Posts Tagged ‘food allergies’

Section 504

Oh, time to blog again.  I am stressed.

I have been trying to get a 504 plan in place for Wesley for over a month.  Because of his life threatening allergy to milk, he is eligible to have this plan written out so that the school staff will have a guide of what is acceptable and what is not so that his life is not in danger and so that he can fully participate in school activities.  I can include things like sitting at a lunch table with other kids as long as they don’t have milk, and cleaning off the table with clean soap and hot water before he sits down.  Also, not using his allergen in the classroom as a teaching tool, washing hands after eating and things like that.  If they don’t abide by the plan, their government funding could be cut.

I am sure I am already starting out to be a major pain before the first day of school is even here, but I told the guidance counselor, Mrs. Powell, what needed to be done back in the spring when I preregistered Wesley for Kindergarten.   This summer, I called the special education coordinator because she is who would help me to get this going.  It was her last day so she couldn’t help me.  She resigned!  They have yet to hire a replacement.  I have called back to the board of education twice a week since then and they still have no one.

Yesterday was Wesley’s kindergarten screening.  I have been pretty calm up until then.  I talked to his guidance counselor while he was being tested, and she informed me that the school is under construction, people are on vacation, and she wasn’t going to tell me who Wesley’s teacher will be until the Friday before school starts.  (It starts the following Wednesday.)  Then, on top of that, she told me that they were not having an open house this year, and there would be no way for me to talk to his teacher until the first day of school!

What the crap?!?

She said she would tell the school nurse.  I do want the school nurse to know, but she isn’t the one who will be with my child all day.  I just never imagined that it would be this difficult to get some cooperation with such a serious issue.

So, not only is our 504 plan not even started, but she wanted me to send him to school without educating his teacher about his allergies.  Yesterday, my day was ruined after that.  It was miserable.  I didn’t know really what to do.  I did as much research as I could and I was intending to talk to the superintendent today, but in all my furor, I woke up this morning at 4:00.  I decided to email the guidance counselor and explain my situation.

I don’t want to be a pain in the butt.  I want to be a HUGE part of Wesley’s education.  I want to help out at school and I want his teachers to like me.  I don’t want to start out on the wrong foot, but what am I to do?  I am not going to risk his life!   I really didn’t want Wes to miss his first day or week of school.  It would be such an injustice.

I know that some people whose children have never had allergies really just don’t understand why I would not send Wes to school until things are fixed.  But Wesley’s life is more important to me than anything.  I absolutely refuse to risk it.  I can’t send him in there with a lunch room full of milk cartons and kindergartners without first explaining some things to the people taking care of him.

Today, I feel a lot better, but still freaking out.  Mrs. Powell emailed me back and said that she would arrange for the 504 meeting the day before school starts.  That is much later than I would like it to be, but atleast it is getting done.

I have all my stuff printed out.  I just need to get his doctor to sign.  I’m hoping that was the worst of it.

Whew, feeling better already!

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Food Allergies. Maybe No More?

I can’t find the switch to turn my brain off.  It is 4:30 a.m. and I am still wide awake.  Here is what I am thinking:

Finally, after four very long years, there is a possibility that Wesley may have outgrown some or all of his food allergies.  We have been waiting to get all of the immunosuppressants out of his system so that he can be tested.

It really and truly has always felt like this day would never come.

Last week I called his allergist and made an appointment for Monday.  I talked to her later on Friday and she said if we could get blood work done that day, he could do one oral food challenge at his appointment if the allergy “markers” weren’t there.

Oh, I was SO excited.  I was at work, but I immediately made arrangements to take the kid to get blood work.  Come to find out, it has to be sent out of town and we won’t know until Wednesday.  So, our appointment will be Wednesday.

It is just such a good thing to think about.  Wow, we have been so consumed with every bite that our kid eats and even what we eat for so long, it is nice to ponder that maybe, just maybe our kid can eat like everybody else’s kid does.  People won’t think we are overreacting.  When we go to restaurants we won’t have to ask for the manager and tell him fifteen times that our kid could die if he doesn’t cook the food the way we tell him to.  If we eat cereal with real milk, we won’t have to wash our mouth and quarantine everything that touched the milk. In fact, it is very rare that we even own cow’s milk anymore.  I have tried several times to completely ban it from the house.  We have probably only bought eggs about five times in these last four years because it is so scary to make sure all the egg is cleaned off even before we put it in the dishwasher.

We realized that Wesley had a problem very early.  In the NICU, he couldn’t nurse so I pumped.  They gave him my milk, but continued to push me to add formula so that he would grow faster.  I refused for several weeks until they finally made me feel like I was starving my child. (Which I definitely wasn’t.)  So, I gave the okay to mix formula in.  It made him very sick.  He got NEC and was npo for seven days.  Then THEY were starving my child.  Err, makes me mad to even think about it.

Back on subject..

So after he came home and continued to grow, we did what a lot of parents do.  He was probably six months old and we were eating ice cream.  We put a little in his mouth to see if he liked it.  Not long after, he had a rash around his mouth.  Not a big deal.  I never suspected a serious allergy and we moved on with our life.

In the next few months he would get a small rash around his mouth occasionally after eating.  It concerned me, but not much because the rash was the only symptom.  Then, one night we had friends over and ordered pizza.  Wesley was just a little over a year old and had a couple of little teeth.  I gave him a pizza crust to chew on.  About an hour later, his face was crazy swollen.  His eyes almost swelled shut.  He was wheezing.

I was a big dummy.  He was having an anaphylactic reaction.  I really didn’t think that could happen unless you had a nut allergy.  We called the on call pediatrician.  It was about 11:00 at night.  He told me he was having an allergic reaction, go straight to the emergency room.   I still wasn’t even that worried about it.  I really didn’t know how serious it was.  Well, his breathing kept getting worse and his lips were turning blue by the time we got there.  The next week, he was allergy tested and here we are.

Milk, soy and egg.

Once, he drank some of my iced coffee through a straw.  It had cream in it.  He started reacting and I had to use the EpiPen.  Not long after this, he had a cup of milk spilled on him.  On his body, everywhere the milk had touched, (which was most of his body) looked like it had been burned.  Another ER visit.  And that wasn’t even from ingesting it.  It was skin contact, and that was the beginning of the Arnett house milk ban.

Nevertheless, I have been very diligent to keep my child safe from these foods that could kill him.

So, all of these nice thoughts have been going through my head.  I keep thinking of all the things that he has never had and how I want him to have them all.  I keep imagining what if he has only outgrown one allergen.  It would open up a whole new menu for our kid.  I am just seriously overjoyed.

But then, I think, how can this even be possible.  How can something so deadly just be outgrown?   Just like that?  Apparently it happens.  In fact, by the time children are five, and Wesley is, they have a 90% chance of being allergy free.  Except for peanuts.  Most of the time peanut allergies are for life.  Thankfully, Wes isn’t allergic to peanuts.

Wesley is pretty dern ecstatic about this allergy test too.  After he had rituximab, we started to realize that if he could just stay in remission long enough, he would be able to be tested.  I started talking about it to him about a month ago.  He talks about it very often.  We go to the store and read the ingredients and daydream of what he could eat if only he just outgrew soy.  He has been talking about having his allergy test since I told him.

I was at work when I found out he needed blood work on Friday.  I called the house to tell my mother-in-law to take him to the lab.  I talked to Wesley and he normally hates to know he is getting blood work.  He was SO happy!

But, little did I know that my kid is just as stressed out about this as me, maybe even more so.  Last night we were going to sleep and he was talking a lot.  Then he kind of got sad and tears were welling up in his eyes.  He asked me how did I know that he wouldn’t die when we do the food challenge.  I told him his doctor would be very certain that it was safe before we try it.  I reminded him how we did the peanut challenge.  I told him if he had a reaction, we have medicine and he wouldn’t die.  He cried.

And I think, this is all he has ever known.  He is an awesome self-advocate.  I have taught him how serious food allergies are.  How scared my baby must to go against every thing he has been taught.

Boy does it break my heart that my little boy, who should be carefree, is worrying about such a thing.  He has been through so much in his short little five years.  He doesn’t even realize it.  It is all just normal to him….  Until we tell him he can eat an allergen.

Well, that is yet to be seen.  We have to get the blood work back first.

So this is what I am thinking and why I am still awake at the time that most people are just waking up from their good night’s sleep.

First Day of School

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When Wesley was almost a year old, he was diagnosed with life-threatening food allergies to milk, soy and egg.  We found out the hard way when he ate some pizza and had an anaphylactic reaction.  These food allergies, like nephrotic syndrome, are the result of a confused immune system.  The allergy doctor told me that 90% of children with food allergies outgrow them by the time they are four or five years old.  It has become obvious to us that this is not the case with our child and his stubborn immune system.

It has always been hard nearly impossible for me to trust others with caring for Wesley.  First, he was born at 29 weeks gestation which caused me to have some serious anxiety about how my child was taken care of and who was taking care of him.  Wesley was in the NICU for 8 weeks.  It was so hard to leave the hospital every day and let strangers that I barely knew take care of my new baby.  In the pregnancy books, I always skipped over the “premature baby” parts because I never thought it would happen to me.  Welp, I should have read those chapters because I was completely in the dark about what was going on.  In the NICU, I could only hold him at certain scheduled times of the day.  Some of the nurses would let me hold him when I wanted to, then others acted like he belonged to them and wouldn’t even let me touch him.  We brawled!  I was always unsure if my instinct was right or if the nurses were right.  They all had their own standards on what they thought was the right thing to do… By the time I left the hospital, I learned to trust my own instinct, and to this day I am positive that even if you are a first time mommy, you know what is best for your baby.  No one else does.  Ask questions when you are unsure, but you know what is best.

So, when we came home from the hospital, I was a mean mamma lion.  I was very protective of my little man.  He still had a very low immune system since he was born so early.  The doctors emphasized that he shouldn’t be out in public for several months, that he shouldn’t be around anyone who was sick including myself or my husband.  It could kill him if he caught a cold because his lungs were still developing.  RSV was a huge concern.  I wouldn’t even let his grandparents come see him for weeks after he came home.  I was so scared that my baby could get sick and die.

Just when I started getting comfortable that he was old enough to get sick was when we discovered his food allergies.  That was when I decided that he probably wouldn’t go to public school.  Just about every week I read an experience where someone at school gave a food allergic kid something that seemed fine and the child ate it and died.  I decided that I would either home school him or be a full time volunteer at his school.  How could I yet again trust a person that I don’t know to care for my child along with 20 other children and make sure he didn’t get something with milk, soy or egg in it?  Even I have made mistakes.  One of my mistakes caused me to have to pull out the Epi Pen and use it.  Brad has made mistakes.  Other family members have made mistakes.  And we all well know what can happen if we make a mistake.  What about someone who doesn’t love Wesley the way we do?

Then, along came nephrotic syndrome.  As I said in an earlier post, my child is just not allowed to get sick.  No little colds that are no big deal to the common kid.  No mosquito bites.  No allergens.  Nothing that will stimulate his immune system.  Public school is just out of the question for Wesley.

I know that the home school/public school debate is a hot subject for not only parents with healthy children, but also with parents whose children are sick like mine.  Some NS parents choose to send their children to public school and to them, the benefits outweigh the risks.  My husband and I have talked about this for a few years now, and our decision is to home school Wesley.  Atleast for now.

So, here we are, at the end of the first day of school… at home.  How did it go?  It was fun!  We stayed busy all day doing fun stuff that taught Wesley new things. Our curriculum is very specific and easy to use.  I can’t wait to see what the rest of the school year will bring.

For the opening of the school day, I read a bible story to Wesley.  Next, we did math, then music.  We did some reading and writing.  For writing, tears were shed.  It had been a long day and the boy has been writing the letter “A” for months.  He just really didn’t want to write it multiple times.  But ya know, practice makes perfect!  Wesley learned to sort things in different ways.  He sorted by colors, by shapes, by sizes and everything else you can think of!  He is an excellent little sorter!

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I even cooked supper!  What a day!

How was your child’s first day of school?  What was the most challenging?  Hope everyone had a great day!

A Little Bit About Wesley

Hello, friends.  I am starting this blog to keep everyone informed about Wesley’s condition and to share fun things about our family.  I am also hoping that this will serve as a therapy for me.  (I can’t afford $50 per hour for a real therapist, so maybe this will help!)

You may ask, “Why is this blog named ‘Rocks In My Purse’?”  Well, you see, my son is a rock collecting machine.  Every since he was small, he is always picking up rocks for his “collection” which is quite big by now.  And where do they normally end up on the way to his shelf?  My purse of course.  …And I wonder why my purse is so heavy!

As most already know, Wesley has a rare autoimmune disease called nephrotic syndrome that effects the way his kidneys filter his blood.  When he is in an active relapse, his kidneys spill protein (albumin) from his blood through his urine.  Our bodies need albumin to soak up the excess fluid from our tissues and keep our bodies in balance.  When he looses a lot of protein through his kidneys, his body gets swollen up and because of the lack of albumin, he is at risk of blood clots.  The swelling causes his blood pressure to shoot up and he must be treated.

We keep a daily check of his urine to make sure that he has no protein in it.  We have special test strips called Albustix that we use.  Wesley is very accustomed to peeing in a cup as soon as he wakes up.  Occasionally I have found him testing his own pee!

He generally stays in remission with steroid treatment, however he has been on steroids for about a year and a half.  The effects of long term steroid usage are not good.  We are to the point that we know Wesley must have his immune system suppressed in some way, whether it be by the steroids or some other treatment.  Since his little body already will have been effected by the large amounts of steroids that he has used, we must find an alternative option.

We have known for quite some time that we would probably get to this point.  We have a couple different things we could try.  There are anti-rejection drugs like CellCept, tacrolimus, or cyclosporine that transplant patients take to keep their immune system from rejecting a transplanted organ.  These drugs lower the immune system and have many unwanted side effects.  We have also done much research on a newer treatment that falls under the class of monoclonal antibodies.  It is called rituximab.  Rituximab has been around for about 15 years, but was initially used for adults with non-Hodgkin lymphomas.  Now after a few years of research, it has been found that this treatment is also good for ones with autoimmune conditions.  It has only been used in children with NS for about five years.

We are really just buying time to keep him off the steroids until he (hopefully) grows out of this.  There is a large chance that by the time he hits puberty, this will no longer be an issue.  However, I have several older teenagers in my support group who have had no such luck.  I am hoping that will not be our case.

Back in the late fall/early winter, we did a 12 week course of cyclophosphamide which is a chemo therapy drug.  It was a hard decision, but the odds looked to be in our favor.  The drug was given in a very low dose and I was able to mix it myself and give it to Wesley at home.  After the treatment was over, he was drug free for eight weeks!  We were so happy that it worked, but also very cautious that he could still have a relapse at any time.

Sometime in March, Wesley got strep.  Anything that causes the immune system to react can cause a relapse.  Well, he did.  I was devastated.  We put him back on oral steroids and did a very fast taper.  At the end of the taper, he relapsed again.  By that point I was getting desperate to find some alternative treatment that could help him that wouldn’t destroy his body.  He had already been through so much.  We decided to do another course of steroids and do a super slow taper.  Also, with all the research I had done, I decided to cut gluten completely out of his diet.

Here we are, from May until August, gluten free.  He has been on the very end of the taper, a very low every other day dose of steroids, for over a month.  We had planned to keep him on that low dose until this Fall.  He has been very healthy all summer.  No problems at all.  Everything was looking great.  It seemed like maybe cutting out gluten was the answer.  He was scheduled to have a hernia repair this month on the 16th.  Then, last Thursday we did his daily urine test and he is spilling protein again.

This is not so much a surprise as it has been in the past, but I am still very upset about it.  I really want to get the hernia surgery out of the way.  We can’t do it with his immune system being low.  (Which is what we must do to put him back into remission.)

I need a bubble to put my child in.  When he is in remission, we are constantly worried that he will catch a small cold and have a relapse… but when he has a relapse, we have to lower his immune system and if he gets sick then, his body may not be able to fight off the bug.  So no matter how you look at it, my kid is just not allowed to get sick.  It is ridiculous!

Why can’t he just be a normal little boy?  I hate that he can’t experience the things that normal healthy kids get to experience.  I try as hard as I can to make his life as normal as possible.  It scares me that someday he is going to be emotionally scarred in some way because of this.  I know I already am.  I hate nephrotic syndrome and I hate food allergies.  I just want the very best for my baby.

This is my very first blog ever and I want it to be fun.  I want to say happy things and make people laugh.  I just felt the need to vent tonight.  Maybe I will sleep good now!