Gifted Issues Discussion homepage Forums Twice Exceptional SPD and the DSM-5

I'm not sure if people here are aware of the efforts to get Sensory Processing Disorder as it's own diagnosis in the upcoming 2013 edition of the DSM-5. You can read about the efforts here:
http://www.spdfoundation.net/dsmv.html

The APA allowed public comment back in March and April and will apparently do so again in 2011. You can sign up to add your comments about SPD (and other proposed changes to the manual). The SPD Foundation will provide a link when the comments page on the APA website is open. Comments from parents and professionals can help to get SPD recognized as a separate disorder which would open doors for further research, treatment options and just increase awareness and understanding. You can join the effort, stay updated and add comments when the time comes!

Debbie, I just read a novel which had a lead character with SPD. It was really neat, except, the novel was disappointing. Other than the character having SPD.

hi doodlebug,
thanks for the update. I had heard a lot of changes were coming in the new DSM-5..and am pleased to see they get public feedback.. do you know anything about the status of the change to Autism and aspergers? i heard it was changing to one dx of "autism spectrum disorder". Do you know if that is still being debated or a done deal?
irene

Thanks. I signed up. I would like to have a chance to add my comments.

My 12 year old son finally got to see a neurologist for his migraines. The neurologist also confirmed that his hypotonia is most likely caused by the SPD because there was nothing in the blood test to indicate that the problem was muscle based.

The good news is that my son's dyspraxia seems to have almost disappeared in some ways. He auditioned and got the part of Mr. Mayor in Seussical. His timing and balance have improved to the point that I can't tell there was ever a problem. I think the dancing he has to do in musical theater helped with that. I watched a video of him dancing from several years ago and I could see that he was more "loosey-goosey" as a friend of mine called it. Since he hit puberty he looks stronger but the arches in his feet still collapse when he stands so he has pain from that and has to wear orthotics which don't help much. The scoliosis brace has been difficult for him. This is a kid who had trouble with clothing tags and had sock problems when he was younger. Now he has to wear a Boston brace underneath his clothes for all of his rehearsals so when the other kids are hot, he is even hotter and heat sometimes causes migraines. He has pain in his feet while at rehearsals and leg pain sometimes at night which keeps him from sleeping. When he can't sleep, I can't sleep. It just about killed me when he told me he was in pain almost every day. I think the doctors my son saw should have been able to help him, but as my son once said they just gave him cliche advice that might work for most people but didn't help him.

The neurologist, unlike the other doctors my son saw, actually listens to him. The neurologist is putting him on a medication to prevent the migraines because he has so many (barometric pressure changes and heat are his triggers) and he says it will help him with the pain at night so it should also help him sleep. It sounds like a wonder drug, but my son told the neurologist that he has learned to not get his hopes up because he has been to so many doctors that did not help him.

The neurologist even seemed interested in the article on sciencedaily.com that I printed out for him that talked about increasing evidence that the processing and perception of sensory stimuli is abnormal even outside of migraine attacks. I have always said that I get something like SPD hours before and then during migraines and I know this is true for my son also. The neuropsychologist tested my son last year when he was getting a migraine. When I questioned the results of the test and mentioned the headache she said she didn't think a headache would make any difference in the testing results, but I know from personal experience that it does. The test confirmed the verbal giftedness but I think his performance scores were lower than they would have been if he hadn't been tested all day (when he has endurance issues to begin with) and when he was getting a migraine. Even though we take headache medicine, it doesn't totally knock out the pain and it does affect our sensory processing, especially visual processing.

I'm really confused by this. How could sensory processing disorder cause hypotonia? I've never heard this claim made even by SPD experts. Does your son appear hypotonic based on a physical exam? Determining the origin of hyptonia is typically much more complex than a simple blood test. What blood test was run?

This is some of the info I found online.http://www.buzzle.com/articles/hypotonia-symptoms-causes-and-treatments.html

What causes Hypotonia?
Genetic disorders such as Krabbe disease, Werding-Hoffman disease, Aicardi syndrome, Down syndrome, Achondroplasia, canavan disease, Riley-Day syndrome (also known as Familial dysautonomia), Griscelli syndrome, Leigh disease, Marfan syndrome, Rett syndrome, Prader-Willi syndrome, Myotonic dystrophy, Menkes syndrome, centronuclear and myotubular myopathy, Dejerine sottas syndrome, Septo-optic dysplasia, Tay-Sachs disease, 22q13 deletion syndrome, Trisomy 13 and FG syndrome etc. are the main conditions that causes hypotonia in infants/children.

There are many conditions leading to development of hypotonia, which are: muscular dystrophy, metachromatic leukodystrophy, infectious disease such as encephalitis, sepsis, meningitis, infant botulism, Guillain-Barre syndrome, poliomyelitis etc., myasthenia gravis, celiac disease, problems caused due to improper vaccination or abnormal reaction to vaccination, congenital cerebellar ataxia, congenital hypothyroidism, hypotonic cerebral palsy, teratogenesis (caused from utero exposure to Benzodiazepines), sensory integration dysfunction, dyspraxia, metabolic disorders such as hypervitaminosis (vitamin poisoning or vitamin overdose), rickets and kernicterus, problems with central nervous system dysfunction, any kind of brain injury that had direct or indirect effect on the nervous system (brain injury caused in an accident or injury caused in a child suffering from shaken baby syndrome), motor neuron lesions etc.

How is Hypotonia diagnosed?
Physical examination can help in confirming some symptoms such as inability to flex muscles for longer time, delayed response to stimulations, delayed physical development, speech problems, feeding problem for an infant due to inability to suck breasts properly etc. If the disorder is thought to have affected brain then it is considered to be cerebral palsy, if the problem is related to muscles then it is called as muscular dystrophy.

Family medical history, CT scan, MRI scan, EEG (Electroencephalogram), genetic testing (which involve testing for abnormalities in genes, chromosome karyotyping etc.), blood test, electromyography muscle test, muscle and/or nerve biopsy, spinal taps (also known as lumbar puncture, used to collect cerebrospinal fluid for analysis) etc. are other tests used to diagnose Hypotonia disorder.

I think one of the tests was CPK or something like that. I don't know what else the doctor was looking for, but he didn't feel that any more testing was necessary, not even an MRI. My son's hypotonia is mild but he does not have the endurance that other kids have even though he gets regular exercise. We were told that he had hypotonia when he was 12 months old. He couldn't stand up without support and the muscles in his legs quivered like they were really weak but he was able to walk at 18 1/2 months. His core muscles and legs always seemed weaker than the rest of him. I have tried to learn as much as I could about all of this but I am still really confused also.

Sorry, my post may be unclear. I'm very familiar with hypotonia as I have a child who has been diagnosed with it and we've been through quite a lot of testing with neurologists, geneticists, etc. In none of that have I ever heard that SPD causes hypotonia and I can't imagine how it would. It makes perfect sense that having hyptonia could interfere with sensory processing as part of the sensory information the brain receives comes from muscles. So, if a child's tone is very low their brain may not be getting as much information such as where the body is in space. To put it in simple terms, when the brain is getting less information from one part of the sensory system it can cause the other parts to go into overdrive to compensate.

Sensory processing problems are real, but much like hypotonia, it is at best a very fuzzy, nonspecific diagnosis. It is more a set of symptoms than an actual diagnosis with a clear cause. I don't think it is fair to say SPD could change a person's muscle tone.

If hyptonia is a significant enough problem that it is interfering with a child's ability to enjoy activities, I believe it deserves a complete work up because some of the causes of hyptonia are treatable. This is particular true for milder metabolic disorders which are more frequently being diagnosed. I'm glad we pursued testing because it has made a big difference here.

I hate to see hypotonia dismissed as not worthy investigation because hypotonic individuals can face serious problems as they mature. First, there is a greater risk of scoliosis (as you've experience). Also, as hyptonic individuals mature as adults they can also face greater wear and tear on joints much younger than people with typical muscle tone. Even without a causal explanation for the hyptonia, physical therapy focusing on increasing strength and using proper posture and ergonomics can make a huge long term difference.

If you have a copy of his bloodwork you may want to do some investigating online. It is not uncommon for families to be told by neuro that the numbers are in range, but to later hear from genetics that there wasn't adequate testing being run.

When the neurologist ordered the blood tests, he did say he was checking for metabolic disorders. He said that my son's difficult birth could have caused his issues but he wanted to make sure it was not a metabolic disorder. My son was born with the cord wrapped around his neck, there was a delay in getting him out, and his heart stopped beating at one point before he was delivered by forceps. We were told that he might have had mild birth asphyxia. I read that a difficult birth can cause sensory issues and my son did have sensory issues that I thought for the first five or so years of his life might just be overexcitabilities. Doctors only noticed that he was very bright and one wrote on his evaluation that he seemed to be high IQ. His hypotonia was mild enough after he turned two that the doctors didn't notice it during routine exams and he had different doctors every year or so at the military base. It wasn't until he started school and a gymnastics class that I noticed the difference in his endurance, balance, and motor abilities. His doctor at the time, the primary care physician, told us that he didn't think the hypotonia was anything to worry about so my son didn't get any kind of therapy at all until he was seven and we had to fight for that. I found a checklist for SPD and took it with me to the doctor and my son got to see a developmental pediatrician when he was seven who told me to read the Out of Sync Child has Fun. My out of sync child didn't think the activities were fun and insurance only paid for OT for six weeks and I don't know how we got that. It doesn't pay for sensory integration therapy and that is what the OT said he needed. I think the dancing he had to do with musical theater was almost like therapy and he enjoyed doing this so that is what he did for exercise, along with a few other things at home to help with delayed visual motor integration. The OT recommended jigsaw puzzles but he never wanted to do them. I think games like Dance, Dance Revolution and Wii Sports helped with gross motor skills.

My son's blood tests came back completely normal. There is no family history of low muscle tone. A lot of people in my family and my husband's family are athletic which makes things more difficult for my son because he doesn't fit in with his own family. The sports people in the family don't care anything about his interests and although he can talk sports (thanks to video games) he doesn't want to talk about sports all the time so he isn't that close to his cousins.

The neurologist thinks that further testing is not necessary and we can't get any more testing unless a doctor orders it.

We got a hot tub so he could exercise in it (with the temperature lowered) to avoid the wear and tear on his joints. He did aquatic physical therapy and the physical therapist taught him how to do the therapy at home so we don't have to make the 45 minute drive to do therapy. She was honest with us and said she didn't know if he would ever be able to lift dance partners. The musical theater director works around his not being able to lift dance partners and lets him take breaks when he needs to. He doesn't seem uncoordinated at all now and I don't see any motor planning problems when he learns new dances. He is able to plan ahead well enough to round up several little kids and get them on stage when they have a scene together. He is never late for his entrances. He does his lines and solos very well and now even the dances even though he has to sit and watch sometimes. The director, who has known him since he was four, tells him he is doing awesome and he is. Other people in the theater group have noticed this as well. I wonder if this has something to do with neuroplasticity and if it can still be called dyspraxia if he is isn't uncoordinated any more.

The only thing that hasn't changed is his endurance. His limit seems to be 2 or 3 hours. He has musical theater practice 5 days a week, 3 hours a day and he is on his feet a lot of that time because he has a lead role. He has been doing this all summer. If exercise alone could fix the endurance issue, it looks like the problem would be fixed by now, but it is not. He is worn out afterwards and he says his feet hurt really bad when all the other kids have plenty of energy and are not in pain. He is learning to work through the pain and this amazes me since he once had trouble with clothing tags. When he gets home and takes off his brace for a few minutes, he often has painful looking red marks where the brace has rubbed against his skin but he still manages to do it all again the next day.

He is very careful to use proper posture when he has the brace off. The orthotist talked to him about how important this would be for the rest of his life. He can only take the brace off for non-weight bearing activities like swimming and I noticed when he sits at the edge of the pool his posture looks very good. You can't tell he has scoliosis. He hopes to keep it that way. You can't tell from looking at him that he has a disability and this makes it really hard to explain to other people. At least now when he wears the brace people are a little more understanding.

Not only are people more understanding, but the younger boys in the theater group tell him they think he is really cool and tell him this all the time. Somehow my son turned this scoliosis brace into something that adds to his "coolness." He makes up stories about it and does knock-knock jokes with it and the kids really like him. This is the kind of "family" I think he needs. He does enjoy being with them. We don't spend a lot of time with our biological sports obsessed family.

This is from the SPD checklist that I took with me to show my son's doctor when my son was about seven years old. This was how I finally got a referral to a developmental pediatrician.

3. Poor Muscle Tone And/Or Coordination:

__ has a limp, "floppy" body

__ frequently slumps, lies down, and/or leans head on hand or arm while working at his/her desk

__ difficulty simultaneously lifting head, arms, and legs off the floor while lying on stomach ("superman" position)

__ often sits in a "W sit" position on the floor to stabilize body

__ fatigues easily!

__ compensates for "looseness" by grasping objects tightly

__ difficulty turning doorknobs, handles, opening and closing items

__ difficulty catching him/her self if falling

__ difficulty getting dressed and doing fasteners, zippers, and buttons

__ may have never crawled as an baby

__ has poor body awareness; bumps into things, knocks things over, trips, and/or appears clumsy

__ poor gross motor skills; jumping, catching a ball, jumping jacks, climbing a ladder etc.

__ poor fine motor skills; difficulty using "tools", such as pencils, silverware, combs, scissors etc.

__ may appear ambidextrous, frequently switching hands for coloring, cutting, writing etc.; does not have an established hand preference/dominance by 4 or 5 years old

__ has difficulty licking an ice cream cone

__ seems to be unsure about how to move body during movement, for example, stepping over something

__ difficulty learning exercise or dance steps

My son had every one of these problems, except for the one about licking an ice cream cone (maybe those neural pathways were better developed through lots of practice) along with some signs of vestibular and proprioceptive dysfunction. Every one of the problems either got a lot better or totally disappeared except for the fatigue problem and I never saw anything on any of the checklists about pain. I think my son's foot pain adds to his feeling of fatigue. The pain problem is what keeps me looking for more answers.

I don't think my son had any problems with muscles or anything else when I was pregnant with him. He kicked a lot. He kicked as much as my former cheerleader daughter did. I think the actual cause of his hypotonia and the SPD had something to do with the difficult birth.

I'm curious
When was he first identified as being low tone? Did it show up at birth, did his pediatrician talk about it or was hypotonia first discussed at age seven with the checklist you mentioned?