update on .....sick/Adhd/SSI/rare eye disorder

[Guest guest]

Hi all, well is doing better. The cough that was a dry hack has now

turned back into the wet goopy cough. We have clinic this month at Nemours, so

hopefully we will get some help, this cough has been going on for now about a

month and it goes from wet yucky goopy cough to a dry horrible hack. He has

been put on an antibiotic twice and put on an asthma medicine for it, but still

he has it. I am going to ask them to do a throat culture to make sure he

doesn't have some kind of bacteria growing. We have never had this problem ever

before, usually when he has been placed onto an antibiotic he is well within a

few days. This time it didn't work and that has me worried. Tomorrow we go back

to his pediatrician and follow up, so we will see. On another note,

lost over 5 pounds last month due to his adhd medicine, we have stopped that

medicine, His behavior was improved, but his health was affected, He just

refused

to eat, there was absolutely no appetite, so we opted to just deal with his

behavior, we have a behavior analyst that comes to our house once a week to

help us with 's behavior, She has been coming for about 7 months. We are

doing better in the home, school is another issue. It looks like I am going to

have to address his adhd in his IEP so that is protected in school.

Also we were declined for SSI, we have been battling for over 2 years, we were

at the last step on trying to get it, we saw a judge and let me tell you he was

a jerk, my attorney failed to get all the paperwork on 's diagnosis,

and the judge simply said if you can work you don’t need it. Let me tell you,

we are not well off, not even remotely comfortable. We live check to check, and

it’s pretty depressing at times. I and my husband before 's diagnosis

were pulling in over 60,000 dollars a year, after that, things just fell

apart. I left my job with Disney after 8 years of loyal service, due to they

wouldn't work with my schedule for all the doctor appointments. I refused to

allow

them to dictate what was important so I left. I have never regretted doing it.

and are the most important in my life; I will do what I have to

do to keep them safe, healthy and happy. Unfortunately, We were depending on

SSI to help us, we were planning to pay off our home with some of that money,

we only owe 1700.00 dollars and our house is ours=). But like I tell my husband

it will get better, I have high hopes for the New Year =) so we have a lot

going on right now, but were happy and healthy and I think that is what is

important. Remember awhile back I told you all about having problems

with

his right eye, like small seizures in the eye, well we went to see a

neurologist and he believes it is a rare eye disorder, is scheduled for

an EEG

next month, but he said it would probably show no signs of it. He said that

this eye disorder is so rare that they don't even know what causes it. I am very

confident that everything will be ok; things will start to look up for us.

Also, we had a referral set up to an occupational therapist for , he has

some delay in his fine motor so we are having someone to work one on one with

him, hopefully it will be soon so it can help him in school, also he will be

starting speech sometime next month. We are in the process of having him

evaluated for speech, 3 teachers have referred him for speech, so we know he

needs

it. Well I just wanted to let you know what’s going on in our family and hope

I

haven't rambled on too much. I hope all are well and that the New Year will

bring hope and joy to your lives.

, mommy of 5 years old w/cf/adhd/etc. and 2 years old no cf

[Guest guest]

Hi ,

I'm sorry to hear 's been sick, I hope they figure it out and find the

right antibiotic. You certainly are dealing with a lot. I have heard you just

need to keep trying for the SSI. I have never tried to get it myself, I have

just heard that on the lists a lot. I wish you good luck with all your issues

and keep your good attitude up. . Oh and don't worry about rambling, I

enjoyed your post!

love,

M

mom of Nick age 21 nocf , age 19 wcf and Lucy age 1 K9 very furry.

[Guest guest]

On another note,

> lost over 5 pounds last month due to his adhd medicine, we have

stopped that

> medicine, His behavior was improved, but his health was affected,

He just refused

> to eat, there was absolutely no appetite, so we opted to just deal

with his

> behavior

Our son in on Straterra. We tried Ritalin but he wasn't eating nor

was he sleeping and that was on the smallest dose of 5 mg first thing

in the AM. Does your doctor know you have pulled him off the meds

because of side effects? If so I would ask for a refferal to a

neurologist who specializes in ADHD. Sooner or later school is going

to get harder for him to deal with and that is wehre the meds really

help.

jan