Saturday, 13 August 2011

To Medicate Or Not To Medicate...that is the question.


This blog entry is long but if you have ever considered medicating your child for ADHD, OCD, Anxiety or any other behavioural symptom etc , I strongly recommend you read this blog before you do. That also goes for those of you who already DO medicate your child for these or other issue and are considering weening or removing some or all medications. For years I was an anti-Ritalin advocate. I felt and still to some degree feel that Ritalin along with other serious medications are widely over-prescribed for children with ADHD and other disorders. That said, there came a time in our son Joshua's life when we saw no other option but to consider medication as a means to help him function. We met with a new doctor and discussed the options and agreed to a trial of prescriptions. What really caught us off guard was that this doctor prescribed not one, not two but three different prescriptions at one time making a little drug cocktail. We decided to trust in this doctor because she was the expert so we introduced three new meds one at a time for varying issues with two weeks between each new added drug. Each medication had favorable results accept one which I can not even remember the name of now so many years later.What I do remember about it is that it affected Joshua in a really adverse way. He withdrew into himself and started shutting himself in his room, a total mess and ball of anxiety. This was not my boy I was seeing and hubby agreed so after the first 4 days of the 2 week trial of that medication we stopped abruptly . I decided I was never going to put that drug into my son's body and brain again. We then switched that one out to another medication . Once all three meds were successfully introduced Joshua was then on a daily regimen of Methylphenadate( otherwise known as Ritalin), Resperidone , and Clonadine for severe ADHD, anxiety and OCD and severe sleep disorder. This all happened the summer before Joshua started grade 1. He did so well that school year and made great strides. He started to learn like he never had before. Of course, a fabulous teacher and program also played an huge role but the meds were also instrumetal in bis progress.
One thing about considering meds for a special needs child is that as the child grows it is to be expected that dosages will  increase and the child's needs and symptoms will change. Fast forward 4 years. Joshua is now 10 years old and over the years his medication dosages have gone up and new meds have been added. Joshua over these years had developed more severe anxiety more severe OCD and some tics and behaviors that bordered on Tourettes . Every time we went to his prescribing doctor, she would listen to our concerns and say one of two things..." it's time to increase the dose of this or that medication" or " it's time to consider adding a new medication" we tweaked and changed and switched up his drug dosages etc and sometimes with good results but they were always temporary results. More and more we as his parents were questioning if we were still doing the right thing in giving Joshua all these drugs.Until a few weeks ago Joshua was taking 5 different prescription drugs for all then  original and other newer symptoms as well as some over the counter medications for those and other issues. He was a walking pharmacy . I gave him his meds on schedule like clockwork but one morning last month I forgot to give him his morning doses in the hustle and bustle of the  morning. What I observed was that he had a great morning of clarity. No behaviors, no ticks, no OCD. At first I did not think anything of it until I gave him bis medications and within a half hour of those doses all his symptoms we thought we were treating returned in full force. Joshua became a complete mess of anxiety and OCD. I immediately made an appointment with his prescribing doctor to discuss what my husband and I observed .Before seeing the doctor, I tried delaying his morning dose again with the same results and discussed this at our appointment. Joshua's doctor agreed with me that at least one of his medications was giving him side effects. She suspected the methylphenadate which escentially is Ritalin. We were then instructed to take him off the drug...cold turkey. I asked if this was safe and she said the only medication  she prescribed for him that should need slow weening if ever needed was the Cilexa(Citalopram) which he is also now prescribed for anxiety. That day we skipped his afternoon dose of Ritalin and he had a good afternoon , anxiety free. Day two was the same but in days that followed we found out just how hard withdrawal would be on him. We were denying Joshua's brain and body a stimulate it used for 4 years and so withdrawal produced a serious energy crash. Joshua started sleeping up to 18 hours a day. When he was awake we was alert for only brief periods and otherwise was the walking dead. Some research taught me that this was normal cold turkey withdrawal and perhaps we should have been instructed to ween him more slowly to avoid this crash. Once again I decided to hold off on his morning meds. Joshua was still a bit tired but was not falling asleep in his cereal or seeking out a nap shortly after breakfast. After this and 2 weeks of a very overly tired little boy we rushed him back to his doctor insisting she take us  right away to discuss his withdrawal and the results. We confirmed that the Ritalin was the culpret for his symptoms because since removing this drug from his regimen, his symptoms we were trying to treat have mostly disappeared . Because of the extreme fatigue we also stopped giving Joshua his Clonadine and Melatonin for sleep disorder. I just could not justify drugging him to sleep when he was soooo fatigued already. Aside from one tablet of Melatonin , Joshua has successfully fallen asleep right away without those meds since we removed the Ritalin whereas before  he was unable to fall asleep at all without at least the clonadine and sometimes also the Melatonin . This was a happy surprise. Our biggest concern was the never ending fatigue...excessive fatigue. I shared our observations with the doctor and right away she felt his Resperidone was compounding the fatigue he was experiencing from the Ritalin withdrawal. Since his anxiety , OCD and ticks had dramatically decreased anyway she suggested that we ween ( yes ween) him from the Resperidone slowly. Hmmmm , why was weening not suggested for the Ritalin? That one still puzzles me. I did not give Joshua his afternoon dose and low and behold , he did not fall asleep in his dinner that night. For the next three days up until now I have skipped the morning dose of Resperidone as per instructions and Joshua has been alert, mostly anxiety free and more focussed. He has started reading his books ( actually reading them instead of looking at the pictures and pretending to read ). He has been playing with toys... something he rarely if ever did before, and he has been sitting still through entire T.V.  programs...something he NEVER did. In the next day we will cut his afternoon dose of this medication by half and then eventually drop it completely. This will be three serious medications dropped from Joshua's daily drug regimen with so far great results. We could not be happier at this time the only prescription medications ( besides the Resperidone which we are weening and eliminating )Joshua takes are Citalopram (otherwise known as Cilexa ) and Lamotrigine. The Lamotrigine is for absent seizures and I will add that his neurologist wants us to consider a trial without that one next year. Our son also takes some over the counter meds for severe bowel issues that required serious surgeries . These we have to continue with at this time to prevent relapses in his condition and we are fine with that but our goal as agreed upon with his doctor is  that we eventually hope to have Joshua taking only the Cilexa as prescribed by her and possibly still the Lamotrigine as prescribed by his neurologist as well as the over the counter bowel meds. When he gets older and can more  sufficiently control and regulate his diet, we hope he can forego the bowel meds too. time will tell.
        This has been a journey and a huge learning experience for us. Do we regret using the Ritalin and other medications????? Nope..not in the least. That said, we offer advice to any parent considering medicating their special needs child for these or other conditions. First to you I say educate yourself. Do the research. Do not just rely on what the doctor tells you about the drugs he or she is prescribing. Ask other parents who have used these meds for their children about their experiences. The next thing I suggest is that you journal everything ...EVERYTHING...you observe in your child, and I mean everything. Any little change. Do not give a medication first thing in the morning if at all possible. Wait a half hour and note the before and after results and differences in your child from the drug he or she is given. Next I suggest if your child takes more than one medication is to stagger the meds. Do not give two or more meds at once if it can be avoided and in most cases do not ween two or more meds at the same time. This will help you to know which medication is having what effect and if there is an adverse affect to a medication, you will more easily be able to pin point which drug is responsible. Before seeing the prescribing doctor write down all questions you have because I guaranty the doctor will be over booked and therefore rushed to get you in and out and you will forget to ask something important. Last I says write everything down and follow your gut as a parent. I also suggest you ask your child's teachers and / or Educational assistants to do the same a document what they observe when working with your child with each new medication and dosage change. You know your child better than anyone . Yes doctors have expensive degrees and training but they do not spend the time your child that you do . This blog entry is not meant to deter anyone from considering medication for their child for ADHD or anxiety etc. Many children truly need these drugs and Joshua was at one time one of them . I still believe that. He still needs some of his meds.Even Temple Grandin, a respected professional and speaker with autism will tell you that though she is against the over use of drugs in autistic children, she takes and needs a low dose of anti-depressants to function. Some kids just need the help. What I am saying though is to listen to your instincts. If something seems wrong down the road with a medication, it probably is. Ask lots of questions, wait and listen for the answer. Research and ask those with first hand experience what to expect both for intraducing a new medication and for weening an old one... and what ever you do, make your child's doctor listen to you. If they don't then find a doctor who will.

Friday, 5 August 2011

12 steps at 10

It has been a crazy week. Well ...it's been a crazy summer but I will focus on this week for then purposes of this blog entry. Just over a week ago I took my son Joshua to his main prescribing doctor to get a prescription refill written and discuss his growing anxiety issues. Up until last week, Joshua was taking a total of 6 different medications which he needed in the last years for various issues. We as his parents resisted meds for years until it became evident that he needed them. He could not continue to function properly without them so off we embarked on the scary journey of adding some serious drugs to Joshua's daily treatment and routine. Joshua having been born with Kabuki syndrome was showing symptoms of severe ADHD ,OCD , anxiety, sleep disorder, tics and the list goes on. We dealt with each issue individually and mixed and matched his medication cocktail until we found the right balance for him. As he grew the issues would change and some would increase so up went the doses and number of meds. The number has climbed to what I think is a scary number of meds so I discussed this with his doctor who agreed that it is time for review . One morning last week I forgot to give Joshua his morning meds in the hustle and bustle of the morning. I finally remembered to give his doses to him at 11 am. He would normally get them as soon as he was awake and downstairs not allowing time for me to see a before and after. That morning was different. Joshua awoke calm and focussed and happy that morning and remained that way until 11:30 ish . Within a half hour of him getting his doses he became almost suddenly and increasingly anxious and agitated. The worry was remarkably pronounced. His drugs that he was taking to keep him from being anxious was having the opposite effect. Well, at least one of them was. Off to the doc we went and she agreed that it was time to reconsider his drug routine. Her suggestion was that she thought his Ritalin (methylphenadate) was the likely culprit and it was time to take him off. I was told that cold turkey was the way to go and that it was safe so that was the plan. I went home and skipped his afternoon dose of ritalin but gave him the rest of his meds as planned. Next day, no Ritalin again at all and it was a good day. Day three, same thing and it was a great morning with a happy giggly focussed child but by night fall a bit of anxiety kicked in along with fatigue...extreme fatigue. I did not even need his sleep meds to get him to sleep . For the next week my child would have bipolar ups and downs back and forth between focus and silly moments of contentment and worry. That was expected but what I did not expect that I should have was the energy crash of being taken off of what essentially was prescribed speed. His body no longer had the stimulant of the drug and crashed in a profound way making him unable to stay awake most of the day for much of the week. We still had glimpses of happy giggly Joshua but only between moments of fogginess. Even today we are seeing much improvement and he was more alert than before with each day getting better but we have been a whole week with no sleep meds( a good thing ) bouts of anxiety and giggliness combined and a 10 year old boy that was made to go through detox with no warning of what was to come in regards to withdrawal symptoms and how to cope.An oversight on his doctors part as well as mine as his mom.I knew Ritalin was speed but trusted that the doctor knew what was safe in how to take him off the medication.I do. Ot doubt that cold turkey was a safe method of detox but I would have liked to have been more prepared and educated about the effects of withdrawal from tbis drug. I have been journaling the whole week and will take this information back to the doctor and ask some serious and obvious questions. Do I regret putting Joshua on Ritalin all these years? NO...not in the least. It gave him some coping ability to help I'm focuss and learn. Do I think we made the right choice taking him off of it now? Heck yeah. Do I think I should have been more informed about the withdrawal effects? Of course. This journey is not over and it will likely take at least another week for Joshua to detox and level off before we can move forward with changing or removing any other meds . I am optimistic in what these changes will mean for Joshua.I am also cautious about making any future changes without asking more questions.I want to add as a footnote that I have a lot of trust in this physician. I take much responsibility for not knowing how this would effect Joshua. Next time I will ask more questions. I still think this information could have been volunteered but I still trust this doctor to treat my son. It has been her care and experience that has helped us get Joshua to be balanced enough to be the focussed boy he is in comparison to how he was before she started treating him.

This has been a learning experience and I am so proud of my little man for going through something that most if not all adults would have a really tough time of it. We know that a street drug addict or prescription drug addict would go through hell in a detox centre trying to kick the need for drugs.Here is my son at age 10 being forced to detox with no control over how detox will happen and with little understanding of what his body and mind are going through and why.He just took it like a man and that makes me proud.

Tuesday, 12 April 2011

ART FOR AN IPAD

We decided that Joshua needs a portable computer to take with him to and from school and to really focus on typing and communication . Now, as I said in my last post, Joshua is very very verbal but when it comes to writing and typing he lacks skill. It is common with his syndrome that writing is too exhausting for those who deal with it. They might learn to write but   they can never do much of it for very long and their letters are shaky and poorly shaped. This is the case for  Joshua. His inability to write is holding back the rest of his learning. Ipads more and more are being used for special needs and autistic kids as a form of augmented communication. Apple has even developed APPS for them for such a reason like word prediction software etc. We hope to have the funds raised by September 2011 for this item or sooner.
I wanted to  find a fundraising project that could involve Joshua directly. Since I make my living as an artist and both Joshua's dad and sister also have a passions for art  on a recreational level, I thought this would be the perfect  family project. Yesterday I set both my children to task painting original acrylic works for this fundraiser to be auctioned off to raise the needed funds. It was so fun for them and such a bonding moment for us to  do this. Joshua produced what I think is a very nice  piece of abstract art. Okay..so its not a Rembrandt..but it is still something I would be proud to hang in my home and has some lovely colours. He was so proud of himself. It  made him very happy. He was so proud in fact that when I took him to school this morning he wanted to tell everyone about his new job. I love that this is giving him a feeling of accomplishment. I have already gotten a couple bids on his first painting . The current bid as of this morning is $25.00 and  the auction for that painting will stay open to bids until next Sunday.
Now we can not leave little sister Madison out. She also wanted to help her brother get what he needs. That little girl amazes me with her sense of compassion and philanthropy. She has been asking me to start a fundraiser project to help the needy for a long time now but I was not sure what it was she could do. Now I know..I am blessed to have these two kids and an so excited to see how this project goes.


If you wish to place a bid on any of the art pieces up for auction you can  make a bid here or on my Facebook album for the auction. at
http://www.facebook.com/home.php?sk=question&id=10150217165236214&qa_ref=na&notif_t=question_answer#!/album.php?fbid=10150217252951214&id=502926213&aid=349020


 We will also gladly accept monetary donations towards this technology.We welcome any support we can get.


Some of my own art work will also be going up for auction. The first piece I have donated toward this auction is a hawk head study.  Openning bid for the hawk will start at $50.00 which is below my usual fee. Any takers?

Sunday, 10 April 2011

I AM SO THANKFUL THAT YOU CAN TALK NOW PLEASE BE QUIET.

 In the early years  Joshua was not able to speak. He was non verbal and I cried and cried and begged God to give him him a voice so I could  hear him speak. I longed to hear him call me mommy or say I love you. In the early years we taught him sign language and gestures to tell us what he wanted or needed.Those days are long gone  now and a distant memory.There is a saying.." be careful what you wish for,. You  just might get it." Joshua started talking at age 4 and once he got on a roll he decided he would not stop...literally. I sit here and write this on a quiet Sunday morning ( wait..strike the quiet ) there is no such thing in our house. This paragraph alone has taken me a half hour to write because my son has stopped to ask a million and one questions and has talked incesantly over the  cartoons playing onthe TV which his sister is desperately trying to watch. Most days are like this.You can barely hear yourself think for Joshua's non stop talking. We have had days where Joshua will wake up and start talking about this thought and that thought and share every little thing that passes through his brain and before you know it 4 hours has passed  with barely a lull in the chatter.Those are the days where I miss the sign language. Its not that I do not want to hear my son's thoughts. I love it when he shares his  ideas and thoughts with me. Its that I miss the quiet.Oh I know...there will be those of you who may read this who have a non verbal child with autism or another speech issue and are thinking " Wow, this lady does not  know how lucky she is that her child can speak." To that I say..I was you once upon a time ....longing for my son to have a audible voice. Before you judge I challenge you to ask someone...anyone to talk to you for 4 hours straight non stop...I mean literally non stop and then come to me and tell me if you feel like you have your sanity.If you do ,then I challenge  you to ask them to do it again  and again several days in a row.




Now as I write I have a brief moment of calm and quiet while my son has moved to another room in the house.( it won't last) Joshua has severe ADHD and he never sticks with anything for long...accept talking... so when the quiet comes, I relish it. I revel in it. I embrace it. Even when my son is silent, there is not always  quiet because I have another child who also deals with her brothers non stop talking. When the lull comes... it is her turn to talk to mommy. She waits so patiently for a chance to share her thoughts and dreams with me so I  listen  intently and hang on her every word.
That is the one of the hardest parts of parenting a special needs child...the balancing act that comes with parenting them along with other neurotypical children. Sometimes I feel like I have it all together and everything is flowing in our household and family but there are days when I feel like it is all falling apart and I pray I am not leaving one of my children feeling like they are not getting equal time with mummy.Oh...and lets not forget the fact that this is all part of a marriage. Daddy needs mummy's time too.When you have children it is not unheard of for the husband in the marriage to feel like his children are replacing him in the marriage. Children take up alot of time. They need to be cared for and nurtured and they are demanding...justifiably so. Many a husband has felt neglected for his child. Now consider the daddy of a child who has special needs.That daddy has to lose even more of his wife to his child. It is a special calling as a dad too and I give my husband alot of credit because he ( though we do not always agree on what's best for our kids) has stuck by me and loved me...even when there was little time for me to  be his soft place to fall because I am already a burried under 2 children , 3 pages of doctors and related doctor appointments , a school system, therapist and a service dog.Did I tell you my son had a service dog? We will save that for another blogging day.


Now don't get me wrong.. I still love hearing my son's voice. I love it when he tells me something he thinks is funny. I love the sound of his laughter and I love love love it when he sings to me. That is my joy. Joshua does the sweetest rendition of "Baby Mine" from Dumbo when he wants to make mummy smile. he knows I love it so. As much as I long desperately for some quiet , I would not trade Joshua's voice for the world. I would not  give up hearing him tell me he loves me. I would not  relinquish those moments when he tells me about his day and what happened.I just wish he could find a way to tell me once with out OCD kicking in. (Oh yeah.. forgot to mention that Joshua has OCD.)I would love to hear all about his stories  once.. and then move on to a new story or some quiet instead of the same story  or question over and over and over again. Is that so bad? If you want a full list of Joshua's medical and developmental issues you can go to his web page and read all about him at http://www.myjoshua.piczo.com/


I love my kids  and  would never sacrifice hearing their voices but I would  at times give my right arm for just a litte quiet.

Saturday, 9 April 2011

WE'RE NOT IN KANSAS ANYMORE



When I embarked my journey of being a mom I had all these visions of what it would be like..what things I would do with my kids..what memories we would create. Then came the reality check. My son was born with Kabuki Syndrome and autism and the tornado hit spinning me away out of Kansas and into the land of Oztism ( Autism ) A land where there are many beautiful things to see..songs to be sung and memories to be made but there are also many battle and perils along the way. Some times as parents we would choose a path only to find out that we went the wrong way then have to double back and try another route. Sometimes we got lucky and went the right direction the first time..I did not land in Oz by choice but while I am here I am trying to make the best of it as this is a place I have to stay. Unlike the movie there will be no clicking of the heels and chanting "there's no place like home..there's no place like home".Truth be told..I do not really want to leave.. I only want to make the journey a little easier. I want more songs and wishes fulfilled and darn it all..I want Glenda to finally arrive. But In this journey I have to find my dreams through my family , through friends and support groups and anywhere I can.. This blog is to be part of that journey towards fulfilled wishes for a more blissful Oz. Welcome to my world. As you read my blog you will see inside my heart and mind..the mind of a mom parenting two very special children (one with special needs) a mom who sometimes laughs and sometimes cries.. sometimes has the answers and sometimes does not have a clue but is determined to find the answers.Feel free to read in silence or comment and laugh cry and what ever along with me. If in my random ramblings I can help someone feel a little more hopeful or a little less alone..then this will be worth it.