Wednesday is a big day for everyone

So tomorrow involves alot for most of the members of our house.  Earlier this week Les finally received a call from the nurse coordinator at Accredo to set up an appointment for his first subcutaneous infusion.  The only day this week they could offer him was Wednesday.  It just so happens that Macey will be going to Egleston to the outpatient infusion clinic to receive her first dose of Hizentra (the subq medicine that will be replacing Vivaglobin). So almost at the exact same time they will be infusing together.

Les's nurse will come here to the house and educated him on how to draw up his medicine, prime the pump and stick himself.  Then start the infusion, deaccess the needles and finish up.  His immunologist has ordered Benadryl and Tylenol by mouth if he needs it but he should do just fine.  Before I leave with Macey I will show him how to put on his Emla and that will help.

Macey will take her medicine and her supplies to the clinic in Atlanta and although she has self infused by subq for over 4 years now she has to be observed at clinic when switching brands.  So her appointment is more about being babysat than being educated.

After her infusion we will go to lunch and then return for an appointment with her immunologist.  I hope to be able to go over some results from genetic testing done and we have a new symptom of dizzyness/rapid heartbeat to talk about.  I was hoping the fast heart rate would resolve but even though it does go down at times it does always go back up.   It should be a good visit and I will update as soon as we're done.

Please pray that Les will have a good first infusion and no reactions (site or body wise) and that Macey will also tolerate the new product well and have a productive clinic appointment.

Another subque'r in the house

So after a quick sinus CT this morning my husband met with an immunologist who had started lab work last month to recheck his response and levels.  She looked at the digital copy of the CT and said that other than some inflammation in the ethmoids he overall looked good (no maxillary problems). Then she went over the lab work that had been sent to Quest a month ago when he got his Prevnar shot and the lab work that was drawn last week to see if he responded.

His initial levels were 

IgG 975

IgA 263

IgM 17

The IgA number was a God send.  I was so glad to see that whatever problems he might have we wouldn't be fighting this monster too.  His IgM has always been low but this is the lowest yet.  (the IgG number I'll address later).

Then she started out by saying that he had absolutely no response to the Prevnar. NADA. ZIP. When he had these done in 2002 he at least responded to 2 or 3 of them.  Now nothing.  So she said he was not going to get anything for the IgM from infusions but she did think he would benefit from the antibody perspective.  Unfortunately that great IgG number meant nothing because it lacked any "brains". Also it will make it difficult to follow whether or not his dosage is therapeutic because we can't watch a number rise. He will be followed clinically and we will see if his symptoms improve.  She will run levels anyway in a month but will wait 3 months to see him again in the office.

On the Quest results there is a disclaimer paragraph that addresses what is considered a responder:

"Evaluation of the response to pneumococcal vaccination is best accomplished by comparing pre-vaccination and post-vaccination antibody levels.  A 2-to-4 fold increase in type specific antibodies measured 4-6 weeks after vaccination is expected in immunocompetent adults.  The number of serotypes for which a 2-to-4 fold increase is observed varies greatly among individuals; a consensus panel has suggested that individuals older than 5 years old should respond to at least approximately 70% of pneumococcal serotypes.  Adults >65 years old my exhibit a smaller (<2-fold) increase in type-specific antibody levels."

The reason I mention this is we were talking earlier this week about how many should respond to warrant medicine.  This opinion just happened to be on our paperwork today.

Also he had CD3, CD4, CD8 and CD19 levels done but I'm awful at interpreting these.  She didn't seem too concerned at the numbers. Sometime tomorrow I'll compare them to Macey's to see where he falls.

So they will submit the Hizentra prescription tomorrow and heaven only knows how much he's looking at infusing each week.

New glasses

New glaases today.



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School IEP and 504 Health Care Plans - our take

The first thing you want to do is schedule a student support meeting.  This will include all teachers, the guidance counselor, the assistant principal (aka instructional coordinator) and the school nurse.  Not the school med tech but the nurse.  Some schools share nurses but you want the nurse.  She/He will be instrumental in evaluating whether you need an IEP under Other Health Impaired or if a 504 plan will cover the accommodations.  You will also want to start making copies of all of the doctors notes that you turn in.  It's amazing how something like that can go missing at the school and you have no recourse.  In some years I've been known to back track and supply 5 or 6 excuses they said "never made it there".

At the meeting you need to make it very clear that while not being confrontational about it you feel your child's needs are not being met.

Explain what you need to each teacher and each subject.  Some classes will need different accomodations than others.  Our daughter had different needs for her advanced spanish class than for her english class (one could provide work for home the other truly had to be done before school when she returned because I couldn't tutor her in Spanish).

There should be someone provided by the school at this meeting to take minutes.  At the end of the meeting make sure a follow up date is documented.  It should be somewhere between 14-30 days.  I know that sounds like a long time but setting this in motion will not happen overnight.  Just like the PID diagnosis didn't happen overnight.  What you are doing though is setting in motion a plan that will follow through high school when it most matters.  

These plans are something that parents should set up right away once a PID is diagnosed.  It is only a matter of time with this disease when your child will need it.  Don't wait until the illness takes them out of school and you're already stressed with hospital stays and doctor visits to try and haggle out this plan too.

The school will try to tell you your child is not sick enough or "delayed" enough for this plan.  This isn't true.  A physicians update is all that is needed to document the need for accommodations.   

These plans are not just good for the sick times but also good for at school times in order to cut down on sickness.  We've talked before about the accommodations of having HEPA filters in the classroom for lung/asthma patients (easier to do in the early grades when they don't change classrooms, Middle/High school virtually impossible).  Also being made aware of not only contagious illness in their own classroom but grade level (any type of contact).  Each day in elementary school Macey's class got to "play" in shaving cream on their desk (because it cleaned and sanitized the desk for the teacher automatically).  But it was a written accommodation.  

Older students can cut down on fatigue by not carrying large textbooks back and forth to school each day.  Have it written that two sets will be assigned each year (one set for home and one set for school).  Their books can be kept in each classroom so they don't even have to be toted from the locker.  

Accommodations for the allowed amount of time to make up work.  The time needs to start after they have met with the teacher and reviewed what they missed.  

Bathroom trips, water access, breaks on the playground (Macey's school did not permit younger students on the playground to sit on the benches, they were required to "play" their entire recess.  Impossible for her), somewhere to go in the office if symptoms are present but might be fought off and the child can stay at school (better for middle/high schoolers).  Macey has salvaged many a day in high school by going to the office for 20 or so minutes and resting.

You basically have to make them understand that this is expected to be a lifelong medical illness that will need to be accommodated to make him a productive citizen when he is an adult.  It does fall under ADA and is recognized as a medical disability.

But setting it all up will take time and a great deal of patience.

Pulmonologist/Sleep disorder visit

Macy's visit to the pulmonologist went well. He reordered her Ritalin dose and also gave us an additional daily dose for 5 mg in the afternoon when her sleepiness is at its worst.

Sleep doctor visit / Auburn

Tomorrow we have to go to Columbus to take Macey to the pulmonologist to follow up on her sleep disorder then we're going to go over to Auburn with Katie and her friend to see the campus. It should be a fun day temperatures will be in the 70s and everyone should enjoy the trip. I wish Macey had more energy.

Winter progresses on

Counting down the days of winter until Spring hits.  Just after Spring hits then it's spring break and a well deserved trip to the beach.  Things have been good here.  A new daily dose of Alleve has helped with the larger joint pains and each little head cold that has started was stopped short and didn't turn into a roaring sinus infection.

Some days are better than others when it comes to the GI stuff.  It usually is easier on the weekend than during the week because of the extra rest and calmer pace but lately even on the weekends there have been extra trips to the bathroom and pain.  Steroids are still at an increased dose and I don't think we're going to be able to come down on them anytime soon.  I'm going to ask at the next appointment in Atlanta if we can try another burst dose of IV steroids.

Spring musical tryouts are next week and with a good song in hand there will hopefully be a positive outcome.