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7 month old with IgG deficiency

post #1 of 7
Thread Starter 
Hello. My daughter is 7 months old and was diagnosed with an igG deficiency at 5 months. Since 2 months old she has had infections. 2 ear 2 upper resp. We are still waiting to get in to the specialist. Her pediatrician doesn't seem to have much knowledge on this deficiency besides telling me its very common. Since she was born we have struggled to get her on an eating schedule. Some weeks she does fine eats babyfood 2 to 3 times a day and bottles every 3 to 4 hrs. Then the next week its a struggle to get her to eat anything. She was 14 pounds at 4 months and has failed to gain. She will gain up to 15 and then lose it again. She also had heavy sweating all the time up until a few weeks ago and suffered 21 grueling days of non stop diahrea. Some doctors tell me she's not wanting to eat the formula because most babies with igg def. Are lactose intolerant. Other doctors say its due to teething. I read on a site that there were some diseases related to igg def but can't seem to get any info past that. Are there any other moms struggling with this or know anything to help? What diet to try? She seems to have very bad belly aches during the day we wonder if we can fix some of this by giving her certain foods. Seeing her scream in pain is just too much. We keep getting told to ask the specialist.
post #2 of 7
Have you never seen immunology?

When my son (who has a metabolic condition) couldn't get into genetics/metabolics he got so sick we had to take him to a Children's Hospital ER where he was admitted. Anyway, suddenly we were in with genetics instead of waiting for an appointment 6 months later. I guess I'm wondering if taking her to a Children's hospital with her next infection might help you see a specialist sooner?

I would want a cystic fibrosis test. This is a sweat test. I may be way off--my son has a mild IgA deficiency and some IgG subclasses are low. They did a CF test for him so I would think it might be warranted for your daughter too. For him it was the growth issues that prompted the CF test and it looks like you have growth issues. My son had severe reflux and has some malabsorption probably.

The pediatrician should be able to order a sweat test for Cystic Fibrosis. I would insist unless she's already been cleared or they could give me a very good reason it wasn't warranted. Pulmonology would likely order one. If you could get into pediatric pulmnology sooner (given the upper respiratory infections and risks of lung issues with igG deficiency).

We've done things to try to boost my son's immune system but he was older and didn't have issues with dairy either. I think we were targeting the IgA. I really hope you can see immunology and/or pulmonlogy soon.
post #3 of 7
Thread Starter 
Hello! The appointment to see the immunologist is at the end of the month. I just want to know if anyone can give some advice prior. We can not get in any sooner. I failed to mention they did rule out cf by a sweat test 2 weeks ago.
post #4 of 7

I am so sorry and I hope that you will find the answers that you seek.

 

Has her IgA and IgM been tested, or her adrenal or thyroid function?

The reason I ask, please hear me out, is that I had a dog with Immunoglobulin deficiency (IgA, IgG and IgM) due to a hormonal imbalance, presumably since 6 months of age.

 

She had severe food allergies and infection after infection (eye, skin, urinary, ear, etc). She also had malabsorption of food as well as medication.The vets were stumped so I researched and read and came upon an author, a veterinarian, Dr. Alfred Plechner and was intrigued by his work so contacted him. I learned that the immune system is regulated by the endocrine (hormone) system, in humans, and all mammals. If the hormonal levels, specifically adrenal cortisol and adrenal estrogen and thyroid are not normal range OR the actual hormones are defective (bound), then the body cannot utilize them properly and it effects the immunoglobulin levels, which in turn, leads to immune deregulation.

 

Once my dog was tested and found to have this imbalance, it could be corrected with hormonal supplementation, similar to how a diabetic doses insulin hormone. The dosing was individualized, so it was just enough to bring her to normal levels. Once we did correct her adrenal (defective cortisol, and excessive adrenal estrogen) and thyroid levels, her immunoglobulin levels came up to normal, and remained that way for 7+ years, due to daily hormonal supplementation in pill form. She was not getting anything that her body was not supposed to create on it's own. It was similar, as I said to insulin replacement, providing the body with what it should have been producing on it's own, and never more than it should have, or would produce in a normal healthy body. She was without infection for years and the immunoglobulin levels stayed within normal range for years. As she grew eldery, it was not as easy to regulate the hormonal levels, but never the less she was in much better range with meds, and the IgG and IgM stayed within normal range but the IgA would occasionally drop, and she would have an infection which usually meant that her dosage needed to be titrated to bring her IgA back into range.

 

Dr. Alfred Plechner actually lectures to physicians and his research is available from the Broda O. Barnes M.D. Research Foundation. Townsend Letter also has published a lot of his work. I have his contact info if you would like it. The following info pertains to animals and humans http://drplechner.com/learn/plechner-syndrome/

 

One thought also, would you be open to feeding breast milk? Has baby been on it already? Whether you induce lactation in yourself (info on Kellymom website) or if possible find donated breast milk? Is she on soy or cow milk based formula? The reason I ask is because if by chance she does have a hormonal imbalance, the soy actually exacerbates the problem, and decreases immune function.

 

I wish you well on the immunologist appointment but would reccomend you also consider an endocrinologist, since immune function is largely dependant upon thyroid and adrenal function. These two areas of medicine specialty, immunology and endocrinology should go hand in hand but often do not unfortunately.

 

One last thought you may wish to read the work of noted Endocrinologist William McK. Jefferies. His life work involved correcting immune dysfunction due to thyroid and adrenal imbalances. Ironically both he and Dr.Plechner were working on similar bodies of work for decades . http://www.gotodrdoyle.com/william-jefferies-md-cortisol.php


Edited by Asiago - 2/11/13 at 4:09pm
post #5 of 7
Thread Starter 
Thank you for the advice! When she was born she had a respiratory infection and was in nicu for 9 days. They fed her through her belly button and by bottle by way of me pumping. I attempted to breastfeed for the first 6 weeks and she never latched on. We tried her on soy and lactose free. There has been no change. They ran tests to check her thyroid and said its functioning normally. When she was first born her pku came back abnormal and did the retest. The restest came back normal. Every time I mention the pku they tell me that is not the problem and will only refer to the immunologist for now. Can the pku change? Does anyone know?
post #6 of 7
Quote:
Originally Posted by blp08c View Post

Thank you for the advice! When she was born she had a respiratory infection and was in nicu for 9 days. They fed her through her belly button and by bottle by way of me pumping. I attempted to breastfeed for the first 6 weeks and she never latched on. We tried her on soy and lactose free. There has been no change. They ran tests to check her thyroid and said its functioning normally. When she was first born her pku came back abnormal and did the retest. The restest came back normal. Every time I mention the pku they tell me that is not the problem and will only refer to the immunologist for now. Can the pku change? Does anyone know?

Hmmm, I agree that it may be worth persuing. I did find a bit about confirming the results as well as false positive results:

 

Quote:

The diagnosis of PKU should be made in the neonatal period. Plasma phenylalanine

is not detectably elevated in cord blood. It starts rising within 24 hours after birth and

can reach levels of 20 mg/dL or more within a few days to a week. Despite the

presence of newborn screening programs, 10% of

phenylketonuric/hyperphenylalanemic infants miss being detected in the newborninfancy

period.

Prompt confirmatory testing is required even if there is evidence to suggest that one

of the situations associated with false positive screening is present. False positive

results can be caused by: inadequate or early specimen collection, heat damaged

specimen, prematurity, hyperalimentation, or antibiotic therapy. The presence of any

of these factors does not exclude the possibility of disease.

 

Link:http://www.state.nj.us/health/fhs/nbs/documents/pku_prof.pdf

post #7 of 7

My son has an IgA and IgG deficiency.  He's had feeding/eating from the start.  He has food allergies.  He's on the autism spectrum (Aspergers).

Depending on how low your daughter's levels are, she may be treated with immunotherapy.  The Immunologist should be able to answer most of your questions.  I know it's difficult waiting for an appointment.  

 

When you go to your appointment, make sure to ask the Immunologist how often he/she will be seeing your daughter.  My son goes every 6 months (but would sometimes go every 3 months if he was going through a time with many infections/illnesses.)  Once you find out how often, make the next appointment with the receptionist before you leave the doc office!

 

Feel free to ask me questions.

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