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Help!IVIG for a 4 year old


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7 replies to this topic

#1 mom24

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Posted 24 February 2012 - 10:19 AM

We are considering IVIG for our 4 year old Pandas diagnosed child---possible Lyme coinfection. Has anyone done this with a child this young? He is VERY immune compromised and is constantly sick and symptomatic. We understand how it works and are currently on round 3 with our eldest. Any thoughts would be much appreciated. Thanks!


#2 kiera

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Posted 24 February 2012 - 11:05 AM

I've no info regarding ivig in such a small child for Pandas, however, I do know someone who's 2yr old got ivig for Gullian Barre syndrome and cured her within hours, so I guess the risks are the same! Hope this helps.

#3 tampicc

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Posted 24 February 2012 - 11:19 AM

My 5 year old had IVIG and it went fine. If your PANDAS doctor recommends it, I would think it would be ok.

#4 mom24

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Posted 24 February 2012 - 11:41 AM

My 5 year old had IVIG and it went fine. If your PANDAS doctor recommends it, I would think it would be ok.

Thanks! We see Dr B and we are currently in the pre-approval process (the numbers show that he needs it). He may need treatment for a lyme co-infection first so we will consult the Lyme specialist first. How many rounds did these kids have? I know how hard it is for my older DS and it will be hard to watch my little guy suffer the side effects.

#5 tampicc

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Posted 24 February 2012 - 11:56 AM

My son had only one High Dose IVIG. He had the migraine with vomiting the second night, but we got through it.

#6 powpow

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Posted 25 February 2012 - 03:56 AM

just noticed the NIMH IVIG study accepts ages 4- 12.

hope that helps you!

#7 sf_mom

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Posted 25 February 2012 - 08:34 AM

I have 4 year old twins with congenital LD. One child had OCD, rage behavior at 2 1/2. Dr. K, "PANDAS Dr" gave this particular child a preliminary diagnoses of Aspergers/PANDAS prior to discovering he had Lyme/Bartonella/Babesia/Mycoplasma/Viruses/KPU, etc. Both of the twins had immune deficiencies in their IgG 1s, 3s, overall serum, strep pneumo titers and elevated CAM Kinase. All these deficiencies were getting worse over time as we tracked them for a period of 1 1/2 years. I actually was pursuing hdIVIG for one of the twins but Dr. K was unwilling to administer due to age and lack of sudden on-set. When we eventually made it to an LLMD and discovered chronic infections it was his position that many of these things would resolve in time with treatment inclusive of immune deficiencies without the use of hdIVIG. Our twins are now 4 1/2 years of age and everything is improving as promised even the immune deficiencies. I do not take the potential of pursuing hdIVIG off the table 'if needed' for my twins but so far it looks like it will not be necessary in their course of treatment. Our older DS originally diagnoses with PANDAS then Lyme et al did benefit from hdIVIG but its been over two years since his last treatment.

I am attaching some notes from a recent Lyme conference. Dr. Ann Corson spoke at this conference and is a well respected pediatric Lyme practitioner. In the notes you see some comments on her perspective of PANDAS/Lyme/hdIVIG.

http://betterhealthg...2012-conference

Wishing you all the best in getting your son well.

#8 mom24

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Posted 25 February 2012 - 04:48 PM

I have 4 year old twins with congenital LD. One child had OCD, rage behavior at 2 1/2. Dr. K, "PANDAS Dr" gave this particular child a preliminary diagnoses of Aspergers/PANDAS prior to discovering he had Lyme/Bartonella/Babesia/Mycoplasma/Viruses/KPU, etc. Both of the twins had immune deficiencies in their IgG 1s, 3s, overall serum, strep pneumo titers and elevated CAM Kinase. All these deficiencies were getting worse over time as we tracked them for a period of 1 1/2 years. I actually was pursuing hdIVIG for one of the twins but Dr. K was unwilling to administer due to age and lack of sudden on-set. When we eventually made it to an LLMD and discovered chronic infections it was his position that many of these things would resolve in time with treatment inclusive of immune deficiencies without the use of hdIVIG. Our twins are now 4 1/2 years of age and everything is improving as promised even the immune deficiencies. I do not take the potential of pursuing hdIVIG off the table 'if needed' for my twins but so far it looks like it will not be necessary in their course of treatment. Our older DS originally diagnoses with PANDAS then Lyme et al did benefit from hdIVIG but its been over two years since his last treatment.

I am attaching some notes from a recent Lyme conference. Dr. Ann Corson spoke at this conference and is a well respected pediatric Lyme practitioner. In the notes you see some comments on her perspective of PANDAS/Lyme/hdIVIG.

http://betterhealthg...2012-conference

Wishing you all the best in getting your son well.

Thanks all for your thoughts. We see Dr. J this week and have many labs, rash pictures and behavioral videos (people can't even believe the rage until they see the video). Hopefully Dr. J will have some good insight and maybe like you, SF Mom, we can avoid IVIG and get our son back through the proper antibiotics. He is a chronic myco guy whose #s keeping going up (1600+) with probable Bartonella . Looking forward to having the appointment! I will also check out the links. THANKS :-)




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