Anyone with a child with an immunodeficiency disorder?

[Rainsong]

[QUOTE=kai_e;16334935]He is 3. When did your son get diagnosed? How do you manage it?



He was diagnosed at 4. He also has autism and is on the more severe end of the spectrum. We homeschooled for awhile because he was so sickly and constantly being sent home due to illness. Since we moved we put him back in school *however* he is now in a self contained autism room with only one other child, so what he is exposed to at school is pretty limited. We started hm on probiotics ( i use culturelle and florostor) and I have noticed a difference in he has had very few stomach bugs this year wheras last year it seemed like he had constant diarhea. I am also a hand washing nazi and carry purelle everywhere. I will say as the years have gone by he seems to be getting heartier in general, and our immunologist told me sometimes kids grow out of IGA. Dont know if that will happen for him but its nice to have hope. I worry about his future since he is not "typical" and how he will manage when he is an adult and I am gone.

[twinmomstl]

Originally Posted by kai_e Thank you mamas for reading and making me feel like I am not alone. We will meet with a nutritionist and do GI testing to see what is going on there. Based on the results we will modify his diet and see if that has an impact. Right now, by looking at my excel chart - by the way am totally sad that I keep an excel chart of when he is sick - he has a fever usually with some symptoms (runny nose, cough, congestion) about every 10 - 12 days. He had a really good run this summer where he went 2 whole months without a cold! It was so awesome, I can't even describe it. It was like being transported back to when he was 16 months old and had almost never been sick. He started getting sick when he started weaning - around 18 months and at first we thought it was just normal stuff but he had his first ear infection that never went away, even with augmentin. We got tubes which helped that problem but then he started getting pneumonia ALL the time and spiking these crazy high fevers. After about 5 months, 3 hospital visits, chest x-rays etc everyone was finally convinced I wasn't a nutjob and he REALLY was sick all the time and we did blood work. That is when his iGA and iGM levels were noticed and they have been dropping ever since. His iGA is now completely absent. Both his pedi and immunologist drew the conclusion that his body has never made iGA but that he was getting it from me via nursing. By the time we found out about the levels though he was already well weaned. I tried to re-lactate just so I could pump but was unable to.

So is your breast milk what protected him those first months? Could it potentially help him again? Aren't there meds that can restart lactation or even donor milk? I'm just curious here. Breast milk fascinates me.

[kai_e]

Originally Posted by twinmomstl So is your breast milk what protected him those first months? Could it potentially help him again? Aren't there meds that can restart lactation or even donor milk? I'm just curious here. Breast milk fascinates me.

Yes, IgA is found in breastmilk in great quantities. It is the immunoglobulin that lines your nasal passages, throat and intestines. So effectively for his first 18 months, it didn't matter that he wasn't producing it, because I was providing it for him through nursing.

I tried re-lactating after we had his diagnosis and was unsuccessful. We have looked into donor milk but for a variety of reasons, it is not an option.

[ssand23]

Originally Posted by mekat They knew he had an immune and kept bringing him into the nurses office with all the sick kids because the nurse wouldn't give him his meds in his classroom. It was a nightmare and he was sick all the time.

Thank you for posting this!! This explains so much. My son just started a special needs preschool in our local public elementary school in January. He keeps getting sick. He has ketotic hypoglycemia, severe allergies, suspected Eocinophylic Esophagitis, among other things and the school has him go to the nurses office at least once a day to have his blood sugar tested, where all the sick kids are. This would explain why he keeps getting sick! The school keeps saying "oh kids get sick often when they start school, it happens to everyone" but then they send home attendance notes complaining that he's out sick too much. I have older kids and I know it's common for kids to pick up a lot in preschool but he's only been in school for 2 months and has been absent 20 days, about 1/3 of the time he's been there. He keeps getting ear infections, a bad cough & upper respiratory issues.

What did you do when you realized that was the problem? Was the school willing or able to work with you to find another solution/location to give him his meds? I feel like this explains so much of why my son has been so sick but opens a new can of worms since our school has given us problem after problem and we are at the point of contacting advocates for help.

We've wondered about possible immune issues since my son got sick so easily before school started. When we go to the drs, if we stay in the waiting area, he always catches what others have. He picked up illness everywhere. We go to WIC and I had to get a letter saying that he can't come since he always gets sick there, too. With his medical problems, he has feeding issues. He can't take oral meds. We have had to go to the ER for IV meds many times so it gets to be a bigger issue when he's ill. Thankfully he can have Tylenol suppositories & we use Vicks vaporub for congestion.

Since starting school on January 7, he's missed 20 days of school. We saw an infectious disease specialist before school started. She gave us a script for blood work but said it was no rush but the whole issue you mentioned with going to the nurses office really would explain a lot.

I'd be curious to know how you handled this situation if you don't mind sharing. Thank you again for mentioning this. It explains so much.

[paaterzone]

My older son has no detectable IgA. He was basically sick for his entire babyhood (as soon as I stopped breastfeeding)/toddlerhood/preschool years but his body has compensated for the deficiency and he's a relatively healthy kindergartener now. He also dealt with febrile seizures and everytime he got sick for about a year he'd have a seizure first. That was fun. His immunologist put him on 9 months of antibiotics to help his system get healthy enough to compensate for the deficiency. I'm still pretty shell-shocked from the whole experience and completely understand and relate to your fears and frustrations! We just had a second baby boy in January and I'm just hoping and praying we won't have a repeat situation. Perinatologist doesn't think it's likely but we've learned that doctors are often clueless. :-)

[kai_e]

Originally Posted by paaterzone My older son has no detectable IgA. He was basically sick for his entire babyhood (as soon as I stopped breastfeeding)/toddlerhood/preschool years but his body has compensated for the deficiency and he's a relatively healthy kindergartener now. He also dealt with febrile seizures and everytime he got sick for about a year he'd have a seizure first. That was fun. His immunologist put him on 9 months of antibiotics to help his system get healthy enough to compensate for the deficiency. I'm still pretty shell-shocked from the whole experience and completely understand and relate to your fears and frustrations! We just had a second baby boy in January and I'm just hoping and praying we won't have a repeat situation. Perinatologist doesn't think it's likely but we've learned that doctors are often clueless. :-)

Thank you so much for sharing! Does your older son still have absent IgA but is compensating now for the lack in other ways? What kind of changes did you make to help him?

My DH is a carrier of the gene so there is a larger percentage that DS2 may not grow out of it but we are still hoping.

We go through this cycle about every 10-14 days where he spikes a fever (usually 103ish) for about 2 days. Sometimes there are no other symptoms - runny nose or cough etc but he misses pre-school and we miss work for that time.

I think that is also adding to our stress. Our jobs have been really understanding but at least every other week we are both out. We have begun to drastically cut all expenses back but it will be at least another year or year and a half before we could go without one of our incomes. It would be mine, even though on paper I make more, but DH works at a school so his benefits are top notch, which we totally need.

[paaterzone]

Originally Posted by kai_e Thank you so much for sharing! Does your older son still have absent IgA but is compensating now for the lack in other ways? What kind of changes did you make to help him? My DH is a carrier of the gene so there is a larger percentage that DS2 may not grow out of it but we are still hoping. We go through this cycle about every 10-14 days where he spikes a fever (usually 103ish) for about 2 days. Sometimes there are no other symptoms - runny nose or cough etc but he misses pre-school and we miss work for that time. I think that is also adding to our stress. Our jobs have been really understanding but at least every other week we are both out. We have begun to drastically cut all expenses back but it will be at least another year or year and a half before we could go without one of our incomes. It would be mine, even though on paper I make more, but DH works at a school so his benefits are top notch, which we totally need.

He still is missing the IgA. His immunologist had said he would eventually just compensate and he was right! Each year the illnesses got less and less frequent. Now he seems like a "normal" six year old. We really just kept everything super clean (I became Lysol mom) and limited unnecessary exposure to places where we knew he'd likely catch something (resturant playgrounds, public swimming pools, etc.) We also switched to home care until he hit age 4 instead of regular daycare. That was a significant factor in keeping him healthy. Also, the dr. put him on long term antibiotics. I wasn't a huge fan of this especially considering the fact that he has a penicillin allergy but it really did help his body play catch up. We also got ear tubes because the majority of his infections were in the ears. That helped some but was not a cure-all.

Your story sounds so much like what we went through! We would also go through the same cycles of fevers. There would be no symptoms whatsoever and then he would seize (fun! not!), spike a high fever, and we'd spend the next week or so fighting it off. There were times we'd go to the ER with a seizure and they'd be ready to send us home without checking him for infections (strep, etc.) because he had no other symptoms. I always pushed for more tests and of course, mom is always right. (Lol.) His illnesses were always bacterial infections (never viral for some reason) so antibiotics helped lessen the time. However, it was the same round the clock fever fighting for several days before he'd start to get better. (We became masters at using the little syringe to shoot motrin in his mouth at night so we wouldn't have to wake him a billion times.) We also invested in the really quick forehead thermometer. I carried that thing with me all the time for three years, too. You never know when it's going to happen...

I totally relate to your stress about work. We had the same issue. My job was super understanding--I worked at a fabulous private school and they were more than accomodating. I even had a parent volunteer to take him at her house when his fever was low enough to feel better but not low enough to go to daycare. What a blessing! But still, I know how much anxiety you are feeling missing all that work. All I can say is that for us at least it really did get better and I'm hoping and praying the best for you! Please know I completely relate and empathize with what you are going through and my thoughts and prayers are with you and your family!