Re: Senility in a 3-year old?

May 26, 2000

In a message dated 5/26/00 5:31:40 AM Pacific Daylight Time,

sfitzger@... writes:

> I just want my little boy back...the one who used to sing songs with me and

> talk to me and act like a

> normal child. I don't recognize this monster...he just seems very

mentally

> ill to me sometimes.

>

> Does this sound at all familiar to anyone? And if so, what did you do to

> control it?

>

,

Cory lost his speech at around age 3 1/2 too. You must find a healthy way

of dealing with this for yourself first before you can start helping your

little boy. I do understand (some/most of) the frustration that you are

probably going thru right now. The easiest and most helpful actions that I

took were learning simple sign language. Cory picked up the signs very

quickly and this lessened the " frustration " cycle immensely. The basics that

were (and still are someday) used most often were:

" more " , " yes " , " no " , " cookie " , " drink " , " go " , " out " and " up " . All of these

are so easy to physically do and can be extended ... like " cookie " stood for

just about any edible item ... used with the " yes/no " ... we still played

20-questions on a few things ... but the signs for " more, ...whatever " was

such a relief to learn/understand. After a few months we noticed that Cory

was " chirping " in sounds along with his signing activities ... so we just

went with the flow also ... speaking while signing. Eventually Cory would

drop the sign and just speak the word .. only reverting back to the sign as

needed for others to get a start on the conversation.

Cory's speech ... err rather I should say his *voice* has come back but it is

very impaired ... heck I'll take that over " no " disconcernable sounds

anyday!!! Cory is now 7 (almost 8) and there are several people who can

understand his speech (a couple of girls from his 1st grade class are better

at than I am .. which made for a TERRIFIC school year) with little to no

problems as long as they know the *subject* ... cold conversations are the

hardest to figure out but once you get the main idea ... it's not a lost

cause. We will be starting another leg of sign language (haven't decided

between ALS or AES) this summer. This time it will be more than the

rudimentary fundamentals since his *world* is expanding ... he is meeting new

folks of all ages these days and should have the ability to " chat " with them

without repeating himself 5-6 times till whoever finally catches up with him

<wink>.

My heart hurts for you ... from a Mom to Mom status ... it's all these

measurable losses that make us take a dip in Unreality that (for me) made it

hard not to realize that I don't have that Mommy-Magic that can kiss the

boo-boo all better. All the ranting and raving or loving and caring isn't

going to make all this *stuff* go away. Though to put it bluntly the ranting

and raving at the kids will make it much worse emotionally to deal with now

and in the future and I'm not even talking about how or if this might effect

your child I'm speaking from a purely Mom status. The memories that you make

with your child in your own head won't be able to be " hidden " ...they will

flash back up just when you least expect (and don't WANT) them too. You have

to decide within your own self which way will be the *acceptable* parental

actions. In this situation you must decide to walk to the left or to the

right .. trying to walk the balance beam in the middle won't do it .. if you

try doing both you really will loose it (being said from one that tried it!)

the energy levels for trying to be supportive and constantly being in the

cycle of feeling guilty for feeling remorseful about feeling guilty for being

guilty of being .... achhhh a never ending revolving door of emotions!!! Of

course having said all that I must add that this is my own personal opinion

and we all know what they say about opinions and rectums ... we all got one

and ...

Now on the medical front ... what are your doctors saying about this??? The

neuro should be able to offer information whether this is chemical imbalance

related (Cory did respond to Sinemet and Lodysn ...but couldn't stay on it at

the time due to vomiting ... phenagran was offered but we chose not to

incorporate that in due to the dystonia effects) or a part of what is

presently occurring (could it be muscle spasms, tone changes <either hypo or

hyper>) etc. I would also have the ENT do a structural looksee ... Some of

Cory's speech impairment is being chalked up to abnormally large

adnoids/tonsils (obstructive). At any rate both these doctors should be able

to refer you to a SLP(speech-language) that should be able to help reopen the

communication paths for your child!!!!! Be it sign alone, sign w/verbal,

pictures, comm units or Morse code for the grunts ... just something that

will alleviate the frustration of not being able to communicate for both of

you.

I can only speak for myself but this area was one of the tougher ones to find

a " happy/medium " with ... Zach often lost skills especially if he were just

getting/getting over an illness but would relearn how to do 90% of it within

a couple of weeks. Cory on the other hand rarely regressed on skills ..but

when he did only 20% of them returned any where near the skill level prior to

the " neuro-diving " . I been told by " folks " (usually after the 'I don't know

how you do it' <we all know that mind set>) that of the two they *feel* Cory

is the more involved of the two kids. I guess 'cause they are only looking at

the 'outside' physical traits (such as Walking/Speaking) ... whereas

medically speaking Zach's the one in more danger at this time yet he does

walk (ataxia) and speak (excessively well I might add) so the non-untypical

folks rate it differently ... I guess it does all boil down to " what ya know

from your own experience " .

Well, I'm sure I have over stepped the lines here ... I have a tendency to

ramble and should by now know to keep my big trap shut more often ... I

apologize profusely if I have crossed the line ...just know that I don't mean

it in a mean spirited way ... just from my own " heart " of thought

Take care and best wishes

Romona

http://members.aol.com/elf808

May 26, 2000

,

You are frustrated, terrified, and uncertain of what your

child and life are turning into. You are expecting a new

child any day now and you are trying to process and accept

what is happening to at the same time. It is an

extremely difficult position to be in. I know it breaks

your heart not to be able to communicate with like you

used to be able to--and I'm just as sure it is confusing and

frustrating and scary for him too. He is trying to

communicate with you in the only way he is able to at this

point.

It is not my way to tell people what to do--but I feel

strongly that you MUST find help for yourself and .

NOW! You and are both in a dangerous position, and I'm

sure you want to stop hurting your little boy. Is there a

relative, friend or teacher who could take him for a few

days or even hours) so you can have some time to regroup?

Can you ask his therapists or other parents about counselors

who could help you process your grief and learn new ways to

communicate and deal with ? You could also call Parents

Anonymous. They help people who are abusing their kids and

want to stop.

All of our thoughts and prayers are with you and .

--

Kailing

Mom of Adelaine (4) and Cecilia (3 months)

Ann Arbor, MI

j-cooper@...

http://www.mich.com/~jaj

May 26, 2000

Thanks for the note. No, there really is no one who can help me. 's

therapists don't understand this

stuff. They tell me they have never seen a child with speech regression and

don't know how to handle it.

My husband doesn't appear to be interested in helping me with .

follows him around the house

because he is infatuated with his Daddy, so he goes outside or anywhere to get

away from him. He spends

about 15 minutes a week with him; I am with him the rest of the time. My mother

tries to help but she,

just like everyone else, says that is too difficult to watch and can only

handle him for a couple of

hours. He is ataxic, so you have to follow him constantly or he will get hurt.

He doesn't like playing

alone, and demands attention/entertainment during all waking hours. My husband

says I should pay someone

to come in and help me with him, but I can't find anyone willing to watch him

because he is so difficult.

I don't mean he is a mean or bad child; quite the opposite: he is sunny and

delightful to be around. It's

just that he is so demanding and his grunting is so annoying that people can't

tolerate being around him

for very long periods of time.

I guess I'm really just mostly upset because I realize that this speech

regression and the broken blood

vessels that just appeared on his face mean that he is dying and may not be with

me much longer. I can't

stand losing him in pieces like this. Sometimes I think it would be easier if

he were dying of cancer or

something that is more predictible. This disease is almost like

Alzheimer's...the person is still there

physically, but they become a hollow shell. It's just so awful I can't stand

it.

Thanks for listening.

The s wrote:

> ,

>

> You are frustrated, terrified, and uncertain of what your

> child and life are turning into. You are expecting a new

> child any day now and you are trying to process and accept

> what is happening to at the same time. It is an

> extremely difficult position to be in. I know it breaks

> your heart not to be able to communicate with like you

> used to be able to--and I'm just as sure it is confusing and

> frustrating and scary for him too. He is trying to

> communicate with you in the only way he is able to at this

> point.

>

> It is not my way to tell people what to do--but I feel

> strongly that you MUST find help for yourself and .

> NOW! You and are both in a dangerous position, and I'm

> sure you want to stop hurting your little boy. Is there a

> relative, friend or teacher who could take him for a few

> days or even hours) so you can have some time to regroup?

> Can you ask his therapists or other parents about counselors

> who could help you process your grief and learn new ways to

> communicate and deal with ? You could also call Parents

> Anonymous. They help people who are abusing their kids and

> want to stop.

>

> All of our thoughts and prayers are with you and .

>

> --

> Kailing

> Mom of Adelaine (4) and Cecilia (3 months)

> Ann Arbor, MI

> j-cooper@...

> http://www.mich.com/~jaj

>

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by mitochondrial disease.

May 26, 2000

hi lauren,

Not real familiar with your whole situation, but have been following

threads. What do the docs say? Has your son ever had an overnight EEg - you

know, some kids will regress as the seizure activity occurs while asleep

and speech regression is quite common.

Wonder, if you have not already had one, if you could get a 24 EEG done on

your child. My son has no overt seizures but has lots of spiking especially