New Here Too

[Guest guest]

>

> My daughter had gruesome and horrific thoughts at ages four, five, and

> six,

> so I certainly sympathize with you. She obsessed about cutting out

> her eyes

> with a sharp knife, and that she might have already bitten off a boy's

> penis. As disturbing as the content of bad-thought obsessions are,

> they are

> no harder to be rid of that any other OCD obsessions.

Kathy,

Do you mind sharing how you did CBT with thoughts only? My daughter had

obsessive thoughts about vomiting that were dibilitating, but she is

symptom-free with Prozac (2nd SSRI tried), so we never got around to the

therapy. She had very few compulsions that she got rid of within a week

with suggestions from the pdoc, but we never had to tackle the

thoughts. It isn't like rituals that you can do less or hold off on for

a minute, etc.

Thank you!

Dina

[Guest guest]

Hi Kimz,

I have to agree with you about Chris. She really seems to

know her stuff. I think she must have been a doctor in her previous

life!! Keep up the good advice, insight etc. It is so appreciated!

Marilyn in PA

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[Guest guest]

Hi Kimz,

I have to agree with you about Chris. She really seems to

know her stuff. I think she must have been a doctor in her previous

life!! Keep up the good advice, insight etc. It is so appreciated!

Marilyn in PA

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[Guest guest]

Thank you Marilyn,

I'm not sure that " know " as in " knows her stuff " applies though, LOL,

it's more just thoughts & things I've read and also learned from this

group & others (seem to learn more in these online groups than from

some things I've read!). I was such a complicated child/teen growing

up, I think I passed thru quite a few diagnoses myself! And then

this is the....5th? year since OCD appeared in our lives, sigh, and

it's certainly been a learning experience!

> Hi Kimz,

> I have to agree with you about Chris. She really seems to

> know her stuff. I think she must have been a doctor in her previous

> life!! Keep up the good advice, insight etc. It is so appreciated!

>

>

> Marilyn in PA

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[Guest guest]

Thank you Marilyn,

I'm not sure that " know " as in " knows her stuff " applies though, LOL,

it's more just thoughts & things I've read and also learned from this

group & others (seem to learn more in these online groups than from

some things I've read!). I was such a complicated child/teen growing

up, I think I passed thru quite a few diagnoses myself! And then

this is the....5th? year since OCD appeared in our lives, sigh, and

it's certainly been a learning experience!

> Hi Kimz,

> I have to agree with you about Chris. She really seems to

> know her stuff. I think she must have been a doctor in her previous

> life!! Keep up the good advice, insight etc. It is so appreciated!

>

>

> Marilyn in PA

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[Guest guest]

Hi Dina, that's great that your daughter is having such a wonderful response

to Prozac!

For bad thoughts the compulsion (behavior) is usually avoidance--of a place,

book, activity, whatever that a child thinks might kick them off. Or, once

they start, they do other compulsions or try to distract themselves and

avoid the bad thoughts. All this avoidance strengthens the bad-thought

obsession, making it come more often and be stickier than ever.

So the ERP for this is to hold on to the thought and hold off doing any

compulsion to stop/avoid it for longer and longer periods of time. Rather

than avoiding, kids can think the thought on purpose, and endure the anxiety

this causes until it falls. With repetition, the bad thought will lose it's

vigor and ability to frighten, and the thought will stop coming. OCD can't

keep scaring kids with a thought that they choose to think on purpose.

If your daughter were still suffering from an obsession that she might

vomit, exposures to think the thought on purpose could be imaginal

exposures, just talking about or writing down a " story " that includes all

the horrific details that are scaring your child--she does actually vomit,

at school, the embarrassment, etc. etc. She could draw a picture or watch a

movie where someone vomits. Once you get rolling, the ideas to expose to

the feared thought come fast and furious LOL :-)

HTH, if you have any other questions just post.

Kathy R. in Indiana

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

From: " Dina " <dina.n.jones@...

>> My daughter had gruesome and horrific thoughts at ages four, five, and

>> six,

>> so I certainly sympathize with you. She obsessed about cutting out

>> her eyes

>> with a sharp knife, and that she might have already bitten off a boy's

>> penis. As disturbing as the content of bad-thought obsessions are,

>> they are

>> no harder to be rid of that any other OCD obsessions.

>

> Kathy,

>

> Do you mind sharing how you did CBT with thoughts only? My daughter had

> obsessive thoughts about vomiting that were dibilitating, but she is

> symptom-free with Prozac (2nd SSRI tried), so we never got around to the

> therapy. She had very few compulsions that she got rid of within a week

> with suggestions from the pdoc, but we never had to tackle the

> thoughts. It isn't like rituals that you can do less or hold off on for

> a minute, etc.

>

> Thank you!

> Dina

[Guest guest]

My 9 yo son discharged from inpatient psych yesterday. Their

impression- #1 social phobia #2 selective mutism 3# Anxiety NOS #4

depressive disorder NOS #5 sensory intergration deficits # 6

Asperger's disorder by history- they wouln'nt FORMALLY diagnose due

to lack of ALL criteria being filled. He's exhibited self-injury and

aggression. He's on Abilify, Tenex, Metadate, and now Prozac. I'm a

bit concerned with Prozac as it's black-boxed for

children/adolescents. Attending psych wanted him to stay more days,

first time in 4 days I actually MET her, but I had to come home and

back to my job and medical insurance most likely not cooperative.. (

Hospital 2 1/2 hrs away from home - only ped psych unit ) Recommend

close observation on SSRI and " remove sharp objects " Ha ! Ha! "

I just know he must have AS as well as I think bipolar depression.

However,on the unit he was charmer, socially inept and quiet but

cooperative and NO meltdowns or tantrums over " life in general " . He

actually enjoyed the perfect ROUTINE- meals on time and his choice

etc. and Playstation we do not have a home. Pretty much a " vacation "

for him. Anything can set him off, and he's a master of " holding it

in " when he needs to, but home life-( occasionally school and in

public) is a constant struggle. The social worker on the unit

suggested I withhold any food but PBJ and remove him from all " family

life " - lock him in his room w/o any toys- until he completes

his " consequence " ( for anger, tantrum, or self-injury ) w/o

supervision. A bit ABUSIVE, don't you think -?? Social Worker stated

he's NT and suggests I'm the bad mom UGH !! So far today he's had

about 3-4 mini-meltdowns - and I'm being pretty strict. I'm

exhausted- this is going to be a long hard journey !!!

We are waiting for insurance to HOPEFULLY approve OT recommended ??,

and the OT knows of a PhD who comes into your home and observes and

gives suggestions for PDD kids. ( like the Nanny) Wonder how much

her services cost ??

Lots of faith and one day at a time !!

Kim

[Guest guest]

Hi, .

My kiddo is getting SCIG (IgG replacement subcutaneously, at home) right now and

I need to get back to her. But, I wanted to drop you a quick note and say that

you should feel at home here. Your child's " quirky " symptoms are common around

here. Usually, when the child's immune situation is well managed, they feel

better and can live a " normal " (ish) life. : )

This time of year gets a little busy so if you don't get responses, please don't

hesitate to repost and remember that there are some wonderful parents here that

will reply when they are able.

About your second note, the moms here tend to be really special and wonderful

(or learning to be) advocates. Many of the parents have nursed as a way to

comfort their children -- and longer than your average mom. But, there are also

many kiddos here that were on formula because that was best for their situation.

My understanding is that the moms milk can mess up the labs a bit...making the

IgG, in particular, a little higher. This is less of a problem (as far as

diagnosis) as the child ages and, if there are no protein intolerances, nursing

confers huge benefits.

Keep advocating for your daughter and asking questions.

Welcome.

mom to CVIDer

[Guest guest]

>

>

>

> About your second note, the moms here tend to be really special and

wonderful (or learning to be) advocates. Many of the parents have

nursed as a way to comfort their children -- and longer than your

average mom. But, there are also many kiddos here that were on

formula because that was best for their situation. My understanding

is that the moms milk can mess up the labs a bit...making the IgG, in

particular, a little higher. This is less of a problem (as far as

diagnosis) as the child ages and, if there are no protein

intolerances, nursing confers huge benefits.

>

>

,

Thanks for the welcome! I am so excited to talk to and hear

from other mothers who are walking this path of confusion. I phrased

my question wrong I think. I was wondering if it was common with PID

that children need to either nurse longer or be on formula longer than

a child with a healthy immune system. I just wondered if the medical

problems (like allergies or gastro issues) that go with it keep

children needing either fluid longer.

Thanks,

[Guest guest]

4 years old and still going here.

> >

> >

> >

> > About your second note, the moms here tend to be really special

and

> wonderful (or learning to be) advocates. Many of the parents have

> nursed as a way to comfort their children -- and longer than your

> average mom. But, there are also many kiddos here that were on

> formula because that was best for their situation. My

understanding

> is that the moms milk can mess up the labs a bit...making the IgG,

in

> particular, a little higher. This is less of a problem (as far as

> diagnosis) as the child ages and, if there are no protein

> intolerances, nursing confers huge benefits.

> >

> >

>

> ,

> Thanks for the welcome! I am so excited to talk to and hear

> from other mothers who are walking this path of confusion. I

phrased

> my question wrong I think. I was wondering if it was common with

PID

> that children need to either nurse longer or be on formula longer

than

> a child with a healthy immune system. I just wondered if the

medical

> problems (like allergies or gastro issues) that go with it keep

> children needing either fluid longer.

> Thanks,

>

>

[Guest guest]

;

about our kids needing formula or to be breastfed longer..i know in my

experience, my kaleb. who had severe GI reflux, was on formula until he was

almost two, then they switched him to whole milk, then they said he was allergic

to milk, so no milk at all..which was horrible because that was all he drank,

and then come to find out that he is not allergic to milk at all..(YEAH). He is

four now and still only drinks milk..and i mean a lot of milk..he would drink a

gallon a day if i let him.

Kamden, who just turned one, is being kept on the neocate jr. until he is at

least a year and half and then we see what happens.

Kaleb, and , who is 10, and was not diagnosed with any sorta of PID, both

had to have stomach surgery the reflux was so severe. they are now leaning in

that direction with the baby.

anyways..hope that helped a little.

angela

lg4275 <lg4275@...> wrote:

>

>

>

> About your second note, the moms here tend to be really special and

wonderful (or learning to be) advocates. Many of the parents have

nursed as a way to comfort their children -- and longer than your

average mom. But, there are also many kiddos here that were on

formula because that was best for their situation. My understanding

is that the moms milk can mess up the labs a bit...making the IgG, in

particular, a little higher. This is less of a problem (as far as

diagnosis) as the child ages and, if there are no protein

intolerances, nursing confers huge benefits.

>

>

,

Thanks for the welcome! I am so excited to talk to and hear

from other mothers who are walking this path of confusion. I phrased

my question wrong I think. I was wondering if it was common with PID

that children need to either nurse longer or be on formula longer than

a child with a healthy immune system. I just wondered if the medical

problems (like allergies or gastro issues) that go with it keep

children needing either fluid longer.

Thanks,

__________________________________________________

[Guest guest]

lg4275 wrote:

>

>

> Hi Everyone,

> I have been reading for the last couple of weeks and wanted to

> introduce myself as well. My family is new to the PID world and we

> found out in the last two years that there are tnree genetations in my

> family that have PID. My father has an IGM deficency, I have a

> deficiency but not an official name, and my two year old daughter

> also has an unnamed deficiency. My other daughter is 4 1/2 and she

> does not seem to have a deficiency, but has not been tested.

> My two year old was sick the first week she came home from the

> hospital and always appeared to have upper respiratory issues. I

> constatly took her to the doctor. Along the way we acquired

> specialists and she was diagnosed with Moderate to Severe GERD

> (reflux) at a month, intestinal issues that do not have a diagnosis

> since about the same time, acrocyanosis at three months, failure to

> thrive at 6 months, soy and dairy allergy at 7 months, was found to

> have sleep apnea and had her adnoids out at 8 months, and because

> eating was difficult because of her reflux she had a second round of

> failure to thrive at a year. She also has keratosis pylaris which is

> an allergic skin condtion and mild eczema. Her ear infections hit

> hard and fast at about 10 months and she had to have ear tubes put in

> to save her hearing at a year. We thought that this was going to turn

> things around and that is when the infections really hit. She had

> tons of sinus infections, ear infections, and got cellulitis while on

> an antibiotic. Sbe was tested and found to be immunodeficient at 18

> months and we have been trying to understand all that goes with that

> since. It seems that different doctors think different things and

> they put her through test after test. We are at the same point as

> Holly, we just want answers and to find out if there is anything we

> can do to get her well for at least small periods of time.

>

>

from Dale, Mom to Katy, CVID, grown and married

, Welcome to the group.

What you are finding is absolutely correct -- there's a lot of bad

information out there concerning PID and how it should be diagnosed and

treated. What I want you (and all the new people to understand) is that

in the last 20 years much progress has been made in the treatment and

diagnosis of PID. Most of the progress has been made as the Immune

Deficiency Foundation has become powerful enough to net some research

monies and do the surveys to get the information back that PID is not a

" rare " disease. It affects a lot of people. Thanks to internet groups

-- a lot of information is being passed around quicker than the medical

schools and medical text books. It is vitally important that you

realize that a lot of the information that is being discovered will take

10 years or more to get out to the medical community at large. We MUST

be active in our children's care.

Sorry -- I got on my bandwagon.

, your daughter is in a different age group that REALLY

complicates matters. Apparently before age 2, doctors are really

hesitant to diagnose and treat PID. That's because her immune system is

still developing. Tests before the age of two may or may not show a

permanent condition. She may have what is called Transient Hypogam of

Infancy or THI. I pray that that is the case. But, since you have 3

generations of PID in your family, I know you are leaning toward a

" real " diagnosis. It's really hard to wait and see what will happen.

But, many, many doctors want to wait and see. I think deciding on

treatment will depend on the severity of her infections and whether

there is risk of permanent lung or sinus infection.

It's really hard to wait. But, you are not going to get really good

answers until after that magic birthday. So, if you are getting

conflicting answers -- I think that's about par for the course.

Everyone is just guessing when it comes to treating children under the

age of 2. Some say treat and then trial off later, some say don't treat

and hope to avoid damage until after age 2. I'm sorry.

Keeping her well and away from contamination is going to be hard, but

essential until you can get definite answers.

May God bless you as you enjoy her day by day,

In His service,

dale

[Guest guest]

My son was diagnosed with positional plagiocephaly and we have

finally gotten him into a craniocap as of Thursday. He is handling it

okay. he is REALLY hot and there isn't much I've been able to figure

in the last few days to help him.

We live in MN and go to the Gillette Childrens Specialty Clinics. We

are fortunate enough to live within range of two. I am glad that we're

able to do something for him however I am having a hard time making

him so uncomfortable with the heat. Does anyone have any ideas?