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,

My son was in special education because of behaviors and that made a

HUGE difference. Is it related to ? I don't know. When he turns

three years old: You can contact your school district (community

education) and they will do an evaluation for you. If he qualifies

qualifies the school will give him education- attend school at no

expense to you and they will transport him as long as he lives in that

school district. Do I want a child with a " special ed " label? No, but

it was the biggest blessing in our lives and he will fall off his IEP

and won't qualify for services after this year (the IEP's last only

three years and he is doing great). You can also have a him on an IEP

(individual education plan) for " other health issues. " I don't know if

the IEP for OHI can be done at 3 years old, but I would look into this

option. My son was at special ed 4 days a week and they also paid for

him to attend pre-school 3 days a week. His IEP this meeting might be

the end of services for behavior reasons, but I will be discussing the

OHI IEP so if he does miss a lot of school he is covered by his plan.

Prior to turning three years old you can contact your school district

and they will evaluate him and they can do services in your home with

your son. This is also free. These are federal grant funded program

because it costs more to do these programs when the children gets

older. They are happy to do this.

My personal theory is possibly your son is not getting the same degree

of developmental needs being met as your other children because your

child is sick. In a young childs life, missing one week of their life

being sick isn't a big deal, but take all those weeks out of one year

and you really are missing opportunities you have with your other two

children. This is only a thought- take it or leave it. Sometimes it's

just temperment. I also have three children with strong wills, but my

son with goes off the charts with strong will. He

has " variations of temperment " according to the psych department at

Mayo Clinic. Only 5-10% of kids have this, but it basically means he

experiences everything with stronger emotions. Best of luck and I hope

if you do decide to do anything I mentioned you send an update. I had

no regrets getting my son what he needed. I cried through the process

and it's humbling, but I made the decision his needs outweigh my

pride. I knew he wasn't happy with himself either when he was out of

control. The school loves him, he is also a gentle child when he is

not challenging a lot. We also have in in Occupational Therapy to help

us with sensory issues he has and helping him to learn to calm down on

his own. Regards, Lynn

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First off I have to say that I am very thankful for this site! After

almost 3 full years of battling the symptoms with my 3 yr old son we

finally were able to get a diagnosis of in May of this year. He

had a T & A 2 days after the diagnosis but unfortunately still cycles.

Although the symptoms are less severe.

Not that long ago I posted a message asking if anyone else's child had

some of the other symptoms my son had along with the classic ones. He

has a history of low white cell counts, and peeling finger tips. This

past week he was seen by a geneticist at Tufts Floating Hospital for

Children in Boston. Turns out he has another condition called Chronic

Familial Neutropenia a.k.a. Leukopenia. This explains his other

symptoms. Unfortunately, because of the second condition it makes it

difficult to determine if the cycles he is still experiencing are from

the or from the Leukopenia. Needless to say it is very sad and

frustrating.

Now, as far as behavioral problems are concerned...I was approached by

the director of my sons daycare this past week as well and told that

it was believed to be in his best interest to have an evaluation. Of

course this was the last thing I wanted to hear! He had a very rough

transition originally when he started back in August. For the last

month he has been aggressive and unresponsive to discipline. The

aggressive behavior is only seen at daycare with the other children.

He does not act this way at home. He does however, have a very strong

will and discipline is difficult sometimes. I am worried about the

evaluation and having him " labeled " . I'm concerned because of how much

is unknown about the and the effects on their behavior. I would

hate for them to group him in the ADHD category if he is not and this

is just something related to the . I did read on one of the

websites that there are instances of neurological behavioral issues

and social issues in children, but it didn't elaborate on this.

For those of you going through the same thing, I am very interested in

hearing what the professionals come up with, as well as any stories

you would like to share.

Thanks to all who post. This group has been very helpful during these

trying times!

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First off I have to say that I am very thankful for this site! After

almost 3 full years of battling the symptoms with my 3 yr old son we

finally were able to get a diagnosis of in May of this year. He

had a T & A 2 days after the diagnosis but unfortunately still cycles.

Although the symptoms are less severe.

Not that long ago I posted a message asking if anyone else's child had

some of the other symptoms my son had along with the classic ones. He

has a history of low white cell counts, and peeling finger tips. This

past week he was seen by a geneticist at Tufts Floating Hospital for

Children in Boston. Turns out he has another condition called Chronic

Familial Neutropenia a.k.a. Leukopenia. This explains his other

symptoms. Unfortunately, because of the second condition it makes it

difficult to determine if the cycles he is still experiencing are from

the or from the Leukopenia. Needless to say it is very sad and

frustrating.

Now, as far as behavioral problems are concerned...I was approached by

the director of my sons daycare this past week as well and told that

it was believed to be in his best interest to have an evaluation. Of

course this was the last thing I wanted to hear! He had a very rough

transition originally when he started back in August. For the last

month he has been aggressive and unresponsive to discipline. The

aggressive behavior is only seen at daycare with the other children.

He does not act this way at home. He does however, have a very strong

will and discipline is difficult sometimes. I am worried about the

evaluation and having him " labeled " . I'm concerned because of how much

is unknown about the and the effects on their behavior. I would

hate for them to group him in the ADHD category if he is not and this

is just something related to the . I did read on one of the

websites that there are instances of neurological behavioral issues

and social issues in children, but it didn't elaborate on this.

For those of you going through the same thing, I am very interested in

hearing what the professionals come up with, as well as any stories

you would like to share.

Thanks to all who post. This group has been very helpful during these

trying times!

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Im reading these posts and is so emotional. She is in tears over

little things. She is always tired and she has mood

swings. " everything sucks " is the best way to describe it. She eats

very little. Nibbles most of the time and is exhausted. She is now

in day 3 of a mild episode but her pain is through the roof. She has

a mild fever, mouth ulcers, and pain in her hips, back of knees and

shoulders. Lower back as well. I only do the pred when her fever is

much higher.

She just had an episode not but 2 weeks ago.

Im also wondering if stress has anything to do with the episodes.

is the " Make up my school work Queen " and is always stressed

about it. We had meetings with all her teachers last week and she

was worried about it. Now , 5 days after, she is in another episode.

Anyone?

Thanks

Marcie

New Jersey

, 14

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  • 3 months later...
Guest guest

,

I was curiuos to hear more information about your son and his expressive

language delay. I just had a meeting yesterday with a team that determined my

son had the same issue. He is going to have special services to see if they can

help " catch him up " ...I was sifting through some of the posts and came across

your response. I am curious to see just how many children have

developmental delays. I know there are alot with behavioral issues which my son

also has. Have you had any answers from your dr's on this?

Thanks,

(mother of Austin 3 1/2)

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Guest guest

Hi, My son is also late talking. He has been late walking and other things. In

the beginning I thought it was all the fevers who made him late but now I am not

so sure...

Interesting to hear if any of you have the same thoughts.

Have you had any answers from your dr's on this?

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Guest guest

Hello

Our son was a late talker, but meeting and/or exceeding on his receptive

language. Our speech pathologist does believe that frequent illnesses at such

an early age(8 months when his fevers started)can impact a child's language

development. The earlier that the fevers start for some children, the more

challenging it is to progress, as the time between 6-12 months is a such a

critical time for language development.

Again, every child is different and many factors can contribute to speech

delays. The fact that we see our child making " good " progress is a positive

sign to us. We are also fortunate to have family members in the speech

pathology profession, so they act as a valuable resource for our family.

Regards,

Sent on the TELUS Mobility network with BlackBerry

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Guest guest

too was a late talker, but that was b/c he had fluid in his ears that

would not drain. When he got his T & A he also got ear tubes. Right away his

verbal skills improved. He is now on track w/everyone else and in some areas

ahead of schedule, such as showing early musical talent (but that might be

genetic, as I started playing the violin at 4).

He is very social and well behaved. We could not wish for more, no concerns

here.

Sent from my BlackBerry® smartphone with SprintSpeed

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Guest guest

My daughter has been fevering since at least 18 months and we suspect earlier.

She is ahead of the game on talking, in fact she never stops! Then you give her

prednisone and she talks like an auctioneer. She is also a puzzle mastermind

far surpassing her older brother and doing puzzles above her age. She fits

to a T and her cycles are very concrete. she does show some neurological

" issues " , one unexplained seizure, not related to a fever and headaches prior to

each episode. I don't think the fevers have mental effects unless they get

really high (like 107) and are not treated. we never let hers get higher than

103 anymore. If motrin/tyl combo does not work, I take her to the ER to reduce

the fever under their monitoring. If your child has closer fevers than every 3

weeks or so, the mental effects may just be from lack of opportunity to

stimulate their environment because they are always sick. Just my thoughts!

Stacey

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