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 Post subject: Ready to Give Up
PostPosted: Wed Mar 01, 2006 3:03 am 
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Joined: Wed Mar 01, 2006 2:19 am
Posts: 3
Location: Saskatchewan
After a year and half of struggling, we are getting close to giving up...hence I am a "mommyontheverge."

Everytime we've tried to start our son on cow's milk he's become horribly congested, develops a wet, wheezy cough, gets terrible diarrhea, can't sleep at night & suffers from bouts of sleep apnea. We were referred to a pediatric allergist but this person concluded our son was not allergic because his skin tests did not produce a reaction. (We're pretty sure there are other foods he's "allergic" to although again, the skin tests did not produce a reaction. He's developed hives after eating strawberries and french fries.)

What we do know is that he tolerated breast milk (as much as I was able to produce anyway when he was an infant), did pretty good on Alimentum (a hydrolyzed milk protein formula) for a time and now seems to be doing reasonably well on Neocate Junior (an amino acid based toddler supplement that's $170 a case...which incidentally lasts us only 1 week!).

Despite some of the gains we've made with the Neocate Junior, our son continues to battle ear infection after ear infection, bouts of tonsilitis and sinusitis...not necessarily directly caused by allergy but certainly related. He lives on liquid nutrition and barely eats solid foods (except for brief periods of relief when he's been treated with antibiotics...which of course the doctors are reticient to prescribe because of resistance issues). At this writing he has not eat solids x 2.5 weeks. To add insult to injury he had ear tubes put in and one of them is now occluded with a clot (a rare complication apparently...just our luck!)

What's most frustrating of all is our health system in Saskatchewan. There is no one directing our son's care. Nobody is interested in getting to the bottom of his problems - they just shuffle us out of their offices with suggestions that he's "just a picky eater" and that we are over-protective first time parents. Everything that's seemed to make a difference for him we've found ourselves (ie Alimentum & Neocate). We are going crazy. We no longer know what to do anymore...he is constantly sick, we are constantly up in the night with him and we are powering out. Does anyone have any suggestions about who we could go see? A pediatrician or a pediatric allergist? Or a pediatric otolaryngologist who believes allergies are real things? We would be quite happy to travel out of province if our little boy could just get feeling better.

Thanks for letting me rant. You can send me the bill for the therapy session, ha ha.


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 Post subject:
PostPosted: Wed Mar 01, 2006 7:46 am 
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Joined: Tue Feb 14, 2006 11:06 pm
Posts: 26
My daughter takes nutrimagin, and peptin jr, through her feeding tube, you child sounds like mine, it took 2 years of fighting and about 10 doctors to find out she is allergic to milk,

her allergist said she was fine, her ped, and gastro disagree. if you feel the food you are feeding your child is making them sick, then you know in your gut what is wrong.

have you ever spoke with a dietion, sometimes they have alot of hold on what you feed your child, we work with 2 (each in a different hosp.) and when I felt that certain foods were making her sick all I did was record what she ate for 3 days and how she reacted once they saw what happen they both agreed to elminate certain foods from her diet.

good luck


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 Post subject:
PostPosted: Wed Mar 01, 2006 9:42 am 
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Joined: Fri Jan 06, 2006 8:22 pm
Posts: 154
Location: Georgia
Sorry you are having to deal with this. But you are doing a good job! Being a parent can be tough, but the rewards are amazing. :)

Some intolerances may not be true allergies, but can cause diarrhea. Especially following many rounds of antibiotics. Try a probiotic to recover the intestinal flora. I have taken probiotics, and rely on yogurt to prevent antibiotic-induced diarrhea. Of course, if you are having milk issues, you will want to find a non-milk source of flora. Talk to your pharmacist for a recommendation. This is a good idea for anyone taking lots of antibiotics or having bouts of diarrhea.

Saskmommyof2 is in your area. She might be able to give you a referral to a Doc that can help.

My non-allergic daughter had many ear infections until about 18 mo. I stopped working full-time around this, so she was not in daycare anymore. I think it was a combination of her eustachian canal maturing, and her removal from a "germy" environment.

Some environmental allergies can also cause much congestion. Pillow and mattress encasings are always a good idea when dealing with nasal problems.

You have found a great resource in this website; sarahjo and many others are dealing with some of these same issues.

Daisy[/b]


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 Post subject:
PostPosted: Wed Mar 01, 2006 10:37 am 
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Joined: Wed Mar 01, 2006 2:19 am
Posts: 3
Location: Saskatchewan
Thanks you guys! It's comforting to know that other people have been down this road before.

I think you're right Sarahjo, a parent does need to follow their gut...it just makes it so hard when the medical establishment brushes you off. You really do start to believe you're nuts after awhile, especially when they tell you that in their estimation your child really isn't sick. I told the GP our son was losing weight, so much so that his bones were sticking out, and her response was "well he's not off the growth chart yet!" I'm like does he have to be before he's 2 yrs old and 20 lbs before you help me??!! Sometimes they just don't seem to use common sense. I've come to the conclusion that you have to be your family's best advocate. Thank goodness for the internet and for message boards like this one.

Thank you for the advice Daisy about the probiotic. We have been to the naturopath (yup, we've been everywhere!!) and she did give us one. I've wondered too about the environmental allergy angle. My mom suffered for years for environmental allergies until she took some action to make her house less toxic. We've also taken our son out of the babysitter's for the time being so we can give the poor little guy a fighting chance...I agree...it was "germ central" and I just don't think his immune system is up to the challenge. Perhaps that's just another complicating factor.

Anyway, was pleased to her back from people so soon...thanks the words of encouragement.


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 Post subject:
PostPosted: Wed Mar 01, 2006 11:49 am 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
Hi. What city are you in? I am in Prince Albert. We see Dr. Persaud in saskatoon. He was a little difficult for me to deal with at first, but now I really like him. Unfortunately, if the prick test says "no allergy" it is about the limitations of his ability to help. Last year I was so frustrated what ws bothering my youngest, and yes a food can be not allergic and still cause other problems and I am not sure if the allergist sees those as a real concern, or as his field. He also does not have the time/government dollars to offer any input regarding what you should be eating or how to help further. I would suggest a pediatrician, and then a dietician.

My youngest is up every night because she is itchy. I have tried everything from food to laundry soap to baby wash, to carpet cleaners, to bedding to furnace filters etc. etc. I keep the house really clean. I really want to replace the carpet with tile, but it will cost over $8,000 for our bedroom areas and ugly lino in the kitchen. We would still have carpet in the basement. And what if that does not help? My brother in law had very little black mold in his apartment, which made him really sick, the doctors even suspected athsma...but it was the mold.


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 Post subject:
PostPosted: Thu Mar 02, 2006 2:41 am 
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Joined: Wed Mar 01, 2006 2:19 am
Posts: 3
Location: Saskatchewan
Saskmommyof2 we are in Saskatoon. We saw Dr. Yee who is a pediatric allergist but as I mentioned before he is of the traditional variety ie no reaction to a skin test, no allergy. Years ago there was a wonderful doctor at the university, Dr. John Gerard, who may be known to some of you as he worked on a lot of cutting edge stuff in his day, especially environmental allergy. I was really hoping to find someone of Dr. Gerard's calibre - he really understood the mechanism of delayed response to allergens. Sigh...

Since my new favorite pastime is arm-chair doctoring (ha! not really but that's what it's come down to) I think our son's sensitivty to milk really precipitated much of his ear, nose & throat problems (although our ENT also dismisses that as hogwash). However it just makes sense to me if you're producing alot of mucus due to allergy and it has no where to drain when your little eustachian tube is short and straight you've now created the perfect breeding ground for bacteria...hence all the ear infections and the tonsillitis. Toss in a depressed immune system for good measure, and a few germy kids at the sitter's and you've got one sick little person. I'll tell you, I have to admire our son for managing as well as he has...it's just been one thing after another for him. Never mind the occluded ear tube he also has a speech delay from all the ear infections which frustrates him at times. He's been so good about the endless parade of doctors' visits too it's amazing how much resolve these little gaffers have!

It must be a real challenge Saskmommyof2 to cope with a little person who's itchy all the time, it sounds like you've covered a lot of ground trying to sort it out. I can't think of anything else off the top of my head that you can try to eliminate the source of the problem. Hoping you have found or will find something topical or perhaps a med that could give her some temporary relief from the itching.


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 Post subject:
PostPosted: Thu Mar 02, 2006 8:00 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6456
Location: Ottawa
Mommyontheverge-whie I can't relate to the food allergen issue (luckily?) our daughter was very reactive to the skin test, I can relate to the ear infections. Ur daughter had constant ear infections from 18 months to 3 1/2 years of age. Our Dr stated that her inner ears would always look swollen and fluid filled due to her allergies/asthma.
She is now 4 1/2 and has grown to the point where the eustachian tubes are not so horizontal and drain better.
I don't know if that helps you any...


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 Post subject:
PostPosted: Thu Mar 02, 2006 11:03 am 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
I was awoken last night with a child crying that she is itchy at 10:30, 11:40, 12:30, 12:55, 1:40, 2;45, and 3:50. She then slept until 8:00, but I got up at 7:15 to get ready since we have gymnastics this morning. I had even given her arius before bed. This was the worst night yet, and my friend has a new born and I got a worse nights sleep that she probably did. My husband travels a lot for work and has been gone since monday morning.

I am considering trying a humidifier (with a really clean filter ). I am trying to weigh the pros and cons. Humidifier=more humid air, but also = more growth of dust mites and mold/bacteria in the air.

I also removed all bath toys incase mold was growing inside them. We only have tuperware containers in the tub now. Question, can a food cause you to be itchy, but not be "allergic" and not be picked up on a skin test?


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 Post subject:
PostPosted: Thu Mar 02, 2006 9:17 pm 
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Joined: Wed Aug 10, 2005 11:21 am
Posts: 687
Location: Cobourg, ON
Is it eczema? With our daughter, the only moisturizer that works for her dry itchy exzema patches is vaseline. We give her a bath each night, just barely pat her dry and then seal in the moisture with vaseline. It feels so greasy but it works for her. A dermitologist suggested this. Winter is a bad time for itchy skin. I know my own skin can get very itchy at night. I use Vaseline first thing in the morning before I dress her also. You must be exhausted! Take care.


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 Post subject:
PostPosted: Thu Mar 02, 2006 9:31 pm 
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Joined: Fri Jan 06, 2006 8:22 pm
Posts: 154
Location: Georgia
saskmommyof2
What is she bathing with...soap? I was itching terribly. Husband was tired of scratching. Changed to an "allergen/dye free" laundry soap...a little better. Extra rinse...a little better. Finally, switched to a dye-free shower gel. BINGO!

Also, my "no known allergies" daughter gets itchy with baths if she uses too much shower gel. Loves bubble bath, but usually overdoes it. I have to monitor and make her rinse with clean water after her bath, or, preferably take a shower!

And she itches badly after eating candy with blue dye. She did this several times on Wednesday night following choir practice at our Church. She is fine as long as she just gets another type of treat. I don't think the dyes do this to all people, but I do think some people react to them. We have gotten her fruit rollups that use only grape, etc... for coloring.


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 Post subject:
PostPosted: Thu Mar 02, 2006 11:47 pm 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
She uses dove baby wash unscented for baths and hand washings. We do not use bubble bath or anything like that. I am thinking of trying to find a more basic shampoo/conditioner. The girls have long hair, my oldest has natural curl too, so she needs a good conditioner. If anyone knows of a basic unscented, dye free shamp./cond, please let me know. We use ivory snow laundry detergent and double rinse. The extreme itching is fairly new. She has always itched but lately it seems to be getting worse. I had a cool mist humidifier which I washed up tonight and bought a new filter (that is protected from mold growth ), I plan on washing it very often. Hopefully the humidity helps. I am sooooo tired. I must go, I hear her calling "mommy I'm itchy".

Okay I am back. Yes, she has eczema. Her diet consists mainly of "one ingredient" kind of foods and soy follow up formula she has been on for two years. I am suspecting that if it is not humidity related that the only *new* thing lately is that strawberries have been available in the last few weeks...and she loves strawberries. So I am assuming here that maybe they flare her eczema and itching but she is not allergic. Also, she has been a "feisty little almost 3 year old red head" and has had to have a few timeouts here and there lately. On our info from the allergist it says "stressful and anxiety producing situations should be avoided" and she hates timeout.


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 Post subject:
PostPosted: Fri Mar 03, 2006 10:40 am 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
One of my sisters had eczema like that---she still does get eczema but it is much more controlled--and she usually doesn't get it on her face anymore. she does have a lot of food and environmental allergies, but I don't know that there is always a trigger related to allergies--I think it might be kind of like asthma in that way--it can be controlled, it is related to allergies, but it can be an underlying condition rather than being caused by something specific.
Oddly, my sister reacts to plastic and vinyl---she couldn't wear shorts to school because her legs would get so itchy. Even today she doesn't like wearing those latex free vinyl gloves for washing dishes because her hands start to itch. Also, getting upset or stressed makes her itchy. She *cannot* stand the heat--this summer I drove her home from a family reunion because she was breaking out in hives and getting itchy. It was really hard for her in school---kids started picking on her in grade four and they didn't let up until highschool (she went to a highschool out of town where no one else from her grade eight class went). It got so bad in junior high that she wouldn't even want to go for a walk around the neighbourhood in case she saw someone she knew.

saskmommyoftwo, that must be *so* difficult. I think my mom went through a similar experience---she had to get up every night with me until I was in grade one and was put on asthma meds and by that time she was also getting up every night with my youngest sister. I can't imagine being that chronically sleep deprived. Make sure that you take care of yourself!


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 Post subject:
PostPosted: Fri Mar 03, 2006 7:20 pm 
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Joined: Mon Apr 11, 2005 9:38 pm
Posts: 924
Location: Oakville, Ontario
Saskmommy, Our now 4 yr old son used to have terrible eczema, and could not tolerate even the most mild baby soap - including Dove. The only thing we've used on his skin & hair for the past couple of years while bathing him is Aveeno bath oil, and it has worked wonders!!!! I can't say enough good things about it!!!! You might wonder how the heck can oil clean skin, but he has beautifully clean skin, and he's no longer itchy!!! After his bath, we slather on Moisturelle cream. On occasion, if his eczema is a little bad in the odd spot, we will use cortisone, but we only need that every couple of months or so. Once we discovered the Aveeno, life changed dramatically for his skin. We recommended this to our friends recently for their daughter's eczema, and it has been a godsend for their daughter too! It's expensive (~$11- $12 per bottle), but well worth it. For our son's hair, we only use a couple of drops and scrub it in well. If you use too much, his hair is oily.


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 Post subject:
PostPosted: Sat Mar 04, 2006 7:20 pm 
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Joined: Fri Jan 06, 2006 8:22 pm
Posts: 154
Location: Georgia
saskmommyof2
Hope she is better this weekend.

BTW, strawberries have a lot of histamine; can sometimes cause non-allergic itching and rashes. I used to have a list of histamine-rich foods, but I can't find it just now.
Try an internet search.

Not saying to avoid them; maybe just rotate.
Daisy


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 Post subject:
PostPosted: Sun Mar 05, 2006 11:13 pm 
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Joined: Mon Feb 27, 2006 12:37 pm
Posts: 96
What do these doctors say about your child having hives and sinus problems and stuff? There has to be a reason why he is sick! Do they just brush it off? I hateit when doctors are afraid to admit that they don't know. I have an asweome doctor now that is not afraid to admit when he doesn't know, but specialists are the ones who have the biggest problem with their egos. Maybe if it did not show up in the skin test it would show up in a RAST? What part of his body did they skin test, because that can make a big difference. The most sensitive part of the body to skin testing is the upper back, then the lower back, then the forearm near the elbow, then near the wrist. Those are about the only sensitive enough areas to test. Did they ever consider the possiblity that he has GERD (reflux disease)? I know lots of kids who get ear infections and sinus problems from reflux, as wel as food adversions. Sometimes kids with reflux have a problem eating solid foods because the acid has done damage to their throat, so it hurts them to swallow or their throat is too swollen to swallow properly. Does he "choke" when he drinks some liquids? Does he gag a lot? Exactly how old is he and how long has he been having problems? My son has had reflux since birth, so I know how scary it can be. He gets hives from some foods too, but he has not been allergy tested yet, so I know your frustration. Hang in there! Maybe you could make an appointment with a pediatric gastroenterologist. :?

Here's a link to s site about pediatric Gastreosophageal reflux disease: http://www.reflux.org/

_________________
2 year old son: allergic to milk--waiting to introduce other allergens

self: allergic to milk, eggs, soy and other legumes, corn, oats, wheat, turkey, tree nuts, yeast, fish


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