2

Amazing & almost unbelievable progress!

This medication is seriously a life changer and for all the positive reasons!

So for the first week in school they noticed improvements but since going up to the 20mg we are being blown away by the changes. She is sitting to do her spellings, numeracy and literature work with only needing a few reminders to keep on task rather than constant ones. She is actually enjoying doing her work and is coming home really proud and eager to show me what she has done and how neat her writing is, which has come on leaps and bounds! Before her writing was pretty unreadable, now you can actually read what she has wrote and I am sure that in a few more weeks time with practice her writing will get even better.

B2CF467F-5FF3-4094-8A6D-9D9BBEA41B7D

The even huger thing is that she was seen by her physio and she has discharged her! They thought possible dyspraxia when we first went to see her paediatrician as she couldn’t do simple things like stand on one leg for any length of time or walk along a line of tape, but now she can do it all so well the physio says she is actually ahead of peers for her gross motor skills!

Her physio is just lovely and said that she was so happy to be discharging her but also didn’t want too as Amellia is such a pleasure to work with and is full of character and love. She said that she has never seen such an improvement in a child from taking the medicine and that Amellia’s ADHD must have been affecting her immensely.

The only side effect that is currently around for her is problems with getting to sleep. This is something she struggled with before but it has got worse. We have bought some relaxation tapes and she has been prescribed melatonin but I’m only going to give this to her on school nights after she has tried to get over to sleep by herself first.

img_7949

She is still 100% herself, outgoing, chatty and full of love for life but able to focus now to have a proper conversation with you. It is simply amazing and to think when the idea of ADHD was first floated I wasn’t sure about medicating due to the worry of it changing her personality, that when I said to people I was going to give it a try and they thought I was crazy.

These changes are amazing and going to help her achieve her best in life that she can! This girl is going to do big things, I can just feel it!

 

2

Week 1 of medication!

They decided the best medication to try Amellia on first is Equasym XL.
It is a modified release stimulant, it starts to work within 30 mins of taking it and is then out of the system in approximately 8 hours. The reason I like this medication is that she can go without at the weekends as it does not need to be built up in the system over a course of days or weeks etc.

Amellia has started off on 10mg for the first week, will be going up to 20mg for the 2nd week and then up to 30mg to see if she gets any side effects and what helps her best. At the review in 6/8 weeks we will then discuss how these past few weeks have gone and how Amellia has felt about it all.

I know I have sang there praises here before but her new school is absolutely incredible. I really hope that her P4 teacher is as supportive and amazing as her current one. she is more than willing to give all the help, advice and everything in between that she can. I think that half the battle is getting the right teacher, especially when going through the process trying to get the right dose/medicine etc.

The first week Amellia was convinced that I had got her tablets mixed up with vitamins as she saw no difference in herself which is a positive. The only side effect that seems to be here at the moment is that her sleep has been effected, she has always struggled with getting off to sleep but this has made it a lot harder.
We didn’t notice any differences at home, but it only really works for a short period of time which is when she is in school. Her teacher though came out on the first day amazed! Said that for the first time since Amellia started the school she sat and wrote her spellings out all my herself without being prompted continuously to keep going and it was legible! They certainly were making some difference, and her personality was exactly the same!

Now we are up to 20mg to see if this helps her further and if it can help her interaction with peers and to sit for that little longer to be able to do worksheets etc in school.
Fingers crossed we continue on such a positive note with this journey!

-WeeOhana

 

10

The start of a new journey!

We started this year off with a rather big and unexpected thing.

Amellia had an appointment with a pediatrician to see what they thought and how to best help her in day-to-day life. Seeing as this was her first appointment I assumed that it was just going to be a chat with the paediatrician about our concerns, getting a first impression on Amellia and referring her on to a long waiting list if she thought necessary.
No referring on, no come back in a few months,  no we want to get in touch with the school and see what they say, we walked away with a diagnosis, a prescription and a review in 6/8 week to see how it is going.

Amellia got diagnosed with ADHD.

The pediatrician said that it clearly affects her every second of every day and that she needs the help as soon as possible to help her achieve all that she has. I was also told that they think she has dyspraxia, a social disorder, sensory issues and a learning difficulty. Though we are going to get her medication right and let her get adjusted to this before they investigate the others as this is the one effecting her the most at the moment.

It was a tough day for me as I said before I thought it was just for a chat. I suppose in reality we were expcting the diagnosis at some stage, but not that day and not along with the other things too. My mind is all over the show at the moment and sometimes I want to just cry and others im just so glad we have got her the help she needs and hopefully now once we have the medication sorted she will be able to achieve all she is capable at school and in life.

One thing that I am adiment on and that I made very clear to the pediatrican is that if I feel the medication is changing her personality I will be stopping it. I want it to help her settle etc but I do not want her bubbly and fun loving personality to go. She reassured me that we would find the right medication for her to keep her personality.

What I found incredibly amazing from Amellia and showed just how self aware she is was when the pediatrican asked her how she coped in school and Amellia said she wished she could sit still longer to learn and that she got annoyed at always having to move.

Amellia is aware about her diagnosis and about the tablets that will help. I have also made her very aware that it may take a while to get the right dose. We have also started a diary that we are doing together each night to keep a check on how it is making her feel and how she feels about it all.

Over the next few weeks I’ll share more as I come to terms with it and how the medcine etc works for her, how she feels about it all etc to help anyone else who is in or goes through the same thing.

-WeeOhana

 

16

Why telling Siblings is important

This is something that I feel quite strongly about. It is because when I was younger it was never explained to me what was going on, why my brother was treated differently, why he had his outbursts or why he treated people the way he does. Obviously back then I was very upset, felt excluded and very confused but now when I look back on how I felt I feel extremely selfish. That I really missed out because of not having someone explain to me that was going on and why he was being treated differently etc. Between me and my brother there is only one year and 8 days so we were extremely close in age and we were very bonded. I love him dearly and always will, especially now that I understand his ADHD.

Therefor I have made very sure to keep Amellia involved and updated with what is happening with her little brother. She is extremely tuned in with him though, She spotted before us things he was doing or that he wasn’t doing that she thought he would be doing. One day she compared him to a friends child who has autism, and asked if he would always be like her. She also got incredibly worried whenever he wasn’t talking and started to ask us when he would start talking or be able to say her name or anything at all. This was when we decided it was time to tell her that things were slightly different with him and that we can’t  put a time on when he will start talking or if he ever will. We are pretty sure that he will talk because he makes lots of different noises and sounds etc, but it is hard for her seeing her friends with brothers and sisters around his age talking, running about, going swimming together etc.

Whenever we explained it to her we kept it nice and simple, that he would learn in his own time and that we would all have to make changes. We didn’t say too much too her as we don’t have an official diagnosis yet and we also didn’t want to say too much and confuse her. So we told her a few things and then let her ask whatever questions she had and told her that whenever she had any questions that she could just ask us. The next day she came up to us and made me so happy she told us “mummy I don’t mind if Dylan is different, I love him anyway.” I had to sneak off to have a cry, it was just wonderful  an incredible thing for a five year old to have said.

I think it is incredibly important to tell siblings, they will then understand why you have to make differences for them, why there has to be changes and why certain activities or things they enjoy just aren’t as easy to do anymore and why when telling them off it has to done differently and allowances have to be changed.

We are incredibly lucky parents to have such an understanding daughter. If we have to leave somewhere because he doesn’t like it she is perfectly ok with that (as much as I hurt for her) if she has to wait till another day to go to the park because he is having an off day she is ok with that, if he wakes her up in the middle of the night, shes ok with that too. she will come downstairs and lay with me until we get him sorted. She really doesn’t get enough credit for how wonderful she is. I always try and make sure she gets to do the things she wants to do even if it is in a few days time, and that she gets to spend 1:1 time with one of us as much as possible so that she can go to the park and can leave when she is ready, so that she can go swimming, so that she can be a child and forget everything that is going on at home that makes her life so different to a lot of her friends.

This is the reason why I will always keep her up to date with what is going on with Dylan, so that she can feel included along the way and so that she can have as big an understanding as she can about him.
Special needs does not just change the child’s life who is living with the special need it changes everyone’s in the family.

We are all still getting used to the changes, his quirks, dislikes and likes, but we are doing it together as a family. Learning as we all go. I don’t think there has been a more relevant time to reinstate what my blog name stands for; Ohana means family, and family means nobody gets left behind or forgotten.

WeeOhana xxx