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Without going into

> a whole lesson on functional analysis, I suggest that you ask whoever

> will be consulting/supervising/overseeing your ABA program to conduct

> a functional analysis to determine WHY your child is emitting this

> behavior. >

Jannine, we do not all have ABA programs for our children. Wouldn't it be

nice if it was available to everyone free of charge and there were enough

ABA trained personnel to work with each child. We have two teachers in our

district trained in ABA and one aide that I know of. Evan was lucky enough

to have the aide and the last teacher hired but they still do not get 40

hours of ABA

Stacie, when I took Evan to the pediatrician that has seen my own children

when they were little, I told him that I suspected that he had autism. He

made an appointment for him to have a sleep deprived MRI and several other

tests. If Dakota has not been checked out for seizures you probably should

have this done. I have heard a lot of stories like 's where the child

improved when things the child was allergic to were removed. I have heard

of children banging their heads because of the pain that they were going

through because of an allergy reaction. We did not have any luck with the

gluten-casein free diet and we tried it for a year. Now we are working with

the allergy elimination therapy. We still have not seen major improvements

for Evan's autism but have seen improvements in 's allergies.

I hope you can find someone to do the functional analysis that Jannine

suggests. Without it you are stumbling around in the dark.

Betty -61 yo, possibly Bipolar but undx'd, Effexor, Buspar

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Singular

Evan - 9 yo nonverbal autism on 4 mg Risperdal,

- 6 yo- Bipolar/ADHD/PTSD on Tegretol, Adderall, Clonidine .1 mg,

mother to -32 yo, their mom - Bipolar/ADHD on Topamax, Singular

wife to Bob - 71 yo, Effexor and too more many meds to remember

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The food allergies and ABA are all well and good and you should

pursue them to see if they will reduce the adverse behavior. BUT you

need to find something safe to prevent it now. Seeing a professional

may take a few days to a few weeks and this could be too long.

My son (85 lbs) used to bang his head when he became overly emotional

(both happy and mad). My son is extremely hyposensitive to pain, he

doesn't feel anything. After a few rounds of MTP, this issue has

been

greatly reduced, but he still does it when very angry. When I first

started I put my hand over where he was hitting. That was a big

mistake. My son became more angry, ran up to me, grabbed my head and

head butted me on several occasions, almost breaking my nose or

knocking out a tooth.

I discovered a way to protect him, and protect me, and

diffuse the situation. My son reacts very well to deep sensory input.

I would take my right hand (I am right handed, flip if left handed)

and put it thumb down like it was blocking the sun, and put this

quickly on my son's forehead. At the exact same time I would hook

my

left hand around the back of his head and put deep pressure on both

hands. Putting a hand on both sides kept him from pounding either

foreword or backward. I would wait a very small moment just applying

pressure, then I would quickly pull his head to my right shoulder,

cock my head towards his head and pull his head in close to mine with

the hand on the back of the head. With his head securely resting on

my shoulder with my left hand, my right hand was free and I would

hook it behind the back of his legs and cradle him in my arms. I

would then quickly and safely put him down on the ground and lay on

top of him. This gave him the deep sensory input he needed rather

then the sensory spikes he was inflicting, and I could bring him down

to a smooth landing. At first he would try to lift his head to head

butt me or slam his head back towards the floor, so I took a hand and

pushed his head firmly against the floor (hard enough to hold down,

but not do damage).

Eventually, he learned, once in this position, to calm down

because there was little else he could do until I let go of him. The

amount of time on top of him on the floor became shorter and shorter.

I do have to foot note this technique. I have 12 years of

martial arts training including pressure point and hold techniques,

so I do these moves instinctually. You may want to practice a few

times when he is in " non-meltdown " mode and make it fun. Also

if you

get him down during a bad time make it fun, tickle, distract, make

him laugh, or it will just be an ongoing battle between the two of

you.

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Stacie -

I don't have any big answers for your son, but I will tell you of my

daughter. used to throw such terrible tantrums. When she was

2 1/2, she threw herself so hard against me that when her head

connected with my eye socket, I ended up with a black eye - from my

2 1/2 year old daughter. My thought than was " how can I teach her

if she cannot behave? I need to teach her to behave. " Shortly

after that, her OT attended a seminar on Sensory Integration

Dysfunction. When Kirsten returned, she discussed brush therapy and

joint compressions with me. If you have not looked into it, please

contact an OT who knows about it. I agreed to try it with for

three weeks - got the school to agree to participate also and

started doing it every two hours (should be done every 1 1/2 hour to

2 hours, faithfully while the child is awake). After only 3 days,

we saw a major reduction in her tantrums and in particular, her head

banging. The sensory theory of the behavior is that the child is

seeking additional sensory input and because they don't register the

pain in the same way as a normal person, they don't " feel " the

pain. By giving them an overload of sensory experience, the problem

is greatly lessened. My thought was that if we continued it after

the initial period, it would be similar to giving her a drug to mask

the behaviors rather than doing anything to cure them, so we stopped

after the three weeks. The change has stuck. still tantrums,

but no where near what it was and can ofter be redirected.

But on the medical side, you might want to try and get a head x-ray

and look for dental problems or sinus problems - these are two other

common reasons for the head banging that because our kids cannot

tell us they hurt, are often missed.

Hope this helps.

> Hi all I am new here. I am Stacie married to earl I have two boys.

> Brad who is 7 and Dakota who is 20 months. He was diagnosed with

> pddnos. However I am wondering if he has aspergers but we are

going

> to be going thru evaluations for in home therapy. Actually I think

> it's called aba therapy. Anyway I have some concerns about his

> behaviors. lately it has been really hard on me. Last night dakota

> was mad and we were in the basement and he banged his head

purposely

> on the cement floor. I swear he was going to knock himself out one

of

> these days. He bangs his head on purpose. Hard too. He throws his

> body around. He climbs and I try to put him down or redirect him,

> Nothing works. He has already fallen from climbing and had to get

> 4staples. I don't know how to stop all this or even correct it so

he

> knows that he can't do it. Can someone give me some good advice.

>

> Stacie

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Hi Betty,

Thanks for your reply. In your post you said:

" Jannine, we do not all have ABA programs for our children. Wouldn't it be

nice if it was available to everyone free of charge and there were enough

ABA trained personnel to work with each child. "

It certainly would be great if all families could get the services they need for

their children, and the people trained to actually provide them, however I

realize that is not what happens in the real world.

In Stacie's original post she stated that she was currently having evals done

for ABA therapy, so given her current situation I felt that my suggestion was

appropriate.

Also the behaviors she was asking for help on have resulted in her child having

to get 4 staples, which I think might warrant professional help. I know that as

a parent she must be so frustrated, worried, and exhausted, I hope she and all

the parents in the autism community can get the help they need.

-Jannine

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Hi Betty,

Thanks for your reply. In your post you said:

" Jannine, we do not all have ABA programs for our children. Wouldn't it be

nice if it was available to everyone free of charge and there were enough

ABA trained personnel to work with each child. "

It certainly would be great if all families could get the services they need for

their children, and the people trained to actually provide them, however I

realize that is not what happens in the real world.

In Stacie's original post she stated that she was currently having evals done

for ABA therapy, so given her current situation I felt that my suggestion was

appropriate.

Also the behaviors she was asking for help on have resulted in her child having

to get 4 staples, which I think might warrant professional help. I know that as

a parent she must be so frustrated, worried, and exhausted, I hope she and all

the parents in the autism community can get the help they need.

-Jannine

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Hi Jannine!! Well let me let you in on a little secret. Our govenor here had

mentioned cutting out the inhome autism therapy from the budget. The state

pays for it. Well the trouble with that was the federal part cut back on

paying it in our state. I emailed the governor as I am sure alot of other

people did too. Our insurance does not cover really anything for autism or

developmental delay. And what burns me about that is that we pay such high

premiums for what?? they dictate what they will and will not pay for. I am

truely really scared to start the therapy for dakota only because I don't

know where the future stands on that. However my husband and I talked about

it and we decided no matter what dakota needs the help. I agree with you I

think all children should be offered these services. People don't understand

how much this can help the kids and as well as the adults too. It's very

frustrating because I have stressed my concerns all over the place and well

I am always feeling that I am not getting answers or the help I need for

Dakota. Yes it is very frustrating and he doesn't understand consequences.

Or cause and effect I should say. The climbing drives me absolutely insane.

And the outbursts where he hurts himself really scare me at times. I am not

even sure I saw your original reply to me yet. My email is coming in all out

of order. But I really do appreciate all your opinions and suggestions as I

am so new to autism. Today is actually a pretty good day with dakota. It's

not really all that bad. I hope you are all having a wonderful Day and

thanks to all for you advice and opinions. I truely do appreciate it.

stacie

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Thanks . Well the OT that evaluated dakota said something about brush

therapy but she had never called back to start it. So when we moved I

contacted to the birth to three or aka early intervention. And the preschool

teacher and I forget who else are coming out for more evaluations for him. I

am hoping that we can start the brush therapy. I don't exactly understand or

know what joint compression is. I have heard people talking about it. But I

really don't know what it is. I appreciate the input very much. Will

definately talk to them about the brush therapy.

Stacie

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Thanks . Well the OT that evaluated dakota said something about brush

therapy but she had never called back to start it. So when we moved I

contacted to the birth to three or aka early intervention. And the preschool

teacher and I forget who else are coming out for more evaluations for him. I

am hoping that we can start the brush therapy. I don't exactly understand or

know what joint compression is. I have heard people talking about it. But I

really don't know what it is. I appreciate the input very much. Will

definately talk to them about the brush therapy.

Stacie

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>

> Also the behaviors she was asking for help on have resulted in her child

having to get 4 staples, which I think might warrant professional help. I

know that as a parent she must be so frustrated, worried, and exhausted, I

hope she and all the parents in the autism community can get the help they

need.

>

> -Jannine

Yes, and I hope the help that she gets is more than the helmets that they

give the children who bang their heads around here.

Betty -61 yo, possibly Bipolar but undx'd, Effexor, Buspar

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Singular

Evan - 9 yo nonverbal autism on 4 mg Risperdal, 5 mg Abilify stated March

11

- 6 yo- Bipolar/ADHD/PTSD on Tegretol, Adderall, Clonidine .1 mg,

mother to -32 yo, their mom - Bipolar/ADHD on Topamax, Singular

wife to Bob - 71 yo, Effexor and too more many meds to remember

> -Jannine

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>

> Also the behaviors she was asking for help on have resulted in her child

having to get 4 staples, which I think might warrant professional help. I

know that as a parent she must be so frustrated, worried, and exhausted, I

hope she and all the parents in the autism community can get the help they

need.

>

> -Jannine

Yes, and I hope the help that she gets is more than the helmets that they

give the children who bang their heads around here.

Betty -61 yo, possibly Bipolar but undx'd, Effexor, Buspar

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Singular

Evan - 9 yo nonverbal autism on 4 mg Risperdal, 5 mg Abilify stated March

11

- 6 yo- Bipolar/ADHD/PTSD on Tegretol, Adderall, Clonidine .1 mg,

mother to -32 yo, their mom - Bipolar/ADHD on Topamax, Singular

wife to Bob - 71 yo, Effexor and too more many meds to remember

> -Jannine

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Hi Becky,

Welcome back!

Glad you had a good time & your Uncle Donny's surgery went well.

And wow, you even had guys hootin & hollerin at ya!

SEE! All that working out is paying off!

Amethyst

> Did anyone see that Fear Factor where they had to eat that maggoty

> cheese? I had a flashback to that show while eating my eggs/brown

> rice this am. I did manage to finish eating though.

> Upper bod wo done. Only 1 meal in though, I tend to gag at the

> thought of food too early and I wanted to get my wo done first.

> (It's only 11am here)

> Kathi, sorry I didn't make it to Meridian. We were back and forth

> from hospital to hotel to Uncle Donny's. It was a crazy wk. I

have

> some pics of my uncle and family if you're interested. I did think

> of you when I was in Idaho and we all waved at you when we passed

you

> on I84. Our hotel was in downtown Boise with a 2nd floor view of

> Main. It was hillarious watching the " cruisers " Fri/Sat night.

Some

> girls in the rms next to ours and above ours must have been

flashing

> the guys down below 'cause the guys were hootin and hollerin. The

> guys from the street yelled at us to show our " titties " , but we

> didn't want to scare anyone. lol Obviously they couldn't tell how

> old we were from below.

> Anyway, glad to be back to " real life " (whatever that is) and BFL,

> Becky

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  • 3 months later...
Guest guest

Dear Patti, we play we pay but usually worth every second eh? So happy to

see you. Smiles with love to you too. Melt

----- Original Message -----

From: " Lil Stills Girlie " <stillsgirlie@...>

> Hello all,

> I haven't really posted in a long time. I miss you guys!!! I have been

doing really good, not really stopping to think about much. Life is awesome!

I am feeling quite sore tonight. I have been out late for many many nights

in a row and yea! My feet and hands are swollen. I have a splitting headache

and I am so tired!

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Ya sounds like a full week hopfully u can settle back in to the old

rutine,glad to hear your dads a little better.You take care sounds like u need a

little break hope the weekend is uneventful for ya take care. d.Canada

hi all

Well have one more update, I hope this is the last one for a while.. lol..

Well dad is finally doing better.. What a weekend that was.. He finally came

home last night. Yea.. It was all of the meds that was making him very

delusional.. ugg..

Monday we went to the mountains and scattered my grandmothers ashes.. That

was pretty nice.. Then had a barbque at my mom's.. That was nice, but noisy...

lol.. I think that there was 25 of us there. Between aunts, uncles and

cousins. One good thing was one of my brothers came out from South Carolina.

Haven't seen him for about 5yrs. I have been soo stressed with my dad and

helping

my mom with things around the house to get everything ready. Then doing

things

with my brother and them. I have really worn myself out this past week and a

half.. Didn't make it to work today, had a fever, pain and whole lot of

swelling.. I am watching out for another flare. I didn't do anything today,

just

slept all day.. and relaxed tonight.. Finally caught up on all my emails..

lol.. I am going to try the work thing tomorrow though and see how I feel.

Don't

want to over due it though, but I don't have much of my FMLA left and I don't

recertify until September so I have to becareful with that also.. Well

goodnight all and hope everyone is having a pretty good day/night.. Love you

all

Kelley in Colorado

Kelleyak31@...

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Wow! Kelley and Hi! How are you? I hope all is well! Ummm....It sounds like you

had a long week, hopefully you find some time to rest soon!

Luv you always!

Patti~Canada

hi all

Well have one more update, I hope this is the last one for a while.. lol..

Well dad is finally doing better.. What a weekend that was.. He finally came

home last night. Yea.. It was all of the meds that was making him very

delusional.. ugg..

Monday we went to the mountains and scattered my grandmothers ashes.. That

was pretty nice.. Then had a barbque at my mom's.. That was nice, but noisy...

lol.. I think that there was 25 of us there. Between aunts, uncles and

cousins. One good thing was one of my brothers came out from South Carolina.

Haven't seen him for about 5yrs. I have been soo stressed with my dad and

helping

my mom with things around the house to get everything ready. Then doing

things

with my brother and them. I have really worn myself out this past week and a

half.. Didn't make it to work today, had a fever, pain and whole lot of

swelling.. I am watching out for another flare. I didn't do anything today,

just

slept all day.. and relaxed tonight.. Finally caught up on all my emails..

lol.. I am going to try the work thing tomorrow though and see how I feel.

Don't

want to over due it though, but I don't have much of my FMLA left and I don't

recertify until September so I have to becareful with that also.. Well

goodnight all and hope everyone is having a pretty good day/night.. Love you

all

Kelley in Colorado

Kelleyak31@...

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Hi, Janet,

Not a silly question at all. I don't know the answer, but would love to find

out. What a great idea. I want to try this. I hope someone knows.

Hi all

Hello to all! I just joined & I must say this seems like a very

knowledgable group. I have just started making lotions, bath salts, &

mp soap. I have lots more I want to try, but one thing at a time LOL

Ok I have a really silly question, so please don't laugh. I am trying

to find different things I can add to my mp soaps. I had thought of

fruit but was told that would not work. My question is, can yogurt

with fruit be added to the mp soap & if yes does a perservative need

to be added? Thanks for any help & I will be reading past messages, so

I can learn, learn, learn! Thanks for letting me join.

Janet

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  • 1 month later...

Hi Caroline,

You see.............I never got that post about you not feeling well or

Kamari breaking her arm.

I hope you are feeling better by now and that Kamari isn't in too much pain.

Thinking and sending good thoughts to both of you.

xxoo,

Carmen

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Dear Cara, we are sorry to hear of your migraines. I hope they decide to

leave you soon. And give my love to Kamari. She must be in so much pain.

I hear stress fractures can be bad. Good luck on the hunt, I don't think

you will get anyone to join you. Hopefully you feel better. Much love and

big hugs, just loving words for Kamari. Melt

----- Original Message -----

From: " C J " <blacklionent@...>

> Just a quick note, I have been having migraines all week. Today I had the

sweating syndrome again on top of a headache, IBS, nausea and vomiting. Ee

Haw, we're having fun now! I was taking a nap when the school called. My 13

year old 8th grader, on the second day of school had apparently broken her

arm playing soccer.

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Hello,

Since you didn't sign your post and I'm old and forgetting e-mail addresses,

I don't know to whom I am responding. But.......yes, I think 40mgs. of

Prednisone is a high dose. I think if you've been on it for a while you will

have

to reduce slowly. Sometimes, I would start at 60mgs. but lower it quickly,

like in a few days. 60 for three days, 50 for three days, 40 for three days,

etc. etc.

Great news about your Oncologist and I hope you continue to get better and

better and start enjoying pain free days.

Mi. Carmen

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Hello fellow Stilligan,

No, I don't feel like 40mg is too much. I have been actually stuck at 30

for 3 years now, so don't feel bad. It is good news that you got a clearing

from the oncologist. This is great news. Hope that you are well.

Love, sue #2

-- hi all

I havent posted in a while. I finally got the clear from the

oncologist. No more seeing him. My rhuemy just upped my prednisone

to 40 mg a day and he wants to keep me on the plaqenuil a little

longer. I am still recieving the steroid shots everytime I go see

him. Not to sure about all these steroids. I dont wasn to have a

hard time coming off of them. IS 40mg a day a large dose?

I hope everyone is having a pain free day.

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Forgive me if I am wrong, was your name Dennis? I am very glad to hear you

don't have cancer. Often it takes a bit of time to find medications that

work as everyone is so very different and with different degrees of Stills.

I wish you the best and that time goes quickly if it means you get better

and better. Have a good evening, Melt

----- Original Message -----

From: " CplBrock " <dbrock119@...>

> I havent posted in a while. I finally got the clear from the

> oncologist. No more seeing him. My rhuemy just upped my prednisone

> to 40 mg a day and he wants to keep me on the plaqenuil a little

> longer. I am still recieving the steroid shots everytime I go see

> him. Not to sure about all these steroids. I dont wasn to have a

> hard time coming off of them. IS 40mg a day a large dose?

> I hope everyone is having a pain free day.

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  • 2 months later...

Hi CZ! Nice to hear from you.

Hang in there, and take care of that hand.

Love,

> hi guys. i am having internet problems again. i can't load web

pages and the

> telstra people are messing me around again about fixing the phone

line. i

> hope it will be fixed soon but i'm not holding my breath. i have

been in a

> bad flare here so i have not been keeping up with much and my house

is a pig

> sty. the birdies are doing well and my tiels have fertile eggs but

i am not

> so well myself. yesterday i was trying to bend a pair of scissors

so it

> would cut better and the handle snapped and scissors cut my hand

quite badly

> my home help crisis team said they had no staff and told me to

call an

> ambulance or get a cab to the er since it was at night time. they

are

> supposed to have staff to help 24/7 and it is silly to call an

ambulance for

> a cut that is not life threatening and then i would have a $600+

bill and

> use up an ambulance that somebody else might really need and i know

the

> ambulance service here is struggling and response times are slow

because

> they have not enough ambulances or funding. so i put a teatowel

around my

> hand and when it slowed down i put some toilet paper on it and my

wrist

> splints that i wear at night then went to bed. when i got to the dr

this

> afternoon they said its too late to stich the cut and that it would

make

> more of a mess if they tried so they put this sticky stuff on it

and a

> bandage and they told me that it will leave a nasty scar because it

didn't

> get stiched properly. my home help case manager was not very happy

when i

> told her that the crisis team refused to respond and she said that

the

> crisis team lady had told her that i rang up but i wanted to see

the dr in

> the morning which is rubbish. the dr this afternoon gave me a

tetnus needle

> and now my right arm is very sore and weak so i am finding it

painful to

> type. i just wanted to check in with everyone and say i didn't

disappear. i

> am behind on email so i have not seen all the posts but i notice

heather and

> sandra posted and i am very glad to see you both here. i will try

to catch

> up with posts in the not too distant future to see how everyone is

doing.

>

> CZ

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  • 6 months later...
Guest guest

& Russo i just wanted to say Hi I live in your area I workedd

for attorney Accomando for a little while now I am with someone more

experienced (just so you know who I am Laurie) My 10 year old daughter

Breanna (nick name Breezy has been sick all her life starting with asthma

when she was born which then became ulcers acid reflux, sinus infections,

chronic double ear infections, rashes, high fever 105.00, malignant

hyperthermia, the list goes on and on it has been a ling ten years but she

is beautiful with a great personality as everyones kids get older you are

going to have alot of problems with the schools systems I am living it now.

It is bad enough that she is sick all the time and I did not have a solid

diagnosis, but I am battling the school for an education that they do not

want to give her, they did not and still do not believe she is sick they

harassed her doctors to the point that the specialist bailed on me I had to

leave the area to find a new one, she is supposed to start treatment soon

(in the next week or so) I still do not know anything about it how long or

how much will it take to make a difference can anyone tell me

Laurie L . DeSouto

l.desouto@...

203-730-1556- home office

203-942-9513 - cell phone

203-797-8961 - fax

-- Hi all

Hi everyone,

Welcome to all the new members. You have picked a great group for info and

support. I see a lot of you are giving brief histories for everyone new,

that is a good idea.

My name is and my husband Tom and I have an 8 y.o. dtr . Her

history is different in the way that she has developed her immune disorder.

She started out getting sick at 2 mos, ears at least twice a month, they

would treat than within a week of being off abx another infection would

start. Once her sinus' formed, she started with sinus infections on top of

the ear infections. She was tested for CF, she was neg, but it turns out she

is a carrier, having one gene( don't know where that came from). Her immune

disorder was diagnosed at around a year as Hypogammaglobulinanemia( I had

this as an infant and child and received IMIG for 5 years, now I'm fine but

do pick up quite a few infections per year, I need to be rechecked, but no

time for Mom right now). Between 2 and 3 they retested her and her numbers

had come up, all except her IgA, so now we are IgA deficient, she also doesn

t make titers to all her vaccines( no titer to HIB, a few to Pneumovax and

Prevnar, she has a problem with the polysaccharide coated ones) at one point

one Immuno also called her Polysaccharide Immune deficient. As I said her

numbers came up but barely in range, never really very much into range,

something like 20 points into the lower range. anyway, so we have dealt with

that for several years, with constant infections, prophylactic abx,, many

missed school days, parties, family events and so on. This year has been one

of her worst, she has missed approx 60 days( might be more by now) of school

a lot of infections etc. We FINALLY talked her Dr's into a trial of IVIG,

knowing they can't replace IgA but to try to give her a chance at a " normal "

life, less infections, less fatigue. She had her first infusion in May, Wed

is her next one. We actually did see a diiference in her with her first

infuaion. Less fatigue and she was not saying " I don't feel good " every

morning like always. But boy into the third to fourth week, she is back to

being her " normal " not feeling good self. They retested her before the IVIG,

they were supposed to do subclasses but just did her total IgG and IgA, well

surprise, she know has CVID. Her IgA has come up( it will be retested again

to see if that is real) and her IgG is down below normal. So now at least

they can't say no to the IVIG after her 6 month trial. So we h ave been

through 3 different Immune disorders in 8 years. Crazy. she also has asthma

and GERD, as well as poor growth. As tough as it is, she is the greatest kid

in the world. She is truly a joy to be around( except when she is feeling

bad, than watch out) but I am really amazed how resilient these kids are.

It may be tough at times but don't despair, we all get through it. I h ear

so many times that God doesn't give you anything you can't handle. Well, I

ve wondered about that many times. I love my daughter and do what is

necessary to make her life a good one. We find different ways to do things

if she is tired and just have a good time being a family. I think with all

this we have become a much stronger, loving, compassionate family. We have

found a new church that is like a family to us, and we have this group, who

are always willing to listen, advise, support and just be there for each

other.

One other thing, I am not good at figuring out how to send pictures, I know

some of you have web sites etc. So if any of you get Consumer Reports

magazine, there is a picture of and I in the July issue, for the

Recall article. That way you can see my pumpkin.

Take care all. Mom to - CVID, asthma, GERD, chronic sinusitis

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Guest guest

& Russo i just wanted to say Hi I live in your area I workedd

for attorney Accomando for a little while now I am with someone more

experienced (just so you know who I am Laurie) My 10 year old daughter

Breanna (nick name Breezy has been sick all her life starting with asthma

when she was born which then became ulcers acid reflux, sinus infections,

chronic double ear infections, rashes, high fever 105.00, malignant

hyperthermia, the list goes on and on it has been a ling ten years but she

is beautiful with a great personality as everyones kids get older you are

going to have alot of problems with the schools systems I am living it now.

It is bad enough that she is sick all the time and I did not have a solid

diagnosis, but I am battling the school for an education that they do not

want to give her, they did not and still do not believe she is sick they

harassed her doctors to the point that the specialist bailed on me I had to

leave the area to find a new one, she is supposed to start treatment soon

(in the next week or so) I still do not know anything about it how long or

how much will it take to make a difference can anyone tell me

Laurie L . DeSouto

l.desouto@...

203-730-1556- home office

203-942-9513 - cell phone

203-797-8961 - fax

-- Hi all

Hi everyone,

Welcome to all the new members. You have picked a great group for info and

support. I see a lot of you are giving brief histories for everyone new,

that is a good idea.

My name is and my husband Tom and I have an 8 y.o. dtr . Her

history is different in the way that she has developed her immune disorder.

She started out getting sick at 2 mos, ears at least twice a month, they

would treat than within a week of being off abx another infection would

start. Once her sinus' formed, she started with sinus infections on top of

the ear infections. She was tested for CF, she was neg, but it turns out she

is a carrier, having one gene( don't know where that came from). Her immune

disorder was diagnosed at around a year as Hypogammaglobulinanemia( I had

this as an infant and child and received IMIG for 5 years, now I'm fine but

do pick up quite a few infections per year, I need to be rechecked, but no

time for Mom right now). Between 2 and 3 they retested her and her numbers

had come up, all except her IgA, so now we are IgA deficient, she also doesn

t make titers to all her vaccines( no titer to HIB, a few to Pneumovax and

Prevnar, she has a problem with the polysaccharide coated ones) at one point

one Immuno also called her Polysaccharide Immune deficient. As I said her

numbers came up but barely in range, never really very much into range,

something like 20 points into the lower range. anyway, so we have dealt with

that for several years, with constant infections, prophylactic abx,, many

missed school days, parties, family events and so on. This year has been one

of her worst, she has missed approx 60 days( might be more by now) of school

a lot of infections etc. We FINALLY talked her Dr's into a trial of IVIG,

knowing they can't replace IgA but to try to give her a chance at a " normal "

life, less infections, less fatigue. She had her first infusion in May, Wed

is her next one. We actually did see a diiference in her with her first

infuaion. Less fatigue and she was not saying " I don't feel good " every

morning like always. But boy into the third to fourth week, she is back to

being her " normal " not feeling good self. They retested her before the IVIG,

they were supposed to do subclasses but just did her total IgG and IgA, well

surprise, she know has CVID. Her IgA has come up( it will be retested again

to see if that is real) and her IgG is down below normal. So now at least

they can't say no to the IVIG after her 6 month trial. So we h ave been

through 3 different Immune disorders in 8 years. Crazy. she also has asthma

and GERD, as well as poor growth. As tough as it is, she is the greatest kid

in the world. She is truly a joy to be around( except when she is feeling

bad, than watch out) but I am really amazed how resilient these kids are.

It may be tough at times but don't despair, we all get through it. I h ear

so many times that God doesn't give you anything you can't handle. Well, I

ve wondered about that many times. I love my daughter and do what is

necessary to make her life a good one. We find different ways to do things

if she is tired and just have a good time being a family. I think with all

this we have become a much stronger, loving, compassionate family. We have

found a new church that is like a family to us, and we have this group, who

are always willing to listen, advise, support and just be there for each

other.

One other thing, I am not good at figuring out how to send pictures, I know

some of you have web sites etc. So if any of you get Consumer Reports

magazine, there is a picture of and I in the July issue, for the

Recall article. That way you can see my pumpkin.

Take care all. Mom to - CVID, asthma, GERD, chronic sinusitis

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