Vaccines... Part 1 of many

I haven't forgotten you or the many topics I want to chat about.

We have been so busy with end of the school year activities... and school isn't even over yet! 

I want to share our vaccine journey with you...

Our almost 6 year old didn't get the Hep B vaccine in the hospital and I decline that one in general.  She also started her vaccines at 4 months of age, instead of 2, per the AAP schedule, and she received 1 at a time.  This meant that we moved slowly.

Here's the thing-- I believe in vaccines and all they stand for. I believe they have (mostly) eradicated dangerous, awful diseases from this country.  I am well aware that many people died from vaccine-preventable diseases (VPD) before vaccines were available.

I also know that the vaccine schedule, when I was born in 1975, meant that I received 8 or 10 vaccines by the time I went to Kindergarten.

Now?  If you follow the schedule, your child would receive something like 38 or 42 vaccines.

That's a lot.  Incidentally-- and this is just my own non-scientific observation-- there were NO children with autism in my elementary school.  The quirky kid in the corner?  Maybe there was 1 of him and I know him as a 36 year old and he outgrew his quirkiness.  My point?  The very few who were a little different likely weren't struggling with a developmental delay but instead that was just them-- maybe he was shy, maybe he was awkward.  Who knows.

But now?  Things are different.

The MMR vax was combined in 1992.  Shortly thereafter, the number of children being diagnosed with Autism or Spectrum disorders exploded.  Coincidence? 

Now, granted where there's smoke there isn't always fire but the smoke means there's at least something WORTH looking into.

How come our goverment doesn't seem interested in doing that?  Our country has astronomical numbers of children needing special services now.  What is going to happen when they reach college age?  and beyond?  What will happen when their parents are no longer here to take care of them?  Why isn't the government at least concerned about the massive drain on government funding available for these children that grow up to be adults that still require massive amounts of service?

Because the government sure isn't helping the average family to provide the therapy their children need to recover/reach their potential/get better.

At least, to this average family it isn't.  We have spent well over 50K out of pocket on Kate's various therapies and things associated with her delays and medical needs.  That is more than some people make in a YEAR.  and oh yes, that is cash.  Out of pocket.

We have finally reached a place where the drain is less, but not every family is in our position.  What do families do that can't afford to pay this?  Do their children not get the help they need? 

Anyway.. I digress.  Why do we have to give so many vaccines to little babies?

Why CAN'T we spread them out?  Why is the AAP so strict about their schedule?

Kate wasn't crawling or walking at 11 months, her eye contact wasn't great and she was beginning to miss some of her milestones.  It was at that point that our pediatrician suggested we HALT all vaccines until she was on target with her milestones. 

Food for thought huh?

Back later.. for Part 2.

Potty Training

There's been a lot of talk around our house about potty training lately.  You see, we are gearing up to Potty Train Emily, who will be 3 in September.  This is slightly earlier than we PT'ed Kate, but Emily will need to be PT'ed to go to pre-school in September.

Have you heard about the 3-day method?  There's an e-book available online and that is the method we followed for Kate.  The author of the method (a Mom of 5 or 6 children) suggests that 22 months is the ideal age to PT.  Really?  22 months?  I have to admit that I am a little bit skeptical of that. 

Kate was in no way ready at 22 months.  Even at almost 3 (just shy of a few weeks), she expressed absolutely zero interest in going on the potty.  None.  But within a day or so, she had the pee thing down.  #2 took a couple of extra days but she got it.  She never fought me.  There was no power struggle.  Kate was definitely more socially immature than her peers at that point, so I do wonder if that played a part.  I have friends who waited until 3 or beyond.... and my own non-scientific observation is that for the most part, waiting beyond 3 does lead to power struggles.

But on the flip side, I also think pushing the issue...i.e. at 22 months... isn't helpful either.  My own personal experience is that the child needs to be able to effectively communicate that they've got to go. I don't know about you, but we are a busy family.  It would be awful to have children having accidents every time we were out somewhere.  I've preferred to wait, as long as possible, to do the PT'ing-- but well within the window of normal of PT'ing-- when the child can effectively communicate to me that she has to go, before she grew out of the size 6 diaper, but before going on the potty becomes a power struggle.

Again, my own unscientific observation of PT'ing before age 2?  There are regressions.  And difficulty "getting it." 

With all of that said, we will be PT'ing Emily in early July.  2 months before she turns 3.  She's got a great vocabulary.   She is showing some potty awareness (she doesn't like having #2 in her diaper for instance) and she's definitely, definitely able to hold her pee.  She is clearly afraid though, of sitting on the toilet, so like Kate, we will bring out the little potty for a day or two before we move to the regular potty with a potty ring-- after all, restaurants, etc. do not have little pottys for the children to go on!

Now.. nighttime PT'ing?  A whole different animal... a topic for another day!

Today's positive thought: 

Today I will live in the moment.  Unless the moment is unpleasant, in which case I will eat a cookie... ~ Cathy Thorne

The Neurodevelopmental Pediatrician

People sometimes wonder how we ended up at not 1, but 2 neurodevelopmental pediatricians (ND peds for future reference).   Here in NJ, the waiting list is LOOOONG.  8-10 months is typical.  So it's customary to get one at least a few different waiting lists.  I had criteria-- as every Mom does-- the physician had to be board certified, etc.  That cut my list down.  I think we ended up on 3 waiting lists.

How did we reach the point where we were seeing the ND ped?  Kate's preschool speech therapist suggested we do so.  She and the special ed teacher (inclusion class) were seeing some behavoirs that were suggestive of an ADD-type of diagnosis.  Mostly during circle time and group activity.  She seemed to have trouble with following multi-step direction.  I mentioned this is also consistent behavoir with Auditory Processing Problems-- but both seemed very unfamiliar with that term.  The Child Study Team was in agreement that a "diagnosis" would be helpful in terms of securing future services for Kate, so off we went.

We saw Kathleen Fadden, MD's team at Morristown Memorial in NJ last June for the "parent consult."  While they never did get around to doing an evaluation on Kate, it was a good learning experience for me.  Without even seeing her, they agreed it didn't sound like she had anything that even remotely resembled ADD.  They also mentioned that when there is any kind of behavioral/learning problem, the first thing they ask about is sleep habits.  Fortunately Kate has been a good sleeper for the last few years.  We discussed things like learning to read-- The Your Baby Can Read Program-- and they absolutely agreed with me-- it is just memorization-- and pushing the brain to do things like that at a young age breeds learning disorders later.  A child can't learn to read, from a phonetic perspective, until the Proprioreceptive system is fully functioning.  A fully functioning Proprioreceptive system comes on board sometime between ages 4-7.   That means the left and right side of the brain are speaking to each other.

Last June, Kate's proprioreceptive system was not fully functioning and she was clearly struggling to read.  Sometime this winter, it got up and running and things seem to have "clicked" for her.  A simple test you can use to check if this system is running is- have the child close their eyes and try and hop on 1 leg.  Or, does the right arm swing forward as the left leg comes forward while the child is walking and vice versa?   The child will be able to do these things if the Proprioreceptive system is working at 100%.

Kate wasn't able to get an appointment with Dr. Fadden until after the start of the Kindergarten school year. This was less than ideal for many reasons but I was really reluctant to have to take her out of school for the appointment.  When we got a call from Barbie Zimmerman-Bier, MD's office at St. Peter's University Hospital in NJ saying their office had a cancellation (in August, before school started!!), we took it!

We spent 2 hours with Dr. Zimmerman-Bier.  She did many tests on Kate.  She absolutely agreed there was NO ADD going on.  Her official diagnosis was  Auditory Memory Deficit and Expressive/Receptive Language delay.   She wanted Kate tested for an Auditory Processing Disorder when she was 7 (the minimum age at which they will do the testing).

Where has this left us, you ask?  Well, we continue to follow up with the Audiologist (still can't get a complete hearing pass in her left ear).  We're having a baseline hearing exam done with the Audiology folks at CHOP (Children's Hospital of Philadelphia) on May 28th.  They will do the APD testing next summer.  We see the ND ped every 6 months so that she can light a fire under the school district (they are very motivated by physician letters, it seems).  We're doing everything we can to facilitate Kate's access to learning..

It hasn't been an easy road, but almost 6 years later, I feel as though we're getting somewhere!

Ages 3-6

I left off around Kate's 3rd birthday.   She's made huge strides since then, but it hasn't been without a lot of blood, sweat, and tears (on both of our parts).  Her little sister showed up when she was 3 years, 3 months and she's brought immeasureable joy to all of us.  Little sis (Emily) struggled with severe reflux and eczema and has a peanut allergy...  So in the midst of speech therapists and neurodevelopmental pediatricians, we also deal with the allergist and dermatologist for Emily.

If I could say one thing about our life-- I'd say that it isn't boring!!

But back to Kate--  as she's now 1 month away from her 6th (!!) birthday, it's clear that the tongue tie caused a cascade of things to happen.  She was much more so impacted than just a "mild speech impediment"-- remember, that is what 4 pediatricians told me.

She had great difficulty nursing, she missed several speech acquisition windows-- your tongue has to be able to move to make most sounds.  In addition, we also missed the key window before age 2 when children are more willing to try different foods.  By far, she is my picky eater and I can't say that is just her personality. 

She's had to make up almost 2 years worth of speech sounds.  She's come very far.  I'd say she's just about within the range of normal now.  There are children in her Kindergarten class that don't get speech therapy, but to my somewhat educated ear, should. 

Added to the tongue tie issue was the ear infection issue.  I lost count of how many bilateral ear infections she had before *I* insisted we put the tubes in.  Why didn't my pediatrician insist on that?  What about the 3 in 3 rule?  Meaning- 3 infections in 3 months = ENT consult for tubes.  That's what should have happened.

I feel proud of how far we've brought Kate.  Every special needs Mama knows that their children make the progress they do because there is a strong Mama bear standing behind their kiddo.  Some days I forget that.  Some days I prefer to dwell in negativity.  Other days I remember that she didn't even say Mama until she was 2 1/2. 

Here's my positive message of the day: 

Success is a journey, not a destination.  The doing is usually more important than the outcome.

~Arthur Ashe, Jr.

My key take home messages:

1) Tongue ties should be clipped during (early) infancy.  This is not one of those situations where taking a wait and see approach is a good thing.

2) Remember: 3 in 3 = ENT consult.

Let’s start at the beginning--  at the beginning, I mean way back to the summer of 2004.  We had been married for 2 years and decided that maybe we’d get a dog.  If we could take good care of a dog, we figured we might be ready for a baby.   

We got our puppy, a little black Scottish Terrier when he was 8 weeks old and weighed 3 lbs.  He was tiny and cute and the vet pronounced him to be in good health.  We knew the pup would need some vaccines, but this vet was only going to give him 1 at a time… because “if there were a reaction, we would not know which vaccine had caused it.”  This left me with a lot of food for thought.

So we vaccinated pup slowly.  He fortunately had no reactions and at one time or another, the vet would say things to me indicating that he thought giving vaccines one at a time was the safer way to do it—that loading up his little 3 lb body with all the other “stuff” that comes in vaccines was not a good idea. 

Fast forward a year later and I am pregnant.  I did a lot of research during my pregnancy.  I had all of the usual pregnant lady fears but some of them were amplified by the things I had been reading regarding vaccines, and the rise in autism and the other “As”—asthma, ADD, ADHD, allergies, etc.  I was determined to find a pediatrician who had a philosophy about vaccines that meshed with mine.

The first group I met with were very strict about the topic-  if you did not vaccine per the American Academy of Pediatrics schedule—you were out of their practice. 

Then I found the group we see now.  Or actually, my mother did.  She knew Dr. S’s nurse, Kathy, and it seemed like Dr. S and I would be a good fit—so she become our pediatrician.

We were going to vaccinate one at a time and not start before 6 months.  Kate would not get the Hep B vaccine in the hospital and we would take it slow. 

Kate was born on a Thursday in late June.  We were seen that very same day by the lactation nurse, a lovely woman named Peggy, who told me Kate had a tongue tie.  I think she may have even given me a business card for an ENT in a neighboring town who frequently snipped the infant’s tongue ties.  I do not believe we were given the option to have this done before we left the hospital.  We saw 2 pediatricians in the hospital, neither of which were affiliated with the group we’d be going to because our group didn’t have hospital privileges at the hospital I delivered at, and both of them gave me the impression that tongue ties were nothing to worry about.

We arrived home two days later, our little family of 3 (4)—including the dog.   Everything seemed to be going Ok, aside from the fact that the child wanted to eat every 45 minutes to an hour.  During Kate’s 5^th week of life, we went to the pediatrician 4 times.  All she did was cry.   In my desperation, I decided to try giving her a bottle of formula.  She was 5 weeks old and it took her almost 45 minutes to drink 1 oz.  This could not be normal.  I had heard of newborns drinking 2-3 oz.  I began to ask our pediatrician, as well as her partner, about the tongue tie—was it impacting her ability to drink enough while nursing?  Why was she such a lazy bottle drinker?  Both of them, on numerous occasions, told me the tongue tie was nothing to worry about.   That made a total of 4 pediatricians who told me to stop worrying.

Ok, so I did.  But Kate continued to need a bottle almost every hour for months.  At 6 months, we did start her on cereal and that went Ok.  At 8-9 months we really began to expand upon the types of food we were offering her and she didn’t seem interested.  We went to the pediatrician almost monthly and at each and every visit, I continued to question the tongue tie.  I always got the same answer:  Don’t worry!

Kate had her 1^st ear infection at 9 months.  She had a break and then she continued with chronic, bilateral ear infections all the way up until she was 22 months when she had surgery to put the ear tubes in.  She continued to want a bottle almost hourly while she was awake and she continued not to be interested in table food.  My pediatrician told me that some babies just prefer baby food.

By 11 months, she wasn’t crawling (I never crawled but according to my Mom, I walked by 10 months).  Dr. S. felt that she was becoming significantly delayed in some of her skills and we made a joint decision to halt all further vaccines, until Kate was sufficiently caught up with her peers.  Little did I know that we’d be halting everything until she was 5 years old.

Her 1 year birthday came and went.  At 15 months, she had no words and I was beginning to worry.  My gut was speaking to me but I knew it was still early so didn’t press the issue.  At 18 months, she did have words but I wasn’t sure they were meaningful (i.e. she meant what she was saying) and they were all similar sounding:  dada, baba, doda, etc.).  Her pediatrician was again not concerned with her eating habits—still not eating table food, still wanting many bottles per day and also felt it was too early to get concerned with her language skills.

I, however, was not convinced.  For one thing—yes, Kate WAS gaining weight but that’s because my mom and I were obsessive about making sure she was getting proper nutrition in the form of a bottle every 1.5-2 hours.  At 18 months old, she could only drink 4 oz in 1 setting.  I had stopped nursing her at 8 weeks and we switched to formula out of desperation—hoping that it would help her not to need a bottle every hour.

I also felt that her eye contact wasn’t great, she continued having ear infections, and I was worried about her hearing from the repeated infections.

So I called Early Intervention myself.  We live in New Jersey and I have to say, they are fabulous here.  They were in my home within 2 weeks of my initial call to them.  I believe they sent a physical therapist and a speech therapist to the evaluation.  They observed her attempt to eat food and immediately knew they had to have an Eating Therapist come out as well.

Kate qualified for 2 hours per week of services—1 hour for speech, and1 hour for eating therapy.  Calling Early Intervention was the BEST thing I ever did.

The Eating therapist came within 2 weeks of the initial evaluation and her declaration stunned us all.  Kate had the WORST tongue tie she had seen in 15 years of practice and she suggested it be clipped.  Immediately.  She also had a very tight frenulum, that was attaching to the gum line just above her teeth and she felt that needed to be cut as well.   The decision was made to see a pediatric ENT, get these 2 procedures done and put a set of tubes in her ears as well.  In the meantime, she began her therapy.  Because eating any type of solid food meant that Kate choked—you need to be able to move your tongue to move food onto the molars to chew—she was extremely orally defensive.  We weren’t able to brush her teeth, she refused to drink from anything but a bottle—no sippy, no straw cup, nothing.  The eating therapist had her work cut out for her.

Now, remember what I said earlier?  At 18 months, Kate could only drink 4 oz of milk from the bottle at 1 setting.  The day of the surgery--  she drank 10 oz afterwards.  10 oz!!!  She also ate 3 strawberries that day.  This was a child who had never had any table food to eat before other than small bites that she’d immediately choke on and then spit out.  This was progress.

Later on the day of the surgery, I was watching Days of our Lives on the TV.  This was a show Kate had seen numerous times, yet on that day, she turned and looked at the TV as though she were hearing it for the first time.  The ENT said he had removed so much gluey, sticky fluid from her ears, it was incredible.  We had made the right decision to put the tubes in.  Her body wasn’t draining that fluid and it would just sit there and breed ear infections.

Now her tongue was free, her ears were unclogged.  We naturally hoped and expected that she would start coming out with words.  She was 22 months old at this point and I kept waiting for that language explosion.

I waited.

And waited.

And waited some more.  It never came.   By the time of her 2^nd birthday, we had been able to orally de-sensitize her enough to get her to use a straw cup and brush her teeth.  She was beginning to accept more and more foods into her mouth, so we moved over to 2 hours of speech therapy per week.  At age 2, she had no words.  Not even Mama. 

My heart broke on a daily basis.  Over and over.   My days were measured by one thing and one thing alone—how Kate did during her speech sessions.  If she had a good session and was cooperative?  My day was great.   Did she tantrum?  Did she not want to participate?  Did I feel as though for every step forward we took 2 backwards?  You can guess how I felt on those days.

We ate, lived and breathed speech therapy.  We never gave up.  Some days I didn’t want to keep it up.  Speech therapy is funny in you can’t ever take a break.  Not if you’ve got a long ways to go and you want your kid to get there.  We only had 1 child at this time, so fortunately could fully devote ourselves to her therapy. 

We still weren’t vaccinating.  Well beyond the age of 2, we had reached a point where Kate should have not only had words but she should have been speaking in sentences.  She wasn’t.  Just beyond her 2.5 year old birthday, she said the word Mama and it was heaven to hear!   But there was clearly no doubt she was significantly delayed at that point.

You’re probably wondering what happened as she got closer to her 3^rd birthday and the age at which she would need to age out of the Early Intervention System. 

Believe it or not,,she made huge strides between ages 2.5 and 3.  Huge enough that she was able to graduate a week or two early from the program due to her huge strides.  I was feeling good, she was feeling good, and we were confident that she was on the right track.

Around this time we began a relationship with a very special speech therapist, Sheryl, who was working in one of the premier Children’s Hospitals in the area.   I would take Kate to Sheryl every year for a private evaluation.  This relationship eventually became the lucky card in my back pocket.

Sheryl agreed with the Early Intervention Speech Therapist’s findings.  Kate had made major progress, she was still delayed but minimally so and Sheryl felt we could take a watch and wait approach for the next 6 months.  Keep her out of speech- let her enroll in a preschool program—see if the interaction with other children who have strong language skills would benefit Kate.  This was our plan.  I was very upfront with her preschool teachers as to what her issues were.  I asked them to keep me apprised of any problems.  I frequently questioned them at drop off and pick up as to how Kate was doing.  None of them ever expressed any type of concern or led me to believe she was struggling in anyway.

I arrived at the conference in March.  March.  6 months after the school year began to learn that Kate had never, ever said a word in the classroom.  She had 1 special friend, who she frequently played with and that was it.  I was furious.

I immediately called for the district to evaluate her and got her an appointment with Sheryl.  Her language delay, both receptive and expressive, had grown from 3 months to nearly a YEAR.  She had a year’s gap between her chronological age and her ability. 

To be continued...

Things I like to talk about

Severe tongue tie.  RSV.  Asthma.  Speech delays.  Speech therapy.  Language Processing Problems.  Auditory Processing Disorders.  Special Needs Children.  Inclusion classrooms. 

Private evaluations.  IEPs.  Delaying Vaccines. Sleep. Reflux.  Eczema.  Peanut allergy.  Our awesome pediatric allergist. 

Hello and Welcome!

I started this blog because I've been down a road many Moms have walked before me.  I've got a lot to say.  I've got friends who don't necessarily want to hear what I have to say.  But in almost 6 years of motherhood-- through ear infections, speech delays, early intervention, alternative vaccine schedules, tongue ties, hearing evaluations, speech therapy, eczema, asthma, and reflux... well, I've learned a lot.

Don't even get me started on sleeping.   We'll get to that in another post.

My hope is that this will be a place where I can freely discuss the things I want to chat about--  I realize I'm a little out there in terms of my parenting and beliefs.  I don't do any vaccines at birth or through the first 6 months of life.  I'm open to alternative therapies for my speech delayed daughter.  But, we have also gone the traditional route in some respects because she is on daily medication to control her asthma.  Additionally, I've long since reached the point where I do not care where anyone sleeps in my house, as long as they sleep.

As a Mom, my only hope is that my girls grow up to be healthy, happy and eventually... self-sufficient. Like most Moms I know, I'm doing the best job I know how. I also operate mostly from instinct and have made my parenting choices based on what feels "right" to me.

So, thanks for stopping by.  I would love to hear what kind of little bit crunchy or non-traditional ways you parent.  How have your friends reacted to this?  Have you lost friends over it? (I have). 

I leave you with my mantra...  Keep calm and carry on!