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(x-post) Is there a support thread for parenting chronically ill children?

post #1 of 19
Thread Starter 

Hello! I was just wondering if there's a support thread for parents of children with chronic illnesses? My youngest son doesn't have a formal diagnosis yet (except for "presumed allergies" to several foods) but he's sick all the time and I'm having a really hard time with it right now. I'm very upset that he might miss spending Christmas with his grandparents because he's sick *again*. :( I just don't know what to do, I want him to be healthy and to do all the things his siblings do but he keeps missing out because he's always getting sick with something or other. Right now I'm waiting for the doctor's office to call back, I think he's got bronchitis. Last weekend he was hospitalized (for the fifth time since he was nine months old) with vomiting and dehydration. He gets better from one thing and comes down with another and I feel so useless, there seems to be no preventing it. :( I don't know what to do anymore but I'd like to talk with other parents who are dealing with similar issues.

post #2 of 19

hug2.gifThe constant illness really is rough, I've been there until very recently with my 4y DD2. Her entire life has been one illness after another. She was exposed to pertussis at birth, was quite ill with that, O2 dependent until 7 months of age, and suffered lung damage. Going 1.5 weeks between illness was a reach, it was not common to still have one illness while she was getting another one, all year long. Once we had an entire month with no illnesses, as you tell, that was a miracle! I can not tell you how many times that child has been in and out of clinics/hospital, pneumonia/croup were events that happened multiple times a year, every single year. She just gets everything, RSV twice, H1N1, regular influenza twice, on and on. We would go on a very rare vacation, and she would end up in the hospital on the beach, in the summer. Every single holiday for since she was been born, she has been ill for for. People just do not understand what a toll the constant illness takes on the family. I have 3 children, I see you have 4, if DD2 gets something, several of the rest of us get it as well. Not as severe as she does, but someone is ALWAYS sick in this house. 

 

This fall we changed her meds and it has made a huge difference in her illnesses. She still gets sick often, a couple times a month, but for us, that is such an improvement. And the severity has been decreased. She has a runny nose right now, but it is only a runny nose, and not the nasty,barking cough that would always appear instantly. I have had a standing script for her for years now for codeine cough syrup so the child could sleep now and then. eyesroll.gifMy grandmother had cancer a couple years back, that left her frail, she has missed Christmas and Thanksgiving ever since because she can not come over if we are ill. My own parents hate to stop by and see us because they end up getting ill. Her official dx now is asthma which is controlled by Singular, inhalers, and nebs. She never gets asthma attacks, it is viral induced so only with illness. 

 

 

I totally understand about feeling like you can not prevent it. With older children, it is so hard. I did get really strict with what I could control. Other families were instructed about her health problems, and asked to call if we had a playdate and they had a child with a runny nose or any signs of illness. If we were out and an obviously ill child or person was around, we would leave. Anything to maybe get a couple more days between illnesses. I didn't keep her in a bubble, we went out a lot, we washed hands every often. Did it help? I don't know, I am sure a little, but germs are everywhere. I am sorry about maybe having to miss X-Ma with the grandparents. Excuse typos, one handed typing with asleep toddler!

post #3 of 19
Thread Starter 

:( I'm glad to hear that your daughter is doing a little better than before. Do you think there's any chance that she'll outgrow this? What have her doctors said about her frequent illnesses? And yes, it's such a pain to have to worry about other people being sick all the time. No one has ever caught anything from Bear, but he gets sick so often that it seems pointless to keep him home-- we would have to keep all four kids in a bubble all the time and it's just overwhelming, so we end up washing the baby's hands and being extra cautious about people who have direct contact with him.

 

Bear's most recent hospitalization resulted in testing for metabolic & immune disorders. I'm hoping to hear good news when they come back, or to at least get some answers. It's making me crazy not to know, especially when we start getting furrowed brows from doctors. Three different doctors asked me in the ER if anyone knew *why* Bear was getting sick as often as he was and I was kind of surprised-- I've always attributed it to the fact that he didn't get enough breastmilk.. They seemed surprised that no one had tested him for primary immunodeficiencies before. I've been reading about them, but most of them don't seem to fit his symptoms (he has more GI illnesses than respiratory infections).

 

I did take him to the ER last night; He had a breathing treatment and was given more zofran (he's always vomiting :() and albuterol and a diagnosis of bronchiolitis but they let us go home. I was kind of relieved, because if we had gone in tonight he would have seen the same doctors who saw him last weekend and he probably would have been admitted. This way he gets to spend x-mas day with his grandparents and to open presents with his brother and sisters. Bear spent his first birthday recovering from upper & lower endoscopies (and tube placement, but that wasn't a big deal and probably made him feel better as he had some infected pus in both ears that day) and his second with a cold. He's been sick for all but one of his "well-baby" appointments, and was actually admitted after one of them for lethargy & dehydration. Minor illnesses last forever; If the average time of illness for a healthy child is about 24 hours, Bear will be sick for three weeks and probably develop another infection before the first one clears.

 

Relatively healthy children are having a lot of illnesses this year, and it leaves me terrified for Bear. Now I'm on edge all the time. I hate being perpetually stressed out. :( I feel like I must be a terrible parent because I'm always so frustrated by my inability to do anything to help Bear stay healthy. He deserves better than this. :( 

post #4 of 19
Quote:
Originally Posted by eilonwy View Post

:( I'm glad to hear that your daughter is doing a little better than before. Do you think there's any chance that she'll outgrow this? What have her doctors said about her frequent illnesses? And yes, it's such a pain to have to worry about other people being sick all the time. No one has ever caught anything from Bear, but he gets sick so often that it seems pointless to keep him home-- we would have to keep all four kids in a bubble all the time and it's just overwhelming, so we end up washing the baby's hands and being extra cautious about people who have direct contact with him.

 

Bear's most recent hospitalization resulted in testing for metabolic & immune disorders. I'm hoping to hear good news when they come back, or to at least get some answers. It's making me crazy not to know, especially when we start getting furrowed brows from doctors. Three different doctors asked me in the ER if anyone knew *why* Bear was getting sick as often as he was and I was kind of surprised-- I've always attributed it to the fact that he didn't get enough breastmilk.. They seemed surprised that no one had tested him for primary immunodeficiencies before. I've been reading about them, but most of them don't seem to fit his symptoms (he has more GI illnesses than respiratory infections).

 

I did take him to the ER last night; He had a breathing treatment and was given more zofran (he's always vomiting :() and albuterol and a diagnosis of bronchiolitis but they let us go home. I was kind of relieved, because if we had gone in tonight he would have seen the same doctors who saw him last weekend and he probably would have been admitted. This way he gets to spend x-mas day with his grandparents and to open presents with his brother and sisters. Bear spent his first birthday recovering from upper & lower endoscopies (and tube placement, but that wasn't a big deal and probably made him feel better as he had some infected pus in both ears that day) and his second with a cold. He's been sick for all but one of his "well-baby" appointments, and was actually admitted after one of them for lethargy & dehydration. Minor illnesses last forever; If the average time of illness for a healthy child is about 24 hours, Bear will be sick for three weeks and probably develop another infection before the first one clears.

 

Relatively healthy children are having a lot of illnesses this year, and it leaves me terrified for Bear. Now I'm on edge all the time. I hate being perpetually stressed out. :( I feel like I must be a terrible parent because I'm always so frustrated by my inability to do anything to help Bear stay healthy. He deserves better than this. :( 


Depending on where the defect is in the immune system will determine where his infections will mostly be at, resp or GI. Plenty of PIDD kids have chronic GI issues. Don't blame it on lack of breastmilk, mine only got breast milk for a very long time (way past a year) and she was still sick all the time with life threatening infections, the milk helped keep the infections for being worse but she was still very sick with one thing after another. She had bacterial pnuemonia 9 times by the time she was 3 I think? and thats not counting all the other infections. She's 10 now and has been on IG therapy since the month she turned 6 and life is much easier but we still live in bubble. Thats just the nature of having a kid with PIDD. At least we can be home and not get infection after infection since starting IG.

 

Anyway I hope you get some answers soon, we didn't get a firm answer until dd was almost 6 even though they knew something was very wrong. We needed a Dr who was willing to work outside the box to figure out what was wrong since others couldn't following old school methods. Don't be afraid to try a different Dr if your not getting answers. You might find it helpful to join the yahoogroups PIDD list http://groups.yahoo.com/group/PedPID

post #5 of 19

I've gotten various theories on why she gets ill, her immune system/lungs never had a chance because she was seriously ill at such a young age, the asthma docs think a good portion of it was uncontrolled asthma for years, she never wheezes, but when she gets sick, it goes straight into her lungs. Now that she is on these meds and life has improved, maybe that is what is was. She still is ill more then a regular child, but this kind of ill so far has been tolerable, it isn't antibiotic, pneumonia, hospital ill like before. We were told for years to just wait it out, she would get better, by last winter, I should of sought more help, I had stopped believing that by then. By August of this year, I just could not go through another winter like we have always had with her so we started calling other docs.  She was ill year around but summers were always a little better, winter is never ending illness. And like I said, she is still ill often, she has had a runny nose most of this month, but for the first ever it is *just* a cold. I'm going to see how she does for a whole year on this new treatment plan and then reevaluate. 

post #6 of 19


Quote:

Originally Posted by Peony View Post

... when she gets sick, it goes straight into her lungs... 

 

Sorry to see CF in every kid that has respiratory issues, but, just to be sure, have you ruled out CF? (cystic fibrosis)? Hope she does better soon...

post #7 of 19
Thread Starter 

Bear seemed to be feeling a little better earlier today, but by the time evening rolled around he was miserable again. I feel so inadequate right now. :( How do you manage? I mean I can give Bear medicine and I can carry him in the sling and snuggle with him, but I can't get him better or keep him from getting sick in the first place. :(

post #8 of 19
Quote:
Originally Posted by eilonwy View Post

Bear seemed to be feeling a little better earlier today, but by the time evening rolled around he was miserable again. I feel so inadequate right now. :( How do you manage? I mean I can give Bear medicine and I can carry him in the sling and snuggle with him, but I can't get him better or keep him from getting sick in the first place. :(



Your doing what you can, just keep fighting to find out whats wrong with him so you can get treatment started. When will you get his immuno workup back?

post #9 of 19
Thread Starter 

It will probably be another week or two. I did ask yesterday and they said it was listed as "pending". Based on my reading, I think a visit with an immunologist and/or a geneticist is in our near future. :/

post #10 of 19

Forum crashing - but I just wanted to ask, have you tried changing Bear's diet around? Try dairy free, or refined cereal/sugar free, or gluten free - my immune system got much stronger when I drastically lowered refined sugars and caffeine, I used to get sick a lot more prior to the change. Sometimes a neuroendocrine imbalance can be responsible for lowered resistance.

post #11 of 19
Thread Starter 

Bear's diet is free of wheat, diary, egg, soy, most refined sugars and food dyes. He's been diagnosed with "presumed allergies" to dairy and egg, has had one [slight] positive skin test for soy and one delayed-positive skin test for wheat (but never a positive RAST to anything)-- all this despite reacting very strongly to all four. His diet is very limited by comparison to that of his siblings (all of whom are healthy).

post #12 of 19

I figured you probably tried all that, especially when I saw that he had food allergies. Poor Bear. hug.gif I hope you can find an answer or a solution that would help him fight off illness.

post #13 of 19
Quote:
Originally Posted by eilonwy View Post

It will probably be another week or two. I did ask yesterday and they said it was listed as "pending". Based on my reading, I think a visit with an immunologist and/or a geneticist is in our near future. :/


It can take 4-5 weeks for the initial stuff to come back, has he had any vax's? If he has and failed to respond that can be a good thing as far as helping to quickly identify defects and starting treatment. I have mixed feelings on immuno's, we saw a couple who were worthless, it turned out to be an allergy/immuno guy who finally figured out what was going on. It can take a while to get answers:(  If they do come back and suggest Ig therapy, go for it, I was scared out of my mind to start it, now I'd raise major heck if someone tried cutting off our supply. It made a HUGE difference in qualify of life.

post #14 of 19

hug2.gif

post #15 of 19
Thread Starter 

Bear's had some vaxes, but because he was sick for most of his well baby checks he didn't get all of them. If it takes 4-5 weeks then we're still looking at three or so; Good to know! They told me that it would be 2-3 weeks, but I'm not sure what exactly they're doing with his samples, or what they're looking for. My research has been fascinating and mostly reassuring. It looks like whatever is going on is relatively "mild"-- Bear's growth and development have been excellent, all things considered. He's always been tall for his age, for example (though he hasn't always been a healthy weight for his height-- he spent his first year hovering between the 10th percentiles for weight even though he was above the 95th for height). I'm hoping for transient hypogammaglobulinemia, which would mean that he'll eventually outgrow this. Is that hopelessly optimistic of me? Several of the metabolic disorders I read about also seem like good candidates, and that would be very helpful because a lot of the time they can be controlled with diet, and preventing metabolic crises goes a long way toward preventing illness in most cases. Then of course there's the possibility that the tests will come back and they'll tell me that there's absolutely no reason for him to be getting so sick so often, and I'll be right back to the drawing board. It's hard to know what to hope for most. :/

post #16 of 19


 

Quote:
Originally Posted by eilonwy View Post

Bear's had some vaxes, but because he was sick for most of his well baby checks he didn't get all of them. If it takes 4-5 weeks then we're still looking at three or so; Good to know! They told me that it would be 2-3 weeks, but I'm not sure what exactly they're doing with his samples, or what they're looking for. My research has been fascinating and mostly reassuring. It looks like whatever is going on is relatively "mild"-- Bear's growth and development have been excellent, all things considered. He's always been tall for his age, for example (though he hasn't always been a healthy weight for his height-- he spent his first year hovering between the 10th percentiles for weight even though he was above the 95th for height). I'm hoping for transient hypogammaglobulinemia, which would mean that he'll eventually outgrow this. Is that hopelessly optimistic of me? Several of the metabolic disorders I read about also seem like good candidates, and that would be very helpful because a lot of the time they can be controlled with diet, and preventing metabolic crises goes a long way toward preventing illness in most cases. Then of course there's the possibility that the tests will come back and they'll tell me that there's absolutely no reason for him to be getting so sick so often, and I'll be right back to the drawing board. It's hard to know what to hope for most. :/



Unfortunately the only way to know if its the transient form is for him to outgrow it around age 4, were hoping that's what my 4 yr old has even though she was dx'd with CVID at 1 year. Since older sis has it the Dr felt more ok with giving the CVID dx then just the transient form dx they often give to those dx'd as babies. She's been stable the past 3 years as far as illness goes, we have more metabolic issues with her then immune but her labs are not encouraging and I know its just a matter of time before she crashes and needs to start Ig but I'm going to enjoy it while it lasts. If the tests come back saying nothing is wrong then the Dr is not looking in the right places. I know with my older dd the 1st Dr told me nothing was wrong, she has antibodies and yada yada yada. Turns out he didn't check to see if they were functional, yeah she has antibodies but there blanks. They don't function! She has defects all over her immune system but because we didn't follow the usual dx pattern which means full vax schedule and then failure to respond he wasn't to happy to help us. The next Dr was way to conservitive, didn't help matters that every time he mentioned we might need to start IVIG I balked in fear. (Looking back I don't know why I was so scared). The 3rd Dr was awesome and literally looked at every.single.thing done from birth on then ran the right tests, figured out the problem and made it clear we needed IVIG and why. I love that man! He moved to Ohio 2-3 years ago, I miss him as dd's Dr:( So don't give up, its rare for these kids to be dx'd quickly, the only time that tends to happen is in SCID kids and they get transplants. Everyone else takes a few years to get figured out, cause you know, PIDD is so rare and difficult to figure outeyesroll.gif (this is a sore point with me and 5 years of hell while they figured it out something that was blaringly obvious)

post #17 of 19

HI I wanted to lend my support and understanding. I am a mom to adopted twin boys. They have chronic health and developmental problems.  A lot of it stems from being born early 8-10 weeks and being CMV+ at birth.

My one guy, K, seems to catch every single cold. When he was 5 mo. old he had a surgery to try to correct his laryngomalacia (floppy airway) This surgery caused him to lose his ability to swallow. He began aspirating and suffered mutliple aspiration pnemonias. He is doing MUCH better now, but colds knock him out more than the normal kid. We are fortunate to have an awesome pediatrician and she has worked with us to help improve his immune system. We have seen a real difference in his health now that we are more proactive with supplements. He gets 1000 iui of D3 daily. He also gets 1 tsp of elderberry syrup and garlic drops in his ear every night. (Ear infections turn into admissions for us). I also stopped vaxxing him. He would run HIGH fevers after just one shot and sometimes need admitted. His health has improved so MUCH since our new routine. We have had NO antibiotics for him since Sept. We have had NO admissions since then. No ER trips. And even though colds do still need a little extra help, what a difference we have seen. Do you have a holistic doctor you could consult with?

Stress is also a big inducer of illness for K. The less stress he has, the healthier he is. He is a home body. He is happy at home. He will run low grade fevers if we go out for tooo long. Its just him and for now, we just have to take it easy with my little guy. Quite a few times, our biggest illnesses have come after seeing a specialist. It stresses him out and doctor's offices are germy. Now, I plan on avoiding them unless totally necassary. He also always gets an infection after getting his G/J tube changed. So with the help of our doctor we give him preventative supplements following tube changes.

 

I just looked over our past year. We had 11 trips to the ER, 9 admissions, and over 111 doctor/specialists appointments for my twins in the past year. Phew. But the past 5 months have been so much better since we started treating my guys wholistically. The difference is huge. I can see 2011 being so different compared to 2010.

post #18 of 19

Just wanted to say that I can somewhat understand an empathize.  DS3 has had a horrible start to life..pyloric stenosis; reflux; GERD; swallow difficulties; ear infections; hospitalized two times in 4 months.

 

I swear I know the entire staff of 3E on CMC...and I never want to go back there....

post #19 of 19
Thread Starter 

That's exactly how I feel about the pediatric unit. It doesn't help that we come in and they greet us like old friends. It's a little disturbing, I have family who sees less of the baby than medical staff. :/

 

We're having an okay week so far. Bear's been very responsive to the inhaler and he only threatened to throw up this morning (rather than actually doing it). Here's hoping that his lungs are completely clear before he gets sick again. Fingers crossed.

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