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Ig G1 Deficiency

Syd_Mum
0 Recommendations

Hi, I was wondering if anyone else has been diagnosed with Primary congenital Ig G1 specific deficiency. My daughter and I were diagnosed with this about 18 months ago.

We have had a really hard time getting useable information in regards to this. Most information seems to cover G2, G3 and G4. Mostly, it just says G1 is very rare. I would love to hear from anyone who has been dianosed with this, or anyone that would have much information in regards to this.

Explore topics in this discussion:

Diphtheria Tylenol Meningitis Falls Penicillin Tetanus Pneumonia Acne Probiotics Prednisone Benadryl Naproxen Stress Cefzil Asthma Arthritis PFAPA Creutzfeldt-Jakob disease Allergies Physical therapy Fever Rubella Constipation Rashes Job syndrome Depression Acetaminophen Diarrhea

40 replies

Tamyra

I have IgG1, IgG2, IgG3,IgG4, deficiency. I think the only information you find will tell you what type of infections you are less immune to. Are you and your daughter having any kind of treatment? I have IVIG every three weeks it seems to help.

Syd_Mum

Tamyra thanks for replying. Yes we can only find info on when its multiple. Everything Ive read on G1 just says its rare and forms approx 60 to 70 % of immune system, and that it covers virus's and bacteria. We have been told to avoid groups of people, anyone sick and airconditioners, nothing much else really.

I started the gammaglobulin injections monthly, after 2 months I decided to stop them as in some ways they made me feel worse.

I also wondered what would happen in the scenario that we could not take antibiotics or penicillin, daughter has already started reacting to antibiotics (ceclor) with a full body rash. I thought that gammaglobulin might be necessary if this occurs in future.

I really dont know and as I have not been able to find much information, its more hit and miss.

Tamyra

I am sorry to here you are having so much trouble, I had a difficult time when I first started treatments. I think the most challenging part is not being able to figure out what is making you feel bad. I could have been a virus at the same time as your treatment. Yes taking antibiotic's (even rotating) they all make me sick now. I am on IVIG, before treatment I am given benadryl and cortisone. Even with treatments you have to be careful, I catch things very easy. I am just getting over a stomach virus, it has been about 7 days now and just today I think I maybe OK.

Good Luck,
That state are you in, I may have know someone close to where you are that can help you better understand how to care for yourself and daughter.
Tamyra

Syd_Mum

Tamyra hi,

The person you know, is it a health professional or a person who has a similar condition?

We are in Sydney, NSW, Australia.

In the last 10 years I had turned to natural therapies, even studying homoeopathy, kinesiology and many other modalities in attempt to improve our life.

Daughter has recently returned to high school after 18 months of home schooling in an attempt to see if she can this time.

The lifestyle we adapted to, was keeping us a lot healthier, but it is not really a lifestyle.

jennFL

Having dealt with this all my life I can say with confidence that the only thing that will protect you is IVIG, usually monthly. The earlier in life you can start it, the better-the less damage is caused overall. By getting other people's antibodies your lungs and GI tract are better protected. The infusions don't protect you 100%, but infections go down dramatically. I've been a homecare nurse for 15yrs, and despite being around sick people all this time have been fine. But the ear, nose, chest infections and GI problems (if you have them) aren't just annoying but will cause damage over time if not prevented. The IDF (Immune deficiency foundation) has a lot of info, plus yahoo's PIDD (primary immune deficiency) support group is large and informative. Good Luck!

Tamyra

Yes I agree with Jen, the people I know are all in the medical field, I tried natural treatments just to try helping with the infections, I have no proof it worked. I have been to many doctors in many states but I am sorry I had not contacted any in Australia. The only thing I can tell you is find a doctor you trust, remember natural remedies are medication also and can not treat emergencies, taking them could interfere with other medical treatment. Don't stop trying to be healthy what you eat and care for yourself is the part of this disease you do have say in.

Syd_Mum

Thanks Jen. Yes we have had it all our lives too. and thank you for the sites. I'll take a look again, with fresh eyes as I last looked when we were diagnosed. I will read some more about the gammaglobulin too.

Tamyra I have found there is not a lot natural therapies can do, mainly because if it were just a low immune you could rebuild it, but with the G1 its just not there. You cant build what is not there. It can help a little in assisting in destroying free radicals and the like. But yes I am a strong believer in healthier diet and lifestyle as that is the best bet.

We are under a professor. I saw a few different local doctors when we were diagnosed as my doctor had moved on to another area. Its amazing how little is known even by GP's about this, but then again I guess it is a specialist area.

AjAX

My daughter 15 was diagnosed with IGG1 only in November. You can't find alot of information. I never know when to take her to the doctor. We have gone through 2 rounds of gammaglobulin. My doctor (allergiest/immunologist) said it would take at least 2 rounds before you notice any energy. the last round she became really tired on sat and was due for a treatment on tuesday. she looks healthier but this treatment will tell. it's hard to tell because they said she was low on iron as well. We have a lot of symptoms of the other but they said it goes hand-in-hand. the first treatment she was sick and the second the only side effect was migraine. i want to change her diet just not sure how. It's very frustrating because she has muscles that swell and hurt and then two days later not swollen. It appears to be inflammation and her lymphs but dr doesn't see relation. Does this happen to your daughter? We are trying naproxen for one month to get the inflammation down but with her stomach issues not sure she can handle this. Please keep me posted because you are the first i've found with "only" this. What antibiotics is your daughter sensitive too? We can't take Cefzil and seems to react to certain dyes in meds.

AjAX

I agree with someone's comment on your treatment. the first treatment we had my daughter was sick for 3 days but i think she was fighting something as well and didn't realize it because symptoms didn't coinside with what the doctor's and pharmacist told us about the gamma. the symptoms were gone the second time. The allergiest also told us that there were several brands of gammaglobulin and you might have to try several.

Syd_Mum

Ajax hi,

We have iron deficiency also, and I have d deficiency. My daughter constantly gets aches and pains. We believe it is because she has lots of small infections going on that might not be noticable by most.

With your daughters lymph nodes is this after the gammaglobulin or before commencing?

I spent nearly 4 years having temperatures (for no apparent reason). The exhaustion does seem to be part and parcel with it, maybe because of things going on inside the body that we are not able to see.

Is she able to go to school?

We have also noticed that we get sensitive to many foods at times, (rashes, itchy throat etc) and after a time are able to eat them.

However my daughter is unable to eat most fruit. For some reason her body reacts to these.

With diet we play it by ear. Try to give her as many vegetables and meat, but avoid preservatives and processed foods. I have noticed the more meat she has the better she feels. I have in the past had her on macrobiotics, and other different diets. At one stage she was under an environmental specialist who reduced her food intake to lamb and pears only. This however made no difference. So i would be wary of the different diets, but do make sure she is getting lots of vegetables, meat and fruit, if she is ok with it. Avoid dairy while she has congestion. However I would make sure to stick to natural foods.

With taking daughter to doctors, we go whenever she gets infections to keep an eye on it. We are also there monthly receiving desensitization injections, which have helped reduce some of the more constant reactions.

Basically the info I have found, to break it down means she would have little or no immunity to Virus's and Bacterias.

Watch for depression too as when she is sick for so long its natural to be feeling that. It takes its toll.

It can be frustrating and scary watching your chid go through it too without understanding how she feels. I joke with my daughter that we have had it all our lives so we dont know what its like to be healthy anyway :)

Sorry, I didnt mean for this to be a novel!! :)

Tamyra

I don't know if I can be any help but I will try,
I have been on gamma for 1 and 1/2 years. all of the problems you are talking about I understand, the doctors can't figure out why these things are happening, they seem to think it is unrelated. I'm feeling a little less crazy after reading your posts. As for the diet I changed my food about 6 months ago, I have lost 25 pounds that was a good side effect. I was reading a post from a girl who was trying to fight the side effects of staroids. The best published guide
I found was South Beach Diet. The things I found that have make the biggest difference in how I feel is white bread (pancakes and stuff like that), sugars. When I first started the diet, I picked one 24 hour period a week I could have anything I wanted. It only took a couple of month before the fun in that to wear off. Also when I eat fruit I always have a protein (like apple w/ peanut butter or cheese). I also eat allot high fiber. I take fiber everyday. The high protein caused constipation so I take senna also, sound a little counter productive with IBS, strange it worked. Also yogurt everyday. As my swollen intestine calmed down, my stomach isn't as bad.

As for the swollen muscles, I found that an interesting comment. I have been trying to figure that out. If I use any muscle with stress 48 hours late it feels like I have been beaten. So I do something everyday but try to keep it very slow and controlled. I don't understand it at all, the doctors always tell us PT, that is like a sentence to torchure. I feel like they think, I just don't want to help myself. I am going to print this post for my doctor, I think it is really important.

The hardest part of this autoimmune medical people don't have enough people to work with, also all of our symptoms are in different specialties and they all think the symptom belongs some where else or is unrelated.

Thank you for posting, I have been dealing with this for at least 12 years, but as I go over you life, I have had this my whole life. I believe there has to be a common denominator.

I hope this post helps, I am a not a good writer but am trying to improve.

Love and Light to all

Syd_Mum

Tamyra I think things like wheat do cause probs in many, we take inner health plus regularly. We also take fish oil at times for joints. Its just a commerical product containing probiotics. There are little things we can do to help ourselves too, but trust your gut feelings on things.

When I look at how much grief we have gone through over the years, particularly my daughter and schooling, when we didnt know.... Well my intuition helped us immensely. Not that its above medical help, but definately to be used with. In fact it was a doctors "gut feeling" after other doctors had not checked to have the final test done.

If you are reacting to wheat products, and refined sugars etc and feel better without it.. definately take it out of your diet.

You said the doctors tell you PT? What is that?


Ajax I wasnt aware there was different brands of gammaglobulin having different effects...

And so far daughter has reacted to ceclor (body rash) and high doses prednisone (with a type of acne on her back and chest) some other antibiotics dont sit well with her, but in saying that I believe they dont with many.

With the gammaglobulin I dont know, as I only had 2 doses myself over 2 months. After taking it I was so exhausted and felt really fluey for days after it, also lethargic and just overall worse than normal. After I reacted like that I was concerned with daughter receiving it.

Tamyra

I'm sorry, Physical Therapy, Thank you for your input, I hope mine helped. I have not found all the answers yet, if I had my life would be much different. Just trying to live long enough for science to catch up. I have more than just the IgG1 to balance and still learning, I plan to continue researching. I have a team of specialist I am working with someday the puzzle pieces will fit together.

Syd_Mum

Tamyra it has helped. Even knowing others do understand it. And its good to hear the feed back on gammaglobulin meds. Stay positive and re learning yes, we can do what we can do. I like to think that we actually have a new and different appreciation for life and thats never a bad thing :)

Syd_Mum

Ajax I just read one of your other posts re daughter getting sharp pains and breathing difficulty etc and thinking it was heart etc. My daughter was hospitalised around year 6 in school for similar symptoms. They kept thiniking she had an ulcer but nothing was ever found. 4 years later she still has it and we have found no reason for it. Maybe it is a symptom of it? I dont know..

shannonkot

My son was diagnosed with IGG and IGA deficiency last year. Not really sure any more about it. They told us the same thing to keep him away from sick people. Which is really hard when I have two other kids. When he gets sick he is sick for a lot longer than normal. He also has a Chromosome Deletion 4q-33. One thing they told me with his deficiency is to watch what kind of antibiotics he gets and that he should never get a blood transfusion. Not much else though.

Syd_Mum

Shannonkot I dont know anything about IGA or the chromosome deletion. It is frustrating though, particularly if your a reader, when you can't find info. I have 3 children so I am very aware re other children bringing stuff home :) And yes it can be very difficult.

Syd_Mum

Just a note, the professor we are under suggested looking under the scholar section in Ig G1 rather than normal google search.

AjAX

I'm sorry I haven't been on and I see you've been talking with me. When my daughter had her biopsy of her stomach she had so many red spots and couldn't find out a reason. Now that I read yours it must be part of the IGG syndrome. It is so rare. My other daughter is starting with the same symptoms but doesn't test for IGG. My 15 year had the same test at 10 and was fine so I'm not saying my 11 year old won't have it since she has already started. I shot down after I've been to recurrent doctor's and i haven't checked this web site. I'm sorry to talk with you then not answer. If you read this i check my email daily and it's djaan@aol.com. prob should give it out but i know the unanswered questions are frustrating. We started treatments in January and we haven't had any flare-ups since the first treatment. The doctor said it would take at least two to build her body up. After 3 weeks she is so tired from thurs. to tues when she gets the treatment. He had mentioned after she started the treatments switching to a weekly machine that takes an hour but keeps your body built up. My insurance just said i can't go to this doctor any more (out of network) so I'm not sure what direction we are headed. the first treatment gave her flu symptoms and the rest have been migraine and the next morning she can't seem to wake up. We give her bendryl 30 minutes before and during the day. The home nurse told me her experience is the patients that go to work the day of the treatment get flu symptoms and the ones that rest do not. Maybe you did too much after your treatment (i'm not sure). After the first treatment she felt like she was having a heartattach and couldn't breathe and her dr said it wasn't a sideeffect but I think it was. I'll start checking the web daily and hopefully you can email me direct. We have a lot of joint point. January it was her neck then shoulder (swelled) but mainly knee. We went to rheum who told us to do resistant stretches versus building it up. Like pilates and yoga. This has really helped. all the orthopedics kept telling us to build it up which wasn't helping. Arthritis patients do a lot of stretching. I bought a tape online and make her do it and she has to ride a bike 3x week for knee. They put her on naproxen but it's bothering her stomach so not sure we will keep doing it. We haven't tried prednisone but my youngest throws up as quick as it goes down and both can't take augmentin or cefzil antibiotics (whole line).

AjAX

I haven't heard anything about the air conditioners what is that about? Also, she tends to be iron def i'm not sure about d i need to check into that as well.

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