Doctor's Visit

March 1, 2002

I'd be interested to hear if the immuno's opinion on the port varies.

The rate for her age sounds fine, hope the headache gets better soon.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

March 1, 2002

Thanks for jumping out to share your opinion of the port. The HEM certainly

wants to put one in, but we are waiting (at least) until we get that second

opinion. Having both of her hands free during the infusion would be a BIG

asset if we have to go every 30 days. We are scheduled to do another

infusion in 6 weeks to see if Rebekah can go that long.

Pam

wife to (15 years)

mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001)

Re: doctor's visit

Hi pam-

I am a lurker- and don't write in too often. My son patrick, who just

turned

4, has CVID, antibody deficiency, receives IVIG every three weeks and has

March 1, 2002

Thanks for jumping out to share your opinion of the port. The HEM certainly

wants to put one in, but we are waiting (at least) until we get that second

opinion. Having both of her hands free during the infusion would be a BIG

asset if we have to go every 30 days. We are scheduled to do another

infusion in 6 weeks to see if Rebekah can go that long.

Pam

wife to (15 years)

mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001)

Re: doctor's visit

Hi pam-

I am a lurker- and don't write in too often. My son patrick, who just

turned

4, has CVID, antibody deficiency, receives IVIG every three weeks and has

March 1, 2002

Thanks, for the encouragement. The treatment has been fantastic for

Rebekah, so it has been hard to believe that she would get worse. I just

don't think this doctor really knows much about PID kids, so I'm not banking

on his opinions.

Pam

wife to (15 years)

mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001)

Re: doctor's visit

Pam:

I know I spent a lot of tears and anxiety worrying about a future I could

not

predict. Don't let the docs do that to you... they don't know everything.

Always hope.

(mom to , 3yrs old, polysaccharide antibody def)

March 9, 2002

Hi Pam,

I know I'm behind on e-mails, but you said your 2 year old daughter gets 10

grams of gammagard. My son Hunter is 7 and gets 8.5 grams. 10 grams sounds

like a lot. Usually it is given by how much they weigh. Just a thought. Maybe

the dose is too high and that is why she is having a reaction.

Temme -mother of Hunter age 7-agammaglobulinemia

Re: doctor's visit

Pam - Is it possible for anyone to help watch your other children while

your at the hospital?

Also his opinion that she will only get worse over time. Was that without

IVIG therapy or in general? That's a very

dooms day approach to take to this disease. Not all PID's progress and

some even

March 10, 2002

Thanks for writing, . I was hoping that someone could confirm the

amount of IgG they are giving her. I'm even leaning toward lower doses,

given more frequently. Rebekah still says she has a headache. It's hard to

tell with a 2yo whether she HAS a headache currently or REMEMBERS a

headache. But, she is very fussy and irritable and Mom (me) has a headache!

Pam

wife to (15 years)

mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001)

Re: doctor's visit

Hi Pam,

I know I'm behind on e-mails, but you said your 2 year old daughter gets

10 grams of gammagard. My son Hunter is 7 and gets 8.5 grams. 10 grams

sounds like a lot. Usually it is given by how much they weigh. Just a

thought. Maybe the dose is too high and that is why she is having a

reaction.

Temme -mother of Hunter age 7-agammaglobulinemia

RE: doctor's visit

They gave her 10 grams at a max infusion rate of 46 mL/hour. Does that

sound right for a 2 year old.

March 10, 2002

Doses vary not only by weight but by physician choice based on symptoms .

There is a range of dosing. My son Lucas who is 6 has 15gms every three

weeks. He weighs about fifity pounds. He went up in September because he

was having a significant increase in his sinus and asthma symptoms. It

seemed to really help him reduce the number of infections. Our greatest

reactions to IVIG seemed to be rate related. Headaches, fever, nausea, and

hypotension, etc. We now start at 7cc and add 4-5 cc per 5 min until we

reach a rate of 65-70cc per hr. When we use to start at 25 he had a headache

each time. The other thing someone here taught me was a coke or caffein

drink prior to infusion may help with the HA. I do not know at this time if

it does. But Lucas likes the ritual and he seems to do very well. We do

premedicate with oral Benedryl and Advil. Barbie mom of Lucas,

dysgammaglobulinemia, sensory integration, probable early onset bipolar, etc.

March 10, 2002

- Macey will be 7 in April and she gets 15 gms. She was also getting 10

gms at 2 1/2. Alot of times they will go

more by

the weight appropriate dose instead of age.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

March 11, 2002

Well, it's been 12 days since the infusion and Rebekah's behavior is still

AWFUL! We think that she is still having headaches or other body aches

because she is whiny. She throws tantrums, hits the baby, screams, refuses

to cooperate....she is being two-years old with a vengeance. After the last

infusion, she was really awful for about two weeks, then she was much nicer.

I'm really trying to be glad for the healthy child, but after today, I'm not

so sure that the treatment is all that great! Just kidding! Has anyone

else seen their kids personalities deteriorate after infusions?

Pam

wife to (15 years)

mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001)

Re: doctor's visit

- Macey will be 7 in April and she gets 15 gms. She was also getting

10 gms at 2 1/2. Alot of times they will go

more by

the weight appropriate dose instead of age.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

January 3, 2006

>

> I went to the doc's today. My urine sample is normal but they will

> still culture it. My doc said that I have a mild yeast infection. I

am > a person who has to take things slowly as far as supplements go

to > avoid the awful 3-day migraine. I have not tried coconut oil or

garlic > or onions yet. I have been on olive oil, and also lemon

drinks without > the salt for the last 3 days.

==>The ocean sea salt is a very important part of the nutrition your

body needs. If you do not add it to the drink, do put small amounts

in your hand and lick it off a few times a day. You do need the

minerals in them. Also try coconut oil as soon as possible - start

with 1/4 teaspoon if you must, and gradually increase it. It is so

important for boosting your immune system, for healing, for your

liver, healing your intestines, etc. Remember that " good foods " do

create healing symptoms, but add them gradually.

I can get quite nauseous, and my bowels > move a lot, but no diarrhea

or vomiting. I do get a lot of the double-> beats, which can be

annoying. These usually happen when I need to eat.

> I am also very dizzy. I ate an apple two days ago, and got so tired

> that I was struggling not to fall asleep! Won't eat those again!

> Am I experiencing too much die-off?

> Also, Happy New Year to everyone on this list!

==>You would do better sticking to the diet as close as possible.

Some people need to stay on the diet only for 3-6 months before

adding any strong antifungals (other than coconut oil), or probiotics.

==>Happy New Year to you too! My daughter's wedding was absolutely

fabulous!

Bee

>

January 23, 2008

oh no. whats up with that. what a uncareing dr. have they checked for

cyclic vomiting syndrome. maybe you could e-mail these people and ask for help

and

a good specialist in your area. everytime i e-mailed places about fonz they

gave me great help on what to look for and names of dr. to e-mail . its worth a

try. 1 cyclic vomiting syndrome association- e-mail is waitesd@...

and web site is www.cvsaonline.org and NORD - e-mail is

orphan@... and web site is www.rarediseases.org . e-mail them and

let them know

the dead ends your getting there . ask for help . big hugs to you both char

January 23, 2008

oh no. whats up with that. what a uncareing dr. have they checked for

cyclic vomiting syndrome. maybe you could e-mail these people and ask for help

and

a good specialist in your area. everytime i e-mailed places about fonz they

gave me great help on what to look for and names of dr. to e-mail . its worth a

try. 1 cyclic vomiting syndrome association- e-mail is waitesd@...

and web site is www.cvsaonline.org and NORD - e-mail is

orphan@... and web site is www.rarediseases.org . e-mail them and

let them know

the dead ends your getting there . ask for help . big hugs to you both char

January 23, 2008

Hi Debbie! I'm new to the group and have been reading for three

months without really introducing myself. I've not posted before,

but I felt I had to respond to this, as I have been concerned about

Hans and have really felt for you when reading your posts.

Has anyone ever evaluated Hans for Crohns Disease? I know that can

cause the vomiting and diarhhea with certain foods, the stomach pain

and possibly even the headaches. It is also a difficult disease to

pinpoint. I assumed the gastroenterologist would ask about that.

And of course, perhaps this is something that you have already

explored with the rheumatologist. If not, please bring it up with

him/her. There are great medicines for Crohn's and once you know the

food limitations it is very controllable.

I felt so bad for you when I read your post. It must have been so

frustrating to be you today. You've been in my prayers and will

contine to be.

Michele, Mom to , 5 (possible since 2 years old)

January 23, 2008

Hi Debbie! I'm new to the group and have been reading for three

months without really introducing myself. I've not posted before,

but I felt I had to respond to this, as I have been concerned about

Hans and have really felt for you when reading your posts.

Has anyone ever evaluated Hans for Crohns Disease? I know that can

cause the vomiting and diarhhea with certain foods, the stomach pain

and possibly even the headaches. It is also a difficult disease to

pinpoint. I assumed the gastroenterologist would ask about that.

And of course, perhaps this is something that you have already

explored with the rheumatologist. If not, please bring it up with

him/her. There are great medicines for Crohn's and once you know the

food limitations it is very controllable.

I felt so bad for you when I read your post. It must have been so

frustrating to be you today. You've been in my prayers and will

contine to be.

Michele, Mom to , 5 (possible since 2 years old)

January 24, 2008

Hi Cha and Michele and all

Firstly thank you two ladies so much - your words were a balm.

Yesterday was tough, but I've slept on it and feel a bit better today.

Cha, the neuro doc that did the MRI thought at one stage that Hans

had cyclic vomiting syndrome and prescribed 3 months of migraine

medicine for that (he does get real migraines too but now sees them

coming and we can usually abort them). Unfortunately the medicine did

not help at all with these symptoms and things have actually gotten

worse. However I think I need to check the email addresses you sent

just to have confirmation on a few things. I feel I've learned so

much more talking to parents on these forums than listening to what

are often clichéd statements from the doctors. (eg no

gastro-intestinal illness ever gives headaches)

Michele I had the feeling (she didn't talk about it though) that maybe

the gastro doc was excluding Crohn's as he doesn't have constant

stomach pain and only has diarrhea when he eats certain things. Most

of the time he doesn't have it. We didn't mention it but wonder if it

could be an allergic type problem and will try to inform ourselves

about that (eosinophilic gastroenteritis??)as he had a high number of

IgE's and eosinophiles 3 years ago when we checked those and nobody

has ever given us a real explanation as to why. One hundred and fifty

of the 1500 IgE's were specific to dust mite and we don't know about

the other 1350. Could they be there due to food intolerances etc?

Anyway we are going " back to the drawing board " and will try to ask

very specific questions on our next rheumy visit when we discuss the

blood test results. I can see though that we are running out of

options. Unfortunately the hospital we go to is the only major one

near where we live and a change will mean going to Paris, and my

husband feels we would have trouble getting in there without a

referral from a doctor here. We're in a bit of a vicious circle - a

place a lot of you have been at times too. (By the way we have been

down the " psychological road " and that has come up with nothing

either) Anyway thanks again for your input(and prayers), it is always

so appreciated

Debbie, mum to Hans, 13 ??

South of France

January 24, 2008