Re: help for Sis

[Guest guest]

Hello,

From time to time needs to take Vicodan for kids (half-strength) for

his headaches. He does not receive IVIG, but does have some extreme head

pain. Often, it is because of Clindomycin. Some of the cephalosporins can

cause severe vascular headaches--they hit very fast. He doesn't need it very

often, but it is very effective when he does.

Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot,

chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD.

Ten surgeries, heart surgery pending.

[Guest guest]

Lynn, From what I saw from what you reported they ran the IV too fast. I was

at the immuno this morning and we had another long discussion about rates

etc. Premedicate with Benydrl and Motrin then his policy is start at 7cc per

hour increase by 4cc per hour every five minutes until you reach 40cc per

hour then increase by 15cc each 15 minutes to a maximum that is best

tolerated. Before we started this protocol we could only go to a max of 30

or 35cc an hour for Lucas to not have shakes, fever, chills, headaches and

low blood pressure and muscle and joint pain for several days after his

infusion. After this protocol was implemented we have not had any side

effects at all and we are able to infuse up to 65cc per hour. At 70 he says

he does not feel good. For 15 grams it takes about 4 hours. Yes it takes

more time initially for the nurse but it takes less time for the infusion

overall and much better outcomes for the patient. I can get the Drs. office

to fax this to your infusion site if you would like. My doc says that he

began listening to his patients and that is how he came up with this. I also

was concerned for Rebekkah being only two for such a rapid rate with cell

fragment crossing the blood brain barrier causing the aseptic meningitis and

the headaches. Keep in mind it does require about six months for the body to

get use to the product. We are using Gammagard SD with Baxter but have used

Gammaimmune N in the past.

BARBIE (Lucas, 6, hypogamm, dysgamm sensory integration, bipolar etc. )

[Guest guest]

We've had to resort to giving Macey Tylenol w/codeine for her headaches. She

taken it since she was about 5 for her

sinus headaches and there don't seem to be any bad side effects.

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]

Lynne,

Hi it is . has had really bad migranes ever since she started

on IVIG and even now that we stopped for a short while she still has them. I

mean hers get so bad she lays in floor and screams with pain. A severe headache

can also cause vomiting. The reasone I say this is because I get headaches

sometimes and they make me real sick at my stomach. Well the doctors put

on Elavil and it has helped some but not a whole lot. It seems when her rate on

her IV runs faster the worse the headache, and muscle cramps and joint pain.

But the headaches is what concerned me the most so I called her doctors. I do

use motrin more than tylenol because it wrks faster and lasts longer. s

headaches still hang around. But since they put her on Elavil they are not as

bad. Thank You

Bejenski@... wrote: Hi everyone, it's Lynne:

Last night around 8 I gave sis the benedryl and tylenol like they told me

to do, she went to sleep peacefully. Then around midnight to one she woke up

screaming about her head, I gave her another tylenol, and a phenegren, she

said she felt a little sick to her tummy. Well, five min later she threw

that up. So went and got a suppository of phengren and put that in, she laid

on her tummy crying about her head, I sang softly and stroked her head till

she went to sleep. So, what do yall do about these migraines? If it comes

up today, or tonight again? I've paged her doctor, but I wanted everyones'

input on what yall do, I hope everyone gets this before another one hits!

God bless,

Lynne