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New here with a child with severe allergies.

Posted by on Mar. 9, 2012 at 4:12 AM
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I am new to this forum and new to understanding allergies.

Here is some background: my son who is 8 has had tics (sniffing, eye roll, scratching tic and tons more) since he was 3.5yrs old. At 5, he was dx with Tourettes, OCD & sensory isssues. At 6 we noticed a connection between his tics and strep infections so we sought a specialist. My son was then dx with PANDAS (pediatric autoimmune disorder assoc with strep). In Dec our son tics turned into tremors and he looked Parkinson like. We sought out more docs. At the same time his school did a hearing screen and he failed. We were referred to an ENT. He was dx with severe hearing loss so doc ordered a MRI. During MRI they thought they saw a brain tumor but after further consults they figured out the mass was a malformed sinus.

Anyway, we wanted to know more so we scheduled an appt with an immunologist. He did the adult allergy test on my son and my son came up with severe allergies (cats, soy, peanuts, a few molds & all trees, grass, weeds). So now his doc is pulling 36vials of blood for more extensive testing (full allergy panels, thyroid, etc, etc).

So how does one handle dealing with a child like this? His doc thinks his hearing loss is b/c of his allergies and immune disfunction. Has anyone had any of these symptoms as reactions? If yes what did you do?

Now about soy...it appears it is in almost everything. Is this true? Is soy lecithin something that needs avoided with a soy allergy?

Thanks for alk your help!!!
Jen



by on Mar. 9, 2012 at 4:12 AM
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Replies (1-9):
starreyedcutie
by Member on Mar. 9, 2012 at 10:02 AM
I'm kinda new to the allergy thing too. My son is allergic to peanuts walnuts milk egg white dogs and cats...we have a epi pen but thank god never needed it yet.
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DylansMom1207
by Member on Mar. 9, 2012 at 8:45 PM

 Hi!

We have allergies to nuts, peanuts, pollen (grass & tree), ragweed and dust mites.  The most severe thing we have experience is asthmatic issues.

I'm sorry your DS is having so many severe reactions.  Try reading some info on FAAN, Food Allergy and Annaphalixs network.  There info is very detailed.

MamaEngineer
by on Apr. 2, 2012 at 1:37 AM
Yes, soy is in just about everything - bread, meats, prepared foods, soups. Most studies say those with a soy allergy do not have to avoid soy lecithin, but with my soy allergy I have to moderate how often I have foods with soy lecithin to every other day. Lecithin causes hives while soy causes anaphylaxis in me.


Quoting vermontmoms:

I am new to this forum and new to understanding allergies.



Here is some background: my son who is 8 has had tics (sniffing, eye roll, scratching tic and tons more) since he was 3.5yrs old. At 5, he was dx with Tourettes, OCD & sensory isssues. At 6 we noticed a connection between his tics and strep infections so we sought a specialist. My son was then dx with PANDAS (pediatric autoimmune disorder assoc with strep). In Dec our son tics turned into tremors and he looked Parkinson like. We sought out more docs. At the same time his school did a hearing screen and he failed. We were referred to an ENT. He was dx with severe hearing loss so doc ordered a MRI. During MRI they thought they saw a brain tumor but after further consults they figured out the mass was a malformed sinus.



Anyway, we wanted to know more so we scheduled an appt with an immunologist. He did the adult allergy test on my son and my son came up with severe allergies (cats, soy, peanuts, a few molds & all trees, grass, weeds). So now his doc is pulling 36vials of blood for more extensive testing (full allergy panels, thyroid, etc, etc).



So how does one handle dealing with a child like this? His doc thinks his hearing loss is b/c of his allergies and immune disfunction. Has anyone had any of these symptoms as reactions? If yes what did you do?



Now about soy...it appears it is in almost everything. Is this true? Is soy lecithin something that needs avoided with a soy allergy?



Thanks for alk your help!!!

Jen








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ElmoRules
by Member on Apr. 2, 2012 at 11:58 PM

The tics, ocd and sensory issues can all be symptoms of delayed reaction food allergies.  You are really lucky you found a doctor who checked for PANDAS it is often missed.  My girls have delayed food reactions to dairy, soy, beef, eggs and all gluten.  They used to also be allergic to bananas and squash but have outgrown those.  One of their symptoms was hearing loss.  At 12 months, they were not making any noise and hadn't done the typically sounds as babies.  We started sign language with them at 6 months because I had read it would cut down on tantrums.  We had been communicating with them with sign language and didn't think anything of them not talking (identical twins).  When we found out they couldn't hear, it was due to fluid building up because of their alleriges.  They had tubes put in and the fluid cleared out.  They then went through speech therapy and quickly caught up with speech.  We do eat soy oil and soy lecthin (or however you spell that).  Both of those are so processed that the protein is removed.  We stay away from anything else with soy.

I would recommend two really good books.  Is This Your Child? by Dr. Doris Rapp and Healing the New Childhood Epidemics by Dr. Kenneth Bock (this book is the first time I had heard anything about PANDAS).  These two books helped me tremendously.  It sounds like you have a very good doctor but make sure they are looking at IgG allergies (delayed reaction) and not just IgE (immediate reaction) because the symptoms you describe are more IgG symptoms than IgE.

I have a friend whose son had lots of OCD issues.  She found out that he was allergic to dairy (delayed reaction) and once he was off dairy, the OCD issues pretty much went away.  Is there a food he craves and eats all the time?  If so, that is probably what he is allergic to so if you eliminate it for a couple of weeks, you should see results.  Her son was drinking 8 glasses of milk a day.  Another friend of mine...her son was eating like 6 apples a day and she found out that is what he was allergic to.

vermontmoms
by New Member on Apr. 3, 2012 at 6:47 AM
Thanks for the great info!!! My twins are both being tested for allergies but my one has much more severe symptoms. That said, both were dx with PANDAS.

I am in the process of reading Dr. Bock's book (1/2 way) and Saving Sammy (book about PANDAS).

We are just a little overwhelmed with all his allergies (get all blood work results Apr 12th) and dealing with a hearing aid too on top of his other symptoms. I am glad we are making progress but the road seems never ending right now.

Anyway, thank you again for your info!
Jen


Quoting ElmoRules:

The tics, ocd and sensory issues can all be symptoms of delayed reaction food allergies.  You are really lucky you found a doctor who checked for PANDAS it is often missed.  My girls have delayed food reactions to dairy, soy, beef, eggs and all gluten.  They used to also be allergic to bananas and squash but have outgrown those.  One of their symptoms was hearing loss.  At 12 months, they were not making any noise and hadn't done the typically sounds as babies.  We started sign language with them at 6 months because I had read it would cut down on tantrums.  We had been communicating with them with sign language and didn't think anything of them not talking (identical twins).  When we found out they couldn't hear, it was due to fluid building up because of their alleriges.  They had tubes put in and the fluid cleared out.  They then went through speech therapy and quickly caught up with speech.  We do eat soy oil and soy lecthin (or however you spell that).  Both of those are so processed that the protein is removed.  We stay away from anything else with soy.

I would recommend two really good books.  Is This Your Child? by Dr. Doris Rapp and Healing the New Childhood Epidemics by Dr. Kenneth Bock (this book is the first time I had heard anything about PANDAS).  These two books helped me tremendously.  It sounds like you have a very good doctor but make sure they are looking at IgG allergies (delayed reaction) and not just IgE (immediate reaction) because the symptoms you describe are more IgG symptoms than IgE.

I have a friend whose son had lots of OCD issues.  She found out that he was allergic to dairy (delayed reaction) and once he was off dairy, the OCD issues pretty much went away.  Is there a food he craves and eats all the time?  If so, that is probably what he is allergic to so if you eliminate it for a couple of weeks, you should see results.  Her son was drinking 8 glasses of milk a day.  Another friend of mine...her son was eating like 6 apples a day and she found out that is what he was allergic to.

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ElmoRules
by Member on Apr. 3, 2012 at 11:10 PM

I saw Dr. Bock speak at a conference in NYC.  He is fabulous.  He had videos of kids who came to him with the autism diagnosis and then after they had treatment by Dr. Bock.  The kids no longer were diagnosed with autism.  We are from Iowa.  I was so excited after his presentation that I told my husband if we lived in New York we would be going to him.  The girls don't have autism but have many food allergies.  We were able to find a DAN doctor a couple of hours away from us.  The girls started seeing him in November and they began LDA shots in January.  They just got their second shot.  They can currently eat all of the foods they were allergic to except for gluten.  It has been life changing.  Keep me up to date on how things go for them!

Amy3831
by New Member on Jun. 15, 2012 at 10:50 AM

We just found out that my 14 year old has more allergies than we thought.....we knew she had an egg allergy but come to find out she has allergies to egg, pork, soy, sweet potatoes, peas, rye, chocolate, and a ton of environmental allergies.  I have heard the same about soy lecithin but I am new at the soy thing so any info would be great...I also read that soybean oil is safe...not sure about that one either.

JulieT727
by Member on Jun. 16, 2012 at 10:54 AM

My heart goes out to you, your son, and family.  Constant medical conditions in children are the most stressful.  Some of his symptoms can be associated with food allergies.  The only way to know is to be very restrictive with his diet.  You mentioned soy and peanut which to me means legumes.  You may want to go the extra step and avoid all legumes (peas, beans like pinto, black, etc...you can find the entire list online).  Soy lecithin does not have the soy protein however it does bother some children.  It is best to leave it out of his diet and then later on (8 weeks or so) introduce it. Avoid the oils for now (soy and peanut), he may be tolerant of them but it is best to challenge his tolerance in the doctor's office. He obviously has a weakened immune system; allergies are an immune system disease.  With that in mind you may want to consider a diet of fresh fruits, veggies, lean meats and eggs that are organic with no-hormones, additives or no nitrates, and lots of fresh water.  For starches, potatos and whole grains like quinoa and brown rice instead of crackers, cookies, breads, etc....  Since wheat is a grass you may want to eliminate it too; some may say this is overboard but my experience is that many have an undiagnosed wheat sensitivity that can cause immune function problems.  Sugar is another substance that is recommended for avoidance with some diseases.  With the elimination of legumes, wheat and sugar you can start your son on a nutrient dense diet that should help strengthen his immune system.  If you want to know more about food allergies go to:  www.allergyfreetable.com

Holland04
by on Jul. 10, 2012 at 12:07 PM

Welcome to the group. I'm Trisha and I have one son, James. My son is 4 1/2 and was diagnoised allergic to soy (among other things). Yes, it is in a LOT of stuff. Stuff you wouldn't think of (multivitamins).  You just need to a lot more time to grocery shop now. Find substitutes. We found Annie's Organic (cheddar bunnies) which are a soy free option instead of "Goldfish". Target has a market fresh bagel (in the cold section by the biscuits and butter) that are soy free. There is a brand of bread called Rudi's that is soy free and they have hotdog and hamburger buns, torillas, and bread. For breaded chicken we've found Tyson is the way to go. The cheaper brands use vegetable which includes soybean oil. Try using canola or olive oils when preparing things. I've had to read the labels on spagetti sauces because a lot of them have soybean oil. Educate your child so they are aware. My son knows he can't have soy because within 30 minutes he's covered in hives and so itchy he scratches until he bleeds. We have an epi pen now that we carry with us just in case we get to a scarey point. Feel free to message me if you have any questions. Also, watch candy (I had no clue that tootsie rolls had soy bean oil until I gave DS one and he was covered in hives.) As for the question about soy letchin...James seems ok with small amounts of soy letchin but no soybean oils, proteins, or soy flour. 

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