I was wondering is anyone here had a child on IVIG more specifically the Subcutaneous IG treatments with Vivaglobulin and could assure me I am doing the right thing by him and us as a family bear me with me as I explain what is going on.

Last year at this time I took DS to the Allergist for his asthma, constant coughing runny nose and he came back negative for everything, but his asthma showed up bigtime and he had low levels if IGG and the IGG Subclasses.

IGG is basically Gamma Globulin which "regulates" your immune system, in other words his was showing it was not working well, but the allergist felt it was not bad enough to warrant a trip to Children's Hospital to the Immunologist for IVIG.

Fast forward to 2008, DS had about 2 months without any symptoms and then bamm July he had the cough and wheezing bad and several trips to the ER and more trips than I can count to the Peds office. One of the Peds Doctors had the nerve to say DS was faking the cough for attention. I didn't think so I then started on a quest to find an answer and got an answer I was but wasn't prepared to get.

So Pulmonologist says DS's sinuses are horribly draining and need to be dried up so he adds a second nasal spray to the mix and ups the dose on the other one. He changes his inhaler based on his spirometry which is not where it should be, diagnosis no surprise allergic rhinitis and intrinisic asthma and told to see an ENT. So off to ENT he agrees his sinuses are bad, but he is too young to do anything surgically and he feels Pulmo Dr is on track with meds and we should see an Allergist. Our old Allergist does not take the Medicaid /FAMIS program so I find a new one that the Peds Office recommended and he is also a Immunologist. Testing negative, but he looks at the old tests for the IGG levels and does not like what he sees and cant understand why my child is not on IVIG to boost his immune system and why she never sent us last year.

So Off to the Hospital for specialized bloodwork for him and me (more on that next year) that is sent out to Cincinatti Children's Hospital. Results are even worse than last year and now its final my DS needs IVIG, there are two ways to do it, Once a month via IV or every week subcutaneously, DS originally chose the once a month until he called Aunt Theresa who is a nurse and realized it was a big needle so he decided on the subcutaneous way.

This is going to be a big change in our lives, we have to have Home Health come in once a week for the first month and they will train us to take over the administration of the weekly infusions which can take 2-3 hours. Its kind of ironic yet sad I trained years ago as a Medical Assistant and I only ever got to use my front office skills and now I will get to use my back office skills, but I have to use them on my little boy. We have to refrigerate this stuff, there is IV tubing a pump and gloves all kinds of stuff to store and my house is too small for us as is, but I think we will survive.

I am stressing because I start work in January with H&R Block I decided to go back this year and instead of Customer Service move back to preparing Taxes for more money, plus I am doing coin of the heart work with Social Services and the Casey Family Foundation on Reunifying Families in Foster Care quicker and through Creative Casework, trust me its a big vice for me and it means more than anyone knows to help children especially those who would have disparate outcomes or are under disproportionate groups. Then of course there is my medical needs and DH is still unable to work although SSA thinks he can and he is in a lot pain these days.

Truly I wish I could post something here or anywhere that was happy and not a complaint or about another medical crisis, but man I am getting tired of all this medical being thrown at us, I will say I am thankful all I have out of pocket for Home Health is $2 a visit and supplies depending on how they are billed is $2 and once I meet $180 before July 31, 2009 for all Co-pays for Rx's, Medical, Lab etc I wont have to pay anymore, but this is more than one family can handle you know? I swear I should sit down and start writing a book I really should this is almost as good if not better than some soap operas

Anyhow if anyone is familiar with this process I have researched it I would love advice encouragement and want to know that choosing weekly over monthly is in his best interests, Everything I have been researching online points to better outcomes with the Subcutaneous IG but like they say YMMV !

Also Gamma Globulin/IVIG/SCIG comes from Plasma Donors thousands of them, they pool them together to make the Gamma Globulin which goes by many names by different manufacturers. They always need donors there are Donor centers that pay you to donate affiliated with the different manufacturers, some Hospitals let you donate and if you request it be processed as IVIG some will handle the transfer to the Company, but hospital's don't pay to donate, Its just like giving blood, so if you give blood maybe ask about donating plasma and think about my son and others with Immune System Deficiencies like: hypogammglobulinanemia, Primary Immundeficeincy, CVID etc.

If you could send out some prayers for strength for us we are going to need it for sure as we adjust our lives to do this.

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

I don't have any words of wisdom for your choice of treatment. However, I don't understand why you would have to do the treatment at home yourself. DD is 15 and we have known a family with the same age twin boys since they were 5. The boys have little to no immune system and have been doing IVIG since they were very young. They would go to the hospital once a month for treatment. They now do the treatment at home with a home health nurse.

They are sending the Home Health Nurse for about a Month to train us, this is not done through IV into a vein its done subcutaneously under the skin, like in the belly or arms or hips. I give myself shots that way with Lovenox so its similiar but this is an infusion through the skin. They tell us it is done this way a lot, and we would see the Home Health Nurse once a month for equipment, supply check and to draw blood from him otherwise we will do it.

Now if it were by IV the first few months he would go into DC to Children's Hospital and then switch over to Home Health at home and with that he would miss at least one possibly 2-3 days of school because you have to watch him for reactions for 24-48 hrs and I do not trust his school to catch a reaction.Why do I not trust the school ? Because this is the same school who missed an outbreak of ring-worm after I found my son and the neighbor's 3 sons with it and informed them of it they never sent a letter out to parents about it. With the SCIG we can do it on Friday night and watch him over the weekend. Its more convenient and eliminates the absenteeism from school. I don't want him to fall behind he receives special ed services and is in Gifted and Talented Services for Math, is in the Strings program (violin), Chorus, SCA and is a Safety Patrol. he is a very busy child for sure and we don't want to slow him down or have him miss much more time from school than he already has. He has missed 12 days since November for his asthma and Doctors appointments.

arrgh DS says there isnt any water I guess the pipes froze gotta go get DH up, just another day in our soap opera

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

Christine I have nothing to add but I will add you and your family to my prayer list.

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Laura
Please visit my blog
http://mylifeinlaurasworld.blogspot.com/

I have a feeling, that after a couple of weeks doing it at home 2-3 per week, your son will wish he chose the once a month way.
I had asthma as a child, I remember how bad I felt and I feel for your son

I hope everything gets better, I will be praying and thinking positive thoughts about your family.

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Support bacteria -- it's the only culture some people have!

If Vegetarians eat Vegetables. Do Humanitarians eat Humans?

'Vegetarian' is an old Native American word for bad hunter.

Susiecat~ its only once a week for 2-3 hours so I think he will be fine just hope we can keep him still and not jumping up and down, going to try to do it during WWE Smackdown, he loves his wrestling and his Jeff Hardy and Undertaker.

I appreciate the prayers I am a believer in them and in miracles too.

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

I don't have any words of wisdom, but I'll keep you and your family in my prayers.
Judy