Advice please for my 7 year old daughter

[notbreakingdown]

Hello all.
I've come to this forum for some support and advice as my daughter has just had some blood results which mean she'll have to have antibody replacement therapy.

Lois (my daughter) is 7 and has been ill a lot since she was about 3. Recurring chest infections are the main issue.
We asked her doctor over and over again for tests but kept being told it's just asthma and not to worry.
Finally we got them to listen and she's had tests for igM, igG and igA which were all very low. She's also had a CT scan which shows she has bronchiectasis.

It's all still very new and wrong don't have a name for her condition yet and I'm finding it very hard to cope. I keep bursting into tears and wishing she was just well.

Does the replacement therapy make you feel well? Do you stop being ill like some kind of miracle cure?
Is she likely to die early? I have so many questions!

Thank you for taking the time to read.

Claire x

[notbreakingdown]

Sorry, that's not supposed to say wrong, it's supposed to say we!

[mali42]

Hi Clair
My body stopped making iga, igg and igm a long time ago and i have infusions once every 3 weeks and it keeps me reasonably well, I have had no infections this year so far, they tell me i should expect to live as long as most people and i have slight bronchiectasis so for me it is a miracle cure,

I hope she starts to feel better once she is on an established treatment, its horrible when one of our children gets ill and i can understand you bursting into tears all the time, 2 of my kids were diagnosed with diabetes when one was 7 and the other 15.

I forgot to say welcome to the forum and don't be afraid to ask any question.

Malcolm

[notbreakingdown]

Hi Malcolm
Thank you.

It good to hear that it's a positive outlook.
I'll find out a lot more on Wednesday when we see Lois's specialist but I'm an impatient person!
Thank you for your reply

[john]

Hello Claire,
Welcome to our forum!!
It's a terrible thing for a parent to bear, a sick child, but it's so much easier when you know and understand why they are sick.
The tests that Lois has had done do point to immunodeficiency, and whilst this is nearly always a chronic condition, at least it's treatable, and the treatment gives the patient a full life, and when the diagnosis is made early and treatment begins straight away there should be nothing to stop her having a completely normal lifestyle.
Like Malcolm, I have immunodeficiency, I have been treated for over 20 years now, and apart from the small amount of time I need to give up every three weeks for my infusion of gamma globulin, my immunodeficiency hasn't stopped me doing anything I want to do at all. We all still get the odd infections, they usually start by catching a cold, but with antibiotics these breakthrough infections don't last very long at all.
The outlook for PID patients IS positive, don't worry about that, and if you need to ask questions, vent your feelings or just chat about how Lois is doing, you know where we are!!

[marksmom]

Hi Claire,
My son was diagnosed with an immune deficiency when he was 3 months old and started on IVIG, or antibody replacement therapy as I believe you refer to it. I remember experiencing the whole gamut of emotions and anxiety for a long period of time, very worried for his future and all possible things that could go wrong.

For me, time and knowledge were the best coping mechanisms. I would encourage you to learn all you can about her diagnosis. If you are in the US, the immune deficiency foundation (primaryimmune.org) has excellent resources, as does the national organization of rare diseases (NORD). They have books for you and your daughter to help you both understand what is going on and what you can expect. Forums like this are a good one to ask questions, as well getting established with a good immunologist.

Mark was on monthly IVIG until he was 7, then we switched to subQ - weekly infusions that go into the fatty tissue - not a vein- and done at home. He's 12 now, and has only had 2 infections in the past 3 years.

When he was a baby, I worried about so many things and those darn nasty germs are impossible to control for even the most Type A personality. I can tell you that he lives a pretty "normal" life - 4H and football are his main activities (not including the ipod) and I'm not constantly on alert like I used to be - just watchful and careful of situations that may put him at risk.

I hope things go well for you and your daughter.
Best wishes -
Marksmom

[mimi1]

Hi Claire,

I am 64 years old with CVID on weekly Gamma 15 grams and my grandaughter Amanda 10 has CVID also diag
I believe 3 years ago, on weekly Gamma. We talk on Sundays as we get our treatments the same day. I was so fortunate to participate in her diagnosis straight away at 7, and am happy that she will live a pretty "normal life" At first, the docs wanted to test her immune system and took her off Gamma for a short while, that was tough as she started up with the frequent infections, but they did put her back on after six months. I didnt get diag. until 58, my life has been tough with frequent infections and symptoms,and has resulted in periods of acute debilitation at times. There are residual symptoms from some of the infections.

I do believe that early diagnosis is somewhat of a miracle for Lois and Amanda when I compare their life with mine!

What progress for our progeny!

Take care, well wishes for your family, I hope that things have improved into 2014,
Mickie (mimi1)
Buffalo, Wyoming

[daisy]

Hi Claire,

My son was diagnosed last September at the age of 17 and like you I went into melt down. Didn't know how to support him because I didn't know enough about it. It was when I asked the consultant how long he needed treatment for, thinking 6 months maybe, when she said for life I was distraught, but on a positive note he started treatment in March this year and I can honestly say it' s been the best thing to happen to him. Wish he had been diagnosed earlier and not had to go through all the infections he has had in his life. We go every three weeks, the nurses are so lovely and caring and he feels good (doesn't get tired like before) for about two and a half weeks after, when then he knows his next treatment is due. I hope all goes well for your daughter and you see the positive effects we have seen with our son, take care.

[john]

Well put Daisy, that's the experience of most people who have our diagnosis and replacement therapy. Your son is young, and he will undoubtably see lots of changes in the way his treatment is delivered during his life...I did iVIG in clinic like him for 20 odd years and now do weekly sub-cut at home, but people are already talking of bi-weekly sub-cut as home therapy, and I'm sure this trend will continue!
Welcome to our forum, by the way, and keep us up to date with any thoughts/worries/ideas that you have that others might find useful!

[mothergoose]

Hi Claire
I have had both sides of this.
One of my son's got sick enough that he was house bound for about 7 years, 1/2 of the specialists he saw figured it was in his head, or mine I am sure. I was being over protective, the other 1/2 had no idea what was the matter with him. Agreed he was quite sick but no idea with what,could find nothing that help him.
I went through the whole emotional rollercoaster that goes with that.
I ended up finding his diagnoses by watching Mystery Diagnoses on TV. He is now on medication for life, that he has changed his life back to normal in every way. He travels, goes to University, works, a far cry from that boy that couldn't make a 3 mile car ride to town, and was in constant pain.
I just just look at it if he is a diabetic, no one would think twice if you said your child was a diabetic and would need to be on insulin for life, why should it be any different.

I have PID and some other things. I have had PID for ever, was diagnosed with it a few years ago, but only started to get treatment with IVIG last month. I have been sick with something all my life, sometime some very strange bugs that they have no idea where I would have got them from etc. Bugs I shouldn't have been able to have caught and bugs that took forever to get rid of.
I have had one treatment Mid Aug. 2 weeks later I got a UTI and a lung infection, so I am on antibiotics.Good part of this is I am not as sick as I usually get. I am have more testing done and my need some tweaking done to my treatment.
I am very confident though that now that I am on IVIG treatment, my life is going to change. I am sure I am not going to be sick as often and when I get sick I wont be as sick. I could be wrong but I think that thing improve the longer you are on the treatment, and once they figure out exactly what treatment you need, it is individualized.

So my opinion is never give up, take a book to keep all your son's records in. Take it to all of your son's appointments, keep records of all appointments etc yourself, write down ? you have before you go so you don't forget to ask. Keep notes of how he feels and new symptoms good and bad between appointments. It may take a bit of time but things will get much better for your son, it is great he has been diagnosed young and saved years of suffering and possible damage to his organ that some of theses bugs can do.

I am on the waiting list to learn how to give the treatments to myself. I can't wait to be able to to this. I will be able to do it at home for a shorter period of time, once a week. Some people seem to like receiving it this way others like to go once a month and get an IV treatment. I think doing it at home once a week will fit into my life style much better.

Good luck I hope things go well for your son.

It in normal to blame yourself in someway or another when your child gets diagnosed with something like this, it's not your fault, best thing you can do for your child is be their advocate.

Mothergoose

[perfectlypeg]

I can't remember where I heard this but......I was told that if children receive immune treatment, that after about five years of treatment they have a shot at being cured. period. But it is something complicated dealing with their stem cells being more trainable? Does that make sense? The older you are to be diagnosed, well most of us know about the constant life of infusions.
Sometimes I really can get agitated by the ignorance of doctors. I am fighting this battle forcing medicine to deal with me because I believe that if we don't, then it will be up to our children's generation to deal with it.
Think about some of the other diseases where the first wave of patients succumbed to the disease, but now there are better odds of wellness for others. I call it the forfeited generation where every emerging disease loses about 20 years to ignorance which is about one generation.

[marksmom]

Hi Peg,
My son is 13 and was diagnosed with an immune deficiency at 3 months. He started IVIG at 3 months and was on it until he was 6, when he transitioned to sub Q. I had many, many conversations with Mark's immunologist when he was an infant/toddler about outgrowing this....I know in Mark's instance (CVID), there is no outgrowing it. It's just the way his body is. I don't know your daughter's condition or the details of her care, but for Mark, I remember clearly Dr. K telling me that I needed to look at Igg replacement as like glasses - it doesn't cause the primary eye problem to be gone, but it 'fixes' it of sorts. I will be the first to say I don't know much about how stem cell therapy are curing SCID and such as I think you guys from the UK are far more advanced than us on the other side of the pond. I read the articles with interest and excitement, but can't say I completely understand it.

I have had to be an advocate for Mark, too...it was difficult when he was younger and his health was more precarious. You know your child, and you know when something's not right. Sometimes you have to stick to your guns. One thing that has helped me have courage is the knowledge that at the end of the day, I am the one who is up at night, thinking of Mark, not a doctor. I am the one who has invested all of myself into his life and future, and that gives me the right to express my concerns.

I think you are quite right about knowledge coming out...it is amazing to me with technology how different things are now then when Mark was a baby. I think I would have been a lot saner had I a group of fellow PIDers like this to bounce things off of and be encouraged by.

Best wishes to you,
Rachel
Mom to Mark, 13, CVID

[gillie]

Hi Claire. I'd like to reinforce any impression you may have formed of the benefits of replacement therapy. There's every reason for you to expect that your daughter's life and state of fitness will be transformed. It won't be overnight, but as she has successive treatments, you'll notice that she doesn't pick up every passing bug, she doesn't feel so drained and tired all the time and generally feels better. I hope all goes well for her. Please keep us posted.
Best wishes,
Gillie. [/font]