The End-o!!!!

Thursday we took Kennan to see the pediatric endocrinologist. She told us that the two test that had come back slightly above normal were not at a level of concern. She is still waiting for a copy of the x-ray from the geneticist's office. But more or less ruled out the two syndromes that the Geneticist was still concerned about. She diagnosed Kennan with a disorder that causes his body to produce too much insulin. It is the opposite of being diabetic (although in the end he could become diabetic). Because his insulin levels are almost always raised it means he is constantly hungry. When he eats his body registers this and causes the pancreas to produce even greater levels of insulin. Thus a vicious cycle commences and the body gets far more food/nutrients than it needs or can use. So the end result is weight gain - usually quite a bit. These kids usually end up being obese at an early age. And it is nothing that is their fault or that can be completely controlled. Plus there is no cure.
She also told us that you usually don't find an exact cause - there are many different possible causes. These can include family history of diabetes, gestational diabetes, biological mother being over weight during pregnancy, diet/nutrition during pregnancy, high stress levels during pregnancy, lack of proper medical care/vitamins during pregnancy, exposure to alcohol, nicotine, cocaine (other drugs) during pregnancy, general life style, and plain old luck of the draw.  Since we have limited knowledge of family history there are several factor we can't get a good handle on. But there are also several that most likely added to his risk factors such as: high stress level during pregnancy, lack of prenatal care, diet/nutrition during pregnancy, and prenatal exposure to nicotine, alcohol, & cocaine.
The visit also means that an FASD diagnosis is very likely now. Since just about everything else has been eliminated. Which is both good and bad. Good because we know what we are dealing with (not that we didn't before) from a medical stand point and can seek appropriate helps/treatments. The bad is that there is no cure for an FASD. It's permanent. Also bad because it is 100% preventable.

Re-do!!

As of yesterday morning my Christmas Tree had nothing on it. And I mean nothing - not even lights. We thought we might even have to take it down. Holidays can be very trying for children with emotional and behavioral challenges. Multiple changes in schedule and a ramped up air of excitement/energy can make it very difficult for these kids to self regulate. It leads to more melt downs and tantrums. Both of which we have seen for Kennan. But after some thought we purchased a small quantity of shatter proof ornaments and some ribbon and will redecorate the tree today in hopefully a less stimulating way. Maybe it will help Kennan to better self regulate. He is trying so hard to be good - he loves the idea of Santa and wants him to visit. We as his family are praying for a miracle in the form of a 4 legged friend to help him. In the meantime we make changes and continue to search for other ways to help him also.

Medical Reports

Friday I spent the better part of an hour on the phone with the nurse at Kennan's Geneticist's office. The test all came back normal with the exception of two. He had an elevated level of phosphorous and an elevated level of another group of elements that they wanted to check out. So it rules out every thing they were testing for with the exception of two syndromes. And it elevates the likely hood of a full blown FAS diagnosis to the top of the list. We are being sent to see an Endocrinologist on the 22nd of Dec. for further evaluation. Even if they diagnose Kennan with one of these two other syndromes it doesn't rule out an FASD. However, if he test come back negative for both of the other syndromes he will be diagnosed with an FASD.

Why a Service Dog?

Many of you have ask us, 'why a service dog?" So I hope the following will answer those questions.
"Because of nicotine, alcohol, and cocaine exposure in utero, Kennan has the following diagnosis:
ADHD (attention deficit hyperactive disorder); ODD (oppositional defiant disorder); SPD (Sensory processing disorder); DBD (disruptive behavior disorder); Unspecified learning disorder; Probable FASD/ARND (fetal alcohol spectrum disorder/alcohol related neurodevelopmental disorder)
The biggest challenges we've faced so far are: acting out and disruptive behavior, name calling, and difficulty controlling angry outbursts. Kennan has a hard time concentrating and is very impulsive. He has a hard time learning from consequences. He struggles with frustration because of sensory misinterpretations (kind of like crossed wires). Certain types of textures, noises, and touches send him into meltdown.
We and his medical professionals believe a specially trained service dog will be a calming effect for Kennan in both public and home situations where he is over-stimulated. It can help him calm down at night so he can go and stay asleep, improve his attention span, improve social interactions with age matched peers, decrease aggression toward others and himself when he is over stimulated, and improve self-confidence and performance in school. The dog will be trained to be tethered and can track Kennan if he wanders. This wonderful dog will also be trained to disrupt inappropriate behaviors in Kennan and hopefully lessen or prevent meltdowns."
The Service Dog that will eventually be matched with Kennan will be trained to respond to specific cues that will be tied to pre or early indicators of a forth coming meltdown and to try and prevent those. And he will be Kennan's companion night and day. He will be trained to be in public with Kennan and can even go to school with Kennan if the need arises.
Some side benefits that have come from services dogs for FASD kids include: higher self esteem, less egocentric behavior, greater ability to recognise social cues, an easier time in social settings, and the Service Dog also seems to act as a deterrent to peers who want to influence the child to engage in activities they shouldn't.

Our Story

     When Kennan was first born he seemed healthy and “normal”. There was nothing that noticeably indicated that there were larger issues. Things that we noticed were not life or death and could be attributed to normal. He was born with a heart murmur and a herniated belly button. Both healed on their own. He was fussy and seemed much like a colicky baby. He did better with soy based formula and we assumed he just couldn’t yet tolerate the milk proteins in regular formula. He was hard to comfort, would arch his back when you tried to snuggle and he didn’t always like to cuddle. But, there are some kids who just aren’t as snugly as others.

 

As he grew into a toddler he became stubborn, uncooperative, and unwilling to entertain the word “no” if he was being restricted from doing something he wanted to do. People kept telling me this was normal “terrible twos” behavior. But it was different than anything I had experienced. My gut instinct told me something was “off” and “just not quite right” but I bowed to those with more experience and hoped they were right about him out growing all the little things that we were seeing. Then came his preschool years. He was having trouble with language acquisition and speech problems. People would tell me he was hard to understand –even I had a hard time always interpreting what he was trying to say and I am a full time stay at home mom and am with him on a regular basis. When we finally were able to get him evaluated by a speech pathologist she couldn’t find anything wrong. But the problems persisted and he was evaluated again in Kindergarten with the same result. His behaviors had also slowly begun to escalate and he was getting more non compliant regardless of what we tried. We ask about things like ADHD and ODD – but where told that most doctors will not evaluate for either of these until around six because many kids do grow out of these behaviors. Again I didn’t listen to my gut instinct (I’m a slow learner) and bowed to those with more“experience”.

          Kindergarten was difficult but he seemed to manage with help. Kennan had a hard time learning the Alphabet and an even harder time putting sounds with letters. However, he could “read” a number of sight words. Money and time were difficult (although this can be common in many kids). He had a hard time consistently remembering his basic shapes – but had his basic colors memorized. Days of the week meant nothing to him and forget months of the year. He couldn’t even tell you his birth date. His teacher and we were seriously talking about repeating Kindergarten. But with lots of help he pulled it together and rallied to meet the benchmarks necessary to advance to First Grade. His behaviors also increased. He was becoming angry and aggressive when frustrated and would hit, pinch, kick, and bite family members when he didn’t get his own way. He would also attack his brother without provocation. By first grade things had escalated even more. Both my husband and I had noticed that he didn’t always seem to “get it” or learn from consequences –both natural and disciplinary. School was becoming more of a battle. He was having trouble staying on task and completing work. Homework was nearly impossible because he would throw terrible temper tantrums when ask to do it. We were now beginning to understand that we had bigger issues than what he would just grow out of.

          In September of 2010 I came across an interview on ABC News about a couple who were parenting a child with FAS. As I listened to this mother describe some of the things they were dealing with, with this child it dawned on me that what she was describing sounded just like many of the things we had seen in Kennan. I “Googled” FAS/FASD and what I began reading that day left me a bit numb and shocked. It was like the authors of these sites had been living with us for the past six years. They were describing my child. But, I felt a little confused too. The paper work that Kennan’s birth mother had filled out for us stated that she had not participated in drugs or alcohol while she was pregnant with him. However, I had a vague unsettling flashback to a brief piece of conversation I had with Kennan’s birth mother a few hours after Kennan was born. But six years had passed and I just couldn’t be sure if what I was remembering was accurate since the conversation was just in passing and had happened so long ago. I called my husband at work and ask if he remembered if Kennan’s birth mother had ever mentioned drinking while she was pregnant. He said he wasn’t sure it was too long ago. I ask him if he had time that day to look up FAS/FASD and tell me what he thought. When he walked in the door that evening the first thing out of his mouth was,“that’s Kennan isn’t it?” All I could do was nod. We knew that we needed to have Kennan evaluated, but where to start?

 

               We took Kennan to our primary care pediatrician. She diagnosed him with ADHD – it would be the first of a growing list of disorders. This time however , I listened to my gut instinct. I knew from my reading that many alcohol exposed children are misdiagnosed with ADHD. So we kept pushing, slowly at first, and later more forcibly. We agreed to try him on Ritalin for three weeks. It made the aggressive, argumentative, and out of control behaviors worse – but only as the medicine was leaving his system. But it did nothing for the off task or lack of concentration behaviors. We then tried him on Adderall. This was worse than the Ritalin. He was explosive. During this time I had called our caseworker (at the time of Kennan’s adoption) and ask if he would please do some digging to see if we could find any documented proof that Kennan’s birth mother drank while she was pregnant. He agreed to see what he could find. About a week later he called us back and confirmed what we already suspected. Indeed Kennan’s birth mother had drank during pregnancy and she had also used cocaine. But, for Kennan the alcohol was the bigger issue. We do not have an amount, how often, or when during pregnancy she drank – just that she did.

       We were now into December and things came to ahead. When Kennan got out of school on the last day before Christmas break he went into a massive meltdown. It was on again, off again, meltdown for the next six hours. At nine o’clock that night I had him physically pinned to the floor in our living room to keep him from being able to physically attack me in any form. He was crying and I was crying. When I finally got him calmed down enough for us to sit on the sofa he turned to me and with tears running down his face he said to me, “Mommy, mommy, I don’t want to be this way.” It was like he had pierced my heart with a dagger. I cradled him and cried telling him how sorry I was that things were so difficult for him and promised him we were doing whatever we could. The next day we met with the pediatrician. We went armed with the evidence of alcohol exposure and some “mama bear” attitude. We took him off all the ADHD medicine and demand to be sent for an evaluation with specialist who could dig a little deeper. 

             In May of 2011 he was seen by those specialists. I wish I could say that we had all the answer when we left that day. Far from it!!!  There is no “magic” blood test to determine if a child has an FASD and Doctors don’t like to give that diagnosis. When  we finally got the medical report this summer Kennan added several more disorders to the ADHD. He is now listed as having ODD (Oppositional Defiant Disorder),  SPD/SID (Sensory Processing/Integration Disorder),  DBD (Disruptive Behavior Disorder) and an unspecified Learning Disorder with the probability of an FASD (Fetal Alcohol Spectrum Disorder – more specific ARND (Alcohol Related Neurodevelopmental Disorder)).  And if the Psychologist that we saw this last summer ( a whole other  story) had his way we would add CD (Conduct Disorder) to that list. My son’s diagnoses are starting to resemble alphabet soup. In October 2011 we went to see the Geneticist for further evaluation. The Geneticist told us that he does have some physical indicators that are common for children that have been prenatally exposed to alcohol as well as the behavioral issues. She wanted to do some genetic testing to rule out any other disorders that have similar symptoms.   We have ruled out Prater Willie and are currently awaiting the results of the other tests. If the tests all come back negative they will diagnose with FASD.

Welcome to Canine4Kennan we appreciate  all of you who are helping us on our Journey to get Kennan a service dog. As we get our blog up and running we hope you will check back often for updates on our Journey.