Allergies, Allergies, Oh My ....

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Here is Kaedyn doing his Asthma blowing test.  

Facebook Status: At Kaedyn's allergy appt....Kaedyn is allergic to every nut there is almost....Walnut 2, Cashew 3, Pistachio 3, Peanut 3, Hazelnut 3, Pecan 2, no reaction to Macadamia Nut, Brazil Nut, & Almond... The numbers go from 0 to 6 .. 6 being most severe... That's the blood test results.... He is still getting spot testing...

So they decided to test him for half strength Almond and Brazil Nut...   along with some food panels ...  (they were ONLY going to the two half strength nuts today - I guess they don't carry a oil for Macadamia Nuts.)  But I talked her into doing other stuff.  I didn't feel it was right to keep him off all his allergy meds for two tests.   Plus, it's not just this past week, it's all of the next week too cuz he has more tests on Tuesday.

Getting the tests done..... 

This was at 5 minutes and 10 minutes .... 

By the time they did the measuring - the Almond spot actually decreased.  They have it as a +1 but it was more like a +3.  

These results, also - are from negative to 4 being most severe.  

So far, this is everything that he's allergic to.  

Now - can someone explain to me how my child can be super allergic to Peanut Butter - like AS allergic to Peanut Butter as he is to Cashews and - he - doesn't - react ... not to peanut butter.  

Guess This Explains It A Bit .... 

Allergic Reactions

A person with nut or peanut allergies could have a mild reaction — or it could be more severe. An allergic reaction usually happens right away, but some people can have another reaction a few hours after they eat a nut or peanut.

Here are some of the problems an allergic reaction can cause:

• Skin: Skin reactions are the most common type of food allergy reactions. They can take the form of itchy, red, bumpy rashes (hives); eczema; or redness and swelling around the mouth or face. A rash can happen when a nut or peanut comes in contact with the skin, even without eating it.
• Gastrointestinal system: Symptoms can take the form of belly cramps, nausea, vomiting, or diarrhea.
• Respiratory system: Symptoms can range from a runny or stuffy nose, itchy, watery eyes, and sneezing to the triggering of asthma with coughing and wheezing.
• Cardiovascular system: A person may feel lightheaded or even faint.

In the most serious cases, a nut or peanut allergy can cause anaphylaxis (say: an-uh-fuh-LAK-sis). Anaphylaxis is a sudden, life-threatening allergic reaction. A person's blood pressure can drop, breathing tubes can narrow, and the tongue can swell.

People at risk for this kind of a reaction have to be very careful and need a plan for handling emergencies, when they might need to use special medicine to stop these symptoms from getting worse.

So I guess that Tree Nuts (Cashews) and Peanuts are very much separate allergies.  Kaedyn has anaphylaxis towards cashews.  Doesn't mean he will towards Peanuts - because he doesn't.  

But he does have a lot of the other reactions.  He gets itchy, he gets hives, he has eczema, stuffy nose, etc - but with all his allergies - it's going to be hard to pin point.  HOWEVER ....  I guess we know and we'll just have to keep an eye on him.  Without him reacting - with life threatening ways - we really don't need to become a peanut free home.  

Genetics Appt. No RSS & Diabetes?

Made it to the Genetic's appt.  We haven't seen them in 2 years.  Last time we saw them, they said 2 years unless something changed.  I made a 1 year appointment anyway - and ended up canceling it.  Then I made one earlier this year, and ended up missing it because someone was sick.  So I'm glad that we made it today.

Here is Nathan and Noah in the waiting room.

So the appointment went well - and wasn't EXACTLY what I had expected.

So Noah went first.  Dr. G was rather impressed with him and his progress.   He says that Noah's muscle issues are due to his MT16 because his brain wasn't formed right in utero - it formed different - and because of that his brain isn't communicating with his muscles correctly.  So this is something that he's going to have to deal with for the rest of his life.  He also said that Noah will have to be dependent on someone for the rest of his life - which I hope that isn't true, but it's something that we've been planning on anyway.  Noah is still small for his age.  He was 91 lbs and 59 inches.  Looking at the chart online - I think he's around 15% on the chart for his age for weight. And about 11% for height.

Using this Children's Growth Chart Percentiles Calculator - this is what it told me.

At 13 years and 5 months:

your child is 91 pounds, and that is
at the 20th percentile for weight.

your child is 59 inches, and that is
at the 11st percentile for height

Back to the muscle issue, he says he's doing really well with what he's got and was rather surprised with how much strength he can put out there.  He was impressed with the homeschooling and the progress he's made in the last couple years.  Even though he is still unbelievably behind, we are making progress.  Slow and Steady.

The other thing we had to discuss was Noah's "dirty neck syndrome"  ....  he has this perpetual dirty neck and no matter how much I scrub, I can't get it off - I keep nagging him about it.  Turns out it's a syndrome that can point to pre-diabetes.  It's common in obese kids (people) and those who are pre-diabetic or diabetic.  We checked Noah's sugar today and it was 163 - all he had to drink was one can of 7up and he had a tiny piece of cheese.  That was it.  He didn't really eat until after we got home.  So we're going to check it again in the morning and see what his fasting is.  (Edit: It was 88 for a fasting.  Which is great!!)

Nathan ........ oh Nathan.   So one of the first things he said was "I'm not sure about the Russell Silver Syndrome diagnosis."  ::: smacks my head :::  Really?  REALLY?   This again.  Nathan was diagnosed with RSS in April 2010, it was a clinical diagnosis which most RSS diagnoses are.  I think only about 10% (give or take) are actually genetically confirmed.  Basically - Nathan was diagnosed RSS because he fit the criteria.  But he's never been fully absolutely A-Typical RSS.  So a lot of doctors have made comments about how he doesn't have RSS and they are going to figure out the mystery of Nathan.  Which annoys the piss out of me.  But I guess when it's coming from the Genetic's Doc - who previously agreed with the RSS diagnosis - then I can't be mad.

He says he has some of the facial things, and other physical "symptoms" ... but he doesn't fit well in the RSS box.  That his brain issues are a major concern pointing away from RSS, and all of his speech issues.  So ...  he's thinking it's got to be something else.  It's definitely genetic, but he can't put his finger on anything in particular.    He's doing a carbohydrate deficient transferrin for congenital disorder of glycosylation.  He's also banking DNA and going for a pre-authorization for a Chromosome SNP array analysis.  Which is the newest and greatest in chromosome testing.  He kept calling the tests Nathan had in 2010 as "old fashioned" lol.  I'm like, geez, it wasn't that long ago.   But Dr. G seems pretty confident that it's not RSS now.  So I'm really confused.

Nathan was 42 lbs 44 inches.  He's not even on the charts for his age.  Roger and Dr. G were saying that he's about 50% tile for weight and height for a 5 1/2 year old.   Oye.

Using this Children's Growth Chart Percentiles Calculator - this is what it told me.

At 8 years and 3 months:

your child is 42 pounds, and that is
at less than the 3rd percentile for weight.

your child is 44 inches, and that is
at less than the 3rd percentile for height.

He kept calling me a great mother and that I was doing an amazing job with them.  Makes me feel good.

So here is Noah's Neck.

I guess it's called ACANTHOSIS NIGRICANS ....

I did a home PEE Dip on him tonight too.   He's spilling a TON of blood at the moment.  (He has kidney issues) ...   his Kidney Doc told me that it's not so much the blood - it's more the protein we have to keep an eye on.

His pH was off, Glucose and Ketones and White Blood cells (Leukocytes) were all good ...  Protein was Neg to Trace ...  and his blood in the urine was off the charts.  LOL.   I'm going to have him repeat it tomorrow too.  See how it is.

The Monkey in the Asylum Day 1 & 2

First, I have some catching up on this blog.

Second, I don't know what to entitle this blog....

Mystery Diagnosis Duex ?

I don't know.   I guess I'll go with what I figure out in a few.

Regardless, I feel like I have gone through this story a hundred times already if not five hundred.

Yesterday, Nathan was complaining about his back hurting, a lot.  I haven't actually ever heard him say "a lot" before.  But he did.  He said his sides were hurting too, mostly complaining about his right side.  So .... he asked me for some medication - also something he doesn't normally do ...  and he said "Hurry" which is another thing that made me go hummmmm.....  never done that before either.

So ....  fast forward a little bit.  I gave him a suppository thinking he might be constipated.  He pooped a little, pooped a little more... said he felt better.

But he spent time on my bed in clear pain.

It was later that night - when we were getting him ready for bed... that I noticed that his right scrotum was very red, very swollen and painful to the touch.  Yeah.  That can't be good.  Got him settled for bed.

I called the next morning (Thursday morning) and got him an appointment to see one of the doctors at the clinic late in the evening.

Nathan was complaining he was in pain again.  Back and sides again.   He wanted to lay down and use my phone to play on and I told him it was almost dead....

He wasn't amused ....

At this point he was kinda wallowing in pain.  It was almost time to go to the Doctors ....

Got dressed and got silly!

He gave Mommy a tiny flower she put in her hair.  But look at the smiles!

And then he melted down on the grass and was in pain :(

Nathan was not HAPPY at all about having to put on hospital bracelets ...

  We got there,  He was looked over ... she wanted us to go to the ER to make sure that his testicle wasn't twisted.   So we did, and he got an ultrasound done.  Everything looked good.

Testicles were not twisted and so we were given the OK to go home, was just waiting for his first dose of antibiotics ....

Once we got the meds, and the discharge papers ...  we hit the road Jack.   There was a very beautiful sunset going on ....  so I had to take a few pictures

He was diagnosed with a UTI and Epididymitis (which is an infection in your scrotum around your testicle.

Kaedyn at home reading over Nathan's potential Zombie Virus

Me - well I was getting ready for bedtime meds - can't you tell from the tube extension around my neck?

Sadly after meds, Nathan got sick around 10:45 PM and kept getting sick until about 3 AM.  He kept throwing up his meds.  I even gave him some anti-nausea meds and he still threw up for an couple hours after.

Ugh.... Poor Baby ......   We considered taking him back in but thought it was probably the meds, so we figured we'd just call in the AM to see if they wanted to switch it.

Continue to:  The Monkey In The Asylum * Day 3 * The ER 

The Story of the Staph...

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August 5th ....  

We've been back from the Doc for a few hours. Not such great news. Seems Nathan has a Staph/MRSA infection around his Mic-Key Button. They are treating him for the MRSA just to be safe, though that isn't a confirmed thing. He just doesn't want him to suffer longer incase it is. Scary

August 6th ...

Nathan's first dose of antibiotics, followed by a couple tablespoons of live culture yogurt. This is what his Doc wanted us to do because he is being treated for the staph/MRSA very aggressively is killing of both the good and bad bacteria.

August 7th ...

Getting his yogurt in him...  
Nathan is eating! See it's going through his mouth! Lol

Staph still getting worse. May go back in tomorrow (or try) to make sure it's okay. At least call, if it's still like this... We were doing his yogurt bolo ... He hates yogurt. Prayers, positive thoughts, healing vibes, whatever you believe in we'd appreciate

August 8th ...

Nathan's Staph Infection is still getting worse which - after only a couple days on the meds - could be expected. But .... Ugh. The pictures with the tape measure were taken today. Appointment with the DR tomorrow morning just to check in because it is still getting worse.

August 9th ....

Nathan's Staph infection is actually looking better this morning - HOWEVER ... now, it's BLEEDING....... what the heck???? I don't know if it's his G-Tube site bleeding or the Staph infection because it's one and the same, but it's not just a little tinge of blood, it's a bit. So we're going to keep our appointment to see the DR at 10:20 just to make sure everything is okay. Originally we were going to cancel it if it was looking better this morning.

Just got back from the DR and he says he's happy with the way things are going and he thinks that the bleeding is coming from some Granulated Tissue  So ... yay for healing!

August 10th ...

Just finished up Nathan's meds & yogurt ..... first I got meds all over cuz I left the other port open... THEN I got water all over because there was some clumps of yogurt clogging the tube and I had to use some water in the med port to put some pressure through the tube in order to clear out the tube and like an idiot ... well, lets just say I ended up giving myself a bath. Good times. But it's done. He isn't feeling well today but it is DEFINITELY looking better ... less red and less area covered....

....... and that night was leading into a whole other nightmare......  

Surgery might KILL him........ & G-Tube Stuff ...

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Today we had to head over to Seattle to have a few appointments.  First one was to do the post-op for his G-Tube and do some training.  Clear him to start his feeds.  Then we were doing the VPI Clinic which several tests to figure out if 1: Nathan's palate is moving, 2: if Nathan's palate is long enough, 3: If he needs surgery to lengthen it or anything else.  And then try to meet up with with the supplies Nurse/Nutritionist and get all his supplies to start feeds tonight.  

All the stuff that goes with this one kid for one not fun day to Seattle (for dr appts) left the house at 6 am and won't be home until dinner (or later)

Tacoma Narrows foggy ... I thought it was petty....  

This is the request we kept getting all the way to Seattle .... seriously????  Someone had Skylanders on the brain....

This is how he feels about G-tube training ...

The start of VPI Clinic ...

Nathan and Poindexter....his wolf.  Nana got suckered..

Done with appointments. Got supplies. Headed home

So ... We had his g-tube this morning, was a lot easier than I was anticipating. We got all his equipment before we left the hospital today - Daddy is getting a crash course tonight. He's doing his first feed tonight.

The other appointments were ... odd. Bad news on bad news I guess.

So ... they did a scoping where you can clearly see that Nathan's palate does not completely close. (causes speech issues, on top of other speech issues he has, with liquid and food - spaghetti noodles baby! - sometimes coming out of his nose)

Oh and remember when Kaedyn threw that 2 lt bottle of soda at Nathan and hit him in the face - yeah well his nose did get broken - his septum is all the way to the right side, so they couldn't put the scope up the right side of his nose.  Why is it that none of my kids had major issues (other than Noah's medical stuff and Cal's Leukemia scare) ... until Kaedyn comes along?  Then all of a sudden I have to call Poison Control twice (both times on Kaedyn), Cal gets a broken arm, Noah gets a broken nose (falling down stairs), Nathan gets a broken nose (courtesy of Kaedyn) ... ::sigh::

Anyway .... so it's clear that he has issues still with his palate.  It is moving minimally, however it does NOT close all the way (which means it's not long enough) and he DOES NEED SURGERY to correct this.  However, Dr. P does not want to do surgery at this point in time, even though he needs it. He wants to revisit it in a year. Why? Because he's scared it will kill him - not kidding, those are the words that came out of his mouth.

He says Nathan's airway is so small he's concerned it'll cause more damage. He's also concerned that the HGH will make his lingual tonsils larger and decreasing his airway more. He is hoping that the G-tube feedings and the HGH will help his growth and he'll be able to have the surgery in a year, so he wants to re visit the thought of surgery in a year (next April so a little less than a year) ... otherwise we may have to discuss options for his airway.  What the heck does that mean?  And I didn't ask....

Also his left tube is still blocked but we're not going to worry about it right now unless it gets infected and smelly again .... so yeah. Scary biznitz ...

We went ahead and started his feeds tonight.  I managed to get his pole set up by where he had his bed set up (not an easy thing) ...  started him out on one box of feed (geez, is he a chicken?) and at only 20ml per hour.

His ..... thought process ..... on this....   "I'm not hungry" ....

But he did good :)  

I'm getting crafty! And some updates!

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A couple days ago, Nathan was NOT feeling well.....  

We piled blankets and comforters and sleeping bags and everything we could find on the side of the bed and then put his little couch thing that turns into a bed on top of that (because that's what he always sleeps on) ...  and this way we can keep an eye on him.  He still has pain and obviously he still isn't feeling well off and on ...  

And seriously .... these two kill me.  They are SO CLOSE......  It kills me how cute they are and how they might not have been born together, but they are my twins...

 Today Nathan got fitted for his new Sure Steps!   Noah got his brace (AFO) adjusted to his new shoes too!

No more pink!  His favorite color went from pink, to blue, and now it's red....  and of course DINOSAURS is the only way to go...  

Then we had to head to Tacoma to Mary Bridge for our follow ups with Neurology and Endocrinology ...

His Neuro appointment went well.  Everything is going well with managing his migraines right now and he hasn't had any new seizure activity (and since he's been in our room the past bit this is good so we can keep an eye on that too) ...     Nathan was having fun making the wheel spin with his feet.

Dear Mary Bridge, When your book shelf is empty .... my child thinks he needs to be a book.....   plus, it's sad.  It's very sad.   Please fill it with some books.   Thank you.

His Endo appt went okay too.   Hasn't been on HGH for MONTHS now because of insurance switch and then pharmacy switch and then insurance not covering the meds he was on switch ...... any other kind of switch we'd like to put out there?   So we think it is all figured out and should FINALLY start up again ... soon....

 So I ordered pads, and they aren't going to get here for awhile.  BOO........  A friend of the family made some flannel pads...... They turned out AWESOME ........

But they don't absorb well.   :(   BOO!    So I had some old cloth diapers I used as burp rags with the kids.   So I cut some circles out of that.

First pad I made.  I hand sew - I don't have a sewing machine ... so ...   This was done quickly, not perfectly ....  I just wanted to see how one would do, absorb and all that....  

And I made a little "clothes line" for drying after I hand wash them!  Ha ...