Hi everyone. I'm being neurotic today! :)
Every time I dare to think I've got it together, I have one of these days where I start googling the possible conditions or diagnoses my son has, and I have a mini-freak-out or two. Today is just one of those days.
Very briefly, my six-year-old son has:
* Miild heraing loss. This was just diagnosed at our pediatrician's office; we're following up with an ENT on Monday.
* Mild vision issues / need for glasses. Eye dr. appt. scheduled for the following week.
* Hypotonia (low muscle tone). He sees a wonderful OT for this each week, and he's also getting speech therapy through his school.
* Several speech impediments, which can make it difficult for people who don't know well him to understand him. I had always attributed this to the hypotonia, but now I'm wondering about the hearing thing as well. He also just generally has difficulty controlling his mouth muscles.
* Mild sensory issues. These don't come up much anymore, though he still has issues with hair washes and swimming lessons.
My son is also academically gifted. At 6 (in first grade), he reads at a 6th-grade level and has a vocabulary and spelling ability to match. He is advanced in math as well, though less dramatically (2nd- to 3rd-grade level). However, his ability to function in an accelerated program is compromised by his hypotonia, since his handwriting level is below what they look for in 1st grade, let alone anything above. I'm hoping this will be resolved when I teach him to type, which we're working on now. He's also clearly musical (and reads music fluently), and with this, the ear thing is sort of breaking my heart.
HOWEVER, he's also a bit immature socially. He has one best friend (sweet, wonderful, amazing kid) whom he positively adores, and other friends as well, but his way of resolving conflicts is more appropriate for preschool than for his age.
Beyond all that, he seems fundamentally, subtly different from other kids. He's very thoughtful and reflective and articulate, but not as quick on the uptake. He sort of needs time to process everything. He's notably less physcial than what you'd expect in a 6-year-old boy. I'm like that too (verbal/literate/reflective, but sort of klutzy and clueless and slow to get the joke), for whatever that's worth.
Finally, his head is quite large (90-something percentile, but consistent in growth). He has this soft, round baby-looking face. He's got a caesin (milk protein) sensitvity, so I watch his diet pretty carefully. The evaluator (for hypotonia) noted that the bridge of his nose is flat.
What I can't help wondering (and I know I shouldn't randomly google symptoms; I KNOW) is whether there's some underlying condition behind all of this -- something genetic or vitamin-related or something. Thanks in advance for your reply, and sorry to ramble on so long.
I really can't put it together- just wanted to say, he has a great mom! I know you feel inadequate right now but you are really on top of his issues. My friend has a child that used to type in high school and also on the sat and other big tests but they have to request it early for the big tests.
If you are this concerned and are constantly searching and feel something is missing, take him to a geneticist. They can help look at everything and get him tested. He sounds delightful to me-----I wouldn't worry about the issues you stated. But if you are concerned, talk to your ped and get into a geneticist.
Sounds like maybe Sensory Processing Disorder, on the high-functioning end of Autism.
My daughter has it. Had Severe speech issues when younger and was in speech at school from age 3 through grade 6. We had her in early-Childhood class when she was 4. That's when they decided/discovered there might be more going on and they did further testing; discovered she had severe hypotonia. She was in OT/PT from age 4 until 4th grade. She was terrified of riding a two-wheel bike; she finally learned how this summer at the age of 12 years old. She still is terrified of swimming/the pool; she says it's like a bottomless black hole that's going to swallow her up, even though she knows that's not true (she and I have been going to the pool together, and I've gotten her to jump in for me). Because she needs time to think about and evaulate if/when she does something, to this day, she has been unable to pass a swim class with other classmates in it. We're thinking we might have to go the individual class route.
She got glasses when she was 3 years old--had Strabismus and is far-sighted. She might possibly grow out of needing them (crossing fingers).
She had her first pair of ear tubes at the age of 5 months, and two more pairs before the age of 3. However, we caught the issues early enough, and she has no hearing loss.
She has had her adenoids out; they were WAY too big for her nasal cavity.
When she was 7 years old, she had her tonsils out. She'd been having system-wide strep infections; they found her tonsils full of strep when they removed them. Since she had her tonsils out, she had one ear infection and no colds or flus since (it's been 5, going on 6 years).
My daughter has issues with being active/sports because of her hypotonia. She is very slow and doesn't have much gumption. It takes more of a push for her to get herself motivated. But if she likes something/wants to do it badly enough, she is old enough now that she motivates herself. She has been in dance class since the age of 4; this might be her last year, though, as she is interested in getting more involved in school activities.
She is very interested in and has been doing well playing her tenor sax in band (we've been getting her private lessons). She is well-above her classmates in terms of reading and reading comprehension (she's reading adult books). She made the Dean's List the first quarter of 7th grade this year. She still struggles with social skills and making/keeping friends.
When she was 7, my husband and I found out we had a casein allergy as well as a gluten and soy intolerance (our daughter has a gluten intolerance and was allergic to cow's milk as a baby). We took gluten, soy, and cow dairy out of our diet AND changed over to organic. THAT made a tremendous difference in our daughter's overall attitude (she's been very agitated as a baby/toddler, and was constantly beating her head and saying she was dumb, stupid, that she shouldn't be here because she couldn't do anything.). After the dietary change (gluten and casein free diets are often reported to help children on the Autism spectrum), we saw a remarkable change in our daughter for the better.
I do not believe that Autism or Autism Spectrum Disorders have a genetic issue. I think it is more an environmental issue because of all the toxins we currently have in our environment, as well as GMOs in our food supply. I also think their little bodies are full of neural-damaging toxins/heavy metals. I had both myself and my daughter tested for heavy metals; we both tested positive for severe heavy metal toxicity. We both detoxed. The detoxing also really helped my daughter function a lot better.
Along with eating organic, we cut out processed food/preservatives, fast-food restaurants, we have a reverse-osmosis water filtration system on our drinking/cooking water in the kitchen, we only buy organic/free-range meat and eggs, we don't eat artificial sugars, MSG, aspartame, dyes, flavorings, chemicals/pesticides, etc., etc. In other words, we try to eat as natural and organic and off the land as possible to cut out any and all unnecessary exposure our daughter might have to any harmful toxins.
My daughter also takes lots of different supplements--all very high-grade, high-quality (we buy from Whole Foods or vitacost.com): Calcium/Phosphorus/Potassium, multivitamin/mineral, Vit D3, Vit C, 10-mushroom complex for immune system, Vit E/EPA/DHA, and a Vit-B Compound (because of the gluten issue, her body doesn't process the Vit Bs correctly), etc. Supplementation has also gone a long way to making her healthy and giving her a strong immune system.
Added: Mira, I just want to say that I read Hazel's response (I frequently read Hazel's responses) and I want to mention to you that she has been on this site for a long time, giving thoughtful and excellent advise. (I'm not trying to leave anyone out, btw - there are some wonderful women who are just as smart and helpful as Hazel...) I say this to lend credence to her remarks because she is SO often in the ballpark with what she recommends. I hope that her advise puts you on a path that helps you and the doctors pinpoint your son's issues.
Original:
Hi Mira. I'm sorry you both are going through this. I actually think that you are smart to be wondering what you're wondering.
I recommend that you pull out all the stops to get the OT, PT and speech and language lessons, and put this all ahead of school. I don't mean to take him out of school - I think that it's good that he is with other kids. I would work it out with the teacher for him not to have homework so that he can focus on these other issues. You need to have all his therapy after school without the distraction of homework that he doesn't actually need to do.
Has his ENT mentioned trying tubes? Or is the hearing loss something else? Hearing aids are very advanced now - get the best ones available for him if ear tubes are not the answer.
I believe that a genetics specialist is what you need to try to figure out if there is an underlying condition - syndrome. It's important that you rule it out, in case it has to do with a recessive gene issue between you and your husband. He has the right to know as an adult, if this is the case. And separate from that, if this is identifiable, knowing what other people do to help, and how much success they have, will be helpful to know.
If it isn't part of an underlying condition, then you continue to work on all his issues.
Regardless of whether or not you find something, continue to work with him and be patient while he learns to cope.
All my best to you both,
Dawn
Hi Mira,
Your son sounds similar to my dear nephew, who is now 11. What my sister discovered is that he has a genetic mutation in his dna code (Which she has too) which is called MTHFR, and the lovely thing is that A. it's easy to test for and B. it CAN be treated with supplements. Here's a link to a good site; my sister has attended seminars held by this doctor and has found her life has been radically improved, working with a naturopathic doctor and using the supplements as suggested.
MTHSR inhibits the body's ability to process vitamin Bs and folate/folic acids, because the body cannot methylate these in order to use them. There is also a long list of adult symptoms (these lists are the most common, I don't see too much info regarding pediatrics), too. If any of these ring a strong bell for you, it may be that your son is also affected by it.
There has been some anecdotal evidence that some kids who are presenting symptoms similar to my nephews have been helped immensely with supplements. I think, because this is an emerging area of study, that we'll see more peer- reviewed studies on children in the future. Some sites I looked at while researching this for you find that 75% of their pediatric patients who are on the autism spectrum do indeed have MTHFR mutations present in their genetics.
All that to say, I don't know that this is going to be helpful to your particular situation or not, but I did want to share the information. I plan on getting tested when I get my physical this month. Many doctors are still learning about this, so don't be upset or surprised if your doc doesn't know a lot about it right now. Much of my family is being tested and are having to explain to *their* doctors about it.
Have you had a pediatric neurologist give him a neuro-psych evaluation? It might be a good idea to help narrow things down. I was thinking Autism at first, because much of what you're saying fits... actually I'm still thinking Autism. Of course I can't possibly diagnose over the internet and I'm not qualified to diagnose at all. I'm just a mom who has an autistic daughter with many of the same qualities, although her sensory issues are more serious and she's not as accelerated academically (which is just how she specifically is).
I would take him to a child psychiatrist, Developmental-Behavioral Pediatrician, or a Pediatric Neurologist for an independent neuro-psych evaluation AND I would request from the school that he receive one from them as well. You'll have to call a PPT/Planning and Placement Team Meeting which you are legally entitled to do. Do it in writing. There's a form for it in the school office. The meeting will convene with a social worker, principal, his teachers, speech therapist, occupational therapist, and other team members. You will lay out your concerns very much like you did here and how you believe they're affecting his education. Specifically request that he be evaluated with a neuro-pysch eval and whatever other tests necessary. He'll be observed in the classroom and one on one. You'll be given forms to answer at home to fill out bubble sheets. You'll have the same thing to do in the independent eval, but the independent one will hopefully have a diagnosis/es or will rule out diagnosis/es. If there's something to diagnose, then the independent one will take precedent over the one the school provides and legally bind the school to giving special services (on the presumption that it shows he needs them to aid in learning). So the purpose of the PPT is to request an IEP/Individual Education Plan based on the results of the evaluation/s.
My daughter, along with the sensory issues, ASD, and lactose intolerance, also has ADHD and ODD as well as learning disabilities.
We've taken her off of high fructose corn syrup and artificial food dyes (the worst being Red 40, blue, yellow). We try to avoid the dyes even in shampoos and body washes and lotions. My eldest daughter has ADHD, ODD, and some mild sensory issues so we avoid those things as well for her with good results.
EDIT: I deleted the bunk about acetaminophen because I did more research and spoke with my neurologist, my child's neurologist, and my psychiatrist all who specialize in behavioral disorders including ASD and ADHD and other neurological disorders. The Tylenol "debate" that seems to be cropping up around the 'net is bad science. If you read what I wrote before, please disregard it.
You son sounds lovely.
The fact of the matter is, there are SO many possibilities out there for what could be causing the signs you are seeing. And asking here, you'll likely get 30 different answers...and one MIGHT be the correct one.
Based upon your description of his physical characteristics, there could be a congenital anomaly of some sort...but I don't practice in genetics, so I'm not the person to ask.
Talk to your son's pediatrician. I suggest getting your son fully evaluated. Genetic, psychological and physical testing. Then, once you have a definitive diagnosis, go from there.
I'm certainly not an expert... but reading your response made me think of a friend who's son has many similar diagnoses as your son. You mention that your son has trouble with his mouth muscles - have you ever researched apraxia of speech? I know my friend's son has that, along with low tone, a large head, some food allergies, and he's very smart but socially behind.
I agree with everyone else, if you think there's some underlying cause - keep talking to doctors. Get an appointment with a geneticist. And keep up any therapies that you can find to help!
I am sorry to hear this. My son also has hypotonia, didnt walk until he was 2! He also has speech therapy and an OT through school to help with the hand-writing. ( My son is 5 and in kindergarten) I have always tried to find a diagnosis for my son. He has been through many evals ruling out autism, aspbergers etc...But I know what you mean. Even though there has never been a definitive diagnosis for him he too seems just "different". He has good days and bad. There will be weeks that go by and I think-why was I ever worried he is doing great! But then another time period will go by and its just like what is going on with you! He is extremely sensitive to his environment. Notices EVERYTHING! He knew his way around town better than I did, just by watching where we were going in the car at 2. LOL!
So, I dont have any answers for you but wanted you to know that you are not alone! Good luck to you!
Oh yea, my son has been diagnosed with sensory processing disorder, but it does seem like it is getting more mild with time.
i agree genetisist.. however.. they just diagnose a genetic problem.. do not treat it.. so it would nt help him any.
gifted folks often have some weakness too..
I truly believe LivingLife & LovingIt F........nailed the proper response for this question:
if you have such concerns, instead of guessing, seek the services of a geneticist.
When our daughter was born with multiple heart/pulmonary issues, a geneticist was on her team at Children's Hospital. It was amazing how detailed her workup was.....right down to the measurement between breasts! Who looks? Who cares? But the team did & that was one (of many, many) things mentioned to us...that her breasts were spaced a little far apart. So for a little humor here....I guess that's part of "why" my boobs are in my armpits at age 50! :) Hope all goes well with your son!
