Sacral dimple and neurological problems? - Mothering Forums

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#1 of 18 Old 12-20-2009, 01:19 PM - Thread Starter
 
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ok so maybe this has been covered before but I just now started coming to this forum and i'd love some thoughts from you all.

a little history: my daughter who is 5 has SPD pretty severely (though it waxes and wanes). her symptoms started early on with GERD and from there went into full blown screaming, never sleeping,and serious trouble nursing the older she got. by months she refused to be nursed at all and wouldn't let anyone or anything touch her face or she would scream for hours (literally!) etc... by 15 months she would ran fast and scream loud and laugh hard, but she spent most of her time screaming and have a communication level at a 6-9 month old (couldn't transfer from hand to hand, little eye contact, no words, no signs, etc....).after much OT and a lot of dietary changes she is a lot better at 5. in a lot of ways is completely average as far as motor skills. she still have very in turned feet and trips constantly (she has more scars than I can count from falling while running!) she is celiac and has a host of other food intolerances. sleeping problems etc...she has other issues too but those are the biggies.

my 8 month old son was born with a sacral dimple and I didn't think much of it at all. he soon started showing the same symptoms as my daughter. severe reflux, constant fussiness, the whole thing. except right away I put myself on the Elimination Diet thinking it would help to find out his allergy trigger and stay away from it. it did for a while, but now it seems it help some... but not enough.(I only have a handful of foods I can eat!) the older he gets the worse his symptoms get (just like my daughter). he doesn't scream all day unless I eat an offending food, and his communication is MUCH better than her (but i also know a lot more about this stuff so we use a lot of the therapies we used for my daughter right from the get go). He nurses pretty well, but i have no introduced ANY solids into his diet b/c I'm terrified. when we gave solids to my daughter she quickly got much worse and we ended up having to give her formula b/c my milk dried since she wouldn't nurse. the things got really bad! knowing that I've worked hard to keep the relationship with my baby boy going strong and Im terrified to introduce solids b/c he seems allergic to everything! I don't even know what to give him so he's sustained on breastmilk. anyhow he never sleep well. he wakes every 30-90 mins crying, and he doesn't nap, he had horrible reflux and he's sensory seeking like my daughter. he was siting at 5 months, crawling at 5.5 months, standing at 6.5 months and it trying to walk now at 8 months. (same as my daughter)

I'm really worried about him. I don't think an OT would see what I see only b/c I feel we do a good job of doing therapies and diet to keep things at a reasonable calm (even though we never sleep around here!). he's extremely high need.

recently I heard that a sacral dimple (even though it's not terribly deep looking) can be connected to neurological problems and i'm curious if anyone knows anything about that. I'm not even sure who to ask! I know the doctor would poo-poo my question anyhow. but it's a concern to me.

TIA for any thoughts or wisdom you all could give me!

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#2 of 18 Old 12-20-2009, 02:42 PM
 
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My sons all have sacral dimples. From my understanding, if it is midline and shallow enough that you can see the bottom of it, it's less worrisome. If it is not midline, if there's a tuft of hair, discoloration, or it's too deep to see the bottom, then it's worth testing. I've heard of ultrasounds, xrays, and MRIs. I believe only an MRI is truly diagnostic, an xray can only show other signs but can't definitively rule anything out or diagnose anything.

My first son's is very deep, he had an xray at a year old that showed no signs of problems, and because he has no other signs of neurological issues, we never pursued more testing.

My second son's isn't as deep, we can see the bottom of it. He has had a brain MRI (for dysphagia) but never any testing specifically of his spinal cord.

My third son's is also not deep, we can see the bottom, and we haven't done any testing.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#3 of 18 Old 12-20-2009, 02:57 PM - Thread Starter
 
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well it's shllow so I definately wouldn't worry at all if he wasn't having the symptoms he is having. hmmm... anyhow, thanks for responding!

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#4 of 18 Old 12-20-2009, 03:07 PM
 
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katwrangler knows so much more about this, she'll respond i'm sure. typically the neurological signs caused by a sacral dimple are more dealing with motor skills, bowel/bladder control, that sort of thing. i don't think i've ever read them connected to sensory issues, intolerances, or high-needs type of behaviors. but it seems logical enough i suppose...

have you tried too google "sacral dimple and SPD" or something like that?

you've piqued my curiousity now, because oldest (the one with the deep dimple) has some sensory issues and is definitely "spirited". i never connected the two...

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#5 of 18 Old 12-20-2009, 03:50 PM
 
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KatWrangler is an expert in this area and she'll let you know whether she would do MRI. Honestly, based on reading here, if my son had a sacral dimple I'd do an MRI to make sure there isn't tethering symptoms or not. You want to know before you see symptoms. In my understanding those would be symptoms different than what you're seeing however it's still something you'd want to know/serious.

On the other kids, though, I"m wondering what tests were done? Treatments? Have they seen a pediatric gastro? Any reflux meds? I'm thinking you're likely dealing with an underlying issue tying the GI, reflux, food intolerances, etc. together in both kids. For example http://www.apfed.org/egid.htm
My son has a metabolic condition that caused severe reflux and developmental issues (he also has low tone though and it sounds like that isn't an issue with yours).

http://www.mothering.com/discussions...d.php?t=734501 That's my link about metabolics.

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#6 of 18 Old 12-20-2009, 08:06 PM - Thread Starter
 
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yeah my daughter has had every testing known to man. i finally said enough is enough and we just have her on a strict diet and treat her other spd symptoms accordingly.

i'm not a fan of western med at all since how much crap she went through and the only answer ever given to me was..."well i guess you're just going to have to get used tothe idea that we don't know what's wrong with her and she's just a fussy baby" not helpful!

i have not taken my son to any western doctors, only holistic ones... but we never thought anything about the dimple until now.

i did google SPD and SD but nothing much came up besides some people saying theirs kids had both though nobody mentioned them being connected. I know his symptoms may be different but SPD is certainly nuerological, so I'm curious if there actually is a connection there. my last daughter regresed in motor skills after about 6-9 months of age. she walked and ran but she had turned in feet, couldn't stand straight, leaned to the side etc... i hate to wait to see if he's gonna regress yk?

I'm cerrtainly not trying to make a connection where there isn't one... I'm just curious about it. I'd hate to think there was something we could do now to help him in the future and us not do it. I still feel like with my daughter nobody really knows a lot of things. and ith my boy nobody can give me an answert o why everything makes him puke nf fuss and when he'll be able to have any type of food. everyone keeps telling me just to try it... but I admit, I'm scared. my daughter regressed so quickly after introducing solids and I never could get her back. I have no iea if it was coincidence, but she just sorta left us. she never smiled or communicated for the better part of 2.5 yrs afterwards. she even gave up eating anything but bottles b/c her reflux hurt so badly.

anyhow... I'm babbling. I'm just incredibly frustrated and sick of being poo-pooed. seriously? if an adult puked all day and couldn't sleep at night and was fussing all day I bet they'd work hard ot come up with an answer. when it's a baby they just say "oh he's just colicy" as if it's ok that his totall miserable.

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#7 of 18 Old 12-20-2009, 10:36 PM
 
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She regressed in motor skills?
Did you read my link about metabolics? That's a huge flag and a time period when kids often do have regressions with metabolics. I am positive she didn't have a full metabolic work up as that doesn't happen until you see metabolics specialists and sometimes even then it's not full.
Did she have a scope for EE?

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#8 of 18 Old 12-20-2009, 10:40 PM
 
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Sorry you are having such a hard time . I hope that katwrangler stops by with some more info for you, but just wanted to say that according to our urologist, the neurological issues associated with a sacral dimple would usually be bladder, bowel and lower limb related. DD had an MRI at 10 months to rule out spinal abnormalities because she had a sacral dimple along with bladder issues.

I hope you are able to find some answers soon!
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#9 of 18 Old 12-21-2009, 03:24 AM - Thread Starter
 
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She regressed in motor skills?
Did you read my link about metabolics? That's a huge flag and a time period when kids often do have regressions with metabolics. I am positive she didn't have a full metabolic work up as that doesn't happen until you see metabolics specialists and sometimes even then it's not full.
Did she have a scope for EE?
nope no metabolic workup.

would these kids regress and move fwd... kinda back and forth? I need ot read more about it. I can't believe through all the various testing and specialists (and holistic docs anc chiros) nobody would have mentioned this? I meanI spent like every night on the computer trying to help her. I hunted down an OT and go her evaled as SPD. things have been fine for about 2 yrs (typical SPD stuff but nothing big) and suddenly she has what's best discribed as restless leg syndrome. she is itchy and wiggly to the point of tears - worse at rest or relaxing. and for a couple of weeks she was walking into walls/door/tripping over her feet again. like she just lost her ability to balance. people who aren't around her but once in a while don't see it - b/c she is sweet and cute... but she is a LOT of work. getting her to sleep, eat, walk straight... you name it. and she has trouble swallowing meat and anything raw... etc.

my husband and i started worrying about her again the last couple of weeks. my have MS in the family so I looked into that but it doesn't seem a good fit for her... so now I'm looking here.

something in me says this is more than "SPD" But I can't tell if I'm overreacting and furthermore I haven't a clue where to turn. we don't have any extra income, insurance and don't qualify for state help...

thanks for all our help, mamas. I SO appreciate it!! (it's just good for me to not feel like I'm making it all up - my husband and mom totally see it, but nobody else does. then again we don't really go anywher b/c it's stressful!)

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#10 of 18 Old 12-21-2009, 03:26 AM - Thread Starter
 
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Sorry you are having such a hard time . I hope that katwrangler stops by with some more info for you, but just wanted to say that according to our urologist, the neurological issues associated with a sacral dimple would usually be bladder, bowel and lower limb related. DD had an MRI at 10 months to rule out spinal abnormalities because she had a sacral dimple along with bladder issues.

I hope you are able to find some answers soon!
would that include things like in turned feet, balance problems and restless leg-like itching/twitching/hurting? or would it be something else?
(sorry I'm in totally new territory here! I've been so at peace with the SPD diagnosis (which I know the ins and outs of). it's just been recently I've been reconsidering if there was more...)

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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#11 of 18 Old 12-21-2009, 03:27 AM - Thread Starter
 
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She regressed in motor skills?
Did you read my link about metabolics? That's a huge flag and a time period when kids often do have regressions with metabolics. I am positive she didn't have a full metabolic work up as that doesn't happen until you see metabolics specialists and sometimes even then it's not full.
Did she have a scope for EE?
sorry... is EE the thing you linked too? or something else? (I will go back and re-read it)

thanks again

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#12 of 18 Old 12-21-2009, 03:45 AM - Thread Starter
 
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ok sorry... I didn't see the link to the mothering thread about metabolic disorders (the kids were around when Iw as readingso I dnd't catch it the firts time! that explains why I was unclear on some stuff...)

ok wow. just WOW she has a lot of those issues! oh my gosh. I just an astounded.

she has intermittenly had serousl hyperventilation problems, shakey/itchy/hurting legs, off and on boust of tired legs and arms, she is HYPER, but she often lask enduring strength. she can bounce off the walls all day but has trouble with walking or doing long term tasks b/c of fatigure in her legs (like she att 5 will still ask for a stroller or to be carried.) she has what we assumed to be celiac (as i seem to have - it never showed on me tests but i was SO sick on gluten and so much better off of gluten the dr finally just said les call it celiac and leave it at that.)

as fir me, my daughter is so much like me. I have trouble with standing, balance, and any enduring task - like laundry folding or cooking. I have very weak back and leg muscles and always has since I was a child... my legs and back always ached as a child and no as an adult. so I understand a lot of what she complains about - i just don't know how to fix it. she is VERY tall for her age though.

ok.... so now what? .... I gotta find some time to research this. any helpful webites to better explain it?

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#13 of 18 Old 12-21-2009, 12:15 PM
 
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would that include things like in turned feet, balance problems and restless leg-like itching/twitching/hurting? or would it be something else?
(sorry I'm in totally new territory here! I've been so at peace with the SPD diagnosis (which I know the ins and outs of). it's just been recently I've been reconsidering if there was more...)
Yes. It may have nothing at all to do with the sacral dimple (most are not related to neurological issues) but I might personally be concerned about turned in feet, pain in the legs and balance issues. DD was a toe walker for a while, which was another possible marker for our doctors at the time. I think that I would want to get it checked out if she were showing these symptoms.


eta - Earlier I wrote dd had her MRI at 10 months, sorry it was 15 months, she was already walking well.
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#14 of 18 Old 12-21-2009, 04:37 PM - Thread Starter
 
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i've asked her ped, chiro and the other specialist about the feet and they acted like there was nothing i could do... she would grow out of it but this year it's gotten much worse I think. sometimes i feel like I don't know where to go. and really? I don't have the money even though I wish I did. (I mean I REALLY don't have the money., not just bad priorities or something like that)

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#15 of 18 Old 12-22-2009, 12:54 AM
 
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JUst wanted to chime in that I have 3 with sacrial dimples. Two have DX SPD and the third has major red flags and is being treated/watched by EI.

Sarah
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#16 of 18 Old 12-22-2009, 12:55 AM - Thread Starter
 
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JUst wanted to chime in that I have 3 with sacrial dimples. Two have DX SPD and the third has major red flags and is being treated/watched by EI.

Sarah
very interesting. are they shallow or deep pits/dimples?

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#17 of 18 Old 12-22-2009, 01:17 AM
 
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All are on the shallow end I would think. My 4yo had an US on the spine and it came out fine. My 2yo has some odd markings around hers (think alien abduction markings lol) her tests came out fine too for the spine. MY 15mo hers is very shallow and we have not had it US though as far as development she causes the most concern. Her speech is months behind as the other two were ahead in that area. She seems to be sensory seeking and a bit hyper like my 4yo. I see repetative finger/hand movements and a definate lack of eye contact. She doesn't play with toys much.She is being closely watched and only time will tell if she is affected with SPD or ASD.
Reading the mito stuff now and hmmmmm.... I think I need to read more. The older two fit some of that- well alot of that. What rings a bell is 4yo dd had reflux, lack of muscle endurence and she has a dx of ASD/pos asperger's yet shes very social at times.
2yo dd has some concerns for seizures, bowels problems, loss of some skill , neuro low tone amongst some other symptoms.

Hmmmm.... must read more.

Sarah
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#18 of 18 Old 12-22-2009, 03:10 AM - Thread Starter
 
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my son's dimple is almost unnoticable now that his has big bubble baby buttcheeks (lol that was a mouth full!) so it's not anything I would have thought to concern myself over if I hadn't stumbled across some info about it.

my daughter is extremely social and i know a lot of kids with SPD aren't, but she LOVES people. she sometimes hates going places b/c of the over stimulation of stuff like lights, the feel of clothing on her skin, cold/hot changes, long walking and that sort of thing that physically/emotionally exhaust her... but she LOVES interacting with people and being cheesy and goofy. she's a total people person.

I've spent time pouring over this every chance I get and I am just wowed. I would be shocked if my daughter (and baby boy) don't have something mitochondrial like this going on. it just describes them so well.... right down to allergy and food intolerances. my boy is BF and I'm on the elimination diet and it seems I can eat LESS than I used to be able to eat and he starts having reactions to things I've always had. I'm terrified to try him on solids! as it is I can only eat like 10 things. and he is never sleeping at night anymore. at 8 months old he rarely has a 2hr stretch anymore at night.

transtichel.gifMom of three - (2.5 yrs, 7yrs, and 11yrs). Birthing Doula, editor, and wife to my soulmate. I've had a c/s, hospital VBAC, UC and not yet decided what I'll do about this next little one

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