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Discussion Starter · #1 ·
These are her symptoms:
5 percentile for height 10 percentile for weight
hyperactivity
wanders aimlessly
hyperacusis (painful hearing)
ROTTED teeth
strabismus
delayed overall development
delayed gross motor skills
speech delay and disfluency

any guess as to what is wrog with my child??

TIA Elyice
 

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Quote:

Originally Posted by hotmamacita
what is strabismus?
Crossed eyes? I'm not sure, exactly, but something to do with eyes and the muscles.

I really have no idea what is wrong. What have you been told and are you unhappy with the diagnosis, so you are hoping for more insight? Was your child a premature infant? I've known some children with a lot of teeth troubles, and one mom thought it was yeast, and another said it had to do with her baby being premature.

 

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the painfull hearing and wandering/hyperactivity part sounds a little like mine. We are on the spectrum. Go to the Autism Research Institute webpage and get the phone number and call them. They have this survey thing that if you fill it out they will tell you if your babe sounds like he has autism. Maybe not but the painful hearing thing is kind of a red flag. Mabye not but worth checking into.
 

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Discussion Starter · #7 ·
She is 3 1/2 yrs old, not potty trained a nd she loooks like a 2 yr old.

Yes, I have taken her tob several doctors including specialists ie. geneticist, neurologist, speech, developmental specialist, hearing doc and peds.
I am throwing this out there to this community of thousands b/c the doctors haven't a clu what her diagnosis is.
She walks and talks and understands. Basicly she is 3yrs6months but looks and acts like a 2yr old toddler. The 1st thing the ocs say is "she's definitely not autistic" b/c she has a unusually overly friendly personality. She has never had stranger anxiety, never. She approaches strangers and touches their face, gives them back rubs and waves wildly to them. She loves people.
She speaks like this " I want eat" "up high" (as in pick me up high)
"I want to go park" "look he wet" "look it"
He tounge seems to be normal in size but she makes a odd underbite when speaking sometimes.
Any ideas?????????????????????????? please.
 

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Having worked with lots of kids in the school system, I can say sometimes there isn't a diagnosis. It just seems like there should be, but there isn't.
Unfortunatly, that means you're charting unknown terratory. There are no people that went before you and you don't know what the future holds.
I'm sorry that no-one who's seen her knows a diagnosis.


Beyond a diagnosis, is she getting treatments for your individual concerns? Speech and gross motor therapy will help no matter what the future brings.

Have you explored Williams Syndrome? The literature talks about how friendly the kids can be. http://www.csmc.edu/csri/korenberg/f...sdssshort.html
Characteristic facial features are described as "elfin." In the majority, valvular stenosis, poor growth, hypotonia, late-onset contractures, dental anomalies, infantile colic, oral-motor discoordination, and hyperacusis (ie, hypersensitivity to sound) are reported. Infantile hypercalcemia may be transient and is often subclinical.

Mild to moderate MR, relative preservation of language, and associated weakness in visual-spatial development are typical.

Elastin is the candidate gene presumed responsible for some of Williams syndrome features, including supravalvular aortic stenosis."
 

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this sounds to me like an austism spectrum disorder. I don't think that can be ruled out just because she is not shy. There are many different "levels" of autism. By Painful hearing do you mean aversion to loud sounds? Many children with ASD have problems with their teeth. I do not know why. I have noticed they often have picky eating habits, and / or certain foods affect them in strange ways. And maybe this ties in with the teeth issue?

I am saying this from experience (many years working with children with special needs in different settings), but I'm no expert.

My dh on the other hand is bio/chem double major and hopes to be accepted to dental school in the fall.

He suggests seeing a dentist. He is wondering if she has some kind of infection in her jaw, which is causing the teeth to rot as well as giving off toxins that are affecting her behavior and growth.

He agrees that docs saying she can not be autistic because she is friendly is in his words "b.s." (He has been working with severely disabled children for over twelve years now)

Best of Luck. Please keep us posted.
 

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Discussion Starter · #10 ·
"Infantile hypercalcemia may be transient and is often subclinical. "
What does that mean, Apricot?
Yes, I believed she has Williams syndrome however she tested negative for it. a well known ped. also thought she had WS as well as the school district.
Punkinprincess, thanks alot. I am sure it's not autism as I too have worked with Autistic, special ed and typical children. She almost seems to have the OPPOSITE of Autism. If that makes any sense. not only is she not in herown world or self stimming or obsessed. She is OVERLY outgoing, verbal and drawn to people. It is very very odd. If you met her, she would be in your lap, kissing your face and gazing into your eyes while rubbing your face within 5 minutes. It is the most obvious sign that something is not quite right. As a infant she had colic then she became the easiest baby ever. I would literally lay her down and tuck a recieving blanket around her body and she would fall right to sleep. It was WEIRD. Also she constantly tries to ruin away an explore. she acts like a toddler.
I am so freaked out b/c she looks lilke a dwarf although that has not been diagnosed. I fear the unknown. I fear that there is something she has that we can treat and are not treating. I fear that she can be helped and we are loosing time before she cannot be helped. she does go to speech therapy.
Please if anyone has any ideas no matter how small, please share.
~Tia Elyice
 

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Quote:

Originally Posted by elyice
"Infantile hypercalcemia may be transient and is often subclinical. "
What does that mean, Apricot?
Hypercalcemia just means elevated levels of calcium in the blood.
There aren't many outward symptoms associated with it, though.

Her "Friendly" behavior reminds me of kids with attachment disorder. Although that doesn't seem to be a possible diagnosis here, it might be an interesting way to search for behavioral information.
It's very frusterating for those kids' Moms, but no one understands, because strangers find the kids absolutely charming. But for all the work you do, your kids are supposed to like their moms best. A relavent quote

Quote:
Children with RAD either avoid forming personal relationships (the inhibited or unattached type) or they seem overly friendly to everyone, without making any distinctions between their parents and strangers (the uninhibited or indiscriminate type). In both cases, there is no real trust. The children treat other people either as threats to be avoided or as suckers to be fooled and manipulated.
I don't think I've ever seen anything kill a woman's self esteem faster than caring for one of these kids. That's the only reason I bring it up, to let you know that if you're feeling that way, it's not just you. It's almost every mom with an overly friendly child.
 

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I'm sorry you're going thru this! I do hope you find out what's wrong and can heal your little one.

I was reading this article at Dr. Mercola's site:

http://www.mercola.com/2004/jun/19/toxic_metals.htm

It looks to me like some of the symptoms of exposure to heavy metals do match the ones your child exhibits. Have you done a hair analysis? You can contact Great Smokies Lab at 800-522-4762 and order a hair analysis kit for about $60.00 and that would give you a good overview of what your child could have been exposed to. If exposure to toxic metals is an issue, you can try chelation therapy and dietary measures (no grains or sugars, EFAs, probiotics etc). About the teeth, has your child been overexposed to antibiotics? It can cause yellowing of the teeth. Also has your child ever experienced vaccine reactions? I believe hiperactivity and ADD symptoms can ba a consequence of vaccine reactions. About the growth issue, I wonder if your child could be B12 deficient, in case you (in case you breastfeed) or her follow a vegan diet:

http://www.mercola.com/2003/feb/12/b...eding_diet.htm

I hope this can be of some help and again good luck to you booth!
 

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Discussion Starter · #13 ·
hmmm, you have great ideas Apricot. Little bean is very attached to me, but she does have some odd characteristics. She is loving and personable, she crawls into my bed each morning and snuggles. I'm definitely her most favorite person. however I have NEVER seen a child interact with others like she does. She enjoys gazing into the eyes of strangers and giving them kisses and back rubs.
I was surprised that you thought of WS. I really think she has that. There must be some way to find out. She tested and was neg for WS...

Thanks Alot, I appreciate this.
~Elyice
 

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When you say she tested negative for William's Syndrome, does that mean you've had a chromosomal analysis done? Did they do the fish (I'm sure I'm spelling this incorrectly, it's probably more the name of a person than the fish itself, but ykwim, right?) test? Because if it was a chromosomal analysis they should have looked at the possibility of Achondroplasia (dwarfism) as well, so you'd have your answer for that. Other markers for William's Syndrome include larger folds of skin in the inner eyes and sometimes kidney issues--which can include smaller stature and growth if not repaired. Just based on what you're saying, I'd be looking at William's Syndrome or something on the Autistic Spectrum myself if she were in my office. Is she generating her language on her own or using the same phrases over and over and over again? Because this is a huge thing. Sometimes as parents we think our kids are saying things, but they're really just imitating phrases they've heard adults use, and they're not generating the sentence themselves. This has got to be awful for you. I'm so sorry you're having such a difficult time finding answers and a path toward healing.

Leah
 

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Discussion Starter · #15 ·
Thanks Leah-
Yes she generates her own sentences but not as many as she should. Right now she says things such as " My rubberband fall out" (her hair tie) "Put it in my head" It seems okay but she also repeats language with slight Echolalila?
such as if asked "what are you doing?" she says "doing" if you ask her again and again, she will finally say " doing toy" or whatever she is doing. she communicates okay but not well. She can say " mom, turn the light on" and give general directions on tangible things. BUT she cannot reply when asked "what did you do today" She is just barely starting to give a answer like "I paint" but that is the extent. Shetested negative n the FISH test for WS. the dwarfism test, I do not know if it was done. she had her bone age measured and it was normal.

Here are some ofthe tests, I have a note of:
bone age-normal
cbc-normal
essential fatty acids-normal
metabolic panel- normal except for elevated phosphatase which seemmed of no signifigance
urine for organicacids-normal
tested negative for smith lemli opitz
blood amino acids-normal
chromosome analysis-normal
antibodies to gliadin -normal
urinalysis -normal

She is tiny under the 10 percent. she is 3yrs 6months and 24 pounds 37 inches tall. with speech delay in articulation , walked at 17 months and did not run until 29 months. She's hyperactive and her teeth have rotted. she looks unusual with very deep set eyes, dry skin, and epicanthal folds in her eyes. she is ADORABLE but different nonetheless.

Mommymama, I will be calling regarding the hair test, i though of doing that but did not follow through, thanks. yes she reacted to the vaccine dtAp severley with a giant swollen hot arm and high pitched unconsolable screaming. that was her 3rd shot with it. Ishudderto think what the 1st and 2nd shots did to her. Thanks Ladies Elyice
 

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Wow that is awful about the dtap reaction. Dh and I have been thinking about your dd all day. It is so hard to make guesses when we have never seen her, kwim? We really feel for you


I'm just throwing this out, not really sure if it applies. I worked briefly with a little girl with Turner's Syndrome years ago, and from what you have said some of the characteristics match. Namely the slow growth, language problems, activity levels and the unusual friendliness.

i did a google search which turned up quite a bit. I read some and I'm just not sure if it's a good match with your dd or not. Maybe worth a look?

I will keep thinking....

BTW, did you notice any "differences" in your dd before the dtap reaction? If you don't mind me asking, what were her stats at birth (weight and length)?
 

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I don't know if you'll find comfort in this, but my dd (8 lbs 11oz at birth) is 3 years 2.5 months and weighs 25 pounds. She's 35 inches. I'm guesstimating her adult height to maybe reach 5"2'--very much like her paternal grandmother. Now, if you have a very tall family all around, then I'd guess there'd be more reason for concern, but sometimes people are destined to be small, through no fault of anyone else. My dd is a mushmouth as well, and has the big mouth, increased folds, kidney issues...voila! But I don't think she has William's Syndrome either, although I've been watching for other signs of it for at least a year now. Again, I'm sorry. You've been on my mind all day, and I just wanted to check in with this thread to see. It sounds like you've really been thorough...I'm soooo sorry about the dtap reaction. That's awful! No wonder you're frightened!

Leah

eta; I'm also postulating possible Fragile X Syndrome. The symptoms are far milder in females, likely because there are two X chromosomes. Here's a link to their society.
 
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