonin (supplement available at Trader Joe's or Walgreen's), 30 minutes before bed. 

6.  same bath/story/bed routine every single night

7.  we keep the room on the cool side, about 68 degrees.

I know it seems like a lot, but it was what it took to get him to sleep.  The melatonin has been AMAZING. Trader Joe's sells peppermint flavored chewables and 2 of them equals 1 mg.  He takes it right before getting in the tub, and by the time we are done with stories, he can barely keep his eyes open. 

His other behaviors improved dramatically after he started sleeping through the night. 

Hugs to you! 

[doulawoman]

thank you so much for this! We do some of these things alreayd, like white noise (well a fan which works well). I was considering melatonin but didn't know if she was too little or how much I should give. I will have to look into the weighted blanket, and the room is very dark. We just started a bottle of warmed almond milk last night...I think my milk supply being virtually gone at 6.5 months pregnant has been setting her off, she *loved* the bottle and it kept her mroe relaxed...she still squirmed and cried and was silly depsite exhaustion for 3 hours!

ia slo agree her other *stuff* is much better when she is rested. Today she was freaking out continually because something about her diaper was bothering her, despite changes and changignt ypes of diapers etc., her pants were *touching* her heel/foot, even when we switched pants, she suddenly couldn't *stand* her slippers that she usually toerlates well...usually it's more sound stuff. She saw me put a wet diaper of hers in the garbage and gagged...all these produce huge metldowns, and are only minor compared to other things, sigh...it's like one thing after another. The worst thing is, I think the tactile stuff is getting worse almost by the day?

[LynnS6]

Given all that you listed, I'd have an evaluation by an Occupational Therapist who specializes in sensory issues, and a developmental pediatrician. Nothing you write screams PPD-NOS to me, but she's pretty young, and I think only a developmental pediatrician will be able to tell.

I recommend both, because it's clear that she's got some major sensory issues that are interfering with daily life (like sleep!), and no matter her final diagnosis, OT could do her some good. The developmental pediatrician often takes a long time to get in to see, so even if you schedule something now, it could be 6 weeks to 6 months before you can be seen, depending on where you live.

It is possible to have a kid with SPD, and without accompanying other disorders. It's true that SPD is often co-morbid (hate that term) with ADHD and/or ASD disorders, but not always. Our son has SPD, and while his social skills were a little slow to develop, I think it was a combination of sensory issues keeping him from picking up on cues, his natural introverted nature, and a bit of anxiety. He's 10 now and his social skills have really come a long way. He's actually doing things to make kids laugh at school! (My goal, jokingly, last year with his teacher was to have him get in trouble for talking too much in class. She looked at me, laughed and said "not this year". But I have to say, if he gets in trouble for talking too much this year, I'll be secretly pleased (and probably drive the school nuts because of it!))

Have you looked at the SPD books? My favorites are:

Sensational Kids (a bit more research based, but more detailed, both in describing and suggesting activities,I think)

The Out of Sync Child (a good intro)

Raising a Sensational Kid (one of the few books that talks about children as young as your daughter)

The Out of Sync Child has fun (good idea for things to do to build a sensory diet for your child).

I wouldn't disregard the birth trauma either -- SPD is pretty common in kids with early medical interventions. In our case, that wasn't the cause -- I can see the sensory issues going back generations on dh's family, and popping up here and there in my family (my brother, maybe my dad).