Does your SPD child still have loose joints?? - Mothering Forums
Special Needs Parenting > Does your SPD child still have loose joints??
MamaRBH's Avatar MamaRBH 08:21 PM 04-27-2010
My 6yo has SPD.

When she was originally diagnosed at 2yrs old, they told us that her joints ere loose because of SPD and something to due with a lack of brain messaging the body's joints to tighten in development. HOWEVER, they told us it would improve on it's own by the time she was 5. We have done joint compressions for 4yrs now. Finger joints to toe joints. No improvement.

She is 6 years and two months and is still like a floppy piece of spagetti. Her Pre-K teacher calls her "limber." She can move her legs and hips in bizarre ways typical people cannot. If I shake her arm, it feels like her wrists aren't attached to the arm. I think there is also a lack of muscle, but I'm not a professional...she may just be thin. When she writes or colors for short periods, she is fine. If it is a bigger coloring or writing project, she says her hands are tired and she "can't" do it anymore. She also complains that her legs are tired if we walk medium to long distances.

Am I off here....or is this abnormal? They told me it would have resolved itself by now, but it hasn't. I made a pediatrician appointment for early June because I'd like to have the report to take to our IEP meeting. I hope I am right in going to him for this....I hope I'm not making a bigger deal of it than it is....but I don't want her to miss out on activities and play with peers/family/etc. because of weakness, ya know?

rainbowmoon's Avatar rainbowmoon 08:31 PM 04-27-2010
No not at all. DS is 6 and though not formally diagnosed definitely has SPD. HE has seen a few OT's but just not formally diagnosed. He also is most like an Aspergers kid too..He started walking at 8.5 months and though very clumsy until about a year ago, has never had loose joints. He is super thin too but can walk miles without complaint. He loves physical activity (especially long rigorous hikes.) It really helps with his sensory issues.
sbgrace's Avatar sbgrace 12:36 AM 04-28-2010
I'd be thinking medical (and that causing the SPD or contributing to it) rather than the SPD causing what you see. Could be hypotonia or hyperflexibility or a combination. With the fatigue and all I suspect hypotonia or combination (in other words, it sounds like she's got low muscle tone and may have hyperflexibility too).

So this sounds medical to me. Hypotonia isn't uncommon, by the way or even something to worry about if she's healthy otherwise. I was hypotonic all my life and had no idea. My son on the other hand (we assume same metabolic condition in both of us) wasn't healthy. So in him the why mattered and in me it didn't. Did she meet her motor milestones on time (walking, jumping, rolling, etc.)? Is she healthy and on track developmentally? Some conditions that cause hyperflexibility also affect the skin. Is her skin different than normal in any way?
MamaRBH's Avatar MamaRBH 01:32 AM 04-28-2010

Wow, thank you! A lot to think about that I never would have considered.

She did meet her large motor skills w/in typical timeframes. Fine motor skills were a bit delayed, but not overly so. She is healthy, as far as we know. Her biggest issues are sensory struggles, social struggles, and emotional struggles. We are currently in the beginning stages of IEP planning/testing/etc. and afetr the first interview and evaluation they saw a definitie developmental delay and though previously the disanosis of autism was removed, they would like to re-visit her being w/in the spectrum.

What sort of skin conditions are related to hyperflexibility?? She has always had those bumpy, rough forearms. She has struggles with molluscum and has been treated multiple times by a dermatologist with no success (never developing an immunity to them) She has also had strange red spots appear on her chin often over the past few months. Her cheeks also have bumps on them that are even more pronounced when she is hot, tired, or upset...(which is often.)
2boyzmama's Avatar 2boyzmama 10:42 AM 04-28-2010
Well, I was going to ask about Apraxia or Dyspraxia, but now that I'm reading your last post about her skin issues, that is raising a flag in my brain...but darn it if I can't remember what it is!! I'm going to go google now...

In the up on Apraxia/Dyspraxia. Most people associate it with speech (how is her speech development?) but it is a neurological motor planning disorder, and can look like hypotonia and hyperflexibility.
2boyzmama's Avatar 2boyzmama 10:49 AM 04-28-2010
Oh, never mind, Ehlers-Danlos Syndrome is what was in my head. I can cause the joint laxity and elastic skin, but no mention of it causing any kind of skin rashes or SPD symptoms.

Marfan Syndrome is another that was in my brain, but again no mention of skin issues.
MamaRBH's Avatar MamaRBH 04:23 PM 04-28-2010
Speech was an issue when she was younger. When she was 2, she was silent. We started speech therapy then. By the time she was 4 she was speaking in a 2yr range...and now at 6, her speech is in normal range. (a-men for early intervention!)

I got word from the case manager today that they have an OT on their team who is going to evaluate DD. I am really happy about that because I was concerned these issues of weakness would not be looked at...that they would focus on academic issues.

I am still going to go ahead and see the pediatrician. I am going to research these disorders you have named and go to the doc with knowledge. I've written them down, passed them on to DH, and plan to look them up this evening after kid's are in bed.

Thank you so much for reaching out, Mama. I so truly appreciate it!
MamaRBH's Avatar MamaRBH 06:17 PM 04-28-2010
Did some research....hypotonia is looking like a major possibility.
sbgrace's Avatar sbgrace 12:04 AM 04-29-2010
Hypotonia is almost always metabolic (if it isn't chromosomes/genetics which you would see other physical differences there). However, you wouldn't put a child through a search for a metabolic cause without a reason. Because you mentioned she's sorta/sorta not spectrum I think you might want to read up on the link above. But mitochondrial (which is our issue here) always affects three body systems and you're only talking about two. It's still something to have on the radar. If you're seeing fatigue/low energy increasingly at some point that would be an action situation on this.

edited to add: hyperflexibility metabolic conditions have to do with skin stretchiness/thinness and such and not rashes. But that's why I asked if her skin was unusual.
gradstudentmommy's Avatar gradstudentmommy 10:37 PM 05-10-2010
It definitely sounds like it could be hypotonia. My daughter has it. It seems to run in both sides of the family (me and DH). In addition to low tone, she has hyper flexible joints. She met all of her gross motor milestones on time but was always clumsy. She had a slight fine motor delay. My daughter is perfectly healthy but she looks awkward when she runs and tires more easily than her peers.
MamaRBH's Avatar MamaRBH 11:13 PM 05-10-2010
Thank you so much for your reply!

DD is getting a 3 hour evaluation tomorrow both in her preschool and home settings. I spoke to the OT on the phone about the loose joints as well as a doctor of mine today and both said the same thing - it isn't necessarily related to the SPD. It is a neurological disorder that should be properly diagnosed. I'm not sure I would want any treatment if there even is any. I think my biggest concern at this point is that, like you mentioned above, Mama....she will struggle to keep up with her peers. A little on the playground and such would be okay with her, I'm sure. However, as she gets older and perhaps wants to participate in more althetic activity. OR....since she struggles so much when coloring now...what will happen in school when she can't complete an assignment because she's in pain???? I'm concerned about these things.
gradstudentmommy's Avatar gradstudentmommy 11:43 PM 05-10-2010
Hi mama,

I'm glad you're getting the evaluation. My DD had her hypotonia diagnosed by both a developmental pediatrician and a geneticist. Neither of them said it was neurological. They just said people are born with different levels of tone. I try not to worry too much because I see how amazingly my low tone nephew and sister in law are doing. My nephew is 10 and a star at lots of sports. My sister in law runs marathons and wins races (though she's still a little clumsy and falls down a lot). Interestingly, my DD also had SPD and so does my nephew but not my sister in law. I think as kids get older, they learn to manage/compensate. Actually our OT, whom we love, also has low tone!

Good luck. I know evaluations can be stressful.
maybemom05's Avatar maybemom05 12:41 AM 05-12-2010
My SPD kiddo has loose joints and low tone. His tone is improving dramatically with OT, not sure about the joints. FWIW, per his OT, I have low tone too :-)