Re: /Hospitalization

[Guest guest]

Hi ,

You betcha and guilty! Once you're on this list you should not have

to deal with this alone. We all walk in similar shoes so we can

relate and we would hate for any of our kids not to be understood.

Plus we are here to support any way we can. This really hurts me to

read that everyone seems to be giving up on . Well, I too could

say guilty as I too almost did give up on when I had similar

issues when he was younger. I too, thought he was going to be

hospitalized when he had reached 12 y/o. I won't repeat my story but

I wanted to let you know that I've contacted my DFW buddies and I'm

awaiting for any of their replies to see if they have any answers or

solutions to assist or guide you towards some referrals. I

would write more with questions but I'm sort of pressing for some

time and I'll keep you posted on any further info later, ok. Take

care.

Irma,16,DS/ASD

> Hi Irma,

>

> Always there to help me, aren't you? You're a doll! There is no

rhyme or reason to 's behaviors...it is now at school and home.

He used to save it for mostly when he got home. Worsening of

behaviors are seen in the afternoon at school after lunch and

continuing until he goes to bed at night. We have seen the

aggression, irritibility more this year than any other. Before, it

just looked like ADHD, with him being on the go all the time, but

never really moody or aggressive.

>

> The teacher is keeping a behavior log for MHMR, who are keeping

tabs so that can get bumped up for additional services, thank

God. His caregiver and me are also keeping logs. He had a good

spell for two weeks, where he was an angel at school and even got

the best student of the week award! I was shocked! He was

compliant, respectful, on task, and very delightful to be around.

>

> Then, after this two weeks of good behavior, he started to slowly

spiral downhill. Nothing was changed in his routine at home or at

school. He became cranky non-compliant, moody, tearful, very

aggressive on the playground, disruptive in class, pulling papers

off the bulletin board, throwing his shoes and socks across the

room, totally different child!

>

> It was then I began to pick up on the bipolar disorder, and bought

the bipolar child and the explosive child books. fit BP to a

tee! They can also have ADHD as a co-morbid disorder, which makes

it harder to dx.

>

> Dr. Capone had told me two yrs. ago that he could be bipolar. I

dismissed this at that time, thinking is not aggressive or

depressed. He said it may get more evident the older he gets...boy,

was he right! BP shows up differently in kids than adults but the

criteria in the medical books will not list them separately, so this

is why many doctors mis dx BP in kids, saying they are ODD, ADHD,

OCD, etc.

>

> I am fed up with the doctors I have seen so far, they are so put

off by his down syndrome dx. I am convinced they would treat him,

had he been a typical child with these behaviors, and not have the

DS dx to boot. They just don't want to deal with it, or become

flustered because they have other patients who are fine on the same

meds as .

>

> There are plenty of med's hasn't tried, even though it sounds

like we've tried everything...and there are new ones that get

approved every day. If there were a place nearer that would do

inpatient services, I may consider it, being nearer to him. But

Austin? No way.

>

> Irma, send me any info you said you had. Any and all input is

greatly appreciated. I may even contact Dr. Capone again.

Ironically, several of the doctors we've seen already are experts in

BP (I had looked up this info. on a BP kids website!!) but of

course, they do not deal with developmentally disabled kids, and

that's a big difference.

>

>

[Guest guest]

Hi ,

Can sort of relate. I have taken Zeb to so many dr's. It goes from bad to

worse and to think that I have to pay for this. and Zeb are about the same

age. I know puberty has a lot to do with behaviors. They can have some strange

behaviors during this time. I also have difficulty because of the DS. I don't

remember my typical son doing what Zeb does during puberty. He also runs hot

and cold. He can be great for a stretch and then all hell breaks loose. I have

to be one step ahead of him always. It can be exhausting. I would keep looking

for the right dr. I feel the same I would never place Zeb anywhere without

me. I took Zeb off of all drugs. They seemed to make things worse and I am not

into experimenting anymore. The last time he ended up with vocal tics. The

psychiatrist said it was impossible to have DS/OCD and a tic disorder together.

He

had never seen anything like that. The vocal tics were drug induced,dah, but

he insisted he had it all along but was brought out by the drug.The OCD got so

bad that I couldn't get to the car unless I started 2 hrs early so he could

inch the beanie babies to the car with him. I thought I would loose my mind. I

could also go on and on. Keep looking.

Charlyne

Mom to Zeb 11 DS/OCD/ASD?

[Guest guest]

Hi ,

Well, no word from the DFW buddies just yet, but if you are serious

to hear my verse on the alternative route your welcome to see if

this will help . Plus take advantage asking the school district

for assistance besides the teacher logging his behavior, now its

time to take some action to request for an ARD meeting to request

for some interventions and in order to determine this is to ask for

evaluations.

Us moms with kids with problems like this carries a tremendous

emotional load. Sometimes the weight of the problem seems too much

to bear, and the presence or severity of the problem is denied in

order to cope. Us parents try to recognize the severity and then

search and search for better answers to a difficult situation.

Remember I'm no medical professional and do not have all the answers

but have been exposed in observing alot. Hopefully something will

help to understand better. Then pick and choose which you would

like to battle or just to rule out any hidden underlying causes or

just to know " what if " ?

Many of the behavior you've described could mean lots of reasons as

he has shown some good days and I've witness some kids with the same

issues who have gone the route I'm going to share with you which

could play a role in helping which he can benefit from. Not

100% but at least to some extent where he does not have to be

hospitalized.

I'm glad to hear that 's teacher is keeping a behavior log, I

hope his services with the MHMR gets bumped up, this will help him

alot. Now, that you've mentioned MHMR contact them and ask about the

GR Funding, (General Revenue Funds), this is for ages 3 and up. You

would like to speak to an E & E (Eligibility and Enrollment)

Caseworker, its a different department. The E & E Caseworker will

guide you through these steps to determine eligibility for . I'm

pretty sure he will be, these are extra funds aside from what he is

already receiving which are for additional services, included with

this is Behavioral Supports: No age limit. This program provides

psychiatric evaluations, counseling services, medication follow-up

and rehabilitation services such as anger management, skills

training, or behavioral management for consumers. What is not

mentioned on what I just wrote above, the E & E Caseworker had

mentioned that the behavior consultant will also do some In-home &

Parent training which is part of the counseling. Make the call

tomorrow at least to get the ball rolling and the paper work going.

Luck.

Most pediatricians, family doctors, and psychiatrists will not see

anything wrong even when you know it exists. Some teachers do not

always realize the nature of the problem, that goes for some of us

parents as we cannot understand just what is going on inside our

child, but when observing our child we are more likely to see the

problem. Right? As you've noticed that most physicians will test the

child with medical procedures and then tell the parents that nothing

is wrong. But, then ask yourself, " How can he be so much trouble if

there is nothing wrong? " This is where one of the evaluations at

school you are going to request for an OT or PT who is trained in

sensory integration can help answer these questions. If the school

district's OT or PT are not trained request for a referral for an

outside therapist where the school district should help fund wise.

Now, once evaluated and they find out that he has sensory

integrative problems, it will help to recognize what is going on

with his brain. Brain? Because that is where the problem occurs and

that is what therapy changes.

You could check out books at the library on:

Medical & Surgical Care for Children with Down Syndrome...A Guide

for Parents Edited by D.C. Van Dyke, M.D., Mattheis, M.D.,

Schoon Eberly, M.A., and Janet , R.N.,Ph.D.

It mentions on Chapter14... Neurology of Children with Down

syndrome, Mattheis,M.D., plus there is more like on the

Thyroid Conditions and Other Endocrine Concerns in Children with

Down syndrome, P. Foley,Jr.,M.D. The list goes on like the GI

Tract, etc.

Why am I mentioning this is because kids with Down syndrome have

decreased muscle tones and the list goes on as us parents might wish

to know and understand some of the medical conditions that some of

our children with Down syndrome experiences.

Do not forget to check out http://www.ds-health.com

The next book to check out would be The Out-of-Sync Child

Recognizing and Coping with Sensory Integration Dysfunction by Carol

Stock Kranowitz,M.A.

Do not expect your doctor to know about or look for sensory

integrative disorders, learning problems, or even minimal brain

dysfunction. These are not covered in a standard medical school

education. There are some physicians who have specialized in

pediatric neurology who will be able to detect the problem and help

the child.

http://www.waymanlearningcenter.com/Wayman%20Learning%

20Center_services.htm or http://www.waymanlearningcenter.com/

Email Gail Wayman or call her and ask for OT/SI or any other

services that you will see on her website if the school district can

not provide someone that specializes in the areas needed and I'm

pretty sure she would not mind or one of her staff personnel whom I

have notice are also good could consulting with the school district.

Read her site. Yes, you could tell her I had referred you from " The

lady whom she met from San and met her in Austin and out in

Colleyville/Grapevine. "

Another site to glance or keep on file would be

www.behavioral-Innovations.com, Bill and his wife who runs this

center are also wonderful people that could also assist when it

comes to the Behavior Intervention.

Behavior Management, is receiving this at school or as In-Home

training from the school district? This is something else to be

considered and applied on his IEP goals. I'm pretty sure this has

been addressed. Was a Functional analysis done?

" Children with Down sydrome respond to behavior management

techniques as well as any other children. The most important facet

of behavior management is to look carefully at communication and

appropriateness of expectations as possible causes of problems. "

Make sure paraprofessionals receive some measure of training, even

if it is in the form of an in-service provided by a lead teacher.

Something else that I've learned from my fellow Behavior Consultants

is that educators must put this meaning to the side when writing

down " Child is non-compliance. " Because every negative behavior

covers a whole range of developmental behavior. A behavior

consultant must work with the student and teacher analysis why the

child is misbehaving? The reaction of his environment.

Is on any special diet? Is he gluten-free? Did you not mention

he was tested for Celiac Disease? Something I read about this

recently was. " Its estimated three million or so Americans who

suffer from celiac disease, a digestive disorder that's triggered by

gluten, a common protein found in wheat, barley and rye. The disease

causes a variety of symptoms including diarrhea, cramps and severe

pain, and can lead to vitamin and mineral deficiencies, osteoporosis

and other serious illnesses.

www.celiaccenter.org/taskforce.asp under Labeling Rules Likely for

Food Allergies by Kissel

This is where Dr. Rao out in Plano comes in where a food sensitivity

and a vitamin deficiency testing could be done.

An example like lack of Vitamin B-12 and Folic Acid, behavior

noticed are irritable, mood swings, feeling run down, insommia,

depression, fatigued, etc. Once identified, this supplement is taken

than it helps restore energy, helps restore the nerves, function

better. It helps the brain, the spine, bone marrow, inside the blood

vessels, and can prevent or decrease Alzheimer. Do not take my word

this requires a medical professional to test and observe as

vitamins/supplements could also harm the liver if not taken properly

and Dr. Rao could run the testing and recommend something for .

Another book to check out would be Children with Starving Brains by

Jaquelyn McCandless,M.D.

http://www.autism-rxguidebook.com/DesktopDefault.aspx

If you consider this please give Dr. Rao's office a call as there

may be a wait on appointment wise.

Sorry this is long,something else to read

http://www.enzymestuff.com/dietsgfcf.htm

You could try this in the mean time for about a week, with I

do this every other night.

Epsom salt baths-

Most people use about one or two cups per tub. Dissolve the salts in

hot water first and then fill the tub to about waist deep, as warm

as possible. The amount of salts you may find works best will depend

on the individual tolerance, the temperature of the water, and the

size of the tub. The warmer the water and larger the tub, the more

salts will dissove. If you see negative reactions, such as

irritability or hyperactivity, then decrease the amount of salts.

You may need to start with as little as one tablespoon of salts, and

work up gradually. Epsom salts baths are very calming for most

people. This works well just before bedtime. Most guides say to soak

for about 20 minutes or more. It is okay to let the salts dry on the

skin. You may notice a dry clear-white powder. If it is too itchy or

irritating, just rinse it off. If the skin feels too dry, use lotion

or oils to moisturize. Loose stools may result if children drink the

bath water.

I have another recipe should you perfer a homemade lotion.

This is from The Practical Guide for Digestive Enzymes.

(Should you notice the bath water on his second or third

treatment/bath turning grey, its alright, the salt than is doing its

job, disposing toxic from his system).

What I've share is only speaking as a parent wanting to help you as

much as possible and hopefully some encouragement of what is

available. There is just too much and it could get overwhelming. But

remember you're doing it for . Well, I tried to shorten it as

much I could so stay posted with any updates should you contact

anyone.

Oh, before I forget another person to contact from Keller Support

Group for parents of children with ASD's. Contact Lori Zinar her

email address is rizinger@... She has great education and

community info around the DFW area. I believe she is also an R.N.

Plus do not forget at the Healthy Approach Market you have a wide

range of Gluten and Casein-free foods out there.

www.healthyapproachmarket.com

Once again I apologize this was long but keeping my fingers crossed

that you will get some support.

Take care,

Irma,16,DS/ASD