Welcome to 2017

Thursday, 19 January, 2017

Welcome to 2017 from the board at INGID !

 

We are growing weekly and now have 191 members in 32 countries.

 

INGID is looking forward to working with all its members in the coming year.

A number of exciting events and meetings are scheduled which are listed below. Please don’t forget to let us know if you are attending an event of interest or if you would like to check in with us to provide feedback on a meeting you have attended. Further details can be accessed from our website.

 

International congress of Immunology, Asthma and Allergy in Iran (ICIAAI)

14-17 Feb 2017

Theo, our treasurer will be presenting at this meeting.

 

AAAAI 2017

3rd March 2017 – 6th March 2017

INGID will be sharing the stand there with the  IDF  and Carla our president will be attending.

 

ASID (African Society for Immunodeficiency)

31st March 2017 – 4th April 2017, Zambia.

 

Theo our treasurer and and Karin our vice secretary will be attending this meeting.

 

 

ESID 2017

11th September 2017 – 14th September 2017, Edinburgh.

 

Rosalind our vice treasurer, Theo our treasurer and Lorraine our vice president will all be attending this meeting.

INGID will have a stand and while there will be some input from INGID, there will not be a full program until 2018.

 

 

ASCIA 2017 Conference

13th September 2017 @ 8:00 am – 15th September 2017 , Auckland,  New Zealand.

 

Geraldine our website manager will attend.

 

 

LASID 2017 meeting, Brazil

4th October 2017 – 7th October 2017

Carla our president will attend this meeting and INGID will have a stand also.

 

IgNs 2017

5th October 2017 – 8th October 2017, Las Vagas

Lorraine our vice president  will attend and INGID will have a stand also

 

IPIC 2017

8th November 2017 – 10th November 2017, Dubai.

 

 

 

INGID have changed the way its members can ask questions of other members. This appears to be working well. The following questions and answers were recently submitted. Feel free to submit a question of your peers!

 

ORIGINAL QUESTION:

Has anybody had any experience in giving immunoglobulin’s to children or adults with down syndrome. She wants to know this because it is known now that the immune system in down syndrome is different and has abnormalities in b cell’s, but normal IgG levels. Some of them do have (to) much infections pressure. However there is no data on how they react to supplementing IgG. So we would like to know if somebody has experience in this; does is work, makes any difference or not? And what were the criteria to start with the IgG level normal and what are you aiming for, what criteria do you use to evaluate?

 RESPONSE 1

Generally, the problem with Down syndrome children is immune dysregulation, compounded by anatomic issues which predispose them to sinopulmonary infections.  For example, their Eustachian tubes don’t drain well.  Because of their sometimes larger tongues they don’t swallow well or have a swallow dysfunction leading to aspiration.   We have had children with normal, low normal and lowish IgG levels.  We look at their antibody responses to vaccine antigens.  If they don’t make antibody, then we give them replacement therapy which, in my experience, is well tolerated.  We have also noted that the immune dysregulation can sometimes result in memory B cell issues; i.e. they make antibody but are unable to sustain protective levels.  We supplement these patients as well.

Elizabeth M. Younger

 

RESPONSE 2

Hi everybody

This e mail is timely. I am about to start SCIg on a 6 year old girl with downs/trisomy 21.

Her diagnosis is Specific Antibody Disorder and she has a history of Sino pulmonary infections, low IgM and did not respond to the pneumovax vaccine. She also has a low CD8 count which may account for some of her viral infections.

We plan to trial her for a year.

I’m not sure who sent the original e mail enquiry but I am more than happy for them to liaise with me directly to see how things go with this young girl.

Hope that is helpful

 Regards

 Geraldine Dunne

 

RESPONSE 3

I had one pt who still receive it and yes it helped a lot.  We began with standard supplementation of IgG (400mg per Kg per month) and even if we cannot adjust our treatment regarding the IgG level, we adjust it considering the infections and global health.  This little guy of 5 years old had a huge improvement with IgG treatment but was very stress with the sub cu.  That’s why, since 3 years now, he receive it by IV, each month.

Regards,

Marie-Claude Levasseur

 

 

 

1 Comment

  • Ann Gardulf - 20th January 2017

    Hi, I agree with all three previous replies. The same procedure/treatment is applied for individuals with DS as for onyone else. More support from the nurse is most often needed.

    Best regards,
    Ann Gardulf

    Reply

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