Posts Tagged ‘food allergies



02
Mar
10

The Current ADHD Conundrum

My husband likes to say that Ryan is what happens when you take two people who lived on the fringes of society for so long and have a baby.

Ryan has ADHD.  He is impulsive, hyper, stubborn, has trouble listening, can’t sit still, has some social problems, and has issues with boundaries, hence he has the strongest inner punk rocker I ever saw.  That is all part of being a 6 year old with ADHD.  We have chosen not to medicate Ryan.  We feel that lifelong psychiatric meds are not necessarily what can help him in the long term. We use quite a few techniques to help Ryan navigate life.  I have talked about this in quite a few posts.

We have many boys in my neighborhood.  One neighbor has a boy a few years older than Ryan and a brother who is exactly in age halfway between Ryan and Aaron.  We spend time together on the snowy days and we have done some social things together. We enjoy them.

I have found with Ryan either other kids love him or can’t stand to put up with him.  They have a very visceral reaction to his not being able to comply all the time and his impulsiveness.  The neighbor kids have had a few run in’s with Ryan and our last visit did not go well.

My neighbor invited us to go to an art class this weekend with the boys.  At first I agreed.  Then I talked with my husband after thinking about it.  For most kids a Saturday morning art class would be fun.  I can’t imagine asking Ryan to sit still on a Saturday morning.  He follows the rules at school somewhat successfully all week.   (He has had a red, yellow, green behavior chart for school since January and he has never gotten a red, has gotten quite a few yellows, and even gets days on end of green occasionally. As much as I want him to be typical and go to the art class my gut said no.  Ryan needs space in his life that is ok to be wild and physical.  Weekends are for biking, scooter, swimming, hiking, and endless matchbox car sessions with Aaron.  Aaron seems to understand Ryan better than other kids, they fight but they also have an easy togetherness lately that has never been there before.  I wish I had one shred of normalcy around here. Just one day of not thinking of food allergy choices.  One day of accepting an invitation  without worrying how Ryan will handle it.

………….Then again I kinda hate normal.

26
Feb
10

Food allergy whine

Aaron had his food allergies reevaluated a few weeks ago.  I waited and waited to get his blood test results of the RAST testing.  It was disheartening.  The good news is his egg allergy dropped from highly allergic to moderately allergic and he is still highly allergic to peanuts but the allergy is not worse.  Now for the bad news.  His pork allergy went from moderately allergic to extremely allergic, the beef was worse but went from high to higher, and milk is also worse.  Every year when the news is bad it brings on the mourning of normalcy.  I am very worried about the pork allergy because the numbers are so high I am afraid he may become anaphlatic if exposed.  Aaron reacts anaphlactically with peanuts already and almost died the day I started blogging.  The numbers rising so dramatically with the pork allergy has me worried and I need to make an appointment with the allergists about what all this means for him.

Also for the first time kids made fun of him for his allergies.  He cried, I cried, and Ryan tried to protect him.  We were at a neighbor’s house having dinner.  Of course, I brought dinner for Aaron.  While all the other kids ate pizza he ate the “safe” dinner I brought for him. The other kids started with the what is wrong with you that you can’t have pizza.  Which turned to nah nah you can’t have pizza.  I came into the room with Ryan screaming, you jerks pizza can kill him, leave him alone.  The making fun of him for his differences starts here.  I was so proud of Ryan for sticking up for Aaron but sad for the struggle of being the different kid, the allergic kid who can’t be part of the school pizza party has me in tears all over again.  They once told me he would be done with his allergies by the time he is four.  With numbers like his I am worried this is going to be for a lifetime.

14
Jan
10

You Know Your Kid Has Insane Allergies When….

Yesterday was the yearly four-hour allergist appointment for Aaron.  It is always an awful long appointment filled with injections, skin pricks, blood being taken, and lots of waiting.  Exactly what a four-year old boy likes to do.   This year I knew things were worse.  Aaron became very asthmatic this fall but as the cold arrived this had improved.  I didn’t see the Allergist in the fall because I was busy visiting my sister who was in a coma.

I have to say the Allergists at CHOP are great.  They take a lot of time with us and ask about a million questions. They talk about the food allergies, environmental allergies, and the asthma.  They used to talk about when Aaron might outgrow his food allergies. They don’t mention it anymore and as he gets older and I don’t ask knowing this very special cooking hell may continue forever.  This year was different too in that the allergist had two other allergist come and look at Aaron and his past.  They all said they had not met a kid as allergic as Aaron in a while and they thought him to  be an interesting case.   I felt like the Mom to the sideshow kid but I tried to brush it off. I know the more docs looking at his case the more help we may get as new therapies become available.   Going to these appointments always rip the scab off the food allergy mourning normalcy wound in my heart.  I have to say with each passing year the hurt is less but it does not go away.   We walked out with new prescriptions and an asthma plan relieved it was all over.

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Today is National De-lurking day.  Are there any lurkers out there???  HELLLLLOOO.  I am super curious. Please leave a comment, anonymous if you want to.

04
Dec
09

Parenting Fail – No More Maimed Loved Ones

Having an ADHD child is something I would not wish on my worst enemy. It tests who and what I am made of daily in a visceral way.  Nothing else has tested me in my life like parenting this child and he is only six.   I am starting to feel that if I can keep him alive long enough he may get some sense.

Tonight was one of the roughest parenting nights I have had since Wildman (fuck it, his name is Ryan, enough hiding behind a pseudonym) was four years old before the interventions and behavior modification.  Let’s begin after school.

After school we spent a little time on the playground with Ryan, Little Boy A (who is Aaron by the way) and their friend S.  It was their normal play of Ryan torturing S. Ryan does not torture any other kid like he does S.  He wants S. approval so much he can’t control himself and resorts to negative behavior.  I swear sometimes I wonder why S even gives him the time of day.  I could see in Ryan’s eye that I had a long night ahead. We went to the grocery store and they were actually ok.  If the boys are well-behaved and helpful while grocery shopping they both get two quarters each.  I let them buy candy from the machines at the front of the store with one quarter and the other quarter they give to the charity of the week collecting in front of the store.  The cashier gave both boys a grocery bag so they had a place to put the candy. Both the cashier and I told them under no circumstances could they put the bag on their heads.

As soon as we merged into traffic both boys started putting the plastic grocery bags on their heads and tightening it around their necks.  I quickly pulled over and took the bags from each boy.  This resulted in them screaming all the way home and acting out.  Both boys then got out of the car and helped me bring all the groceries up.  I immediately could see some of their behavior was hunger and I set out to put the groceries away and start an easy dinner.  As I rushed to do all of this Ryan was in the kitchen every five seconds. Can I have a glass of seltzer?  Yes, as soon as I get the groceries away, please find something to do in the living room for 10 minutes.  Five seconds later.  My treasure box (a beautiful finished cigar box that I got for each boy for their found treasures) has been on time out for a week can I have it back?  Yes, but please be patient I will get it for you after dinner.  Five seconds later.  Can I have some seltzer?  You get the picture. After the 90th question he went in and hurt or took something from his brother.  Even though they are 20 months apart Ryan is over 30 lbs heavier than Aaron and can take anything from him easily.

I told Ryan to go into his room till dinner was ready because I was making dinner and putting groceries away and I did not have time for his negative attention seeking and chaos making.  This is the part of ADHD I hate. Ryan in some ways never got older than 18 months.  He never thinks anything through and never considers the danger of his acts.

After dinner as we went upstairs he told me while he was upstairs earlier he climbed to the top of my dresser and got the treasure box off the top of the TV.  GASP HE CLIMBED TO THE TOP OF A TALL UNSECURED 4 FOOT DRESSER TO GET THE TREASURE BOX OFF THE TV WHICH WAS ON TOP OF THE DRESSER.  All of a sudden I couldn’t breath.  I got so upset I shook. I sobbed for a good long time.  I know how completely dangerous that was and I have read the stories of kids dying with TV’s toppling. I have had enough near death instances with loved ones this year that the floodgates opened and I sobbed all the tears I never let myself have the luxury of crying.  I cried for the fear I had when my husband underwent heart surgery, I cried for the hell that was this summer, I cried for my sister P and how close she came to loosing her life, I cried for my Ryan’s bike accident, I cried for stupid fucking food allergies, I cried for ADHD, I cried for the lack of compliance on the school’s part for Ryan’s IEP, and I cried because I was just plain tired because I work at night.   As I cried I could hear my sister K’s voice in my head calling me a drama queen but I didn’t care. Fuck It.

Something had to give.

****************************************************************

News out of the ICU  continues to be good.  She is miserable in the ICU but she is starting to  eat and they turn the ventilator down a bit every day.  Tomorrow K is going to NY.  She works in the medical industry and she will bring back a fuller picture of what is going on.   We plan to have an intervention about her eating when she gets better.  We all want her around and that is something I won’t miss.

02
Dec
09

Spontaneity

Being the parent to an ADHD child and a child with multiple food allergies leaves little space in our lives for spontaneity.  Wildman thrives on a set schedule executed with precision. In Little Boy A’s case I have to plan carefully if going out.  I have to make sure I bring food, epi pen, and benedryl, just in case.  I didn’t have kids till my late 30′s so this loss of spontaneity has been something I miss most since the boys arrived. As they get older they are of course easier but the above problems don’t go away.

We always find dining out an issue.  Sometimes if we bring some food and order some food we are ok but again this means planning.  If we want Wildman controlled and not acting out with his eyes rolling in his head we have to keep his schedule. He is happier which makes us happier.

Today I got a small amount of spontaneity and it felt oh so good. My friends Cecily and Charlie, called to borrow something.  Charlie was going to stop by after Wildman got out of school.  I then called Cecily and told her that Charlie should bring Tori with him. Cecily I guess decided to come too.  Then they hit traffic and got to my house exactly 10 minutes after homework was done.  This visit morphed from coming to borrow something to a really fun dinner for six with three wild kids who were stuck in the house in the rain going bonkers. We had the most amazing wild time till Little Boy A threw up.  It was just so fun though.  For a few minutes I felt like spontaneity was again someday going to be in grasp.

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Another huge day in the ICU.  My sister was out of bed and in a chair for over an hour today.  She actually stood up after 3.5 weeks of being bedridden and tried to walk with assistance.  She took the swallow test today and if the ventillator does not suck any of the dye ridden applesauce out of her lungs she can start eating.   My Mom gave my sister her glasses and they actually watched TV for a while together.  No word on her other tests but all this news is almost too goo to be true.  I really wish I could get up there this week.

17
Jan
09

The Discussion In My Car

Wildman is sure that when his teeth fall out and the tooth fairy comes, he can ask for whatever he wants.  He has decided that he wants the tooth fairy to take away Little Boy A’s food allergies so that Little Boy A can eat anything he wants AND we can have peanut butter in the house………………………….  Oh my Little Wildman I want that too.

13
Jan
09

Food Allergies Go Away Come Again Another Day

I often read a blog called, “Please Don’t Pass The Nuts”.  I like to read what it is like to have food allergies from an adult point of view since my food allergic kid is only 3.5 years old and cannot always express what he thinks or feels about being allergic.  She posted a link to an op-ed piece in the LA Times about food allergies being a “yuppie invention”.

After reading the article I thought how I wished I was just an overbearing yuppie parent whose child had a psychogenic illness.  Mr Stein, may I please invite you over to watch the vomit fly, the hives appear, and the misery and fear in his eyes when my child gets even one sip of milk.  I wish he could of accompanied me when I carried my unconcious child into the hospital.  I wish it was just my neurosis bringing this sickness on. I wish you could of been there as he threw up his meals daily before we discovered all the allergies.  The issues he had with “failure to thrive” because he lost so many calories vomiting.  If it were just neurosis I could then think about going to dinner with my family or actually take a day off from cooking occasionally.  Before my youngest son was born I also thought food allergies were something fabricated by neurotic mothers.  I admit here that I was more than wrong.  I do not wish this life on anyone especially my child.  My food allergic kid and I never asked for this.  I hate hovering over him at a party or worrying about him at school.  I am not that kind of parent but after all this time it is the parent I have had to become. I wish for a world where it is not out of the ordinary for a food allergic person to be accommodated safely not ridiculed.

05
Dec
08

What………………he will eat that!!?!?!?!

I have found something new that Little Boy A will eat morning, afternoon, and evening.  Kozy Shack, the pudding people, have created soy pudding.  It is amazing.  Looks like pudding, tastes like pudding, smells like pudding and it is all organic and soy based.  Little Boy A told me today that the chocolate variety was “allergic” after tasting it because it was so good.   It has no high fructose corn syrup and it is all organic.  It is a treat beyond treats for him.  We used it as cream on top of vegan pumpkin pie and he loved it.

ALL HAIL SOY PUDDING.

I love when we get a new treat.

Do you all know that for us Oreo’s are non allergic.  My elderly Mom figured that treasure out.  Oh Yeah!

13
Nov
08

The Big Allergy Testing

Today was Little Boy A’s yearly allergy test to find out if he is growing out of his food allergies.  Last night my husband and I got a little excited and thought OH WOW wouldn’t it be great if we got one of his allergic foods back?  Well everything has remained unchanged.  (Fade out to me slaving over the stove cooking up allergen free foods)

02
Nov
08

So Punkymama where the hell have you been?

Ok folks I have been a neglectful poster. First off I live in Philadelphia. That means the Phillies won the World Series. I work in a bar smack dab in the middle of downtown. I have worked many many extra hours in the past two weeks. It has been so busy and the people so happy and excited. I am not a sports fan but working those days was really fun. I am away from the crowd behind the bar although they surround me and the money has been amazing. All the work combined with a flu shot has me sleeping like a baby this weekend.

Also our dear dear Wildman is having trouble in school yet again. They are asking him to cut his days to three days a week. I looked at other private preschools and they had nice programs but my gut tells me he needs more support than they can provide. I looked into the local Head Start. WOW. WOW. I was blown away. It is a federal program. They have to support Wildman and Little Boy A’s needs. They have to provide a special needs person to make sure Wildman is supported in the classroom and has help staying on task. Before we are admitted, we are unfortunately on the waiting list, my husband and I will sit down with a special needs coordinator and a nutritionist to discuss the boys needs. By law they have to be able to feed Little Boy A. This in itself just blows me away. Feed Little boy A! Heck even my family won’t attempt it. The program is great. The class is beautiful and the school is two blocks away from my house. The paperwork for the Head Start was overwhelming, more to fill out than a college application. They needed medical and dental records. Finally everything is in and we are waiting to hear. Think kind thoughts we get in soon.




 

May 2012
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