IG Living Blog

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Posted on 25. February 2011

Because I Am His Mother

By Tammie Allegro

When I first came to work at FFF Enterprises, the company that publishes IG Living magazine, I knew nothing about intravenous immune globulin (IVIG). I couldn’t name a single primary immune or autoimmune disease. But, once I got settled and started to learn about the IG community, I was dumbstruck by the number of diseases that I had never heard of. I began reading IG Living all the time, taking home issue after issue to learn as much as I could.

It wasn’t long before I learned a tremendous amount about IVIG, illness statistics and disease states. Then, I met Tyler and his mother Raschelle, and quickly realized how little I knew. Statistics are one thing, but when you put a face on a disease, it adds a whole new dimension.  The education I have received from my friendship with this family is priceless.

As the mother of a child who has primary immunodeficiency disease (PIDD), Raynauds phenomenon, eosinophilic esophagitis (EE) and steroid-resistant asthma, Raschelle is a warrior - she has to be. In the 17 years that her son has been on this planet, he has had so many surgeries and hospitalizations that you almost lose count. She hasn’t lost count. With obscene detail, she can recount the many trips to the emergency room, as well as the countless doctor visits and close calls. She can also recount for you the millions of times that she has answered the question, “Is he really that sick?”

When your child has an illness like PIDD, there is nothing obvious for the world to see. And, those of you with chronically ill children know that this presents many challenges when trying to care for and nurture your child.

Raschelle can recall with great clarity the first time Tyler stopped breathing, his first trip to the emergency room and his first IVIG treatment. The amount of detail stored in her brain is amazing. She speaks like a doctor with 20 years of experience practicing medicine.

According to Raschelle, when your child gets really ill, you quickly find out what you are made of. First you fight for appointments and tests, then you fight for diagnosis and treatment. Socially, life is a fight as well; you have to fight for your child’s right to be safe and healthy by keeping them away from other children who might be sick. Raschelle has constantly fought with a system that was created to keep kids in school and, therefore, loses sight of those who are chronically ill and may need to live by different rules. She also has fought with insurance companies over claim processing and denials. In a sense, Raschelle is fighting with the world to get them to understand that her son is really sick.

Spending your whole life fighting might cause some people to become angry and bitter, but not Raschelle. She is simply resolved to stay focused on what matters most. When asked why she never backs off or gets discouraged, her answer is simple: “Because I am his mother.”

What about you? Share some of your fiercest mothering moments, and offer some tips to parents who are just starting on this journey.


Comments (2) -

11:41 AM on Saturday, February 26, 2011

I have many fierce mothering moments!  My children, thankfully, are quite healthy.  I am the one with PIDD, and a plethora of other health issues.  I was widowed when my children were 1 and 2.  I chose to raise my children in a small town, which I discovered had definite "down-side" when they entered/attended grade school.  

In a town with less than 5,000 people, it didn't take long for people to discover I was "different."  For example, the time my son told his first grade teacher that I would be late picking him up that day because "mommy is getting the needle in her arm again."  Boy, did rumors start to fly!  I would find out that other mothers were concerned about letting their children come to our house to play.  I would hear people whispering that I had hepatitis or HIV.  At one point I was questioned by the school whether my children posed any health threat to the other children.  I had many fierce "mommy moments."  Thankfully, my children, for the most part, were oblivious to the rumor mill.  I gave a number of people quite an education about PIDD in those years.

To other parents, DON'T BACK DOWN....EVER.  Educate yourselves as much as possible about your or your child's diagnosis.  Feel free to educate anyone who wants to know more, or those who NEED to know more.  Raising awareness about PIDD and other immunological diseases is important. From my own experience, I have found that educating others about this made things much easier on myself, and my children.  Never fear the truth.  

12:15 PM on Sunday, March 06, 2011

I am a little  late seeing this blog- but I think my Mom was the fiercest person I knew in trying to get MD's  to see there was something wrong with me.

It started for me at  age 4 with a sudden dose of double pneumonia ;  the best a local RI pediatrician could tell her  was I had something missing in my  system but he did not know what.Treatment was an immediate shot of pneumonia and bed rest and many egg cabinets. (frappes)

Followed many scenes with my mother begging or demanding Md's figure out why  I was always sick. No one did- despite all the signs we now see as so evident- frequent infections; muscles problems;stomach issues;  cancer etc.
Sinus surgery and 13 other surgeries over the years.

Up to age 4 i was a healthy little chubby baby raised on backyard pruduce and rabbits and chickens.
After I was sick the smell of food would make me sick.

At age 57 when finally diagnosed I went to see a Boston  immunologist who asked me 4 times during the conversation- "Did no doctor in RI  tell you to come to Boston when you were a child? ' The answer was no. He seemed incredulous.

After all I live 50 minutes away and the pioneer  research MD for this disease Dr Rosen was giving gamma shots to children  in the 1950's when i first came down with double pneumnia.

My only regeret is my Mom passed at 93 in April 2003 and in December I was tested and Jan 2004 told I had IGG#3 deficiency. Feb 2004 I started IVIG.
Wish she could have heard that she was always right- there was a reason I was always ill.Wish she could know I can now eat foods I never touched for years.


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