Need to vent

[Guest guest]

Hi Dana,

Conditions overlap -but each has unique symptoms. Apraxia is a motor

planning disorder. Hypotonia is muscle weakness/low tone. Sensory

Integration Dysfunction is sensory dysfunction (seeking or

avoidance 'could' be signs) ADD is attention problems and ADHD is

that plus hyper activity - but as with anything with symptoms you can

only suspect diagnosis to separate from normal behavior. It takes a

knowledgeable medical professional to know if a child has a diagnosis

or if the symptom is developmental.

Being very active or sensory seeking are not symptoms of hypotonia.

Of course there could be exceptions where a child has more than one

diagnosis -a child with hypotinia and ADHD and DSI perhaps -but I

know from my own son that with hypotonia the child tires faster -and

if they push themselves the muscles " burn " so they can only push so

much.

There is a chance that this child may also be an exception -but

" very active " and " running " are still not signs of hypotonia in themselves-

so even more the reason to seek appropriate diagnosis.

=====

[Guest guest]

Hi ,

Thanks for the update. The drooling can really create some social

issues in itself -so something to also work on. It could be from

weakness or another oral motor dysfunction. Have you taken your son

to an oral motor specialist?

http://www.cherab.org/information/speechlanguage/oralapraxia.html

My son Tanner was diagnosed with hypotonia in the truncal area -but

he used to tire walking in the mall -(heaven forbid we forgot the

stroller!!) even at Disney he still wanted a stroller at 6 years

old -but we forced him to walk more and more as a type of therapy.

If we brought friends that helped because he didn't want to whine in

front of them -but he would look at me with tears in his eyes and

holding his legs would say " burn " and I would say not letting anyone

know it was because of Tanner, " I need to sit down for a second guys

I'm pooped! " Honestly it sounds more like it could be ADHD then

hypotonia with the not sitting down/running around -but could also be

from sensory issues, frustration- that's why again it's great you are

going to take him to neurology MDs to check out what's going on.

Actually your son sounds more like

my " late talker " child Dakota who wasn't apraxic -but who has ADHD

and crushed facial nerves from birth injury so needed to be in oral

motor therapy and OT almost from birth until around 3 or 4. I'm so

happy (again) that you will be taking your son to a neurologist next month -

are you going to both?

For ADHD I know from my son it would be rare to diagnose that at your child's

age of 2. It could be suspected of course -but he would be watched to see if

going ahead it affected school work, social ability, to see if there are

problems. My son Dakota was suspected of ADHD from very young. He too never

could sit still and was always running around and always touching everything.

Not really sensory seeking as much as just so curious. It's good and bad. Bad

when they are younger and break things -but as he got older and to this day

Dakota is able to go to someone's house for the first time and find a hidden

door or switch that the owner of the house never knew was there. At 3 when

Dakota knocked a shelf off of his pediatric neurologist's wall (Dr. Trevor

DeSouza) Dr. DeSouza looked at me and said (again) " I do suspect ADHD " Many

neurologists (and teachers!) wanted me to medicate Dakota but I never did -as

thankfully he responded amazingly well to EFAs too in a different dosage than

what works for apraxia. You need higher EPA and not as much GLA. Dakota made

many a believer in oil therapy for ADHD for sure! Much on this in the archives

-and can tell you that he has tons of friends -always did -and is now getting

into acting and has been a hit (and very funny) up on stage. But he wants to

design theme parks and/or rides when he grows up.

Below is a long archive on drooling with lots of tips. Fortunately

he's still a little one -but this is something you want to take care

of as well ASAP because once again drooling can put your child in a

negative light not as much in the eyes of the other kids at his age -

but their parents who see him drooling on the toys, equipment, their

child -etc.

From: " kiddietalk " <kiddietalk@...>

Date: Sat Jan 3, 2004 12:40 pm

Subject: Re: Apraxia and salivation?

Hi Liz,

As you know as a member who has been around for a bit (and one I

know from NJ!) this topic has come around before. I love your

suggestion of the chin tap for the older child -perhaps the one I

was told for Dakota works best for a preschool child. If this topic

is relevant you may want to read on. I found this archive from October

with lots of information and links in it and hope it helps someone!

~~~~~~~~~~~~~~~start archive message

From: " kiddietalk " <kiddietalk@...>

Date: Mon Oct 13, 2003 10:07 pm

Subject: Re: excess saliva

Hi diapermom 2!

You don't say your child's age since some aspects may be

developmental, but based on your email name of diapermom -I guess

either your son is young has potty delays.

I do understand your son has saliva just sitting/pooling in the

mouth and he's either not swallowing often enough, which is

also part of what can happen when a child drools too even though

your son is not drooling, or his body is producing more saliva than

he really needs. Unfortunately the former (drooling) is yet another

one that I can relate to with my oldest son, and fortunately this

too did pass!

You first want to rule out there are no medical, physical etc

reasons for too much saliva in the mouth.

http://www.alsa-or.org/treatment/Saliva

http://www.technologyandlanguage.com/presentations/drooling/

http://www.duit.uwa.edu.au/web/inclusion/disability/saliva.html

There are medications (and probably nutritional interventions as

well!) to reduce saliva in the mouth if that is the reason.

http://www.alsa-or.org/treatment/Saliva

I also read there can be psychological triggers of too much saliva -

such as nervousness. So could be a number of reasons. Again

however you are the first to mention too much saliva here...without

the

drooling part.

In addition to discussing with your child's MD, as well as

specialists such as ENTs, which I highly recommend -perhaps some of

the strategies for droolers will work for your child in the meantime?

The following are two or three archived messages from about 2 years

ago. This never came up before either because it's not common for a

child to have lots of saliva in their mouth and not drool -or most

don't want to talk about it -so the archives are on drooling.

As far as drooling -Tanner never really went thought even

the 'normal' drooping stage -Dakota made up for that big time -but

has not drooled at all for years. Therapy deals with lots of stuff,

strategies help cover what therapy misses -this is yet another

example. Hope some of the following can help.

From: "

[Guest guest]

Not to sound dumb but does hypotonia come in two forms or something?

My daughter, pretty much NT, ahead on all milestones, ran around like

a lunatic far longer than her peers and had no obvious tone issues

but was resistant to passive stretch and the geneticist noted skin

tone/connective tissue disorder stuff.

My son, who aquired language in an apraxic manner, is not formally

diagnosed but the OT and geneticist noted low tone, is more like what

describes though I am happy to report is far more active daily.

He was floppy as a baby and has had low tone from the start. He felt

heavier and long after the kids are supposed to need support when

holding he still required it. It was frightening. All is in the right

direction now but I want to know what we had with each and if it is

two strains of the same thing or something different entirely.

[Guest guest]

Re: was often extra-active to

cover the fact that he didn't know what he was supposed to be doing.

I believe this is exactly what we saw in my daughter.

[Guest guest]

Regardless of how 'he is crazy " was meant it is still hurtful and it is

wrong. There are no excuses for talk like that especially in this day and age,

people should not be so ignorant, period, they should also teach their children

if they have the capacity to understand that those type comments are wrong.

Kids can be very mean and hurtful to each other, but a grown woman should

know better. Jen

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

ABSOLUTELY! You are correct! But the situation that you're talking about

below is an IDEAL life situation and certainly not the reality of life.

A person cannot change others by being nasty in return-- but I would

encourage people to use gentle reproofs rather than a harsh word. There's a

bible

verse that I teach my kids to try and live by, and it says " A gentle answer

turns away wrath " .

If we try and tell that woman that she was rude, wrong, nasty, ignorant,

etc-- what do you REALLY think the general outcome would be there?

Would she in turn come around and say " You're right, I'm a rude, ignorant

person, I'm so sorry " ?? or is she more likely to tell the other mom who

approached her to take a flying leap off a bridge?

(more likely the latter, we all know it!)

So, approaching that rude, ignorant person in a manner that is gentle and

caring, and REALLY trying to make the effort to CHANGE the actions, would mean

to diffuse that ignorance, and to diffuse the rudeness.

Saying something to the effect of " When you said it this way, I'm sure you

didn't mean to hurt me or my child, etc " it;'s just generally a better way to

handle the situation.

If we want to help CHANGE the problems-- and get RID of the ignorance, we

need to handle situations like this with grace and dignity, and gentleness

rather than the harshness that we might WANT to respond with.

again-- these are just my thoughts---

Becky

[Guest guest]

Hi Eileen,

A lesson I learned a long time ago is this. I left my dollars do my talking. I

think it is great that you will be calling the store. I also think if it is a

chain that I would write to the chain main office.

I have had people make fun of my disabilities for many years. I am deaf and I

also have PA. My partner has severe back problems. We once went to a mattress

store and laid down on the bed -- nothing more -- to see how we felt. When the

salesman told us " We do not allow people like you in our store. " We were

assuming it was because we were two women. After we left we wrote to the store

main office and complained. They gave us an apology and a $500.00 certificate

to use on a new bed.

Eileen . . . don't let the morons ruin your day. You are worth more than that

jerk in the store and more importantly let your dollars do the talking!

Best regards,

Barbara

[Guest guest]

You just didn't think fast enough, that is all. You could have had some real fun

You could have walked up to him. held out your thumb, pointed to the

nail, smiled sweetly, and said " See?? More class in my nail than is

your entire body, you small silly person. "

Or you could have said " mock us if you wish, but it looks to me like

we are the customers, and we are the ones carrying the money. You

appear to be the one hoping we spend it " or , if you can't laugh at him

" You are a tiny meaningless little grot, and you shall probably end

your days add a burden to society because you have zero manners "

Or

" Does your mother realize you have NO manners at all? "

You can now have lots of fun anyway. Pour yourselves a fizzy summer

drink and get the giggles thinking of what you could have said.

None of us think fast enough in situations like that. But people can't hurt you

if you recognize that they are idiots. Class never depends on wealth.

I'm a lot older than you, and I teach customer service for a living. So I can

get the zingers out fast, since I have been dealing with rude employees forever

(coming into my training- when they leave they are reformed).

Next time this happens, you will be ready.

Cheer up. You cannot let the shabby behavior of others spoil things

for you.

Ellen Donnelly <edonnell@...>

[Guest guest]

That just is horrible!!! I can't believe a grown person would be so

unprofessional. YES! You SHOULD report that person to his manager.

People like that don't need to be working in a public setting.

" fit2bfit2003 " <aerobicfit@...>

[Guest guest]

Eileen,

Depending on what kind of response you receive from the store manager

(that salesperson ought to be terminated--his behavior is

inexcusable), you should also write a letter to the President/CEO of

the chain store and send a copy to your local/regional/statewide and

national disability rights networks and call for a boycott until that

salesperson is terminated and the store issues you a formal apology.

Heck, if you'd like to start a letter-writing campaign to the chain,

let us know! I'll send a letter too!

Hang in there,

Vera

[Guest guest]

Barbara . . . all I can say is . . . " OMG " I can't believe how rude that

salesman was!!! There is just no excuse for that kind of treatment that

salesman gave you and your partner. I just get angry just thinking about the

stupidity of some people! Why are people like

that? It just doesn't make sense.

" fit2bfit2003 " <aerobicfit@...>

[Guest guest]

Eileen,

I am so sorry that happened to you. I agree that writing a *polite* letter to

the company is a good idea. Making it polite will set you apart from the

asses who mocked you and your husband. I've written many letters when a

businessperson got my dander up.

Here's one trick I've learned. If the mattress company is a chain, call

another store and talk to the manager there. Explain what happened and how

mortified you are. (He or she will probably apologize profusely for the way

the

*other* store employees treated you.) Then ask this manager to give you the

name and address of the district manager that is over both stores. I've

found that the second store manager is all too often happy to provide the

information. And while you're at it, perhaps you could get the name and

address of

the company ceo ... Writing to a specific individual is best, I've learned.

This is just a suggestion. You may want to state in your letter that you are

a member of online disability groups and that you have posted emails detailing

the mocking and belittlement you received. And if you have a Human Rights

Commission in your city, county or state, you may also want to consider a cc to

that organization, too.

It's very sad that some small-minded stupid people try to feel better about

themselves by belittling others ... in doing so, they are really belittling

and making a mockery of themselves.

Regards,

BeingIrish

[Guest guest]

In a message dated 7/6/08 8:28:50 AM, bnlerner@... writes:

> When the salesman told us " We do not allow people like you in our store. "

> We were assuming it was because we were two women.

> ============================================================

Hi Barbara,

I guess I lived in San Francisco too long. If someone said something like

that to me, I would probably burst out laughing and say, " You're kidding,

right??!? "

I'm glad you got the store's attention. Bravo!

Regards,

BeingIrish

[Guest guest]

Hi,

My attitude is life gives you lemons and I love to drink lemonade. I

don't let people's attitudes phase me or I would never leave my home!

Barb

[Guest guest]

I'm so sorry to hear about what happened to you. I am a supervisor at a mattress

factory, hopefully not the same one. you should report it to the manager of the

store. I have PA and psoriasis very bad. people like that seem to only care

about themselves, so i hope that maybe if you report him,next time he will stop

and think about what he has done.

Angie Hampton <ahampton002@...>

[Guest guest]

I would not stop there. I wouldn't even call the manager. I would go back to

the store, even though it is difficult for you to get out and when he is with

a customer, walk up to him and thank him for being so rude and making fun of

the disabilities you and your husband suffer from. Tell him he will reap what

he sows. He may not realize it now, but when hardship befalls him he will

surely remember your words. Tell him he just lost a customer and his commission.

I

am sure he was quite young. I just hate rude people.

Danny F <dan_f47@...>

[Guest guest]

I agree that a letter to their corporate office is in order. I have found that

often the manager sets the tone of the behavior that is allowed in a particular

store. A couple of instances in my own life have shown this to be true,

including one where the manager was yelling at me in the background of my phone

call to an associate of the store! Maybe they need to " clean house " at that

store or at least whip it into shape. We take enough crap on a daily basis with

this disease without some moron adding insult to injury. They will either take

care of the matter to your liking or prove to you that they are truly not worthy

of your business. Those dollars are harder to come by now so I'm betting they

will come across in a positive manner.

Deanna

[Guest guest]

Eileen -

If you do not get a satisfactory response from the manager you should

let us join you. After all, we all have an interest in knowing which

mattress store doesn't welcome people with arthritis! And, they need

to know (if they do not already know) that we are a large consumer block!

Michele

>

> My husband and I went mattress shopping today. We went into a local

> chain store. It went well and we were seriously considering coming

back <snip>

[Guest guest]

Ugh. How immature!

I would most certainly call the manager, as well as the district

manager. My ex used to work for the Mattress Firm, and I am pretty

sure that they would DEFINITELY fire an employee for behaving that

way. These places are all about sales, and if a manager/district

manager finds out something like this is happening they will (most

likely) do something about it. Lets hope so!

" OM Shanti " <nk_laurie@...>

[Guest guest]

,

Unfortunately I have no contact information for you, but I can offer you

moral support. It is a shame that so many parents run across doctors

that are of such little assistance and seem to lack compassion for their

patients.

My only idea is to search high and low for a doctor that knows about

in your area. I highly recommend both my pediatrician and my ENT

- but we are in North Atlanta, GA - so not much assistance I wouldn't

think. I'd be happy to ask my pediatrician via email, however, if he

knows of anyone in Northwest Indiana -- is there a specific city that is

near?

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, almost 15 months old - no fevers

[Guest guest]

,

Unfortunately I have no contact information for you, but I can offer you

moral support. It is a shame that so many parents run across doctors

that are of such little assistance and seem to lack compassion for their

patients.

My only idea is to search high and low for a doctor that knows about

in your area. I highly recommend both my pediatrician and my ENT

- but we are in North Atlanta, GA - so not much assistance I wouldn't

think. I'd be happy to ask my pediatrician via email, however, if he

knows of anyone in Northwest Indiana -- is there a specific city that is

near?

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, almost 15 months old - no fevers

[Guest guest]

,

Unfortunately I have no contact information for you, but I can offer you

moral support. It is a shame that so many parents run across doctors

that are of such little assistance and seem to lack compassion for their

patients.

My only idea is to search high and low for a doctor that knows about

in your area. I highly recommend both my pediatrician and my ENT

- but we are in North Atlanta, GA - so not much assistance I wouldn't

think. I'd be happy to ask my pediatrician via email, however, if he

knows of anyone in Northwest Indiana -- is there a specific city that is

near?

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, almost 15 months old - no fevers

[Guest guest]

Here's some contact information I found after doing a websearch (btw

I've started using www.goodsearch.com).

http://web1.tch.harvard.edu/views/june08/surgery_found_to_cure_mysteriou

s_unexplained_fevers.html

Schedule an appointment: 617-355-6460 or childrenshospital.org/oto

<http://childrenshospital.org/oto> (this is in Boston, I believe, but

they may have some suggestions for you?)

http://children.photobooks.com/directory/profile.asp?dbase=main & setsize=

5 & last=licameli & pict_id=2327109

And - after looking at a map (yes, my geography is awful) - are you

close to Chicago, IL?

Here's a link from some folks at Northwestern -

http://aapgrandrounds.aappublications.org/cgi/content/extract/2/4/39

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, almost 15 months old - no fevers

[Guest guest]

Here's some contact information I found after doing a websearch (btw

I've started using www.goodsearch.com).

http://web1.tch.harvard.edu/views/june08/surgery_found_to_cure_mysteriou

s_unexplained_fevers.html

Schedule an appointment: 617-355-6460 or childrenshospital.org/oto

<http://childrenshospital.org/oto> (this is in Boston, I believe, but

they may have some suggestions for you?)

http://children.photobooks.com/directory/profile.asp?dbase=main & setsize=

5 & last=licameli & pict_id=2327109

And - after looking at a map (yes, my geography is awful) - are you

close to Chicago, IL?

Here's a link from some folks at Northwestern -

http://aapgrandrounds.aappublications.org/cgi/content/extract/2/4/39

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, almost 15 months old - no fevers

[Guest guest]

Sorry to hear about your doctor! We live in South Africa and our ped had also

never heard of . He diagnosed virus after virus but the good thing is that

after about 6 months of this he agreed that it must be something else and that

he is out of his depth and referred me to a pred rheum who diagnosed Emma with

. I still use that ped who wasn't able to diagnose and he has always been

interested in learning and has given us scripts for steroids based on his trust

in my research. So you can find supportive doctors even if they don't know

yet. I think you need to go find a new ped!

Take care

Inga

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