Update on

May 2, 2004

I thought make a wish was just for kids with life threatening illnesses,

I didn't know it could be for life altering ones (or is CVID considered

life threatening?)

Dayna

Re: update on

In a message dated 4/30/2004 8:59:46 PM Eastern Daylight Time,

DANIELLEPENNE@... writes:

received his Make A Wish last year.

What does the make a wish do? I don't know anything about it.

Thanks

Janet, mom to Brittany CVID

May 3, 2004

--- That is grat news!! when are you going to start? I know this

sounds dumb, but I thought Make a wish was for kids who had a

terminal illness? I am so hopeful that this is a better year for

!

hugs, susan

In , " THOMAS RUSSO "

<rn4premies@m...> wrote:

> I just wanted to give an update on . Her Ped called

today and the insurance company has approved of her starting

IGIV. Finally!! We are happy to get this chance for her. The Ped

has faxed everything to the hospital so I guess we wait for them

to get us started. I don't know the procedure. She also was

referred to Make A Wish by her Ped and they also called and are

starting the wish process. So finally some good is coming of all

this. She has had such a tough, sick year that it's nice for her to

have something to look forward to. Well, thanks for listening. I

hope you all are doing well.

> mom to - IgA def, asthma, gerd

>

May 3, 2004

Oh, , I'm so happy for you. I hope this is a start (albeit probably a

slow one) of better things for . Great news!

(mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD,

dairy intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

May 3, 2004

Hi Dayna and Janet,

As said, Make A Wish is for kids 3-18 who have life-threatening

illness/terminal illness. There is a blanket coverage for all PID's, so all the

kids would qualify. 's Dr referred her, we have been thinking about it

for a while but didn't know if she was eligible( hard realization, that). Her

Ped brought it up at our consult on April 19th, with having such a

tough year we all thought it would be nice if something good would come of it.

We were called on Thurs. to say she would be getting a wish and we would be

contacted by a wish volunteer in the next few weeks. The foundation gives each

child a wish if they qualify, I believe the average wish is around $5,000. The

kids get asked who would they like to meet, where would they like to go, is

there something special they want. I will let you know how it goes when they

come.

Mom to - IgA def, asthma, gerd

Re: update on

In a message dated 4/30/2004 8:59:46 PM Eastern Daylight Time,

DANIELLEPENNE@...<mailto:DANIELLEPENNE@...> writes:

received his Make A Wish last year.

What does the make a wish do? I don't know anything about it.

Thanks

Janet, mom to Brittany CVID

May 3, 2004

Janet,

Make A Wish gave his wish! His wish was to meet the Blue Angels and fly

with them.

Well they sent our family to FL we live in CA and spent the day with the

Blue Angels.They took him in the morning and we got him back in the early

evening. He was allowed into the briefing and debrief room........off limits to

us ordinary folks:) Rode in the parade with them, was part ot their caravan.

Was out on the tarmac during the whole air show with headphones on talikng to

the pilots. had breakfast, lunch and dinner with them. He was to small to fly

in the jet so they took him up in a stunt plane. The did stalls, barrel rolls,

flew upsidedown and more. was the first kid to wish to see them and they

treated him royaly! They also gave the family a base tour.

Make a Wish alo made arrangements to see the Beach Boys in Concert front row

seats, zoo passes and spending money. It was an incredible trip.

I did not think would qualify, a nurse told us he would. So wrote

Make A Wish and asked them. They called me and asked my permission to contact

s doctors to see if he qualified, they did and he did.

Great organization!

le

May 4, 2004

In a message dated 5/3/2004 4:40:24 PM Eastern Daylight Time,

rn4premies@... writes:

I will let you know how it goes when they come.

, Please do. I bet is very excited:)

Janet

May 4, 2004

le, that sounds so exciting, I bet loved it! Sounds like your

family had a great time. Wasn't nice to see so happy?

These kids go through so much:( This sounds like a GREAT organization. Thank

you for the info.

Brit has never been very far from home. We never been on vacation. (can't

afford it) How nice something like this would be for her. A true dream!

Thanks,

Janet

May 16, 2004

Yeah! That confirms it! Hes a genius! Such a sweetie!

May 16, 2004

Crista,

Thanks for sharing that with us.

I cant wait to see our little man on the move!

Im happy for you Crista!

talk soon,

HRH

May 16, 2004

Celia,

We get our new cast on June 9th, and I am very excited to see what kind of correction we get with the new cast. What about Deirdra? Did she have her cast change yet, and if not when is that going to happen? I actually can't wait till June 8th to give him a BATH!!! LOL

Crista

May 16, 2004

Crista,

At ten months, that IS pretty amazing ! Both my kids were early

walkers. They were both about 12 months old when they started

walking. I don't think either was using the walker at 10 months,

though.

When is getting his new cast ? Pretty soon, huh ? I'm

sure you're excited to see what correction Dr. D'Astous will get this

time around ?

>

> Hi Everyone,

> Just wanted to let you know that is walking with the baby

walker

> now. Yeah!

> He started walking around the kitchen yesterday pushing the chair,

so we dug

> 's walker out of the garage and he started zooming all over

with it.

> It is actually pretty amazing since he is only 10 months old. This

cast truly

> has not hindered him at all.

> He is also sitting up now without falling over.

>

> Crista

May 16, 2004

Crista,

That is Awesome! He is really advanced. (the only thing Chesney is

advanced in is " STUFFING HER FACE " LOL:) I'm really happy to here

that he is doing so well! Can't to see how things go June 9th.

Kelley

>

> Hi Everyone,

> Just wanted to let you know that is walking with the baby

walker

> now. Yeah!

> He started walking around the kitchen yesterday pushing the chair,

so we dug

> 's walker out of the garage and he started zooming all over

with it.

> It is actually pretty amazing since he is only 10 months old. This

cast truly

> has not hindered him at all.

> He is also sitting up now without falling over.

>

> Crista

May 27, 2004

hi gail,,

sorry i missed you earlier when you messaged me... i was at the casino for

the afternoon as usual.... even when i dont gamble its a nice place to go

just to get out...especially when its 90 degrees out and you feel like

freezing.

tell david i think of him often. i often think im in the boat just a year

or so behind him. i just did a week in the hospital because of fluid.

i became superman again and the demadex was becoming a nuisance for my

going out for the day so i pretty much stopped taking them. now i take

them faithfully but they dont make me pee like they used to.

i see a bone surgeon on tenth of june about these hips. my heart guy

thinks as long as i have them done in a hospital with a heart team around

he should be able to get me through it. my hips have become so painful im

ready to sign the paper that stating that i dont care if i survive ,,,just

do it. hello, nike....swoosh.

tell dave to hang in there....not much else we can do i guess..

bobby in missippi

May 29, 2004

In a message dated 5/26/2004 1:00:38 PM Pacific Daylight Time, charade799@... writes:

just wants a magnet.

What do you mean by this......?

M in CA

May 30, 2004

- is depressed. The magnet is to shut off the unit. I am finding things to keep him (me) busy. It will be a while but he will snap out of it.

Gail

just wants a magnet.

What do you mean by this......?

M in CA

May 30, 2004

In a message dated 5/29/2004 4:57:46 PM Pacific Daylight Time, charade799@... writes:

- is depressed. The magnet is to shut off the unit. I am finding things to keep him (me) busy. It will be a while but he will snap out of it.

Gail

So sorry if this seemed like a dumb question but I know how he feels. I would some days rather take my chances than to constantly be worried about the unnecesary zaps I have been getting. I am a walking ad for ICD anxiety!!!

One-day-at-a-time............

M in CA

May 30, 2004

Time for an antidepressant -- some doctors consider this as a part of

the regimen for heart failure problems. It helps.

On May 29, 2004, at 4:10 PM, Gail & wrote:

>

> - is depressed. The magnet is to shut off the unit. I am

> finding things to keep him (me) busy. It will be a while but he will

> snap out of it.

>

> Gail

> just wants a magnet.

> What do you mean by this......?

>

> M in CA

>

> •

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

June 6, 2004

None have the ability that I have called. They do have financial plans, although not for the magnitude of my needs.

Update on

Hi guys. As I'm sure you've guessed, I've been on a mini-forced-vacation. Work is going much better, and I feel a lot more comfortable about my job. Unfortunately....two new medical problems. I broke two molars in half, one on each side. I also found out why my teeth have been breaking, I have early-onset osteoporosis. I have never heard of this happening this early. I'm 25! I'm at a loss to find dental help, since my insurance doesn't kick in for another two months, and I know I need root canals done in both teeth. I've been in a lot of pain, and if I don't find something soon, I'm going to pull them myself. I do understand that it will be incredibly difficult, but what choice do I have? I have been getting the temporary filling material from the drug store and doing temporaries often, but that is getting very tedious. I have been remiss in sending the birthday cards for this month, and I see I missed a very important one. Happy belated birthday Ling, sorry it is late. I do read the emails about you all, and welcome to the newbies.

Hugs,

~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

---Incoming mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.698 / Virus Database: 455 - Release Date: 6/2/2004

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.698 / Virus Database: 455 - Release Date: 6/2/2004

June 6, 2004

I feel for you.

Having had a molar crack in half 73 miles away n Albany NY I was so hungry and could only suck down some soup. Luckily they capped it right away, thats why I feel for you, it is torture

Anne

June 26, 2004

Leni,

Wow.

It is a little disappointing the attitude of Mom. You would have thought there would be a little more appreciation of the changes to date.

So based on the Mom's reaction, I would wait.

There is most likely much to be done - but let's have them reach out and request it.

Dick

I spoke briefly to Dr. Thom about in April. Wanted you to have an

update:

was 6 years old and weighed 85 pounds, and approximately 48+. -

Huge for a 6 year old. He was ravenous from the moment he woke up to the

moment went to bad. Mom was fighting with him over food trying to get him

not to eat. Kids were starting to call him cottage cheese belly. He

preferred sedentary activity but could get up and play once he got going.

Really sweet demeanor. Nice to brothers and sisters, but all this started

the moment mom came home from hospital with his little brother (he was age

2) and now he had a sister. He had night terrors (which had subsided

considerably - whole church was praying for him). He was a leech and Mom

could not peel him offer her body - clingy. He was a perfectionistic and

would get bent out of shape if his homework wasn't perfect (age 6 - would

have to do it over again). If Mom did not come immediately to pick him up

he was petrified, beside himself. Terrified of being alone. Can't get him

out of parents bed - even if starts out ends up in bed. Ate lots of carbs

for breakfast and lunch and good dinner. Craved peanutbutter.

Started him on eggs and flesh protein breakfast and for first time in years

he was able to go 4 hours without hunger. Increase proteins across the

board and he is losing weight, looks great. Another client saw him and

said "he looks like a totally different child, what did you do?"

Started him on Calc Carb and Nat Mur 30K alternating 5 pellets every other day.

Used flower essences for fear and emotional trauma.

He is sleeping in own bed, not a leech, more balanced, more active, feeling

better losing weight. It's all I can do to get the mom to report in - had

to hear of the good progress from another mom.

Mom wants to bring him in finally. Per our conversation Dr. Thom I think

you said just let him finish the Nat Mur and Calc Carb and then wait and

see whether anything more needed? That is, whether any other aspects of

difficulty arise?

June 27, 2004

There is no problem with doing this slowly.

His parents are used to it.

Take your time, he has the rest of his life to get there.

DIck

Dear Dr. Thom,

is now 4. You counseled me in early stages. is highly allergic to most foods (very limited), and particularly gluten and casein and has a "touch" of autism, avoids eye contact, went through lots of speech therapy, talks fast, hard to follow, also when he came approx 1.5 years ago he had diarrhea for the past 2 years and tried other probiotics etc but 4-6 weeks on HMF and undas and his bowels became regular. Mom had already controlled things dietarily via gluten/casein allergen free diet. But, you could tell that something was "not quite right energetically." We have completed numerous rounds of g.i., liver, kidney drainage over the past 1.5 years (no nervous system work) including HAD, Chlorophyll drops, Zn and Mg gammadyns, Cod liver oil, castor oil on belly and when we spoke in winter you agreed he was probably ready to try Balancing & Reharmonizing program.

This was delayed because a doctor got involved and wanted to run some blood panels via Metametrix and DAN protocol and I requested they do Body Bio panel for fatty acids etc., so we added in more vitamins, minerals, (particularly B's) (he is too allergic for Liquid , and some bicarbonates to help his digestion - his CO2 level was very acid and oils. He actually has started to eat some foods with phenols - things he was senstive to.

Because is so sensitive and reactive to everything - his mom waits for days between adding in new things, I waited to start Balancing & Reharmonizing program till now because I didn't want him adding in all kinds of things and having an unstable intake or unstable system so that if he had reactions we would know if it was from the Balancing program. Also wanted him to be on program for a month at a time as opposed to cycling between adrenal and thyroid because he is so reactive. has been on program for 1.5 weeks and his Mom called and said that both she and husband noticed he is starting to allow eye contact!!! Doesn't look away immediately! They are totally pleased. (I breathe a sigh of relief, no reptilian behavior - yet.)

I have tried the cautious approach - 3 drops one time per day of Unda and Organotherapy and 1 Calc carb. I was going to change it to morning and evening doses 1/2 way through but think I'll let it go for one 3 week cycle, wait a week and re-start. (I'll be away on vacation for a week and am not wanting anything to come up, if possible, while I'm away for a week.)

My understanding is that we continue this protocol until we stop seeing changes? Since he is age 4, When we re-start would you have him do a morning and evening dose? 5 drops of each of Unda's? 3 drops of organotherapy? 1 each of calc carb?

Is there any downside to moving so slowly? I'm easing myself into this as well.

I'm so glad school is out, I wanted to keep you posted on some of these cases!

July 31, 2004

Dear Dr. Thom and Unda Group,

is the 4 year old I wrote about last week who was on his second

month of the Balancing and Reharmonizing protocol (at a higher dose) and

who started having trouble processing information and communicating.

He stopped protocol by Wednesday of last week, took Belladonna 200K one

dose (3 pellets) on Sunday morning. It seemed that he got really agitated,

etc. for the next few days. On Wednesday he started 2, 20, 258 and CuAuAg

and by evening he was clear. Whew. His parents were great.

Question: should I immediately have started the 2, 20, 258 & CuAuAg or was

it correct to first give Belladonna and let him sit for a few days? Would

we have expected a worsening first and then a clearing? We're anticipating

that we are dealing with metals in the CNS or some toxicity. He is very

allergic and thus so far not been able to use greens other than liquid

chlorophyll drops. He is doing fine with unda's and gammadyns. Is there

any additional support I can offer or is this sufficient?

Thank you! This was an incredible learning to observe the mental symptom

due to physical toxicity and the clearing of it -- when his mom said it, it

felt like the fog cleared like mist before the sun.

DT: Aren't these cases great learning. That is why medicine is an "art and practice".

I would have done the belladonna, UNDA, CuAuAg all at the same time. Start immediately with the aggravation.

It will be while I suspect before he is ready to go back to the the brain protocol.

Keep us updated.

I truly appreciate the support.

Best to all, Leni

October 7, 2004

Robin,

Thats wonderful news! I'm so glad that the pieces of 's puzzle are now fitting together.

Words cant describe the gratitude I have for the SLC team at the Shriners Intermountain Hospital. They come from a different planet and I mean that in a good way!

Please continue to keep us posted.

Sincerely,

HRH

October 7, 2004

Robin,

That sounds like great news. I am so glad that your trip was worthwhile. What did you think of the hospital? I was so amazed the first time I saw it.

Congratulations Robin, lets hope that she just keep self-correcting.

Crista

October 7, 2004

Hi Robin

I'm so glad that you may finally have some answers! Sometimes I

think the not knowing is worse. Its so much easier to deal with

something (however bad, or not) when you know what it is.

I just KNEW you'd have a positive experience at SLC Shriner's. And

Dr D'Astous is The Best.

As I may have already mentioned, Siobhan has a " Not Yet Diagnosed

Connective Tissue Disorder " . Naturally I've done a fair bit of

reading on the subject! And interestingly, of all the Specialists

she sees, the ONLY doctor to mention something that I'd read, and

describes Siobhan's symptoms to a tee, is Dr D'Astous! He is not

only knowledgeable AND approachable, but you get the feeling he

really cares. (Well I did).

Jacki

> Hey Everyone,

>

> As you know, yesterday, we went to see Dr. D'Astous at the

Shriner's

> Hospital in Salt Lake City, UT.

>

> We went there thinking that had idiopathic scoliosis and was

> progressing in her brace as the current in-brace x-ray taken in

our

> orthopedist's office showed a progression from 16-degrees to 23-

degrees.

> Also troubling was that the curve was apparently at T12-L4 instead

of the

> earlier curve indicated around T7-L1. We thought this may have

something to

> do with a possible tethered spinal cord. In addition, when we take

the brace

> off , her curve seemed so much better than before, not worse.

>

> Interestingly enough, Dr. D'Astous and his team felt strongly that

's

> scoliosis is neither idiopathic nor progressing! In their

experience, they

> see many children that have had thoracotomy-induced scoliosis.

's

> mature teratoma (she had a tumor at 6 months old) required a

thoractomy

> incision as evidence by an upper scar between 2 ribs. The apex of

her curve

> is located at the scar. In brace, that curve measures 10-degrees

(down from

> the original 37 degrees). Out of brace, that curve measures 15-

degrees. It

> is located somewhere around the T6/7-T12 area. Where is the 23-

degree

> curve? That 23-degree curve is a compensentory curve caused by an

> ill-placed trochanteric pad on the brace itself. When the brace

is removed,

> that 23-degree curve is no longer there, her lumbar area is

actually quite

> straight.

>

> We had already been in the process of getting a new brace as she

has

> seriously outgrown the current brace. We will be taking new in-

brace x-rays

> when we receive the brace (on oct 21st)and sending them to Dr.

D'Astous.

>

> We were especially pleased to hear that there is a connection

between her

> current scoliosis and her earlier surgery. They said there

haven't been any

> 'formal' studies that they know of regarding the thoracotomy-

induced

> scoliosis but that is commonly what they find in their practice -

children

> with previous heart surgeries, children with other surgeries,

etc. - all

> seem to later develop a scoliosis in that area. There was no

question of

> the link in their mind. Interestingly enough, they see that some

of these

> curves actually spontaneously correct themselves. Given that

's RVAD

> angle approaches zero - 's curve could be correcting

itself!! (there

> is no RVAD angle from her brace-induced curve as I mentioned

earlier because

> it is in the lumbar region - too low in relation to her ribs to

measure)

> However, the brace does diminish the curve at present from 15

degrees to 10

> degrees and there are no compliance issues regarding wearing it -

they all

> felt it was a good idea to continue brace treatment and watch it

closely -

> particularly more so when she reaches age 12-13. They felt she

could get

> the same probably permanent correction with the brace at this

point than

> casting would give her. They made it a point to say that casting

works

> incredibly well for idiopathic infantile scoliosis and that

's is

> neither idiopathic nor infantile. Casting also works for more

rigid curves,

> and is extremely flexible.

>

> I have to say - that team in SLC, UT is INCREDIBLE! They spent 3

solid

> hours - 3 HOURS! - pouring over all of her x-rays, taking a few

more x-rays,

> thoroughly investigating every aspect - explaining every single

thing - and

> they put the pieces of 's crazy puzzle together - something

13 other

> doctors have been unable to do. Despite the fact they do not

recommend

> casting in her case, we were all very pleased with the outcome. I

still am

> in shock that her curve is correcting - although - as I may have

mentioned

> before - she did look straighter when we looked at her in the bath

at

> night - and given that the brace itself was causing a secondary

curve - of

> course she was straight without the brace!!!

>

> That team is one of the most intelligent, unbiased, non-

egotistical set of

> doctors I have EVER met! They were not pushing any agenda at all -

they

> took a seriously look and came up with an intelligent cohesive

picture!

>

> Robin

Sign In

Update on

Recommended Posts

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest

Share this post

Link to post

Share on other sites

Guest guest