Today's theme is Dirty.
We've heard back from Stanford and all of Ian's tests came back negative, except for one. His CK levels are still a little high, but nothing to worry about according to the doctor. They had tested him for Fragile X and a Coenzyme Q10 and both were negative. His Carnitine levels were also normal. He has been on a supplement since November and it obviously has helped to normalize the Carnitine in his body. This is great news. The doctor did feel we should still follow up to determine if he is on the Autistic spectrum. She does feel that if so he would be on the high functioning side. His pediatrician is out until next week, but I will be following up with him to get another referral to Stanford.
On another good note, Ian saw his neurologist yesterday and the doctor said Ian is doing much better than he was last time the doctor saw him a few months ago. Ian's coordination has improved as well as his muscle tone. The doctor Ian looked great and that we wouldn't need to see him for a while. Obviously if anything crops up we are to call, but hopefully Ian will keep improving.
The East Bay Regional Center is assessing Ian too. We are still waiting for a call back for further testing. I was told they would be calling this week, but as yet I haven't heard anything. I think I'll go call them.
All in all, things are looking up. We certainly know alot more than we did just a few months ago. Ian is happy and is looking forward to going back to school, a big accomplishment in of itself!
Less than one week until school starts and panic has set in here. Kristin is totally freaked out about Middle School. As the time approaches to go back to school, she gets more and more upset, crying and looks of terror on her face when I suggest we go down to the school. I know going to middle school can be challenging, but it shouldn't be that big of an impact for her. The reason I say this is that she goes to a K-8 school. So she has been attending this school for the last two years, knows the school, has meet most of the teachers already and has tons of friends. It doesn't matter what I say though, she is freaked out.
I called the principle yesterday to talk to her about it and she was able to give me a general idea about who her teachers were going to be. The only teacher we weren't sure about was the core teacher and that was narrowed down to two. These are teachers who have been there for the past one to two years already and I believe she has already met them. The principle said she would also be willing to talk to Kristin too. I don't know if I should follow up on this or not.
I did get Kristin to read a couple of books put out by American Girl about feelings and about going to middle school. We talked about what she was afraid of and what she could do if those things were true. That seemed to help her to strategize different options. She was perkier after that.
As for Ian, we are still in a little bit of a quandary. He is supposed to go to a counseling enriched program run by the county as a student of his current school. However the county program is in a different school district. I've explained to the new school that he is not a student of theirs but is on their campus as part of the county program, and that he goes to a different school and is enrolled there. It's complicated. The staff looks at me like they don't understand, but the principle seems to. At least I hope so. The staff at his regular school keep asking if he is attending or not. I've told them in the meantime that he is still a student of theirs. Does this sound confusing?
So, why am I doing this? Well, Ian's school has a waiting list. If things don't work out at the new program, I want him to still have his original place. The teacher knows he may be there and even if he isn't, he has said we could bring him by to still participate in special activities and events. We also have to wait for the doctors to finish their assessments and tests. Their results may change everything. We don't know! I was hoping all this would be settled before school starts, but oh well. Just more waiting. You'd think I'd be used to this by now.
As for me, I'm taking classes at the local community college. Our classes started yesterday. I'm quite pleased and have been looking forward to them. I've had one class already and I think I'll enjoy it. It's called "Drugs and the brain". My other class is "Mental illness and the Movies" which starts today. I'm taking it from one of my favorite teachers. I know I'll enjoy that.
I'm actually off to attend a parent meeting about home schooling. We tossed the idea around for a few years now, but always end up deciding against it. It wouldn't hurt to attend the meeting, I might change my mind. That is Kristin's other option, to be home schooled, I just haven't decided if that would be best for her or not.
We are still trying to decide about Ian and his schooling. He is signed up for a counseling enriched program through the county, but it takes
We got back yesterday from our trip to Montana and Yellowstone. We had a great time! I'd show you some pictures, but my digital camera died a while ago and I only have my regular camera. I'll have to develop the film soon so I can show you how beautiful everything was.
Ian did very well on the trip. Though once we got to one place, he was ready to go on to the next one. He kept asking over and over when we going to get to Montana and get to camp, at the beginning of the trip, and as soon as we were there, he wanted to know when we were going to go to Yellowstone. Oh well.
Ian developed a new tic while on the trip. Of course I couldn't get a hold of his regular doctor, but the next day I was able to get the on call doctor. She thought it was due to the Focalin and told us to take him off of it. We've been watching him for the past few days, but the tic is still present. Hopefully taking him off the medicine will help, it probably hasn't been enough days. He does see his regular doctor on Wednesday. We'll see what he has to say.
5 minutes for mom has posted a blog about Autism and has asked readers to share their stories.
I'd like to share ours, but before I do, here are some statistics. There are 1 out of 150 children on the Autistic spectrum. There are 67 new cases every day in the U.S. and a child is diagnosed every 20 minutes. The CDC says it is a national health problem. Certainly as a teacher, I have seen more and more cases every year. Working with toddlers, many times we are the first to notice something is different. There are a lot of people out there who have no idea even what Autism is about. Even my own family didn't know what it meant. I was and am more than happy to explain it to everyone.
A wonderful website is Autism speaks. They have a 13 minute version of the film Autism Every Day. It is worth watching. It gives you a glimpse into the lives of families living with children on the Autistic spectrum. The children have varying degrees of Autism.
Our child Ian has exhibited many traits of Autism, but does not fit into the "box" or Autism or Aspergers. As his doctor once put it "He is touched by the feather of Autism". We have been referred to Stanford and the East Bay Regional Center. Stanford is testing him for fragile X. If anything is even slightly off, they will be able to tell. The Regional center has referred him for further testing also. Now we are just playing the waiting game. Ian has had a tough time over the past 12 months and many activities he previously enjoyed have become much more challenging for him. We never know if he will be invited back, even to a friend's house. It seems he has regressed in his behaviors. He has had accidents and is unable to care for himself. Eating out if often a challenge for us. We do get looks, but I never hesitate to explain that he was special needs and what that means. Often people are surprised and will ask more. For those with their noses in the air, who cares. We know that we are the lucky ones and I feel sorry for them. Life is challenging, but it has its rewards too. He is a very loving child, has a great imagination and is cute as a button.
Here it is. The big day. We have been waiting for this appointment for close to four months. We will be heading down there this morning. Ian keeps asking whether he will have a blood test or not. I told him probably, but I don't really know. I guess we'll find out when we get there.
I'll keep you posted.
Did you know that most American babies are being tested for genetic disorders? There are 29 genetic conditions that newborns can be tested for and 88 percent were tested last year. This is up from 38 percent two years ago. Certainly when my children were born genetic testing was not even routinely done. Kristin was tested for PKU, but Ian was not. Makes me wonder that if this testing was available for him, whether something would have indicated the problems to come. As some of you may know, we will be heading down to the genetists department at Stanford on the 30th of July. We've been waiting for this appointment for more than 3 months. We are hoping and praying that the genetists will be able to help Ian and explain some of these puzzling problems.
Check out the MSN article Genetic testing for newborns. I think you will find it interesting.
As I was looking around The Autism Society of America website I found a science article about a study done by MIT. The researches had been able to reverse autisim symptoms in laboratory mice.
This is truly good news! More research obviously needs to be done, but at least we seem to be heading in the right direction. Now, there is Looking for Hope and finding some.
I received this newsletter from the Papolos' yesterday and I wanted to share it with you. It is in celebration of the mothers and fathers who deal with the bipolar illness that affects our children, but it is also a celebration of those mothers and fathers who deal with any children with a mental disorder. Mental illness is still taboo in our society and it shouldn't be. We need to throw off the covers of secrecy. Parents and their children need to know that they are not alone.
Here is a glimpse into our daily lives. Thank you Janice and Demitri Papolos!
The Bipolar Child Newsletter
May 2007, Vol. 24
Janice Papolos and Demitri F. Papolos, M.D.
In Honor of Mothers and Fathers of Bipolar Children
In our book, and in almost every newsletter we write, we talk constantly about the burdens that parents of children with bipolar disorder must shoulder and overcome, all the while attempting to make decisions with the clinicians who work in an area of medicine that is still in its infancy.
But we've never composed a stand-alone list that lets others look at what the parents must grapple with and withstand--in all its stark and disturbing reality.
This list, sadly, cannot even be described as "exhaustive or complete," but as Mother's Day approaches, and Father's Day is just a calendar turn away, the parents coping with a child (or children) with bipolar disorder deserve special recognition and honor for their enormous valor as they:
• Look at a very young and much-loved child with a nagging fear that something is seriously wrong.
• Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.
• Accept that they need help from a professional, but feel a stranglehold of fear.
• Come to learn that there are only 4,101 child psychiatrists in the entire United States--many wary of making this diagnosis.
• Watch their child and other siblings besieged by an illness for which there is little diagnostic or treatment consensus in the field of psychiatry.
• Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.
• Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).
• Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.
• Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.
• Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn't work and tell him or her: "We're going to try something else," knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.
• Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one's hair grey.)
• Watch children's weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.
• Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.
• Have to suffer the ignorance of people in the media, who--in a cavalier manner--discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: "This is an easy way for parents to let themselves off the hook;" or "This is simply the diagnosis du jour."
• Have to listen to the word "No!" from a child one hundred times each morning, but be unable to assert the parental "No" as it will predictably trigger a meltdown.
• Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can't manage their own child. (Thankfully, Ian does not have such rages.)
• Are set adrift in a house that has become a war zone.
• Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.
• Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that "Something must be going on in that household, and with that woman;" or "She seems so nice, but you never really know people;" or "He can keep it together at school, so he must be a very manipulative kid."
• Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.
• Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an "incident" at school.
• Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what's working and where yet another accommodation may help.
• Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors' and therapists' and tutors' offices.
• Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.
• Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.
• Want the world to understand, but fear that the stigma will further isolate the child and their family.
• Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.
• Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.
• See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.
• Listen with horror as their child screams, "I don't want to live anymore;" or "I'd be better off dead."
____________________________________________________
It is hard to fathom how these parents get through a day. Their reality is simply unimaginable to the outside world, and their lives--until their children are stable--are a virtual stew of guilt and powerlessness, anxiety, fear, uncertainty, confusion, blame, and shame. These are feelings that most of us would do anything to avoid, but all are feelings that a family who lives with bipolar disorder must endure for months and years at a time.
And yet, we see family after family find the help, learn to cope, steady their footing, and move on with their lives. And then we see them turn around and offer a lifeline of information and support to others who must walk the same path, only now no longer alone.
Some people think of Mother's and Father's Day as Hallmark holidays; but we see them as an opportunity to celebrate these parents: their grit and their commitment, their love and their humanity....Parents who have never stopped trying to help their children--against seemingly overwhelming odds.
Please take good care of yourselves.
We send you our best,
Janice Papolos and Demitri F. Papolos, M.D.
I've just got the news that Ian's psychologist is closing her practice in two months.
I feel like crying. It took me a long time to find the right psychologist for him. It took even longer for Ian to establish a trusting relationship with her and now I have to do it all over again. Ian's case is not an easy one. I've talked to some psychologist who won't even take his case because it is so complicated.
Now I have to start over. I've got to interview doctors, evaluate whether or not they've dealt with children similar to Ian or even dealt with the different combinations of diagnoses. I've a lot of calling to do and a lot of waiting. Assuming I find the right person for him, will I be able to speak comfortably with this person. Will they be able to help with the family dynamics and all the stuff I'm going through?
Arrrrrrrgggggggghhhhhhhh!
If anyone has any ideas or questions I should ask the psychologists, please let me know. Thanks!
Last week we started transitioning Ian back to school. He spent an hour in class both Monday & Tuesday afternoon. The class watched a movie and we wanted to show Ian that school can be fun too. He was excited and wanted to come back. His friends were very excited to see him and he had two playdates this past weekend. He went to his friend's house for one of the playdates even though he was very nervous. He hadn't been to a friend's place without me in a while. When Tim and I arrived to pick him up an hour and a half later, he wanted to stay for longer. I was very pleased.
This week, we took Ian back to school again for an hour on Monday and Tuesday. This time they were going to be working on a volcano project involving cutting, pasting and writing. Ian was excited to go, until we actually got there. Then he got anxious. It did not go well in class.
We tried again yesterday, but this time I stayed with him. It went much better. In fact he wanted to come back today, but they are getting ready for conferences and we aren't having one for Ian. At Ian's school, the children lead the spring conference. I don't know if they do that elsewhere, but it was a novelty for us.
Next week we are going to expand the time he is in class. Resource will come in three times a week to act as an aide for him and when they are not there, I will.
He's excited, he's friends are excited and his teacher and I are pleased.
