Hair from The Dog That Bit Her: A Love Story

      

      I am sure if Nadiya's Allergist read this article he would want to shake me.  That is probably why I haven't told him that we got a dog yet.  Sometimes as a parent you have to weigh the risk of something with the benefit.  David and I do that a lot with Nadiya.  Her case is not black and white but every shade in between. I think also you have to look at a situation and realize that there are always exceptions to the norm.  Many doctors have a difficult time accepting that maybe rules don't always apply in every single situation.  At least that is what I think.
        Nadiya tested positive for dog allergies.  I did too for that matter though I have never experienced a symptom from a dog.  Nadiya did.  Anytime she was near my sister's over sized Basset Hound her face swelled up in hives.  It was pretty bad.  There were other breeds that caused an outbreak of hives wherever the dog's tongue touched her.  There would be a strip of pink swollen bumps on her arm or the side of her face where the dog had licked her.  She seemed to also get itchy.  Her eyes would get very red and she would keep rubbing her nose.  The interesting part is that this only happened with certain breeds.  That is where the Allergist had a problem with our story.  I will say he did believe me and he tried to understand how this could be though he firmly believed extended exposure would prove positive allergy symptoms with any breed.  I hoped not because I always knew I was going to do it anyway.
  

Clara

          I spent years conducting my own clinical trials while nervous dog owners allowed Fido to lick all over Nadiya.  Armed with Benadryl we'd anxiously wait to see if there was an outbreak of hives.  Sometimes it did cause a reaction but sometimes it didn't.  Basset Hounds seemed to be the worst of all with Beagles and Dachshund Hounds causing a much less reaction.  There was also a mild reaction to Labrador Retrievers and Golden Retrievers.  However, there were many breeds that induced no reaction at all such as German Shepherds, Pugs, Several Terriers, Boxers and a variety of mixed breeds. This was interesting though to an allergists it may not make sense.  Our allergist said that it is not the breed that one is allergic to but the dog itself and if Nadiya lived with any of the "safe" breeds she was likely to have symptoms.
           I was not convinced.  I had high hopes of Nadiya having a Therapy Dog someday to detect and alert us if Nadiya had a seizure in her sleep.  I explained this to the Allergist and he understood.  He suggested that we wait and see what happens and should Nadiya need desensitization shots then we would deal with that then.  It made sense.  He wasn't saying, "Don't ever get a dog ".  It was more like, "If you must get a dog we will deal with any allergies if they occur".  At least that is the way I chose to interpret this. 
 

Anastasiya with Clara in Nadiya's room

    I checked out many of the websites for assistant dogs and the outlook wasn't good.  Most would not give a service dog to a person under 16 years of age.  That would be too late since Nadiya has the potential to become unstable during puberty.  That is when we could see a lot of seizure activity.  One site was willing to give a service dog to a child but the cost was $30,000.  Now they would not necessarily charge a family for the dog but the wait would be long and there were no guarantees.  To expedite the wait a family could fund raise.  I can't imagine taking that on.  managing Nadiya 's case is a full time job that I must balance with the rest of my family obligations; I do have another typical child.  This seemed very unrealistic for us.  Most of the dogs were Golden Retrievers which Nadiya has had a reaction to.
            This was just research. Truthfully I was not eager to have a dog.  I could not handle the responsibility and I felt Anastasiya was too immature to help.  I did not want to be the one to care for the dog alone so we waited.  I needed to be ready.  I saw Anastasiya mature and take responsibility for her turtle and her activities and schoolwork.  I felt like our children were missing out on an opportunity that I had growing up.  I wanted them to know what it was like to have a dog but I wanted the right dog for our family.  I needed an intelligent and obedient dog who would improve our family life not strain it. This would have to be a careful and thoughtful decision.  Not every dog is good with a profoundly disabled child.  My friend Lisa recommended the Mid Atlantic German Shepherd Rescue (MAGSR) http://www.magsr.org/ which was where she had rescued her German Shepherd almost 15 years ago.  He had recently passed away and she was ready to start looking for another rescue herself.  The timing was good for both of us.

Anastasiya works with Clara.

        I started to think about how smart German Shepherds are and how trainable they are.  Nadiya had spent hours at a time on the floor with Lisa's Shepherd even when he was shedding.  There had never been a reaction. 
            I have always been partial to mixed breeds.  I think they are unique and have the potential of inheriting positive traits from what ever they are mixed with. Whenever the genetics are watered down so to speak genetic disorders that purebreds can have tend to be bred out in a mutt. I had hoped with a smaller mix the hip dysplasia that German Shepherds tend to get would be less likely to occur.  I also think mixes are really cute because of their unique and sometimes random appearances. 
           From the beginning Clara stood out to us.  David and Anastasiya especially liked her and seemed drawn to her.  We completed our application and turned it in.  The next day we went to a Petsmart where we knew MAGSR was scheduled to be.  We hoped Clara or some of the other dogs would be there.  No dogs were there but we were able to speak to two women who were volunteers from the organization.  When one of woman took one look at Nadiya in her wheelchair and said out loud, "Clara would be perfect for this family!"  I told her that we had put Clara's name on our application which was submitted the evening before.  It was then that we were told that Clara's foster thought she would make a great service or companion dog.  I couldn't believe it.  From a picture alone we were drawn to this dog and then we were told there was potential for her as a service dog.  We were excited but there were many people interested in Clara.  She had attended a lot of events and people liked her.  The ladies said they would contact the foster and the adoption coordinator and discuss our family and let them know about Nadiya.  Still it was out of our hands.  Our three references were interviewed and then we had a home study.  After that we were approved for adoption and Clara was brought to meet us.  She never left our house.  We loved her immediately and she bonded with Nadiya right away.
     

         We have had Clara for almost 5 weeks and I still can't believe we found each other.  At 10 months old she is very smart and already has many commands.  She is completely housebroken and is great with the kids.  She is protective of Nadiya and checks on her frequently.  Even now as I work in my office upstairs Nadiya is playing with a musical toy in her Rifton Chair.  Clara is sitting downstairs near Nadiya. I offered to let her come up with me but she did not want to leave Nadiya.  At first she was obsessed with Nadiya's breath because it smells of Ketosis.  Dogs can smell that and so they are trained to alert a diabetic if they reach Keto Acidosis.  It took some time for Clara to realize that is normal for Nadiya but it did highlight the potential for Clara to be an assistance dog.  A few weeks ago Nadiya had an unusual Absence Seizure that wasn't like the rest.  Clara barked at Nadiya and looked at David.  This is exciting.  We will put her through train classes and then look for someone who can help us train her to bark when Nadiya has a seizure in her sleep.  The possibilities are exciting.  Clara was definitely supposed to be a part of our family.  We had Clara assessed by a trainer and she will be skipping level o ne and going right into intermediate.  Then she will do the advanced class and end with the "Good Citizen" class for a certificate.  That will be the last step before service dog training.  She has learned many additional commands and walks nicely along Nadiya's wheelchair.  Clara goes to and from the bus with Nadiya and is excited to see her after school when she returns. 

Clara watching over Nadiya

 

      Strangely Nadiya has not had any allergy symptoms from this dog.  Clara has licked her face up and down.  One day Nadiya desperately needed a bath and Clara took it upon herself to start bathing Nadiya like a puppy.  Nadiya thought it was hysterical but other than her giggles there was no other reaction.  Though I was not happy about Nadiya sustaining a concussion at school, the fact that she was home for a week and a half when Clara first came to us was a blessing.  It allowed the two to bond right away and I think it helped Nadiya recover from her head injury and endure being kept out of school for so long.  It was a risk; albeit a well thought out risk.  I am glad that we did it because sometimes the very thing that could make a child sicker is the thing that makes them well.

Me with Clara and Lisa with her new dog Simone a German Shepherd Sight Hound mix.
Lisa is a former dog trainer and has given me a lot of advice and information.  Clara and
Simone met before they were adopted at an event for the rescue.  They were happy
to be reunited and chase each other at the dog park.

There are always some funny things that happen when you are training a dog.  I'm not sure who is providing more entertainment Cara or Nadiya!

 

 

 

 

 

 

Nadiya managed to get into Clara's crate without help.

 

 

 

 

 

I guess Nadiya thought she'd try out the dog bed.

 

 

 

 

 

We have since corrected this behavior but Nadiya seemed to like this.  Now Clara is permitted to wake Nadiya in the morning and put her to bed at night she can put her paws up on the side of her bed but not get in!

 

 

 

 

 

                                                                                   That's more like it!

It's All in the Bones: Update

     

     In my article It's All in the Bones I discussed the concerns with bone density and a disabled child.  I discussed the complications of the Ketogenic Diet, certain medications, and late weight bearing have on bone density.  Since my article was written Nadiya saw an Endocrinologist.  The news was encouraging.
               Doctors are concerned about middle aged woman who have low bone density and rightfully so.  A middle aged woman will go through menopause and her production of estrogen will decrease making the bone density problem worse eventually resulting in fractures if not treated.  A girl with low bone density will go through puberty where her estrogen will increase and she will rebuild bone.  In the meantime there are things that can be done to prevent fracture and further loss of bone density.
               A Dexascan alone is not an accurate test for a child.  If the child is small like Nadiya their bone age may be considered younger than her 9 chronological years.  If that is the case the Dexascan must be interpreted differently.  Doctors order blood work which helps to determine the bone age.  They also check the child's vitamin D level to make sure it is adequate.  They also do a bone age x-ray.  All of this information is then interpreted together to decide what the bone density is.  Nadiya was actually getting too much vitamin D so we cut that in half.  She will have the bone age x-ray and another Dexascan in the spring.  Additionally the doctor was very please with the weight bearing opportunities and the fact that Nadiya has never suffered a fracture even after her fall in the Kidwalk. 
               All of this is good news.  The key is adequate Calcium and Vitamin D supplements and sufficient weight bearing opportunities.  Children on the Ketogenic Diet long term should especially be aware of this.  If managed early the outlook is good.
             

A Heads Up on Head Injuries with A Disabled Child

    


Nadiya playing while in her Kidwalk

           A simple truth in life is that children fall and they are injured.  Of course this happens with some more than others but as parents we learn to manage this.  What about when a profoundly disabled child is injured?  That is a completely different situation that warrants discussion.  Specifically in this article I am discussing head injuries and concussion but the information can really translate into many types of injuries. 
              There were times where I felt a sense of relief and almost felt "normal" when someone from school would call and say Nadiya walked into a wall, desk, chair, door frame, or whatever while in her walker and bruised the side of her arm or her knee.  These minor injuries were indications that Nadiya was challenging herself and was making progress while obtaining harmless and typical injuries that children do.  I do not think there is anything wrong with that as long as they are common, reasonable injuries that are a result of kids being active.  It is concerning when a disabled child sustains and injury that is potentially dangerous and when it is a result of inadequate supervision or poor decision making on the part of the adult working with the child.

             Early in the school year Nadiya was playing in her Kidwalk at recess which in itself should not have been a problem.  In this case however the seat support had been removed from the Kidwalk.  Nadiya flipped the Kidwalk sideways and hit her head on the concrete.  Though her injuries appeared to be superficial at first, they worsened over a few hours as it became evident that she had suffered a concussion.

             Concussions happen but when it happens to a child who already has a great deal of neurological impairment it is difficult to assess and could potentially worsen their already impaired condition.  So what can you as parent's do?  In the case of a head injury there are several important pieces of information that must be gathered and assessed.  When your child is disabled and is unable to speak or affectively communicate what has happened, gathering facts can be difficult.   You must be your child's advocate and find out what has happened if you weren't there.  Below are some important questions you must ask the teacher, nurse, school staff, daycare provider, family member or friend who has reported the injury.

 How did your child fall?

    

Disabled children are more vulnerable
even during common activities while at 
           play.  Since the world does not often
accommodate we are rigging supports
and modifying all of the time.  Proceed
with care as to prevent unnecessary injury.
here I have a sweater stuffed in the front of the
 swing to tighten the space.  Still I pushed slowly
and carefully so Nadiya would not fall out.
 

If your child is mobile and they were running  and tripped and fell that information is different than if your child was walking with support and tripped and fell.  If your child was in a piece of Durable Medical Equipment (DME) you need to know if it was being used properly or if it failed.  If the equipment failed the accident must be reported to the vendor and the manufacturer of the DME.  In Nadiya's case it was not being used properly.  This was an important piece of information because if the walker had spontaneously flipped that would have been a major design flaw with the equipment.  The seat was removed to create therapeutic opportunities for Nadiya to improve her walking with limited support.  This was to be done with one on one supervision.  The problem in Nadiya's incident was that on a playground during recess was not an appropriate time or place for Nadiya to be doing this.  The ground was uneven and there were several children creating distractions for the staff.  Nadiya fell with the force of the Kidwalk sideways.  Where the cage of the Kidwalk somewhat protected her body there was nothing on the side to protect her head.
           You need to have these details so that you can reconstruct the accident for the doctors.  Did your child slam into another child while running?  Were they pushed by another child?  did they fall off of a slide or swing?  Did they fall out of a chair?  These facts are important.


Where did your child fall?

            The surface and density that the child fell on is important.  Falling into a wall will do a lot less damage than falling on a concrete floor.  Was the child indoors or out?  Did they fall on another child or pavement?  All of these things matter especially when assessing the injury.  Some surfaces are more forgiving than others.
          
From how high did they fall?

            There is a big difference between falling off a bench and falling off a slide especially when assessing a head injury.  If the child were sitting the fall would be from a lower distance than if they were standing or climbing something.  You will need to tell the doctor from what height your child fell.  Even falling from the height of standing can result in a concussion.   

Did they hit their head and if so on what?

            This is very important.  Nadiya hit her head on the concrete.  I had to ask this question specifically.  Not every person who reports an accident reports it accurately.  Sometimes the individual reporting the accident is upset and scattered so they do not give all of the facts.  Sometimes they are trying to protect themselves and do not want to appear irresponsible or negligent.  You are talking about your child's health and well being so you may need to be the advocate.  This question must be answered honestly and accurately. 

What did the nurse's evaluation and examination show if at school?

         If the injury occurred at school the nurse will assess your child. The nurse may provide an adequate assessment at that time. What you must understand is that the observations made then could drastically change over the next few hours.  If your child is disabled the assessment will be challenging to begin with. 

•  The nurse will ask the staff if the child lost consciousness.  To me that is a big deal.  I would take Nadiya to the ER immediately if she lost consciousness from a head injury.  She did not in this incident so the nurse reported no loss of consciousness.

• They will check to see that the child's pupils are equal and reactive.  This is, of course, if the child's baseline has the pupils equal and reactive typically. If not then this will not help with the assessment of the head injury. The nurse specifically asked me if Nadiya's pupils normally were.  They are.  The vision problems that Nadiya has do not affect her pupils.

•  The nurse will look for vomiting after the head injury.  That can be a sign of intracranial pressure.  Nadiya did not vomit.  

• They look for blood in the ears or pooling of blood behind the ears which can be a sign of intracranial hemorrhage.  Nadiya was ok.

These are the more severe signs of complications with a head injury and they warrant an ER visit for any child but especially for one who is already disabled.  Nadiya did not present with any of these signs.  Additionally there are some more subtle signs that the nurse will assess for.

• They look for excessive tiredness or lethargy.  Well you can tell if your child is over tired or lethargic even if they can't speak.  I think that is an easier one to look for. Nadiya was not showing this at school.  It wasn't until a few hours later that she presented with this.  

• They look for headache. In Nadiya's case her threshold for pain is very high and she is nonverbal so that is difficult to assess.  She did not appear to have a headache at school.  If she did she did not complain about it or show any signs that she had a headache.  

• They assess balance.  On a normal day Nadiya does not have very good balance to begin with.  That was very difficult to assess. 

• They look for sensitivity to light.  That is fine if they are having a visible reaction to the light.  A nonverbal child cannot say the light is giving them a headache or that it is too bright.  This did not seem to be a problem for Nadiya at school. 

• They assess the area of impact.  Nadiya's bump was visible but small while she was at school.

             In Nadiya's case the nurse checked on her twice and still did not see any changes in these symptoms.  Nadiya was acting like her normal self and so I was told it wasn't necessary to pick her up.  Nadiya came home on the bus.  So what I have learned from this is a head injury for a disabled child is intense no matter what.  Go pick them up and observe them for changes.  You know your child better than anyone and you know what their baseline is.

             Once Nadiya was home my friend and I started to see a difference in her presentation.  About 2 and a half hours had gone by since the fall and now she was having significant changes in her baseline.  The bump on Nadiya's head was large and swollen like an egg.  She was turning away from the light and closing her eyes.  She was becoming sleepy and lethargic.  Then she began to whine and fuss which Nadiya never does.  It was obvious she had pain.  When she walked her gait was worse than usual with a lot of stumbling and poor stability.  I believe she was dizzy. 
       

There is a reason Nadiya requires adapted seating. 
This is what happens in a typical chair!

         David and I took her to a concussion clinic but their first instinct was to send her to the ER at Johns Hopkins where her neurologist is located.  We explained that should the ER staff want to do a CT scan they would have to sedate Nadiya and then they would feel the need to admit her for observation since they sedated her.  We explained that we would do this if necessary but we wanted to make sure it is necessary and avoid such extreme measures if possible.  It was then that the team consulted and agreed that she did not have the more serious symptoms and so sleep and rest was the best thing to heal her concussion.
             Nadiya missed a week and a half of school and slept 12 or more hours a night.  Because Nadiya has a sleep disorder consistent with Lennox-Gastaut Syndrome she needs to be medicated at night with two different medications for sleep.  As a result I had to check her every three hours that first night to make sure she stirred.  After that we just let her sleep as much as she needed to checking on her before we went to bed. 


Nadiya at a roller skating party.  She was able
to use her Kidwalk out on the rink with
my supervision so she didn't run into anyone.
Nadiya had a wonderful time being included.

      If you find yourself in this situation you need the facts.  Speak to as many people involved in the accident as you can.  The nurse was not told that the seat was removed from the Kidwalk.  It wasn't until I spoke to the teacher that I learned that.  The teacher was not there during the incident but she was able to provide that information.  The principal was able to interview the adults who were outside and witnessed the incident.  She learned from someone that Nadiya was bouncing up and down in the Kidwalk.  Well of course she was.  That is what Nadiya does and she had to have created momentum to flip the equipment.  Sometimes the entire picture is not painted by one individual.  Instead many come together to create one scene.  Talking to several people will ensure you get all of the details.  Even then some may leave details out to protect their jobs.  This can happen anywhere. Most principals want to know what happened and they want to prevent the accident from occurring again.  Nadiya's principal was sympathetic to my concerns and eager to put preventative measures in place to avoid another situation like this with any student.
         You have the right to discuss with the school your concerns over who is taking care of your child if incidents occur that damage your trust and show a lack of good judgment. Nadiya's accident was a result of faulty communication and poor judgment. Every situation is different.  It is important to isolate the cause and find solutions that prevent the accident from happening again.  It could be a change in assignment of adults caring for your child.  Maybe it is just one person's reassignment.  It may not be necessary to remove your child from the team and place them in a different classroom.  Sometimes that is necessary.  Maybe it is a change in the way staff communicates about equipment and its appropriate uses.  Maybe it is special training that is put in place. 

Nadiya's Kidwalk provides
independence.  Here Nadiya
dances at a school dance.

         I appreciated that the school was concerned.  Staff members were concerned and they checked up on Nadiya several times while she was out of school. The principal understood my worry and concern over Nadiya's safety at school.  She was willing to address the incident and make appropriate positive changes to prevent it from happening again.  I needed to feel good about sending my child back to school.
         So what if you don't feel good about sending your child back to school?  What if they take no responsibility in the accident and are not willing to make changes to benefit your child's safety?  I think then it is important to take the incident to the higher ups.  Speak to the appropriate person at the board of education.  Speak to a supervisor of special education, a low incident specialist, or someone from the superintendent's office if necessary.  It should be in everyone's best interest to keep your child safe.  In extreme cases you may need to request that your child be transferred to another school where his or her needs will be met and they will be kept safe.  In the rare case where the school system is unwilling to correct the problem and if they were negligent in the accident you should speak to a lawyer.  Your child has the right to safety at school and you have a reasonable expectation that the school will make intelligent choices about your child's care.  Accidents happen but there should be an effort to prevent an accident from happening again.  I feel Nadiya's school learned from this accident and that they have taken steps to ensure it won't happen again.  That matters.

         I recommend following up several times with your pediatrician for the first month after the accident.  Children can have symptoms for up to 4 weeks.  After that their condition may be considered Post Concussive Syndrome and recovery could take much longer.  Nadiya continues to improve and we are hopeful that she will recover quickly and completely.  Let your child's neurologist know what has happened.  They see a lot of head injuries especially from their patients with Epilepsy.  They can guide you and decide if further testing is needed. Once a child has a concussion each consecutive concussion they acquire will be more intense.  Prevention of additional head injuries is very important.

Nadiya when she first got her Kidwalk

       As with any fall it is important to get back on that horse so to speak.  Nadiya's Kidwalk was cleared of any defect and all the lose bolts were tightened.  She is using it again at school with the appropriate supervision and support components including the seat.  Nadiya's PT will do most of the challenging under her expert eye and Nadiya will continue walking the halls in her Kidwalk.

       Our disabled children require a little more care when they are injured.  We are required to speak for them and aid in the assessment and treatment of injuries.  Hopefully this article will help you do that should your child suffer a head injury in the future.