Oh those fall colds

On the very first day of school, the VERY FIRST DAY, Kristin came down with a cold. She already was feeling anxious about school without adding in the factor of a cold. Colds just wear you out and it can be very difficult to enjoy things. Her very first week of school didn't turn out to be the best. Of course, she also shared her little virus with me. Isn't that just lovely? I started feeling sick on Sunday. I had a terrible sore throat that just wouldn't go away. Now it's turned into a chest cold, for both of us. We're still fighting it.

To make matters worse, we both have Asthma, and the air quality here is HORRIBLE. My Asthma has been okay, but Kristin's has been acting up in P.E. Does she say anything to the teacher? Of course not! I read her the riot act and sent her with her medicine. I told her Asthma can kill and to not mess around with it. If she starts coughing and having trouble breathing she needs to stop and take her medicine. I also talked to the coach and he is going to keep a watch on her. Hopefully, she'll listen and we won't have to make an emergency trip to the hospital.

Results from the doctors

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!

We're Back!!

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.

Autism

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.

Stanford

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.

Genetic testing in Newborns

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.

Autisim symptoms reversed

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.

In Honor of Mothers and Fathers of Bipolar Children

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.

Searching for a new psychologist

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!

Stanford

Have you ever seen Exteme Makeover Home edition? In our area it comes on every Sunday evening at 8 am. My daughter and I try to watch it every week, even though we end up crying. In this weeks episode the family has a young girl who has a hole in her heart. She's had 3 surgeries. EM Home edition built this family a beautiful home with a special venilation system for the young girl so she can get better. It bought tears to my eyes.

I started thinking about Ian and wishing that someone could make him all better. The problem is we don't even know what's wrong. We have been to so many doctors, some have brought us closer to an answer, some just don't know what to tell us.

For many years, I have been pushing for Ian to see a Neurologist. For just as many years, the doctors have said we didn't need to see one. Finally, last year one of Ian's doctors from Childrens referred us to a Neurologist. After the initial visit, the Neurologist said there were some discrepancies that needed to be checked out.

An MRI was scheduled and it came back normal. The next step was to schedule genetic testing. This was done via blood work. Two of Ian's tests came back abnormal. One of the tests measured his CK levels which were slightly elevated. This level can indicate seizures and neurological delays. The other test measured his Carnitin levels which have to do with energy production and amino acids. This level was low. The doctor put Ian on Carnitor 3 times a day and retested him in a month. The results were the same.

The doctor was not too concerned about the CK levels. The normal levels are 0-200. Ian's levels were at 258 and 284 respectively. For MS, Downs, Muscular Dystrophy, etc, the CK levels would be in the thousands. The Carnitin levels are a concern. Even with being on a supplement, the second test still showed the Carnitin levels as being low.

The doctor had been checking for a Mitochondrial disorder. It is very difficult to give an actual diagnosis of this disorder. He was hoping at the very least to rule it out. However, the tests have proven to be inconculsive. The big question is does he have a Mitochondrial disorder or something else. He does not have the answer.

The Neurologist has referred us to Doctor Gregory Enns at Stanford. He is a Genetistis and Metabolic disorder specialist. Ian's Neurologist believes that he is the best doctor to help Ian.

When the doctor mentioned Mitochondrial disorder, my heart froze. I only know of one family whose young child has a Mitochondrial disorder, see Emmas story. Her story is heartwrenching. She is currently doing well.

Usually I'm the first to hop onto the internet and look up information. I call my other various sources and gather info from them. This time, I didn't want to know. I wanted to keep my mind blank about it. It took me three days before I dared type the words Mitochondrial disorder into the my search engines.

I found the United Mitochondrial Disease Foundation. I found out that there are varying degrees of these diseases and some were quite mild. I only looked briefly, but it was enough to give me some hope.

A few weeks later I checked back. I started looking up information based on the few things I knew from Ian's reports. I'm heartened by what I've found. I haven't done too much research, because we really don't know what's going on. It's best to wait till we see the specialist.

In the meantime, we are just waiting for insurance. They have requested more info from the neurologist. I'm praying that everything will go through and we'll be able to see Dr. Enns soon.

Tim is okay!

The doctors found nothing wrong with Tim's heart! They think it was a combination of dehydration and high blood pressure. Tim needs to follow up with his doctor and figure out a course of action on lowering his blood pressure. Tim told them that when he is stressed he chews on tobacco. A nasty habit if you ask me! (Not that anyone asked.) Anyways, they want him to quit right away and find other ways to relax. I told him that he had better start finding other ways to relax soon, because the stress with Ian was not going to be letting up any time here and could worsen. I'm going to start yoga up again and I asked him to do it with me. We used to take yoga classes together years ago, but life has gotten in the way of doing it consistently. It's time to take control again...

Anyways, everything turned out well and we have a plan to exercise and relax. My doctors have been getting after me about that too. With both of us working together, we should be able to stick to yoga and learning how to de-stress.