[PAGID] post gamma globulin psychiatric disorder

[Bodo Grimbacher]

Dear all,
To complete the list:

Aseptic meningitis is said to be associated with IVIG,

and EMEA is still concerned of neurodegeneration after the report of 
patients from our hospital and others (Hans/Gigi) a couple of years ago:
Ziegner UH, Kobayashi RH, Cunningham-Rundles C, Español T, Fasth A, 
Huttenlocher A, Krogstad P, Marthinsen L, Notarangelo LD, Pasic S, 
Rieger CH, Rudge P, Sankar R, Shigeoka AO, Stiehm ER, Sullivan KE, 
Webster AD, Ochs HD. 
<http://www.ncbi.nlm.nih.gov/pubmed/11781063?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum> 
<http://www.ncbi.nlm.nih.gov/pubmed/11781063?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum> 

Progressive neurodegeneration in patients with primary immunodeficiency 
disease on IVIG treatment.
Clin Immunol. 2002 Jan;102(1):19-24.

B. Grimbacher, MD
Professor and Consultant Immunologist
Head of Marie-Curie Research Group
Dept. of Immunology and Molecular Pathology
Royal Free Hospital & University College London
Pond Street, London NW3 2QG, UK
Tel: +44-(0)20-7794-0500 ext.34399
Fax: +44-(0)20-7433-1943

> I agree that organic causes should be ruled out, and this would involve

> neuroradiological evaluation as well as PCR on CSF (the latter, however, may

> turn out negative). Hans Ochs has recently found astrovirus in cases of

> severe neuroogical/behavioral problems in hypogamma patients, so I believe

> the spectrum of microrganisms that should be looked for is expanding.

>

>

> Luigi D. Notarangelo, M.D.

> Director, Research and Molecular Diagnosis Program on Primary

> Immunodeficiencies

> Division of Immunology, Children's Hospital

> Professor of Pediatrics and Pathology, Harvard Medical School

> Karp Building, 9th floor, Rm 09210

> 1 Blackfan Circle

> Boston, MA 02115

> USA

>

> (tel) (617)-919-2276

> (fax) (617)-730-0709

>

>

>

>

>

>

> On 3/11/08 11:44 PM, "Richard L. Wasserman, M.D.,Ph.D." <richw3 at swbell.net>

> wrote:

>

>   

>> I received the following email from the mother of the patient described.

>> He had hypogammaglobulinemia and vaccine non-responsiveness as a young

>> child and was treated IV. Reevlaution at about age 12 again demonstrated

>> vaccine non-responsiveness but resolution of hypogammaglobulinemia. I

>> recommended stopping IVIG at that time but his parents opted to

>> contine.  He developed severe infusion related migraine and was treated

>> sub q for the past several years. Last spring, because he had done well

>> and was getting ready for college, I again stopped sub q IgG to

>> reevaluate him. He never returned for his lab studies. He had run away.

>> This is my first information about him. Any comments for a reply to his

>> mother?

>> Thanks,

>> Richard Wasserman

>> Dallas

>>

>> Dr Wasserman, our son has been a patient of yours since he was 2(he is now 18)

>> and stopped taking gamma several months ago. When he was taking the gamma he

>> would feel great after the treatment and by the end of the 3-4 weeks would

>> feel bad....not necessarily sick but just felt bad. His energy would be down

>> and his body hurt. Since he has been off of the gamma he has had a dramatic

>> and devestating change in his personality and ability to function. Not just

>> the I am a teenager and my parents dont know anything change or rebellion. He

>> is presently on his 3rd court order commitment to the psychiatric hospital. He

>> has also been arrested twice in the last 2 months after which they send him to

>> the hospital. He has been diagnosed with major depression, bi-polar, anxiety,

>> ADD, & OCD. He looses major periods of time that he cant account for anywhere

>> from a few days to three weeks. He is now taking several medications a day to

>> help with his various new medical diagnoses.

>>

>> Have you ever seen a patient that the gamma helped with how they felt and

>> acted and then when stopped had this type of effect?  Our whole family is just

>> beaten down from his behavior and hospital stays over the past 4 months. The

>> last day he acted like himself and he could hold a normal conversation was

>> October 31st. I remember the day clearly as what began to happened a couple of

>> days later is hard to comprehend.The hospital checks him for drugs each time

>> he is admitted and his is always clean.

>>

>> The therapist tells me I am trying to find a logical answer to an illogical

>> situation. Which I understand but dont want to overlook anything that might

>> help with Phillip's outcome.

>>

>> Thanks for any ideas you might have.

>>

>>

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>>     

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