Mental effects of PFAFA

[Guest guest]

I can't believe the similarities of our experiences! We just moved to

Madeira, Portugal after 6 years in Croatia.

I suspect my only son has but am still waiting for results of

blood tests & a diagnosis.

He's almost 7 and he gets out of control, hyper & throws long tantrums

when mad and frustrated.I noticed the frequency and intensity of these

behavior increase before and after his fevers.

Funny, because my mother (who we only see once a year) also mentioned

to me more than once about calling the " super nanny " and my mother-in-

law(who we also see just once/twice a year) suggested that I seek

psychological help, not to evaluate our child, but to find out what I

am doing wrong.I can't tell you enough how my child's behavior is

blamed on me.

Anyway, aside from the behavior & fevers,I also noticed that he has

periods when he gets " mental blocks " . He seems to forget a lot of

things that he normally knows. Like he doesn't recognize alphabets that

he normally recognizes or can't read words that he can normally read.

He also has moments when he is unable to learn anything despite lots of

repetition & help.Even his teachers noticed this. He has periods that

no matter how they try he doesn't seem to learn anything and other

periods when he is so quick and sharp.

Does anyone else have any experience on the effects of on

learning abilities?

Any suggestions & recommendations on what I can do to manage this are

welcome.

[Guest guest]

Hi,

Your post about memory just made me remember something someone recently posted.

A mom on here posted that her child has a lot of memory loss, which I think has

been documented and tested. I'm sure she'll chime in here. I think it has

something to do with the high fevers.

As scary as the thought is, it really is no suprise. A fever as frequent and as

high as these kids get cannot possibly be good for their developing brains.

I must say that my son has a VERY mild temperment. Other than these fevers he

really has been a dream child and extremely easy to raise. However, he has also

been very clingy and inconsolible when being cared for by anyone other than his

mom and dad. I have a good friend with a very sick little boy (life

threatening) and he also is very clingy. We have come to the conclusion that

they are clingy because they are never feeling well and want that comfort.

Maybe it just manifests itself differently in different childern...some act out

and some won't let you out of their sight. From their perspective feeling

miserable most of the time it's no wonder why they can be difficult. I know I

can be a terror when I'm stressed or not feeling well.

I have to comment that after my son's T & A, he has been a complete joy and we can

finally have sitters. It is very clear to me that he is feeling completely

different. When he was a baby, we always noted how he never smiled and always

looked so " serious " he was always so somber and would not get excited over much

of anything. As odd as it sounds, he seemed like a depressed baby, and we had

to work so hard to make him smile. However, after surgery, you would NEVER

think that about him. He is always happy and excited, the way a child is

supposed to be.

So in reading everyone's stories of the behavior problems they are having, from

my perspective, I just think that these kids are in pain and just feeling really

crummy. I don't think they need to be labeled (unless of couse there is a

problem unrelated), but I really think any evaluator would have to seriously

take into account that many of these children are sick, which is probably a lot

of the problem.

My heart goes out to the parents we are being blamed for these problems and

parents who feel they can't leave the house. If its any consolation, when we

visit friends who's kids are misbehaving or when we see kids in public who are

misbehaving, I don't judge the mom & dad. I honsetly feel really sorry for the

parents b/c I know they get terribly embarrassed. Its easy to be an ArmChair

General, but until you have to live a day in the life, we all need to refrain

from passing judgement.

[Guest guest]

None of us can fully understand what our children are going through.

A doctor once said to

imagine have the worst flu symptoms we've ever had and then multiply

it by 100. And that's just the physical symptoms.

It's alot for a child to handle going from doctor to doctor; being

different from other children; missing out on minor fun stuff to

major fun stuff;

people asking you questions that doctors can't even answer, just to

name a few of the issues that face our kids.

As a parent I still, after 25 years get emotional when my son is

having an episode, imagine what it's like for a small child to try to

understand what's happening.

With all of that being said, we tried VERY hard to not treat our son

any different that our other children. That can be difficult but I

believe it's very important for the

emotional development and well being of a child with .

Kathleen

Mom of 25 yrs old ( since he was 4mos.)

On Nov 10, 2008, at 7:36 AM, jac.lauri wrote: