16 month old with IgA and IgG deficiency

[maddensmommy]

Hi, we recently found out that our third child (16 month old son) has some sort of IgA and IgG deficiency.  He started getting recurring petechaie during his first few months and I thought they were heat rashes until told otherwise at a well check.  His ped did a CBC and found his platelets to be normal so he dismissed it and said some kids just get it for no apparent reason.  He is breastfed and is extremely healthy, even in his first few months when his two older siblings had upper respiratory infections and stomach viruses.  Just before his 1st birthday he went from seeming totally fine to waking up to nurse with a 105 fever and jerking movements.  We rushed him to the nearest hospital and they sent us home once his fever was reduced w/ Tylenol and Motrin.  The next day I took him to his ped who saw that he had bandemia (bands in his blood, signifying a severe infection) and had him admitted to a children's hospital.  He had a lumbar puncture, blood cultures, chest x ray, and urine cultures.  No bacterial infection was found and after a few days his fever improved and he was sent home.  During that time he had a petechial rash.  Upon discharge his ped referred us to a hemotologist because his rbc, hematocrit, hemoglobin, lymphocytes, neutrophils, and ferritin were all very low.  They put him on iron drops and tested him for autoimmune diseases (they run in the family and I have Hashimotos Disease) and he was found to have low IgA and IgG as well as low IgG serum levels.  He also has high BUN and low globulin.  A lot of his CD markers are also off.  He was recently retested and the IgA and IgG are now lower.  His neutro. are borderline low (just above cut off for low normal) and his BUN is still high.  He gets petechiae for no apparent reason and after a blood draw his entire arm is covered in it.  His gums bleed on and off when I brush his teeth and he has a pale face and dark circles under his eyes.  He is not growing taller (over the past 3 months he has gained a pound but not grown in height) and he is not using many words, only mama and dada very rarely.  He recently had his second and third cold of his life (within the past 6 wks) and first stomach virus.  He is still coughing from his last cold but otherwise appears very healthy.  He has never been on antibiotics before other than two days of iv ab while in the hospital while waiting for his lumbar puncture to come back.  He also has severe ezcema that will crack and bleed if we don't use steroid cream every couple of days and generous rub downs with cetaphil and eucerin daily.  I am so concerned about him and don't know what could be causing this.  His doctors are taking the watch and wait approach but I just want to make sure we aren't missing something.  He takes a multivitimin w/ iron, probiotics, and vit. D3 daily as well as eats a very balanced diet.

[homemademomma]

I don't have much advice, but my daughter has IgA and IgG deficiency (part of her global diagnosis of ataxia telangiectasia), so I feel for you. The petechial rash is worrisome- I am sure your dr. ruled out leukemia, right?  Have you talked to your dr about IVIG? It doesn't provide the IgA antibodies but it is great for kids with IgG deficiencies. I am assuming you are seeing an immunologist in addition to the hematologist?

Sorry no advice, just a btdt. It sucks royally but you WILL figure this out and get it under control. Good luck.

[minkin03]

has your child seen any specialists? an immunologist or infectious disease doctors? i've been diagnosed with an IGG deficiency (subclass 2) as an adult, my condition went undiagnosed as a child (had frequent infections and pnemonia several times a year) and i'm currently under the care of an immunologist.

[maddensmommy]

Thank you for your replies!  He goes in tomorrow to see his regular ped because he has had a lingering cold/cough now for 2 wks (no fever and is overall pretty happy but I just want to make sure his ears/lungs are okay.)  He has not really had leukemia ruled out, but the hematologist said that because his blood counts are good that most likely rules it out?  In Aug. when he was hospitalized for a severe infection his rbcs, hematocrit, hemoglobin, lymphs, etc. were all super, super low.  They attributed it to the virus/infection and put him on iron supps.  For the first 2 months on iron his hemo., hemat., rbc continued to be low but they are now almost in normal range (thank God!)  His wbc and lymphs are also in normal range.  All that is out of range is the IgA, IgG, IgG serum, BUN, globulin and some CD markers.  We see the hematologist again Jan. 18.  I really want more questions answered, I feel like they are blowing me off because he is not a sickly child, he has only had one major illness and other than that has never had an ear infection, pneumonia, etc.  He has never been on antibiotics before.  He just looks pale (the doctor agrees) has dark circles under his eyes, isn't growing height wise (just the past few months) and has been having undigested food in his stools, I can tell exactly what is coming out of him.  I just can't shake the feeling that something is wrong..he is such a happy baby so everyone sees him laughing and being silly and thinks he is fine.  I hope that is the case, but I want to make sure.  I worry about him having A-T, noone mentioned it but its come up a few times when reading about IgA and IgG deficiencies. 

[heatherdeg]

Well, two things about your post hit me:

First, have they tested him for elevated lead levels?  My IgA deficient son had the same pallor and was dx'd anemic.  Thankfully, the wretched ped at the time was smart enough to test his lead levels because anemia seemed "off" and sure enough, they were slightly elevated.  He didn't need iron, he needed calcium drops to keep his bones from sucking in any more lead from the environment.  The culprit was the paint on the decorative trim of the doors in our kitchen.  A friend who works for the DEP said that the amount needed to raise their lead levels is so miniscule that it would boggle the mind to see it.  Not to say that there's not something else going on, but have this checked because all of the things you describe may be multiple smaller problems vs. being connected to one big problem--ya know?

Second, yes--please see an immunologist.  When my son's globals came up low and the ped ran the subclasses, his IgA came up very low.  The immunologist said that we couldn't be sure it was a true and life-long thing because during the first two years of life, their immune system is cycling up and down and isn't really stable.  So while it is good to run the tests, you can't really take them to the bank because of this instability before the age of 2-ish.  The other thing is that you will need to have their input on whether the IgA problem is so low that you will need to have a Medalert bracelet noting the need for IgA-depleted blood if there is ever an accident.  My son's IgA deficiency isn't severe enough for that.  He was dx'd when he was about 1yo and he's turning 7yo in two weeks.  He's had one hospitalization ever (for "fevers of unknown origin" for about a week when he was about 16mo) and chronic recurrences of croupe, but otherwise, we've kept him so healthy that they almost revoked his vax med exemption.  

[maddensmommy]

Thank you so much for your reply!  I will ask for a lead test tomorrow at his appt, he hasn't had it done yet (my 3 year old had one at his 3 year well check and it was neg.)  I know that his IGs were tested twice, about 3 months apart and the second time his IgA and IgG were lower than the first :(  I asked about seeing an immunologist and the doctor said that it was not necessary and that there was not one in our insurance network but I will out of pocket if it will be beneficial to him.  I am making a list of questions to ask.  I think the dr. thinks this is some sort of autoimmune process because I started having autoimmune issues during my pregnancy w/ him and I have had some strange symptoms myself (dark bruising, some petechiae, fatigue, weight loss/inability to gain weight, etc.) but I wonder if he is already so set on thinking its autoimmune that he isn't thinking of what else it may be (my son's autoimmune/lupus panel was all normal.)  I will update on what the ped says tomorrow. 

Oh, his food allergy panel came back that he has a moderate allergy to wheat.  He does have severe ezcema that will sometimes bleed, I use a mild steroid cream when its really bad but I prefer not to if at all possible.  We use Cetaphil and bathe him only 3/4 days a week in lukewarm water.  We use all free/clear detergents and do not wear perfumes or have scented products.  No one we know smokes.  I try to limit his intake of gluten but its hard w/ two older sibs (3 and 5) who don't understand and will share food with him.  Do you think that having a food allergy can cause his IGs to go down?  I would think it would be elevated..his IgE was not elevated..

[heatherdeg]

IgG & IgE problems are both allergy-related and the IgG ones usually cause the more widely recognized "allergy reactions" where the IgE ones are the allergies that often go undetected because they're not usually causing the more recognizable reactions.

That being said, our immunologist said that allergy testing a child under 2yo was unreliable at best--and that they can be completely wrong.  :/  So that all stinks.

For the eczema, I would remove all traces of dairy (casein) and soy for 2-3 weeks and see if it helps.  Eczema is notoriously dairy-related and 80-85% of the kids that react to dairy also react to soy.

And I totally agree with you about doctors getting tunnel vision.  That's why we need to be stronger advocates.  :)

Also, you might want to move this over to the Allergies forum at this point.  They are a WORLD of help on this stuff!!!

[maddensmommy]

Thanks!  If I remove all dairy and soy does what would be the best option for him to drink (almond, rice, coconut milk?) and would that mean I have to remove them from my diet, as well, as I am still nursing him..I will post over at the allergy section today, thanks!

[maddensmommy]

His ped today was concerned with his speech (he only says mama and dada and is 16 months) and also his walking..he is unsteady and falls often.  He started walking in early Oct.  He looks like he is drunk when he walks, and is not yet able to run.  Other than that, his coordination is great!  He even feeds himself w/ a spoon and fork!  I don't know what to make of this.  What would make him have delayed speech, difficulty with walking, and a lowered immune system?

[heatherdeg]

Originally Posted by maddensmommy 

Thanks!  If I remove all dairy and soy does what would be the best option for him to drink (almond, rice, coconut milk?) and would that mean I have to remove them from my diet, as well, as I am still nursing him..I will post over at the allergy section today, thanks!

Rice, coconut, almond, hazelnut... any of these are fine.  Yes--you have to do it to.  Sorry.  I know it's an adjustment because I've been doing it for almost 7 years (he nursed for the first 5 and then he was old enough that we didn't want to alienate him by eating differently  :(  ).  I personally prefer coconut.

I will say that we rarely, if ever, drink milk of any kind.  My son has seen countless specialists through the years and none of them has ever even batted an eye at this.  Not even so much as a "do you give calcium supplements?"  It's been a pleasant surprise.  Some have gone on to note the complete lack of necessity of it in our diet.  He wasn't even a particularly good eater until he was 4.  We're very much a water family.  :)

I'm sure the allergy forum will be a huge world of help!

[homemademomma]

Originally Posted by maddensmommy 

His ped today was concerned with his speech (he only says mama and dada and is 16 months) and also his walking..he is unsteady and falls often.  He started walking in early Oct.  He looks like he is drunk when he walks, and is not yet able to run.  Other than that, his coordination is great!  He even feeds himself w/ a spoon and fork!  I don't know what to make of this.  What would make him have delayed speech, difficulty with walking, and a lowered immune system?

 Did your ped test his AFP levels? Has he been evaluated by a neurologist for his truncal ataxia?

[maddensmommy]

No they have not tested his AFP levels.  I will ask for that when we see hematology again on the 18th.  His ped referred me to some program that helps to assess developmental delays but I wish he would have referred to an actual physician.  I am going to ask his hematologist that, as well.  We were also referred to a hearing center to have a full hearing screen but he said he doubts that he has trouble hearing because he is so congenial and engaging.  He responds non verbally (nodding, shaking his head, following directions, etc.) he just doesn't say words.  He also makes sounds in his throat (almost like grunting) more so than babbling consonents and vowel sounds.

[homemademomma]

Good luck- I wish I had some helpful advice for you! It took us almost a year to get my daughter's diagnosis, and I still harbor a lot of resentment toward the doctor who seriously dropped the ball- although I also have fond memories of some of the doctors and NPs who helped us along the way. I just want to say- while I have the highest respect for doctors and NPs, NOBODY cares about your kid as much as you do. And while it sucks majorly at times, you need to be your son's 100% advocate and push for what you believe he needs.  I hope you get some answers!