Diane

[Guest guest]

Of course, trampoline, why didn't you know??? That's hysterical. It sounds

like Kody is always thinking!! I'm so happy to hear that his T-ball game was

GREAT. What a boost for him. Well, hang in there. If you need to talk, you

can e-mail me--we've been through two of the sinus surgeries. Have they

tried Prednisone on Kody for his sinuses yet?

Sandi, 's Mom

[Guest guest]

Diane, My son Lucas is just starting Depakote for his mood disorder. They

believe he is bipolar. I was interested in you comment about the anger. We

are giving it to him because of his anger. We have been cautioned about his

immune stuff and the possible effects of a drop in his immune response. We

are doing weekly blood test for now to see how he does. He is dipping in his

Neutrophils and his WBC are dropping slowly. How much is your son taking and

how old

is he? Lucas is 6 and has dysgammaglobulinemia, with selective antibody

deficiency, ? CVID no one will say at this time. He has had low IgM and no

IgA,and moderately low about 400s IgG as well as no response to the

pneumovax. He does ger IVIg every three weeks. I am assuming that your son

is taking it due to seizures. I am understanding that bipolar is possibly low

level seizure disorder in the Lymbic part of the brain. Who knows but I have

not seen any improvement yet. He has only been on it for a week. BARBIE

[Guest guest]

Yes, Kody is always thinking! You just never know what he is going to

say next! ) No, they haven't tried Prednisone for the sinuses yet. I

think because he has had bad reactions to it in the past. Nothing life

threatening,but it makes him very very angry, which is something his

depakote does to a lesser degree. Awhile back when he was having trouble

with his asthma, the doctor told me that he wasn't comfortable mixing

the prednisone reaction with the depakote reaction, so I am assuming

that is why he isn't trying it for the sinuses. I'll be sure to ask

though the next time I talk to the doctor. Too bad by the way about the

lady with her sick kid in the well child side of the waiting room. We

had that problem frequently too, but for the last few years it is noted

on Kody's chart that we get brought back to a room immediately. We wait

our turn like everyone else, just in privacy of our room. It works well

for us that way.

Diane, Mom to Kody

[Guest guest]

Hi Diane,

You sound discouraged to say the least. I know how you feel!!! I am feeling the

same exact feelings you are right now. Our IEP meeting is Friday and am NOT

looking forward to that. Hannah and hasn't made any progress this year. I

have been to the school and sped director and still feel like I am not making

any progress. Their teacher is so NOt there is is impossible to have a

conversation with her. Anything I tell her goes through one ear and out the

other. Needless to say, my girls will not be in her class next year. I am up

there talking to her at least once a week but it's useles. I have told the sped

director my concerns and he has had the principle sit in and observe her class.

The girls have regressed since she has been in there!!!

The only thing I know to do is to make sure their IEP's for next year are better

and to figure out the best placement for them all. All of our kids!!! The parent

duty is hard huh??!!!!

Hang in there it will get better! It just has too!!

Pam mom to Hannah (DS) and (DS-ASD) age 6

dben937342@... wrote: In a message dated 5/6/02 1:52:28 PM Eastern

Daylight Time, duffey48@...

writes:

> If Rochelle does pull off the blanket, she has

> completed a circle of communication.

>

>

>

She will do some of these things. I think I may have given up on interacting

with her. We use to spend lots of time doing things. Maybe she got bored.

After being rejected I found it easier to just not try. She loves to be

chased. She will offer a kiss if you play with her and get really close. She

thinks you want a kiss. But you have to earn it. They are not free. I need

some of that AFFECT that you have Donna.

I love you guys I know I haven't been online much because I feel overwhelmed

right now. The doctor visits, the out of compliance school. Wish I had not

signed IEP now. Making calls to Sped director and Cluster Coordinator about

staffing issues. The Principle says there is over staffing but everyweek

someone is out and no replacements. I feel like I've lost another year with

Rochelle. She is learning the PECS sytem in speech once a week but not in

class. She needs to be in a small class. I don't know what to do. I will look

at other schools this week. I did meet another parent in Rochelle's class who

is just as frustrated. That is the only good thing about school that has

happened this school year. Ok getting the duel diagnosis helped. I feel like

I am in slow motion. You all are an encouragement to me.

Diane (mom to Rochelle 5 asd/ds and Danny 8 ld)

[Guest guest]

I had trouble with Tegretol XR so my neurologist switched me to Trileptal

which causes NO side effects; not even fatigue. Perhaps that might be a

possibility for you too.

In Him,

Diane

> Hello,

> Does anything besides Depakote work for Kody? I was wondering why they

are

> willing to put him through the behavior changes if there are other

options.

> I'm guessing it works well for him seizure-wise? I had the same problem

with

> Tegretol--I was not a very nice person while on it. Much better on

> phenobarb, but more tired of course! Oh well, it's always something with

> these meds. It's just my opinion, but seizure meds seem to be one of the

> worst class of drugs for side effects.

> As for the Prednisone, it can make kids more aggressive, mean or

unhappy.

> Also moody and more emotional. I was told it is because it is a hormone.

If

> you ever have to use it on Kody, it helps to have only a small dose for a

> short time. It does sound like it would be a bad combination with

Depakote.

> Take Care,

> Sandi

>

>

>

[Guest guest]

HI!

The depakote works great for Kody seizure wise. And from what I

understand, and trust me, I could have this wrong because the whole

neurology thing is very confusing, but the reason why the doctor hasn't

changed the med because of the behavior issues is because depakote is

works for all types of seizures. And the other meds some of them only

work for certain types of seizures and not for others. And since Kody

has all different kinds of seizures he needs one that encompasses the

whole spectrum. You know, I remember the neuro saying he didn't like

Tegratal, I just can't remember why. Kody was on phenobarb once before.

It made him zombie like!!

Diane, Mom to Kody

[Guest guest]

Never heard of triliptal, does it come in pediatric doses? I will check

into it. Thanks!

Diane, Mom to Kody

[Guest guest]

Diane,

True about the seizure meds--some don't take care of all different types of

seizures. My phenobarb only takes care of the gran mals, but not the every

day garden variety. It did make me zombie like for the first three months,

but it paid off.

When you find a med that works so well, like Depakote for Kody, it's hard

to think of changing. That's why my doc argues with me. If it works, don't

fix it. Plus, I always worry that if I try something else, and it doesn't

work, will the phenobarb work as well the next time? It took me a long time

to gain control of the gran mals. I just got taken off the state driver's

license medical review--because it's been five years!!!!! Yeah!!!

Sandi

[Guest guest]

Yes, it does come in peds does. Children 4 - 16 should initially start

with 8 to 10 mg/kg/day not to exceed 600 mg/day. I got this information out

of my Drug Handbook. Let me know if you have any more questions.

In Him,

Re: Diane

> Never heard of triliptal, does it come in pediatric doses? I will check

> into it. Thanks!

> Diane, Mom to Kody

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

Ok we are in the middle of trying tegretol for Bipolar disorder which it is

unusual to get a diagnosis this early but we have known that there have been

significant behavioral problems since very early on. Lucas is very bright but

has had alot of panic attacks, anxiety, ( he saw a paxil commericial and

asked me if that was what he had and would that medicine help him?) anger,

violent outbursts with very poor impulse control actually scary and then he

goes into depression and that he shouldnt live and would I kill him. It is

very pathetic. I am a nurse and have worked with kids for years. I originally

thought that maybe all the illness and not feeling good was the cause but

after several years of counseling and different diagnosis including sensory

integration the have come to the conclusiion that is bipolar and that

treating early will reduce the number of emotional complications that become

set if you wait. It is amazing because he seems to keep it together in public

except for lots of anxiety about going to kindergarten. We switched to

private school because I could not get even the basics at the public school

to keep him safe. And because he only cried in school and had panic attacks

they determined it must be our parenting. It has been defiantly a very

difficult year.

So the reason I am saying all of this is because we are using tegratol to try

to improve his severe mood swings. They believe that it may be related to a

seizure like activity in the Limbic part of the brain that then causes the

neural hormones to go out of whack. I remember hearing about the studies from

Rainbow children's hospital about 80% of boys being depressed but wondered if

there was more information out there.

Secondly, I am interested to know if anyone else has seen problems with

Tegratol and decreasing WBCs and neutrophils. The psychiatrist is doing blood

work 2x week to follow them. We have only been on it for 10 days. I am told

this is one of the side effects. We have not previously had problems with

Neutropenia. They are not super low but they are consistently dropping his #

of neutrophils to about 1300 or 1.3 and and his percent to 29 . His WBCs have

dropped to 4.1. I should have some more results tonight. He has also been

having a cyclic fever as high as 104 lasting only 24 hours with not other

symptoms except joint pain. This has happened 3 x in the last nine weeks on

the week before his IVig infusion . He gets 15gms, and all of his immune

levels looked great pre infusion atleast before two infusions ago. I asked

them to retest him prior to starting the Tegratol. Have any of you had

similar situations. Lucas is adopted so we do not have much family history .

We adopted him at birth and Iove him with all my heart but this is a bit much

for our poor little guy to go through. Thanks for listening. BARBIE Lucas 6

Dysgammaglobulinemia, selective antibody deficiency and probable CVID etc

etc.

[Guest guest]

WOW, five years; I can only imagine that. I am guilty about not being

medically reviewed because I have not mentioned it to the licensed bureau

about my seizures. Before you go crazy, it's important to understand that I

know well in advance of an impending seizure. I have a couple of auras at

least an hour in advance and sometimes the seizure stops at the aura,

sometimes it continues to a partial seizure and sometimes it advances into a

grand mal but I haven't had a grand mal in a very long time.

It is hard to switch meds. But because of the severe side effects from

other meds I really had no choice. I have been told that if this medication

does not work, I will be looking at surgery which is the LAST thing I will

ever consider.

In Him,

Re: Diane

> Diane,

> True about the seizure meds--some don't take care of all different types

of

> seizures. My phenobarb only takes care of the gran mals, but not the

every

> day garden variety. It did make me zombie like for the first three

months,

> but it paid off.

> When you find a med that works so well, like Depakote for Kody, it's

hard

> to think of changing. That's why my doc argues with me. If it works,

don't

> fix it. Plus, I always worry that if I try something else, and it doesn't

> work, will the phenobarb work as well the next time? It took me a long

time

> to gain control of the gran mals. I just got taken off the state driver's

> license medical review--because it's been five years!!!!! Yeah!!!

> Sandi

>

>

>

[Guest guest]

how often is Kody infused? Every 3 or 4 weeks?

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

Thanks Ursula. Kody is 4 days away from an IVIG treatment. So too close

to be safe, huh? I don't know anything about the VZIG just that the

doctor referred to it as being an IV. You may be right, either way, I

sure hope Kody doesn't have to go through it! Kaila is loving the

attention from her Grandparents, so I am sure that she'll be fine there.

Diane, Mom to Kody

[Guest guest]

Sandi, Kody has complained of leg pain and weakness in his legs in

relation to siezures, but usually only after having a big one. Let me

know how your neurologist appointment goes.

Diane

[Guest guest]

So he's at 2 1/2 weeks postinfusion. According to what we've been told by the

local ped and the doctors at Duke, he

should be covered. What type of t-cell deficiency does he have?

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

Ursula, he is infused every 3 weeks. This friday would be the day.

Diane

[Guest guest]

Ursula, Kody has a variation of Di and IgG subclass def. I am

glad that he is covered by the IVIG, that makes me feel a whole lot

better!!!

Diane, Mom to Kody

[Guest guest]

Thanks Sandi! I was so prepared to stick to my guns and insist on what I

wanted for Kody. Even the psychologist said that the school most likely

wouldn't like her recommendations and that I may have to be very firm

and demand it. Everyone I talked to that has experience with this sort

of thing said it was going to be so hard. But they talked, and I

listened and I never once had to object to anything or even make a

suggestion. They either totally were in agreement with the

psychologist's recommendations or exceeded them! And the letter from the

he psychologist was only faxed there this morning and they said they

didn't even have time to read it yet!! I am just stunned. And now even

more thankful that I live in this school district. When we bought this

house I was so sure that this is where God was leading us to be. I am

even more sure now!! I haven't told Kody yet, first because I am not

sure how to explain the whole thing to him, and second, I just don't

think he'd understand. But he will be surprised and absolutely love it

when Miss Pierson comes to our house!!

Diane

[Guest guest]

Sandi, Your welcome! Someone sent it to me from a list I just joined

for Kody's learning disability I just had to send it on to all of our

friends on the list. Besides, I love Dr. Suess! ) Kody's tee

ball games with the IV is going well. I can't tape it down very well

because he is so allergic to tape (even paper tape now) so I bought some

stretchy form fitting undershirts (the muscle shirt kind) and really

when worn under his shirt it holds the IV catheter pretty securely and

has helped keep the tape we have to have covering the port secure too.

We also have him sit in a lawn chair, still with his team but not

getting bumped and rough housed on the bench. Also, after one close call

where he almost got hit in the chest with a ball, and one close call

colliding with another boy in the outfield, we thought it best if he

doesn't play in the field. He does bat the ball and run the bases

though. That is his favorite part anyhow. One of these days I'll have to

scan a picture of him playing tee ball and send it to you!!! Thanks for

asking!!!! How's ?

Diane, Mom to Kody

[Guest guest]

Diane,

I'm so happy Kody is playing. I would love a pic anytime--please send one.

also loves these pics, as he can see that there are other kids like

him.

Bri is doing okay. Physically, he is quite well these days. Just a lot of

allergy stuff, but not many infections. But emotionally, the possibility of

surgery is wearing on him. It's hard to hold him up and tell him everything

is fine when I'm shaking on the inside! He is just more emotional than

usual. So, if everyone feels like praying for , Tuesday is the day we

find out if he has open heart this summer. It's hard to see him be scared.

I do plan to have him ask the Cardiologist any questions he has (except

where the valve comes from). I especially want him to ask regarding pain--I

hope that will calm his fears.

Have a great weekend--

Sandi, 's Mom

[Guest guest]

Praying for on Tuesday! Also that he (and you) have peace about

the surgery itself.

Diane, Mom to Kody

[Guest guest]

Diane,

I thought of something when I read your e-mail. You're right, they should

ABSOLUTELY check his heart. It's important because if he has even a small

murmur that hasn't been noticed before (like one that can be seen on an echo;

but not heard), he will need antibiotics before visiting the dentist or any

other invasive medical procedure. I'm glad you're pushing them--go, Diane,

go!!!

Sandi

[Guest guest]

Sandi, I can send you the pictures. I have to zip downstairs first

because I transferred them to my other computer (I use my lap top most)

because I wanted to print them out. No problem! )

It does seem like it has been forever for Kody. I'm not sure who is sick

of it more, him or me. I think he does deserve a medal, at the very

least a lighted Hercules sword! ) I'll keep you posted when I get the

results of the ct scan. I am going to mention the steroids. After

everything I have learned so far of Di there is a lot I need to

talk to his Doctor about. Like, thymus testing (to my knowledge it has

never been tested) and his heart (obviously nothing major is wrong or we

would know it by now, but it has been said that some of them are mild

enough not to be noticed).

Okay....sending pictures your way in a little bit! Oh, they will be

coming from my other email address so if you see

" withlovefromdee@... " it is me!!!

Diane, Mom to Kody

[Guest guest]

> I'm glad you're pushing them--go, Diane,

> go!!!

> Sandi

ROFL!!! Thanks Sandi!!!! You all are such great cheerleaders!!!

Diane, Mom to Kody

[Guest guest]

You know, I have no idea how they knew it was yeast. Either they tested

for it specifically, or it was just found. Knowing my ped, he asked for

it. It does smell nasty (you could smell it on his breath) but then

sinus infections do smell nasty. It was just mentioned to me as a

possibility because antibiotics are known to cause yeast problems

although usually in the diaper area or in the mouth. And then they told

me that it came back as the same infection with yeast as well. I can't

for the life of me remember which antibiotic they switched him to for

that, but I do know that the wrong antibiotic can make a yeast infection

worse. Maybe if you just mentioned it to your doc he would know how to

take it from there? Finding a new doctor might be a great start to

setting up a protocol for Maddie! Get crackin'!!! )

Diane,Mom to Kody