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-   -   Anyone with a child with an immunodeficiency disorder? (http://www.diaperswappers.com/forum/showthread.php?t=1493119)

kai_e 02-19-2013 03:45 PM

Anyone with a child with an immunodeficiency disorder?
 
I haven't found any real life support groups yet but I am reaching the breaking point of what I can deal with alone, without having anyone who can relate to talk to.

mekat 02-20-2013 03:15 AM

Re: Anyone with a child with an immunodeficiency disorder?
 
My DS has Natural Killer Cell deficiency (functional deficiency). Now that we know what is going on and have taken steps to protect him for the most part his illnesses are under control. He still gets sick more often and stays sick for longer periods of time but it has been manageable. His deficiency has impacted his medical treatment significantly. The ER fast tracks him and his doctors tend to discharge him quicker then they would another patient because he has a history of picking up secondary infections. We also vaccinate according to his immunologist's recommendations and have confirmed with titers he can build an immune response. We lucked out and have one of the top pediatric immunologist's in our area on his case; She has helped him tremendously. There aren't any treatments for my son's deficiency so we manage by avoiding exposure, getting vaccinated and avoiding medical environments when we can.

kai_e 02-20-2013 06:12 AM

Re: Anyone with a child with an immunodeficiency disorder?
 
I knew we weren't the only ones out there who are battling with something like this but I just haven't found anyone else locally.

Our youngest has selective IgA deficiency, which is the most common. I guess most fall on the side of the spectrum of it not being a deal. DS2 is on the other side and has completely absent levels. He gets sick if someone even says the word sick. On his last tests, his igg and igm levels were dropping as well.

I love his immunologist - we travel to Boston Children's and they are wonderful with him although we are just now delving into the nutrition area and finding an optimal diet for him. I mean, he already does very well with fruits/veggies, limited amount of processed foods etc but I know that celiac's and even lactose imbalances can go frequently hand in hand and I'm not sure why no one ever suggested we do some GI testing on him?

I am probably rambling. I have been up all night with him again since he has another fever. He spikes fevers like it is his job.

FernHollow 02-21-2013 05:10 PM

Re: Anyone with a child with an immunodeficiency disorder?
 
I am not dealing with the exact same thing, but I definitely do understand the concerns with secondary infections, etc. My almost 7yo has Nephrotic Syndrome caused by an autoimmune reaction. He is almost always on immunosuppressant therapy which can be so scary when he gets sick. He was diagnosed when he was 3 and at that point every single little cold that went through our household resulted in him having pneumonia and being close to hospitalization. It has been really hard to not be overprotective of him now that he is older and school age. We homeschool, but he is still involved in the community and I can't keep him in a bubble of course. We just try to do the best we can in terms of providing a really healthy diet and getting care for him ASAP if he is getting sick. We've done all the celiac testing, tried high dose allergy meds (he has mild allergies), etc. to see if we can't get his immune system from being so overactive all the time. Unfortunately every time he even gets a sniffle, he flares again and gets really ill from his body attacking his kidneys.

It is can be really hard to find support since people don't always understand what you are going through with your child. Sometimes they think you are just being way overcautious with trying to protect them from illness. Sometimes you blame yourself that maybe you should be doing something different or have made different choices. It can feel very isolating that people don't really understand because your child looks "normal". Just know you aren't alone even if our children aren't suffering from the same illness. Feel free to send me a PM if you ever need to talk :hugs:

mekat 02-21-2013 10:33 PM

Re: Anyone with a child with an immunodeficiency disorder?
 
Alec receives enteral formula through his g-tube. I have considered doing a blended diet (whole foods blended into a liquid consistency) but I am terrified to try because his intestinal function is so poor. We just started feeding therapy 11 months ago to try and transfer him to oral feeds and his GI system has been going into a downward tail spin. I'm not entirely sure how much of it is poor intestinal function and how much of it might be an an autoimmune response (suspected inflammatory bowel disease). I am not sure he is capable of digesting real food as a large portion of his diet. A few months back he was barely able to digest his formula which is specifically designed for intestinal deficiency problems.


Alec's immunologist was the first suspect autoimmune response with his GI issues. She said those with immune deficiencies in one area can often have an over active immune response in another.

I don't worry too much about school because he isn't mainstreamed. His school is the school where the district sends the most medically complex children. They have been very good with keeping kids healthy since he isn't the only one with an immune deficiency. If he were mainstreamed though it is very likely we would have to home school. The one school he went too that did regular classes along with the ESE classes was horrible nursing wise. They knew he had an immune deficiency 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.

mekat 02-21-2013 10:39 PM

Re: Anyone with a child with an immunodeficiency disorder?
 
I'm sorry you both are having such a difficult time. The emotional drama is very draining. I find that my depression cycles match my son's medical status. It is very damaging from an emotional perspective to see your child hurting and feel powerless to fix the situation. Then to top off the stress you have to try to maintain a positive perspective for your child when all you want to do is cry.

kai_e 02-22-2013 10:01 AM

Re: Anyone with a child with an immunodeficiency disorder?
 
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.

Rainsong 02-25-2013 10:10 AM

Re: Anyone with a child with an immunodeficiency disorder?
 
My 7 yo has iga deficiency and specific antibody deficiency. How old is your son?

raymark 02-25-2013 11:24 AM

Re: Anyone with a child with an immunodeficiency disorder?
 
My oldest 2 have eliptocytosis (think sickle cell anemia). When they become ill it is common for them to need blood transfusions. We don't shelter them & they have both always been very active children. They are 18 & 20 yrs old now. Thanks to medical science the spleens of these children are no longer removed & they always perk right up after receiving transfusions. They both understand the need to always be current with vaccinations, take their vitamins, eat healthy, avoid sleep deprivation, exercise, and see their doc at the first sign of any illness. Having eliptocytosis truly is not a big deal - at least our family has never fussed over it or made them feel broken, damaged, or different.

kai_e 02-26-2013 10:32 AM

Re: Anyone with a child with an immunodeficiency disorder?
 
Quote:

Originally Posted by Rainsong (Post 16330491)
My 7 yo has iga deficiency and specific antibody deficiency. How old is your son?

He is 3. When did your son get diagnosed? How do you manage it?

Quote:

Originally Posted by raymark (Post 16330824)
My oldest 2 have eliptocytosis (think sickle cell anemia). When they become ill it is common for them to need blood transfusions. We don't shelter them & they have both always been very active children. They are 18 & 20 yrs old now. Thanks to medical science the spleens of these children are no longer removed & they always perk right up after receiving transfusions. They both understand the need to always be current with vaccinations, take their vitamins, eat healthy, avoid sleep deprivation, exercise, and see their doc at the first sign of any illness. Having eliptocytosis truly is not a big deal - at least our family has never fussed over it or made them feel broken, damaged, or different.

Thanks for sharing the other side of it. We are trying not to convey that DS2 is "damaged" but we do have to explain why he can't say, go to the inflatable bounce center (which he has in the past but he always picks up some kind of bug/cold from indoor play areas). I am sure we will always be gauging the risk and our comfort levels with certain activities.

Rainsong 02-28-2013 05:53 PM

Re: Anyone with a child with an immunodeficiency disorder?
 
[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 03-04-2013 10:04 PM

Quote:

Originally Posted by kai_e (Post 16319476)
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 03-05-2013 10:20 AM

Re: Anyone with a child with an immunodeficiency disorder?
 
Quote:

Originally Posted by twinmomstl (Post 16360013)
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 03-11-2013 08:04 PM

Quote:

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 03-11-2013 08:20 PM

Re: Anyone with a child with an immunodeficiency disorder?
 
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 03-12-2013 09:17 AM

Re: Anyone with a child with an immunodeficiency disorder?
 
Quote:

Originally Posted by paaterzone (Post 16385622)
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 03-12-2013 04:33 PM

Re: Anyone with a child with an immunodeficiency disorder?
 
Quote:

Originally Posted by kai_e (Post 16386941)
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!


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