anyone have a hydration protocol for IVIG after neurological problems/AM

[Guest guest]

Hi Ya'll e is scheduled for his IVIG tomorrow (Friday). I'm so worried

since he had such a bad problem last time in January with the neurological side

effects, and hospitalized afterwards for 3 days, especially because he was not

hydrated well. 

 

I know I have spoken to a few of you here, even whose children had the same

problem as clarke, and now IV hydration is given along with another premed.  I

found out that the protocol for (Cincinnati Children's)CCHMC is when a child has

had those reactions either severe migraine or asceptic meningitis, the following

doses are premedicated with an IV steroid and pre-IVIG hydration.

 

Well, I spoke with e's immunologist here, he's brand new, e is his

first amd only IVIG patient, I told him I wanted this protocol for hydration and

premed and he told me " We'll just play it by ear. No IV hydration, and if he

develops a problem, oral prednisone afterwards. nothing before but the benadryl

as usual "    What?! 

 

Why not prevent a problem?!  The nurse at CCHMC was in awe also.....why not?

 

Does anyone have a written policy or paper/research/ anything so I can hand him

and say, this is why he needs to have it done like this!  Here's what others

have found and are doing!

 

e is barely recovered from all the brain complications of last months dose,

he still has tremors and yesterday the Physical medicine and rehab dr told me he

noticed more weakness on his right side than before...he is still lethargic. 

 

Any ideas?!  I am so frustrated!!!!..............thanks to everyone....Sue

[Guest guest]

I don't have a protocol but premeds are standard for cases like your sons.

Also, if that doesn't work you might look at the brand of IVIG. And consider

doing it subcutaneously...which is now standard for experienced doctors.

Sent on the Now Network™ from my Sprint® BlackBerry

anyone have a hydration protocol for IVIG after neurological

problems/AM

Hi Ya'll e is scheduled for his IVIG tomorrow (Friday). I'm so worried

since he had such a bad problem last time in January with the neurological side

effects, and hospitalized afterwards for 3 days, especially because he was not

hydrated well. 

 

I know I have spoken to a few of you here, even whose children had the same

problem as clarke, and now IV hydration is given along with another premed.  I

found out that the protocol for (Cincinnati Children's)CCHMC is when a child has

had those reactions either severe migraine or asceptic meningitis, the following

doses are premedicated with an IV steroid and pre-IVIG hydration.

 

Well, I spoke with e's immunologist here, he's brand new, e is his

first amd only IVIG patient, I told him I wanted this protocol for hydration and

premed and he told me " We'll just play it by ear. No IV hydration, and if he

develops a problem, oral prednisone afterwards. nothing before but the benadryl

as usual "    What?! 

 

Why not prevent a problem?!  The nurse at CCHMC was in awe also.....why not?

 

Does anyone have a written policy or paper/research/ anything so I can hand him

and say, this is why he needs to have it done like this!  Here's what others

have found and are doing!

 

e is barely recovered from all the brain complications of last months dose,

he still has tremors and yesterday the Physical medicine and rehab dr told me he

noticed more weakness on his right side than before...he is still lethargic. 

 

Any ideas?!  I am so frustrated!!!!..............thanks to everyone....Sue

[Guest guest]

Before he goes......water him up.....make sure you hydrate him before he

goes.....Getting an IV in plce of a child woho is WELL hydrated before hadn is

awesome!!!

When Blaek is dehydrated it takes several sticks & is hard for the nurses to

" slap " up the veins. But when He has had plenty of WATER it is amazing to know

it only takes one stick!!!!

 

Blake has been getting IV's once a month for ayr. now. Yes sometimes they have

to be replaced(For IV antibitic..profalactic, and meds. for Brittle bone

disease) But a couple of days a head of infusion the nurse will call & tell

Blake that he has to drink plenty.

This could help with the frustration and the fear of getting the IV....

 

 

As for the premeds. for Blake when he was on IVIG..(He does sub-Q now) the

protocol for IVIG premed.....Tylenol, Benadryl(IV or oral which ever is easiest

for him to hande) and Steroid....decadron/solucortef/hydrocortasone.

After a while Blake got to where he needed NO premeds.....

Do you know the brand...How fast it was run & how long it took to get it in him

Keep up wht all of these numbers...write a journal taht starts with the day

before the treatment....i.e.how is he feeling his actins, crakny anxious and

such.  I ancious see of the Dr. can give you a script (mild) for atarax. IF

fine just go with the flo & fill him up with extra water & juices.

Keep an entry for how how many sticks,  vital signs taken through out ht

einfuion. what brand, how fast it was given what time you started & what time

you ended.

After the infusion...continue for a day to keep him hydrated and make sure you

give him tylenol as often as the label tells you to do it.

 

Keep an entry for the next couple of days to see what side effects and such you

endure. This will be benificial in being able to tell the Dr. JUST WHAT OCCURRED

before during & after!!!

 

Hope this helps a little!!!

 

Mom to blake 18

Severe Combined Immunodeficiency with Complete T-Cell Dysfunction

SDS, GERD, Autism ,Rare Blood Clotting Disorder

http://www.caringbridge.org/visit/thetalesofblake

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: dietdoc@... <dietdoc@...>

Subject: Re: anyone have a hydration protocol for IVIG after

neurological problems/AM

Date: Thursday, February 4, 2010, 12:28 PM

 

I don't have a protocol but premeds are standard for cases like your sons.

Also, if that doesn't work you might look at the brand of IVIG. And consider

doing it subcutaneously. ..which is now standard for experienced doctors.

Sent on the Now Network™ from my Sprint® BlackBerry

anyone have a hydration protocol for IVIG after neurological

problems/AM

Hi Ya'll e is scheduled for his IVIG tomorrow (Friday). I'm so worried

since he had such a bad problem last time in January with the neurological side

effects, and hospitalized afterwards for 3 days, especially because he was not

hydrated well. 

 

I know I have spoken to a few of you here, even whose children had the same

problem as clarke, and now IV hydration is given along with another premed. 

I found out that the protocol for (Cincinnati Children's)CCHMC is when a child

has had those reactions either severe migraine or asceptic meningitis, the

following doses are premedicated with an IV steroid and pre-IVIG hydration.

 

Well, I spoke with e's immunologist here, he's brand new, e is his

first amd only IVIG patient, I told him I wanted this protocol for hydration and

premed and he told me " We'll just play it by ear. No IV hydration, and if he

develops a problem, oral prednisone afterwards. nothing before but the benadryl

as usual "    What?! 

 

Why not prevent a problem?!  The nurse at CCHMC was in awe also.....why not?

 

Does anyone have a written policy or paper/research/ anything so I can hand him

and say, this is why he needs to have it done like this!  Here's what others

have found and are doing!

 

e is barely recovered from all the brain complications of last months dose,

he still has tremors and yesterday the Physical medicine and rehab dr told me he

noticed more weakness on his right side than before...he is still lethargic. 

 

Any ideas?!  I am so frustrated!! !!....... .......thanks to everyone.... Sue