Affected Arm!! CIMT

I have titled this post so that other parents can easily have reference.

At the time of writing this Hunter is 14 months old and i decided to start this blog. Because i noticed him last week put an object in his mouth to instead of his effected hand to bring to me.

I had thought at the time that his OT skills were up to date & he was doing well . He would bring his arm up when he tried to stand, weight bear when crawling and open his hand to an object when his left would bring it over. When i saw him use his mouth i immediately knew this was wrong!
I jumped on blog sites of children with the same diagnosis to Hunter that i follow (these are from the US) to see where their children were at at Hunter's age... I was astounded.. they were all using their hand more than Hunter. But the one thing that stood out was that they had all undergone CIMT (Constraint Induced Movement Therapy).
I have research this therapy as much as anyone!

CIMT Information.

Most children who begin this therapy are between 12 - 16 months old as a the critical period in the brain for learning to use there hands/arm(fine motor skills) in certain ways is active.

The treatment involves the unaffected arm be put in a plaster cast for a period of 4 weeks, could be longer or shorter but this is the average.

During this time intensive treatment is undergone.

The outcome of CIMT is that whilst the unaffected arm is in cast the effected arm has no choice but to perform.

The studies are proven that the effected arm can increase use by up to 30 %,

I have spoken to Hunter's OT at the Spastic centre which is one of the centres in Australia that do actively conduct studies & She did give me a Mitt for Hunter to wear over is unaffected hand... but i was just given it, no program, no nothing, i had no idea at the time what to do with it, when put it on Hunters had he screamed and wanted it off.
She is the only OT he is seeing..because i was told that he was doing great & i was doing every thing i needed to & our sessions should now go to 3-4 weeks instead of fortnightly or even weekly , which was what we were doing a few months ago.
I started to research CIMT in Australia as much as i could and discovered that it is still in a trial stage.. trust me, i contacted about 23 OT's in Sydney, and Melbourne also contacted people from university trials, West mead children's Hospital and Sydney children's hospital at Randwick.

I got allot if info back from the people i talked to & all of it came back that, Australia believes that CIMT is a breakthrough & may work but without enough trials & funding it cannot be implemented, also that they are cautious as they are moving towards bilateral therapy(using 2 hands, so that the brain map of the uneffected side can help create a map for the effected one) i too think this is a great therapy, but with out any uses how can you start?

So at this time we are on the cusp of therapies that defiantly will help children with hemiplegia ... but not right now!... well this doesn't help Hunter!!!
I'm so angry!, i cant believe we are this behind! we know it works & its not used, the amount of OT's i spoke to regarding CIMT who said " i don't know what your talking about" "never heard of it" disgusts me, these people have an obligation to their profession to stay up to date!
So i continued my research & it led to where i started.. America.
It seems to be common practice for children with hemipleiga. Hence that other kids i have seen doing so well at Hunter's age.
So right now i am trying to contact a lady at West mead children's hospital who is conducting research to try and get Hunter in one.
The other thing is Luke has family in Atlanta Georgia, so we decided that if we pursue every avenue in Australia and it come back that the CIMT cant be done for Hunter here... We are going to America to get it!.
Big call i know .. but this is our son & as parents i believe its our job to see that they are given everything in life that they need..I could never sit here and watch him go through life with an inability knowing that i could have helped him more, we will put our lives on hold, borrow money, & do what ever it takes. I think every parent out there would do the same.
Not sure right now weather we will go, hopefully something will come up in Australia.. I keep posted!!

The world of Therapies

After our first physio appointment, which was at the same hospital that Hunter was born in, i felt both relieved and frustrated, relieved as she was very good & told us that Hunter was mild & yes he will ride bike, run & be a perfectly normal boy, with just allot of work, i was inspired to get home and keep practicing, i wanted to know everything i could do, and when was our next appointment, so we could get on with things, well, once we finished she got her appointment book out and booked in appointments for the rest of the year... 3!!, that's it!, & we were in august now. i couldn't believe it, she said basically there is no staff & she is the only physio & is booked out, i could contact the spastic centre of Australia and see what they could offer, but if i did this i had to give up her.. in her words, "your not allowed to double dip!", you can only take advantage of one service offered. I didn't understand, so i said well is there other physios & she said yes if you want to pay, well i didn't care about paying, i just didn't know it was an option, the DR only gave me this appointment.
So off we went to our third Pediatrician, asking about the spastic center & a private physio. She gave us the info for both..
The spastic center took a while to get into, but once we did its been our saving grace, Hunter started Conductive education here is a link and a little about it www.thespasticcentre.org.au/services/conded
Conductive Education is a systematic and holistic approach to develop problem- solving skills through an educational program for people with cerebral palsy and motor disorders. It is not a therapy, but a multidisciplinary system that enhances the child's physical, cognitive, social skills and emotional well being. Conductive Education is not just an exercise, it is "learning to learn" by intensive and repetitive practice, and, the application of various activities necessary for progress. This applies to motor skills, balance, sensory and perceptual functions, emotional development, language and cognitive functions. We go once a week to the classes, & Hunter loves it.

We also have Hydrotherapy once a week, & see an OT, Physio every 2-3 weeks they have done so much for us. Hydrotherapy is so good , as Hunter strength isn't so good, so we practice standing in only waist deep water, he can get the feel of this without it being so hard, it also teaches kids about swimming safety.. & its fun he loves the water so much.

The private physio we got is a lady called Robyn our sessions are as much for me as Hunter, i learn everything i can & would spend every spare moment doing exercises at home. Hunter sat up at 5 months, might have been balancing on his chubby belly for a while there, but to me he was sitting & apart from not rolling to his right , wasn't that delayed.
The next couple of months saw me doing alto of research into therapies including CIT Constraint induced therapy. Where the non affected arm/ hand is wrapped up or put in a plaster cast & the brain learns to train itself to use that arm, I remember when i first discovered that Hunter wasn't using his right arm/ hand i strapped up his left arm (this was at 3 months old), wow he would bring his right arm up, after telling the physio this, and doing some research i discovered that it is a therapy.
Hunter had a splint put on his right had to help keep his thumb out i believe this has helped so much, his hand is very relaxed, its only when he is doing a new exercise that he stiffs up.
I also went to my last Mothers group in this time, after seeing all the other babies rolling & sitting up I left one of there houses' one day, and cried all the way home.
Hunter sat up at 10 months, he had almost done it the physio way (rolling over & using his arm to push him self up), but one day he was on his stomach and used both arms to push onto all fours and sat! we were so happy, he just kept doing it.... Then the bum scooting started, i thought it was fantastic that he was getting around.. the physios not so much. It was about this time that i was getting very concerned about Hunters right hand, he never used it. he had been given a mitt to wear on his left hand but honestly i didn't really know how to use this, its allot different than doing exercises on the floor with them, he hated it, although i truly believe it is the best thing to do.
I have to mention this there is a book by Norman Doidge its called The Brain that changes itself... its amazing & gives you so much insight into the brain, made me feel so good.

Finding out that Hunter wasnt just left handed

Hunter was the best baby, i was so lucky, he slept through the night at 4 weeks.. i do have to give credit to my husband Luke, i wouldn't have gotten through those first few weeks with out him, he did everything!!

We first notice that some thing was up when Hunter was about 3 months old, he would by lying on the ground under one of those play things that hang over them, & he started to reach up with his left hand only, i noticed it straight away, & it didn't feel right at all, he continued to only reach with his left & his right fist was always clenched, I did what i think allot of Mums out there did & jumped on google.... an hour later & Luke has had to come home from work as i was hysterical, the Cerebral palsy websites symptoms were exactly what Hunter had, i knew & no matter how much he or family members reassured me i couldn't stop thinking about it. to make matter worse Luke and i were getting married in 4 weeks time.

Hunter looked perfect he would lay on the ground an kick his legs so much that we thought he would take off, he was also rolling to his left only, but i still thought this was great, he just didn't look like he had CP...but i couldn't get it out of my head, at Hunters 4 mth check up i mentioned it to the DR she used keys to put them over Hunters right side & he reached out across his body with his left hand to get it. She checked him out for a minute or two, then when she came back i could see it on her face, she gave me a referral & said it could be his shoulder or it could be neurological. I was so upset, my worst fears were being confirmed.
This was the day of Luke's bucks night & i was staying at my Mum & Dads that night with Hunter, when i got to their house i told Mum & she cried, i think i wanted her to tell me it wasn't true, but she knew too, she told me a while later to take Hunter for a walk, she lives on the lake so it was nice. I will always remember that walk that day, i cried & cried & cried, watching all the other kids riding bikes & playing in the park, i kept thinking ,will my son ever do these things, i was angry & didn't know what to do, i kept walking and finally sat for a while, Why me,why Luke what did we do? it wasn't fair but most of all it wasn't fair for Hunter.After feeling sorry for a while, something came over me & it hasn't left me to this day, strength... i was his Mum & he needed me, i said to my self this is who he is & this will make his the person he will be one day, its my job to make sure he has every opportunity possible, i didn't know what the future held but i knew i would make sure he would be happy & loved.

I called the pediatrician to get an appointment & couldn't get one for over a month, so i rang every pediatrician in Sydney till i got an appointment the following week, 3 weeks before our wedding day. Life was very stressful at this point! The Paediatrician didn't diagnose Hunter with CP, he completely missed it, said that it was his shoulder due to my birth. I remember Luke turning to me saying, see babe its all good, We both wanted to believe that, but knew he was wrong, i look back & think, wow maybe we needed the misdiagnosis just to get us through our wedding & have our day together. Our day was fantastic the best day ever.

When we got back from our honey moon,(which was only 3 days & Hunter came too) i was onto another DR, we ended up seeing the same DR that saw him in hospital, he was very thorough, afterwards he finally confirmed what we thought, he even said i am confirming your worst fears i know, i was actually OK, he kept asking me & repeating the diagnosis, but i just said where is the nearest Physio.
He started physio a week later & all i focused on was him & what i needed to do to get him to his best.

Hunter's Birth

This is my first post on my first blog, as i say in my profile, looking at other Mums blogs who have kids with the similar diagnosis as Hunter really helped me get through some tough times. So for all the other Mums that might need some advice or just to compare, this is for you too.. as well as me as i tend to forget.

My pregnancy was fine, actually it was great, not even morning sickness, we booked into the local hospital through the midwifes clinic, as there was no need to think i would have any trouble, with my age & health.
My waters broke at about midnight on Friday evening, my labour stopped & started for the next 2 days, but every time i rang or went to hospital they sent me home, so by Sunday midnight and the pain very bad i went back to hospital and said i wasn't going anywhere!.
I laboured for another 16 hours till they said that Hunter is Posterior position (& that's why it hurt so much) but that they had decided that i could push him out. 4 hour of pushing, vacuum, forceps & a DR change I'm on my way to have a Cesarean. Hunter finally came into the world at 8pm Monday the 22nd of December 2008.
I spent the next week in Hospital as my milk wouldn't come through & Hunter wasn't eating, so they put him on formula & told me that i would never breast feed.. i said, wanna bet! Hunter had a slight heart murmur when the Pediatrician came through to give him a check up, i was so worried about it but he assured me that it was very normal after a long labour. The only other thing that sticks in my head was a midwife that came in one day & said to me, Oh you will have to get that fixed as she looked at Hunter, i asked what she was talking about & she made a strange face & said, the droop on one side of his face, i hadn't really noticed it, but i could definitely see what she was talking about, i asked what it was & she said it was because of my long labour & gave me a card for an osteopath... I had never heard of one before, i told my Mum when she came in & she said the midwife was an idiot.. i had to agree, didn't think much more about it.

When i look back at the time in hospital & the next few weeks, i honestly felt numb, like every thing was happening around me & i had no control. Now i know that after the labour i had i was actually in shock, My husband and i had wanted a natural birth, i even dragged him to the calm birth classes, i never in my wildest dreams imagined that my birth would be like it was.

My milk did come through & Hunter was breast fed till he was 5 months.