4 years ago I never ever thought we would have to deal with Immunity issues...
We've been through a couple specialist appts in the last couple weeks, along with more blood work, and some more news. I haven't updated many because I needed time to get my thoughts in order and come to terms with it.
Wesley's antibody counts (the 4 other sets) are all in the normal range for his age. His IGG is a little low (remember, this is the "big one", which means his vaccines don't work properly) but nothing scary low. His IGA IS low, like we were told awhile back, but it's not -extremely- low.
At the Immunologist Wesley did blood work for all environmental allergies. We needed to see if he has allergies or if he shows symptoms of IGA. Some kids will never have any symptoms and they'll never know they are IGA deficient. Other kids WILL show symptoms. Wesley is one that shows symptoms. We needed to test for allergies to confirm or deny that. He has no environmental allergies.. Meaning anytime he has a runny nose/stuffy/or just generally not feeling well, it's not allergies. It's a cold or virus he cannot fight. Now, this doesn't always mean he is very sick... What affects him may not affect other children (because they have normal immune systems)
We also found out he has decreased immunity (despite being fully vaccinated) to Pneumovax and Tetanus. Pneumovax is the most serious.. That vaccine protects you against Pneumonia and Meningitis. Meaning, especially during the winter, we will need to be more careful and more aware to properly treat any sort of respiratory illness he may get so that it doesn't turn to pneumonia. He is scheduled to get a different dose of Pneumovax next week and in a month we will do more blood work to see if his immune system has come up to normal. If so, we're great. If not, well, I've been told we will "take that as it comes" Tetanus is only an issue should he get a bad cut and in that case we would go to the Dr and he'd get a booster and he'd be okay. These aren't the best results we could have gotten but both are treatable and he poses no risk to any other kids.
Please realize this immune issue has NOTHING to do with the vaccines he got as a baby and will continue to get. This is an issue with his immunity and how he was born. Vaccines WORK. I have 2 fully vaccinated older children... Our Wes has just a different physiologic make up.
So.. What can we do? Well... He won't be living in a bubble. He needs exposure. He needs to be around others. He will continue school as normal. He'll continue life as normal. Our home life has just changed a bit. Lysol spray is my best friend. We sanitize our hands often, especially before eating. We are giving him vitamins (his "fizzy drink") and we're living our life. All continues. If he should get sick I feel completely and totally prepared to handle anything that comes. We will continue to get yearly Flu vaccines and stay current on everyone's vaccines. We have an amazing Dr. who trusts me as a mom and listens to me and we have amazing specialists who give us advice. The most I have to do is alert new Drs. about his IGA deficiency as they will be treating him differently. He recently had a sinus infection, normally, with the girls, I would have let it run it's course and wouldn't have given antibiotics but Wes was given antibiotics and was better in 2 days. I guess you can say the last 4 years learning how to be an advocate for him has prepared me for this.
I've found essential oils that do not cause him to have an asthmatic reactions so we have begun using those to help keep him healthy.
Next we saw a Gastrologist. He was previously tested for Celiac but we found out that since he has IGA that test could be false, as IGA throws off all labs. We are going going with a less invasive course of treatment for a month to see if his symptoms improve and if not he will need to have a scope done to test the lining of his gastrointestinal tract to test for Celiac, as that is the only way to test properly for Celiac in people with IGA.
So that's where we are at now..at least for a month.
Sunday, August 7, 2016
Friday, July 15, 2016
IGA Deficient
We've had a fairly significant change in Wesley so I thought it best to update via blog..
Wesley had some blood work done last week and we got a call earlier in the week that he has an IGA deficiency. IGA deficiency is a genetic immunodeficiency where he lacks immunoglobulin A, which is a type of antibody that protects against infection of the mucous membrane lining of the mouth, eyes, ears, airways, gastrointestinal tract, etc.
The body has a number of different groups of antibodies..when someone is lacking in more than one of those groups they are considered Immunocompromised .
On one front this answers SO many questions as to why he was one big constant ear infection for the first year of his life. We'd get stronger and stronger antibiotics and it would fix it for maybe a week, then we'd start all over again. It's explains why when he gets an Asthma attack it takes forever to get him over it. It explains why when he's sick it takes so long for him to feel better.
If you think about illnesses that affect the mouth, eyes, ears, respiratory tract and gastrointestinal tract we're talking about nearly -every- childhood illness. Flu, colds, stomach bugs, pink eye, runny nose, etc.
Basically he lacks the antibodies to fight these illnesses easily. They hit him longer and harder. I've always said sicknesses hit him harder but never really knew WHY until now. At age 4 Wesley is a fairly healthy child...I contribute a lot of that to our diet.. we try to limit processed foods, we eat -lots- of veggies and fruits, we use hand sanitizer and wash our hands often; but when he does get sick.. it's a fight.
On another front I am extremely worried.. How will this affect him once he's in school full time, around everyone's germs for 8 hours a day? How will this affect him as he ages? Will this affect any of the future surgeries he is to have?
At this point we don't know much about how this will affect him. We have an appointment with an immunologist in about a week and have an appt with a gastroenterologist in August.
This was probably the 2nd biggest blow to us as parents..first being when we found out he had a cleft lip and palate. I never ever imagined anything was wrong at such a genetic level. Since this is a genetic thing is it somehow related to his clefts? Or is this just two random happenings. My gut says no.
I hope to get answers to all these questions when we start seeing specialists.
Wesley had some blood work done last week and we got a call earlier in the week that he has an IGA deficiency. IGA deficiency is a genetic immunodeficiency where he lacks immunoglobulin A, which is a type of antibody that protects against infection of the mucous membrane lining of the mouth, eyes, ears, airways, gastrointestinal tract, etc.
The body has a number of different groups of antibodies..when someone is lacking in more than one of those groups they are considered Immunocompromised .
On one front this answers SO many questions as to why he was one big constant ear infection for the first year of his life. We'd get stronger and stronger antibiotics and it would fix it for maybe a week, then we'd start all over again. It's explains why when he gets an Asthma attack it takes forever to get him over it. It explains why when he's sick it takes so long for him to feel better.
If you think about illnesses that affect the mouth, eyes, ears, respiratory tract and gastrointestinal tract we're talking about nearly -every- childhood illness. Flu, colds, stomach bugs, pink eye, runny nose, etc.
Basically he lacks the antibodies to fight these illnesses easily. They hit him longer and harder. I've always said sicknesses hit him harder but never really knew WHY until now. At age 4 Wesley is a fairly healthy child...I contribute a lot of that to our diet.. we try to limit processed foods, we eat -lots- of veggies and fruits, we use hand sanitizer and wash our hands often; but when he does get sick.. it's a fight.
On another front I am extremely worried.. How will this affect him once he's in school full time, around everyone's germs for 8 hours a day? How will this affect him as he ages? Will this affect any of the future surgeries he is to have?
At this point we don't know much about how this will affect him. We have an appointment with an immunologist in about a week and have an appt with a gastroenterologist in August.
This was probably the 2nd biggest blow to us as parents..first being when we found out he had a cleft lip and palate. I never ever imagined anything was wrong at such a genetic level. Since this is a genetic thing is it somehow related to his clefts? Or is this just two random happenings. My gut says no.
I hope to get answers to all these questions when we start seeing specialists.
Saturday, February 6, 2016
Wesley Update.. .my baby is almost 4.
Thought I'd post an update on Wesley, as it's been awhile. He will be 4 in just 90 days. That's is just unbelievable to me. How are we almost at 4? Wes is solidly in the midst of 2 day a week, half day, preschool. We still have our "no go school" tantrums, where he refuses to get dressed, rips his clothes off, hides, etc, before school but we are to the point he rally's and will end up walking in like a big boy. There's also no more tears. The other day we had a huge victory; his favorite teacher "Miss 'manna" wasn't there, this would normally cause the worlds biggest tantrum/crying episode... I am pleased to say he walked in, said "Bye" and it didn't phase him that "Miss 'manna" wasn't there.
We're tossing around the idea of switching to a 4 day a week preschool next year, in hopes of further help speech and social issues... my one big concern is can he handle that. It would mean leaving our preschool that is partially special needs to a more 'mainstream' preschool. I don't know if he can handle that.
Life seems easier now than 6 months ago, but maybe we've just grown accustomed to it? There's still crying during haircuts, screaming during bath time, not wearing certain clothes/socks/shoes because they touch his wrist or are itchy; not eating certain foods because they are "hot" or "spicy" Meals are like Olympic events...We try different food combos/games/seating all in hopes that he will eat.. I hate meal times. Sometimes I give up and let him eat in front of the Tv because it's the only way to get him to eat, which means he won't be up 3-4 times a night hungry. He normally will eat for Josh but he isn't here all the time and when it's just me it's a battle. Some may judge... Think I'm lazy... I don't know, maybe I am... I know I'm trying to survive, I know I am trying my hardest.. I know I'm trying to get him to eat and after raising 2 girls, I know dinner time shouldn't be this hard. I hate dinnertime.. it makes me want to hide. The same food we had last week is suddenly too spicy.. sure, I could force him..but then he will gag.. then he'll throw up... at the table. That stinks. I don't know what to do and getting help hasn't been easy.
I advocated hard for occupational therapy at school and they finally tested him but since he showed nothing at school, they won't provide help. Talk about defeat. They suggested maybe he was "Pulling the wool over my eyes" Which, frankly, didn't go over well with me. They said since they don't notice anything, they won't help. They don't bathe him at school; They don't wash his hair; They don't cut his hair or change his clothes.
We have an appointment with a developmental specialist this summer..we've been waiting almost a year for this appointment... I hope it sheds some light on things.
Speech-wise, his language has grown in leaps and bounds. He's now actually trying to say words. His speech sounds like someone with a hearing loss would sound, but the words are THERE. Few can understand them, but they are there and that is HUGE! At this point I think the issue is that his palate doesn't work. Which would mean another surgery. The palate not working properly would explain his pronunciation problems, along with the fact his upper lip doesn't work properly (doesn't fully close and touch the bottom lip) At this point he is too young to test and see if the palate is actually working so we wait, and I'm okay with that. After the last palate surgery I'm in no rush to do another.
At the moment we're dealing with a hyper focus issue on smoke detectors. We recently replaced ours and it's caused a big drama. Wesley hates this house and the "Fire larms" .. Sleep is a battle because there's a "Fire larm" in his room.
We also made the decision to get Wesley a blood test recently to see if the certain triggers were due to allergies..inducing asthma or real asthma. The blood test came back to no allergies on certain triggers so we are dealing with asthma. Knowing for sure was huge weight off my shoulders. The clarity. Real true clarity in dealing with a special needs child is worth it's weight in gold!
I haven't posted much in the last months as I've had a couple "Nothing is wrong with him" "he is normal" "Being dramatic' issues go on and I Haven't felt the need to stir the pot any so Thanks for everyone's support. We've been surrounded by amazing friends, new and old, who have been such a support to us in the past 3 years! Keep us in your thoughts and prayers as we are in a "lull" time but that could quickly change in the next year.
We're tossing around the idea of switching to a 4 day a week preschool next year, in hopes of further help speech and social issues... my one big concern is can he handle that. It would mean leaving our preschool that is partially special needs to a more 'mainstream' preschool. I don't know if he can handle that.
Life seems easier now than 6 months ago, but maybe we've just grown accustomed to it? There's still crying during haircuts, screaming during bath time, not wearing certain clothes/socks/shoes because they touch his wrist or are itchy; not eating certain foods because they are "hot" or "spicy" Meals are like Olympic events...We try different food combos/games/seating all in hopes that he will eat.. I hate meal times. Sometimes I give up and let him eat in front of the Tv because it's the only way to get him to eat, which means he won't be up 3-4 times a night hungry. He normally will eat for Josh but he isn't here all the time and when it's just me it's a battle. Some may judge... Think I'm lazy... I don't know, maybe I am... I know I'm trying to survive, I know I am trying my hardest.. I know I'm trying to get him to eat and after raising 2 girls, I know dinner time shouldn't be this hard. I hate dinnertime.. it makes me want to hide. The same food we had last week is suddenly too spicy.. sure, I could force him..but then he will gag.. then he'll throw up... at the table. That stinks. I don't know what to do and getting help hasn't been easy.
I advocated hard for occupational therapy at school and they finally tested him but since he showed nothing at school, they won't provide help. Talk about defeat. They suggested maybe he was "Pulling the wool over my eyes" Which, frankly, didn't go over well with me. They said since they don't notice anything, they won't help. They don't bathe him at school; They don't wash his hair; They don't cut his hair or change his clothes.
We have an appointment with a developmental specialist this summer..we've been waiting almost a year for this appointment... I hope it sheds some light on things.
Speech-wise, his language has grown in leaps and bounds. He's now actually trying to say words. His speech sounds like someone with a hearing loss would sound, but the words are THERE. Few can understand them, but they are there and that is HUGE! At this point I think the issue is that his palate doesn't work. Which would mean another surgery. The palate not working properly would explain his pronunciation problems, along with the fact his upper lip doesn't work properly (doesn't fully close and touch the bottom lip) At this point he is too young to test and see if the palate is actually working so we wait, and I'm okay with that. After the last palate surgery I'm in no rush to do another.
At the moment we're dealing with a hyper focus issue on smoke detectors. We recently replaced ours and it's caused a big drama. Wesley hates this house and the "Fire larms" .. Sleep is a battle because there's a "Fire larm" in his room.
We also made the decision to get Wesley a blood test recently to see if the certain triggers were due to allergies..inducing asthma or real asthma. The blood test came back to no allergies on certain triggers so we are dealing with asthma. Knowing for sure was huge weight off my shoulders. The clarity. Real true clarity in dealing with a special needs child is worth it's weight in gold!
I haven't posted much in the last months as I've had a couple "Nothing is wrong with him" "he is normal" "Being dramatic' issues go on and I Haven't felt the need to stir the pot any so Thanks for everyone's support. We've been surrounded by amazing friends, new and old, who have been such a support to us in the past 3 years! Keep us in your thoughts and prayers as we are in a "lull" time but that could quickly change in the next year.
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