t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Everyone:
It looks like we will soon start down the IVIG path for our daughter.
Our LLMD is now recommending it based on her lack of ability to produce IgG and IgM antibodies.
I'm wondering what to expect from an adverse reaction standpoint? Any input is appreciated.
Thanks
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
My daughter, at age 6, had 2 IVIG's, 6 weeks apart.
They were not for immune deficiencies (low immune complexes)
but rather for PANS, so they were done at a higher dose per weight, each over a 2 day period, in an effort to halt an
autoimmune disorder/reduce inflammation/reset the immune system.
This was before we knew about Lyme: typically, a small dose of steroid is given to thwart off aftereffects of migraine headache, etc.
PM me if you think I can help- the infusion centers have DVD's for the kids to watch, kid fun kits, Benadryl...
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi surprise:
Thanks, hopefully we are able to set an appointment to see the Immunologist on Monday but with the holidays fast approaching not sure when the appointment will be.
While I hope for Tuesday we know that is not how it works. Plus we have to pre approve with insurance and our LLMD has indicated at least BCBS is starting to push back.
Any other side effects besides a migraine. My wife has these and I'd hate for this to be a trigger with our daughter (age 13).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
My daughter had each one over the course of 2 days, sitting for each infusion about 6-7 hours.
She agreed to leave the IV in her arm overnight (don't know the correct term for it) so as not to get 'stuck' again the next morning-
we made a game of it, calling it a 'cast' Think your daughter's too old to fall for that. Money and or gift bribes may be in order ;-)
MUST hydrate- drink, drink, drink few days before and after- they will also infuse liquid (saline) BUT, get them to drink,
it staves off side affects- which, are short term. Now, I don't know what dose you are doing, but
for higher dose like we had, a headache (Motrin given regularly) sometimes vomiting - we just had headache, sleepiness...
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
You might ask about Sub Q vs IV.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
It will be good for her to see an experienced clinical Immunologist for further testing. Insurance companies don't like to cover IVIG and they will want extensive proof of medical necessity.
Once she is on the IVIG, it will help her body to better fight off infections in general.
Side effects from infusions may include headaches, flu like symptoms, fevers, and since she has lyme- herx symptoms.
Most doctors recommend premeds like benadryl + tylenol or motrin to help prevent these side effects. Also drinking lots of water and staying well hydrated helps to prevent reactions. Sometimes there is nothing you can do but help to reduce the symptoms.
I usually get some IV Normal Saline infusions before and after the IVIG infusions because I'm prone to getting severe migraines that last for several days. This prevents the IVIG from triggering my migraines. Most people don't need this.
Before my ins changed and I had to stop treatment for a few months, I tolerated the IVIG infusions really well and had no reactions. Now I feel fluey for a few days. I expect to get used to it again hopefully soon.
Good luck to you and your daughter!
Posts: 5237 | From here | Registered: Nov 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
If she does get headaches or migraines, etc., which I hope she doesn't, then, tell the dr, and they will order a much slower, longer infusion to prevent this. And/or add saline before or after, as sammy said.
It's more common to have side-effects the first few times, decreasing as you go along, and then not---if you get any at all.
It also depends a lot on the dose that the dr rx's and whether they give a loading dose or not (2-5 days in a row in the beginning).
But the dosage for immunological dx's are less than for peripheral neuropathy, so, hopefully, not so bad.
Does she have peripheral neuropathy? If so, she should see a specific LL Neuro, who specializes in IVIG for this. PM me, if you want the name & contact info. If that were the case, the IVIG would work on both issues.
Posts: 3771 | From around | Registered: Mar 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi surprise, susank, Sammy and Rumigirl.
Thank you so much. So far after today we don't have an appointment till Aug 1st. So we will be calling every other day to see if there is a cancelation.
Tomorrow I'm back at the LLMD's to chart out some of the blood result history.
2 years ago a Neuro she saw recommended IVIG (but with a 2nd opinion agreed it was not required at the time).
I'll hopefully know more end of day tomorrow but you know how communication can be with some of the MD offices.
Thank you again.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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