update

[Guest guest]

Dear : I hope 's eye problem will be doing better and that the

new IGE research at national jewish hospital is completing will benefit all

children with high allergy response to their environment.

annette and alissa

>

>Reply-To: PedPIDegroups

>To: " PEDpid " <PEDpidonelist>

>Subject: Update

>Date: Thu, 13 Apr 2000 09:30:34 -0400

>

>Hi. He's a quick update on and his eye appt. He has nothing major

>wrong--an " extremley serious case of allergic conjunctivitis with

>significan cobblestoneing and an active case of sinusitus--DUH--and

>slightly far-sighted. " I knew everything already except the far-sighted

>stuff. who would have thought that one? With my family history of

>near-sightedness, far-sightedness never crossed my mind! He has to wear

>glasses only for acedemic uses. He picked out a great pair of frames--the

>most expensive, of course, but they do look good on him! As for the loss

>of periphral vision, the doctor saw no true indications of it--his optic

>nerve was normal. However, he did say that with jason having such severe

>allergies affecting his eyes, that that may have caused some blurriness to

>where he percieved it as not seeing. Confusing, huh? There is nothing

>else we can do for his eyes that we are not currently doing, so we have to

>wait for the allergies to subside on their own for now. Sinus surgury was

>mentioned to help alleviate the swelling around his eyes, but that has been

>discussed already and we are waiting to see ENT about that. Thank

>for your insight. I did mention ti to the doctor and he said that if he

>has seen any indication, we would have been sent for an immediate MRI. He

>did say that he was concerned when he saw the primary doctors notes and

>that it actually was in the back of his mind. So your internet diagnosis

>wasn't bad!

>

>Now, does anyone know anything about " Sick Building Syndrome " ? I won't go

>into lengthy detail, but I am beginning to think that some of 's

>allergy problems may be from the school itself. It is an old

>school--almost 100 years old, and his eyes look half-way decent before

>school but by the time he comes home, they are terrible. Then within a few

>hours they are mostly clear. His allergies seem to worsen after he has

>been in scool for a few weeks, too. Any info or thoughts would be

>appreciated.

>

>--mom to ,7, dysgammaglobulinemia, etc; , 8--almost 9; and

>sarah 19 months

>

>

>

[Guest guest]

Tina,

Could I ask what brand takes of IVIG? Has he tried

different brands? What rate do they run the IVIG in at? Sorry, for

all the questions. I'm just trying to figure out why some kids are suffering

so with their IV's. My own son does very well with his IVIG. He

has only had a problem when there was a brand switch due to a

shortage. The head nurse of his home health care here said they do

not have any patients that have problems or troublesome side-effects

with the IVIG. I am very thankful my son tolerates it so well

as he has very low immune system and really needs it. It has been

a miracle for us. I shared with the head nurse that many children on this

list suffer terrible side-effects. I hope my son continues to have great

luck with IVIG and his brand stays available. I hope stays

well during this evaluation period and that the surgery will help your daughter.

Jan

IBSNICK1@... wrote:

> Hello All:

> Just wanted to let you know I finally got to see Dr. Cunningham Rundles

> yesterday with . She is perplexed as my Immunologist. She said that

> we should leave off the Infusions until October (since the IVIG will

> be in his system for 3 months) then give him a month or 2 then completely

> test him for the whole Immune/Antibody problem all over again as him he was a

> new patient.

> The summer months will be no problem. I do worry though how he will be when

> he goes into high school with 2000 kids in September. She did a lot of blood

> tests including the anti-IGA antibody ( she had to sent it out of state).

> She said may need to get IM shots weekly or bi-weekly instead of IV

> since the side effects are so great with the infusions. Or possibly only a 5

> gram dose at a time to minimize the side effects. is really enjoying

> his freedom of the infusions for now - even though he is a little tired

> though... Me, I am waiting for the other shoe to drop.... The only changes

> so far has been one sinus infection, a little worse asthma, but his arthritis

> hasn't been too bad yet.

> On a different note, I had my oldest daughter in the hospital in New York

> recently for a video EEG and to be evaluated for the Vagus Nerve Stimulator.

> She is definitely a candidate and they are encouraged that this can help

> .

> We came home on a new medication for seizures, unfortnately did not work too

> well, so In August when we go back to the neuro we will be scheduling the

> surgery for the Vagus Nerve Stimulator. So far, has been a really busy

> summer here doctor wise for the 3 kids.

> Hope all is well with you and your families.

> Tina

> (almost 15, CVID, Asthma, JRA, EBV)

>

>

>

> 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]

Tina - I'm glad to hear that qualifies for the VNS. Debbie 's

son (she's not on the list any longer) has the VNS and it has worked

very well for him, he's 3. They're slowing weaning his seizure meds now and

everything looks encouraging.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

Hi Jan:

has tried all the brands on the market for IVIG. Some of the other

brands cause even WORSE side effects. He has has high fever-flu like

symptoms, projectile vomiting, chest pain, etc. He gets the least amount of

side effects on Gammagard. And even with the Gammagard he is still sick for

a week with severe headache, flu like symptoms, and fatigue. Then he misses

a week of school after each infusion. When he was younger this wasn't a

terrible problem, but now that he is older, he has a terrible time trying to

keep up, the teachers don't seem to believe that he is sick ( " he looks ok " )

despite all the educating I tried to do,and the anxiety this causes in trying

to catch up all the time is terrible. I thought a lot about home schooling -

but I am so afraid he will miss even more socialization that he really does.

Being out of school so much he is already so shy and unsure of himelf around

kids his age. Anyway, he is enjoying his freedom for now, and hopefully he

will stay healthy until the testing.

I am so happy to hear that your son tolerates the IVIG so well. Most people

do tolerate it well, but for us it becomes a catch 22 between what he needs

and how the treatment makes him sick. We are hoping that 's immune

system has improved and matured enough maybe to require less IVIG or even not

need it.

I hope your summer is going well without too much illnesses?

Tina

(Mike 14, CVID, Asthma, JRA)

[Guest guest]

Tina,

You're right is in a Catch 22. My son only got

sick once when a brand was switched and neither the nurse

or the doc were informed of the switch. He had an allergic

reaction they think to the detergents used. He was not sick

for a week though. He has had a temp come up a little if he

had an illness or was coming down with one. He takes 10 grams

over 3 hours these days. They will raise it if he has an illness

increase this winter because his level taking IVIG is a little low

now after several years at 10 gr. but he is staying so well that

it may not be necessary. His doc tries to use the least amount

needed to stay fairly illness free. He had problems not related

to this in the winter and spring and had surgery to repair the

problem. His body rejected the stitches plus he got a staph infection

so he finally got well from all that and released to play and

swim as much as feels up to the last week of June. He has

enjoyed this immensely and has been well since then. He stays

well a lot with the IVIG but still has trouble getting well if he

does get sick. Ben loves homeschooling and his illness rate

was really low except for the surgery problem. It was our

first year to try it and we will do it again. He plays video and

card games with several neighbor boys, but not sports. He doesn't

have a lot of stamina. We are considering a martial arts program

a few times a week to increase his stamina. There are lots of

activities for home schooled kids and without all the homework

there is a lot more time to socialize and pursue his interests where

before we were always saying: " NO, Ben has homework and medical

procedures to do. " He was often sad then, and is not like that now.

Some of his friends wish they could homeschool so that they did

not have the homework. We will take it year by year. I'm sure

it doesn't work for everyone but it has really helped Ben's stress level

and now he takes electric guitar lessons and has time to practice.

I really hope stays well and his immune system is better.

The doc says to retest when Ben is 15, but doesn't expect significant

change.

Jan

IBSNICK1@... wrote:

> Hi Jan:

> has tried all the brands on the market for IVIG. Some of the other

> brands cause even WORSE side effects. He has has high fever-flu like

> symptoms, projectile vomiting, chest pain, etc. He gets the least amount of

> side effects on Gammagard. And even with the Gammagard he is still sick for

> a week with severe headache, flu like symptoms, and fatigue. Then he misses

> a week of school after each infusion. When he was younger this wasn't a

> terrible problem, but now that he is older, he has a terrible time trying to

> keep up, the teachers don't seem to believe that he is sick ( " he looks ok " )

> despite all the educating I tried to do,and the anxiety this causes in trying

> to catch up all the time is terrible. I thought a lot about home schooling -

> but I am so afraid he will miss even more socialization that he really does.

> Being out of school so much he is already so shy and unsure of himelf around

> kids his age. Anyway, he is enjoying his freedom for now, and hopefully he

> will stay healthy until the testing.

> I am so happy to hear that your son tolerates the IVIG so well. Most people

> do tolerate it well, but for us it becomes a catch 22 between what he needs

> and how the treatment makes him sick. We are hoping that 's immune

> system has improved and matured enough maybe to require less IVIG or even not

> need it.

> I hope your summer is going well without too much illnesses?

> Tina

> (Mike 14, CVID, Asthma, JRA)

>

>

>

> 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]

In a message dated 8/21/00 8:10:41 PM Pacific Daylight Time,

sandraray@... writes:

<< She did say that Autumn is not a candidate for IVIG because she has

excellent IGA #'s. >>

Interesting...I thought that the IVIG replaces IgG levels...Kody's IGA's are

fine, and he gets IVIG. Am I wrong, or just confused??? Just when I think I

understand this stuff I get lost again! )

Diane, Mom to Kody

[Guest guest]

Diane,

The dr. said that most children with " true " IgG def., also have IGA

def. She felt that Autumn has a " fleeting " deficiency which will " trend

up " (her words, not mine) by age 4 or 5. That's basically the same

thing I've heard from 4 other drs so I'm not sure that it's all that

helpful. She had lots of other ideas and felt that we could simplify

the meds we were on a great deal. She's actually the first pediatric

immunologist we've visited with, and you can definitely tell the

difference in the focus.

Interestingly enough, she did add that if Autumn does not mount a

response to the pneumovax, she could have a carbohydrate deficiency, not

an immune deficiency. The end result is the same--IV therapy. So,

we'll see. We go in for pre titers and pneumovax on Thursday. The post

titers will be in 3-4 weeks.

Ray, mother to Tabitha (age 5) and Autumn, age 2 (IgG def.,

asthma, chronic sinusitis, and allergies--unknown)

[Guest guest]

Hi ,

I found your last post very interesting. My son Mark has the rare Cd5-Cd19

PID (as you know) what is so interesting is that Mark has Fructose

Malabsorption Deficiency...a carbohydrate problem, he is missing an enzyme to

digest fructose. Only difference is that Mark does indeed have a true PID as

all of his b cells have the Cd5+ marker on them (hence the reason why he does

not respond to vaccines, make antibodies or neoantigens). I am going to

inquire as to whether or not the two are related. Thanks for the indirect

information.

Autumn (Mom to Mark Cd5-Cd19 PID and )

[Guest guest]

sorry for the typo on the name...I meant to type (OOPS!!!!!)

[Guest guest]

Snadra,

forgot to mention in my last post that with the Cd5-Cd19 you do not make a

response to any of the pneummoccal titers. Mark had all zeros.

[Guest guest]

,

I'm sorry the tests didn't show anything. Are you positive he wasn't on any

antihistamine type medications, including those like zantac etc.? Sometimes

the tests will be false negative so it does not mean that he doesn't have

allergies. Keep looking and keep a diary esp. once the pollen and mold

counts start going up. See if you can find a correlation for his symptoms.

On the milk allergy issue....boy do I have alot of info!! My son is

anaphylactic to milk, eggs, peanuts, severely allergic to peas, carrots and

tomatoes and also to strawberries, raspberries, Biaxin and Penicillin. The

best place for you to go although no guarantees here is to a Jewish

deli/supermarket. They will have many many things to choose from including

deli meats, cookies, crackers etc. that are marked either with a U with a

circle around it or say Kosher Parve or Pareve. Milk masquerades in many

many things. It can be included in an ingredient that says Natural flavors,

caramel coloring or even spices. You have to call the manufacturer be sure.

Also, you really need to cut it out for 3 weeks to get it out of his system

and then gradually reintroduce in very small amounts all the while keeping a

diary to track symptoms to make sure it is the milk. I can get some more

info and websites for you if you are interested. Just email me at

kherzberg3@... . I wish you luck!!

Good for on the baseball!!!! I'm sure you are very proud!!

Grace Caroline 8/97 (IgA def, sinusitis issues, severe allergies, mild

asthma)

Caelan 8/99 (IgA def, reflux, asthma, severe allergies, esp. to

foods)

[Guest guest]

,

Just a thought. Singulair can interfere with allergy testing also. When we

did Autumn's allergy testing in Denver, we were told to take her off

EVERYTHING for 10 days prior--including Nasonex. They wanted to take no

chances that the tests would be false negatives.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

[Guest guest]

Dear Tina,

I hope that gets the appropriate help that she needs. It is often

difficult to find an adolescent unit. I worked on an adolescent unit for

years as a Social Worker....this is a very difficult age. I send you a big

<<<<HUG>>>>!!!

Autumn (Mom to Mark Cd5-Cd19 PID and )

Update

> Hi everyone.

> I have read and received everyone's tremendous support and information on

the

> school issues AND the fatigue issues. I have not had the opportunity to

> reply to most of the posts. We do have a meeting scheduled with the Board

of

> Education, special services director, my child study team and a parent

> advocate on March 1st.

> I am not too hopeful because I have not had much success with this school

> district so far.

> We are still contemplating going back on IVIG for my son . His IGG

> levels were 367 at last blood work and seem to be falling steadily.

> While all of this has been going on, my middle daughter who is 16

and

> who suffers from JRA and depression, has taken a turn for the worse and is

> now hospitalized inpatient. It seems lately I can't even discipline her

> about what time she needs to be in the house without some terrible end

> result. After spending the last 3 days in 2 different ER's (the first one

> didn't have an adolescent unit) I am so tired I could cry. In the mean

> time, is once again recovering from his last sinus infection, and

> since school is closed this week I am hoping I can get him healthy again.

> My little 's seizures have been terrible as they get worse around

her

> monthly cycle. I feel like finding a rock to crawl under and hiding for a

> while, but this merry go round just wont stop at this house long enough

for

> even a little rest.

> I will keep you posted on the school meeting - I am planning on calling

the

> statewide parent and advocacy board as well as IDEA to see if there is any

> other advice they can offer.

> Hoping all your children are doing fine.

> Tina

> Mike 15 - CVID JRA and ASTHMA

>

>

> 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]

Autumn:

Thanks for the hug - I could use one about now. We had a family session

today - very draining - she is so angry and hurtful. She said some terrible

things to my husband - her stepdad. You're not my father kind of stuff. My

heart broke for him.

This illness, depression, is as scary and unpredictable in some ways as

everything else we deal with here on a day to day basis. I find myself

waiting for

" the other shoe to drop " with all the time.

Being a social worker on an adolescent unit must have been one DIFFICULT job

- as I saw for myself today in our visit. You deserve a lot of credit.

Thanks for the hug and the good thoughts. Its nice to know someone

understands.

Tina

(Mike 15 CVID, Asthma, JRA, 16 JRA depression and osteoporosis, and

18 Lennox Gastaut Syndrome)

[Guest guest]

Dear Tina,

I am sure that this is an incredibly difficult time for all of you right

now. Please know that we are here for you. You WILL get through this, but

it will take some time. Your daughter sounds like she has a lot of things

to sort out. Sometimes things are said out of anger and the intentions are

really not meant. Depression compounds things and it takes a good team of

people working together to help get it under control, especially at this

age. There are many good medications available but it is, like most things,

a trial and error situation. Be strong my friend.....and take one day at a

time.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Re: Update

> Autumn:

> Thanks for the hug - I could use one about now. We had a family session

> today - very draining - she is so angry and hurtful. She said some

terrible

> things to my husband - her stepdad. You're not my father kind of stuff.

My

> heart broke for him.

> This illness, depression, is as scary and unpredictable in some ways as

> everything else we deal with here on a day to day basis. I find myself

> waiting for

> " the other shoe to drop " with all the time.

> Being a social worker on an adolescent unit must have been one DIFFICULT

job

> - as I saw for myself today in our visit. You deserve a lot of credit.

> Thanks for the hug and the good thoughts. Its nice to know someone

> understands.

> Tina

> (Mike 15 CVID, Asthma, JRA, 16 JRA depression and osteoporosis, and

> 18 Lennox Gastaut Syndrome)

>

>

> 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]

Tina,

My heart goes out to you & your family during this difficult time.

It must be terrible to have a child in such emotional pain & know

that they have to work through it on their own. The family can be

there for support, but the " work " is actually done by the patient.

My master's degree is in psychology, but we didn't touch much on

adolescent issues. A friend of mine is with a group in Amarillo that

does counseling and for 2 years he worked on an adolescent ward. He

said nothing in the world can prepare you for the range of feelings

that a teenager can experience. I'm glad I never did go the clinical

route (I went research instead). There's some things I know I just

couldn't deal with.

My prayers are with you.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and alleriges), and Duncan Avery due

5/17/01

[Guest guest]

Well, the immuno (not our reg one who is on vacation) says it's " very hard "

to catch strep, so hopefully we dodged a bullet.

But this rotavirus is amazing! We're on diarrhea episode #7 in the last four

hours. At least she's somewhat willing to drink periodically. Last vomit was

last night around dinner time, so I hope that's finished. Ped said this

usually goes 3 - 5 days, with day 3 being the worst. Arrrgh!

-- thanks so much for the info, I don't care if you get graphic! And I

concur, whoa, this is nasty smelling stuff. To be graphic too, it's so watery

that has been saying " Wee wee " when she goes, she thinks she's peeing!

So far no diaper rash which is shocking to me, she usually bleeds with diaper

rash from diarrhea, but she's never had rotavirus before, the diarrhea was

always from meds.

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

[Guest guest]

Great news Annita. Hay I mark memory loss off to age. Out of sight

out of mind. Like selective memory not loss of memory.

Fred

__________________________________________________________________

Hi all Im into my third week now of treatment . Few sides so far .

Have had fever, upset stomach, fatigue, confusion boy at times its

hard to remember my name. Ive forgotton it a time or two. Thank god

im into only for 6 months. But will continue on if needed.Take care

all

Annita

[Guest guest]

i just read some news about the Iso-gym!

follow link : http://www.facebook.com/pages/Bullworker/156818677684398