I hate Epilepsy!

Bella really did well in her last few weeks at her new school CARE. I was disappointed to have to stop for the Christmas holidays but at least we got a good 6 weeks in at CARE before the holidays. Hopefully she can take up exactly where she left off on 1 December – her Dads birthday. And what a birthday present she gave her Dad. At school she had the speech and occupational therapist working with her at the same time. They had her on a swing which she loves. Movement is very motivating for her. They we were swinging her and then stopping and prompting her by saying “Ready…. Steady…..” and waiting for her to verbalise for “…go..” to get the swing moving again. And she did it, repeatedly.. She didn’t say a perfect “go” but she used the “g” sound at the appropriate time. This is huge that she used sounds purposefully to get what she wanted. I hope this means that the gate to talking might be opening even with just a little crack. Because once it starts opening hopefully the gates will eventually open WIDE!!!!

In seizure news… Hmmm. As I mentioned previously we started weaning Tegretol last year and the EEG we did in May showed epileptic activity, although she hadn’t had a clinical seizure. So we increased Keppra and a follow up EEG showed some improvement. We increased Keppra again and the next EEG didn’t show any more improvement. So we then increased Tegretol again and changed from the liquid to the controlled release tablets. She seemed so much better so I really expected the follow up EEG to show improvement but alas still no more improvement. The EEG still showed activity although much better than the EEG in May. So her Neurologist said we should leave it as we shouldn’t treat the EEG and only react if she is having clinical seizures. For quite a long time I’ve noticed that she often stares into space and we have never known if this is a seizure or not. I was told by another Neurologist that when this happens to blow in her face and if she reacts then it’s not a seizure. I’ve done this and she does react. But I still wonder if it’s just so quick that if by the time I blow in her face its already over. Anyway after more discussions with her Neurologist we have decided to take her to Cape Town early next year to a well respected Epilepsy lab there to do a 24 hour Ambulatory EEG to see if we can get a staring spell on EEG while she is awake. All her previous EEG’s have been while she is asleep under sedation. Then we can make some better informed decisions. I HATE EPILEPSY!!!!

Photos.. finally

Leo caterpillar crawling

                                                     Bella looking pretty in her new costume

                                                    Bella and Leo playing together

                                             Max and Leo fall asleep in my car

                                                   Max gets his yellow belt for karate

                                               Bella enjoying a wagon ride and looking pretty

                                                       Max in his big school blazer for 2012

Whats been happening ....

Bella has settled nicely into her new school and is even going to school without her nanny. A huge step for both of us! So every day she is receiving ABA therapy, speech and occupation therapy. My view is that she will flourish in this environment which is so rich in the appropriate stimulation for her. We’ve noticed that she is more focused and also understanding more which may also be due to the increase in her Tegretol dose. We’ve decided (in conjunction with her Neurologist) to try to treat these abnormal spikes in her EEG even though she is not having clinical seizures. The reason being that her EEG was normal before we decided to wean the Tegretol and now it is not. Her last Tegretol blood level was in the very low therapeutic range so we have now increased her dose to around 23 mg/kg/day. We are doing follow up blood levels and an EEG on the 28th November.

Some new and cute things Bella has done:

• Respond to the command to “give” something by putting it in my hand

• More unprompted use of the “more” and “food” sign

• On the weekend she while I was getting dressed she went, unprompted, and fetched some clothes which she gave to me. HUGE!!!!

• Copying simple actions in speech therapy

Leo is such a darling and developing so quickly and easily. He is very mobile with what I call his caterpillar crawl where he pulls himself up on his arms and then lurches forward and repeats this over and over. Once he starts crawling properly there will be no stopping him!. Bella loves to play with him and observe him. It’s very sweet.  Was trying to add a picture in here but seem to be having problems with blogger and pictures AGAIN!!

In othere news Max got his yellow belt for karate. They grading 'exam' was so special and he was pleased with himself when he was awarded the yellow belt. I've got such a cute picture which I wish I could post.

This post about ghosts is one I can really identify with sometimes...

A stunning daughter

Bella has now been at her new school C.A.R.E for one week and it has gone really well. She seems to have settled in nicely and is exhausted when I fetch her which is a good sign that she is being stimulated a lot during the morning. The OT at the school said and I quote “You have a stunning daughter and I loved working with her. I feel that she has such potential!” I am so happy she is in an environment where her potential is recognised and challenged.

Max has been doing very well at school, particularly enjoying his extra cricket lessons. His coach said to me I have ‘a little super star’ on my hands. He is still completely devoted to Leo and a wonderful big brother. Just the other day he said to Leo “I waited so long for you”. Too sweet. Leo is also growing very quickly and he is sitting already. Amazing how quickly he reached that milestone. I think he is teething at the moment as he gets quite agitated and likes to rub his gums on my fingers.

I took all 3 kids for a studio photo shoot yesterday so am really hoping I get some great pictures of them. Leo was very cooperative compared to the other two. But I have finally managed to get some photos into my blog so here are some recent ones.

Another blog I have been following about precious Little Miss Hannah has really made me rethink everything about Bella. Hannah’s story could so easily have been Bella’s story and for a time we thought it was. I am so grateful to have my little girl healthy and from now on will stop worrying about the next milestone and just enjoy her as she is. Happy and healthy. My thoughts are constantly with Hannah’s mom and family!

A new approach

Lots has been happening in Bella's world. To start off with I have completely taken her off the Yasko protocol which may seem like a dramatic thing to do but I have been so uncertain about if ofr months and really questioning if it was the right thing for Bella. She has always seemed so mcuh better when she was not detoxing and then I went back to my blog in 2009 to see what I was writing before I started any biomedical interventions. From what I wrote she seemed to be developing at a faster rate. There may or may not be any link but I felt it warrented a trial period off the Yasko protocol.  So lets see what the next 3 months bring us. I am taking her to a homeopath and a Viral doctor, Dr Cecil Jadin, this month as I still believe her rotavirus vaccine had a lot to do with her seizures.

I have also not been sure what is the best thing to do about school for Bella. She has been going to a mainstream playschool since the beginning of this year and although it has been great from a socialisation persepective she has not been getting individual attention which is what she really needs. A new special needs school has opened up called C.A.R.E which sounds like it could be ideal for Bella. We are going to meet the Principal this afternoon to discuss Bella and whether or not CARE would be good for her. I am really excited about it as I think it could really be great for her and her speech and language development. They also have ABA therapy at the school which will be fantastic.

I keep trying to add photos to my blog and it just 'hangs' in the posting editor when I click on the icon to add photos. Does anyone have any suggestions?

Speechless

Well I have now been back at work for nearly 3 weeks and I can’t say I am loving it. At least it is only until lunchtime as I miss Leo terribly!

Bella and Max are back into the swing of things with the new term of school. Bella had her Grandparents concert at school on Friday and she loved it and managed to sit through the whole thing. Unfortunately no parents were allowed so I didn’t get to see her in action. Her end of year concert is at the end of October which will be fun to see. We have decided to leave her at Plumtree for another year rather than move her on to a bigger pre-school. We feel that she will do better in the smaller environment for another year. I was actually hoping for her to go to the Talkshop next year but the kids that go there have to be talking a little bit. Which she isn’t. Gosh, I would love to know what is holding her back with speech and communication L Will she ever talk??? Does anyone have a child who started talking really late??? I have scheduled a call with Bella’s speech therapist tonight so maybe she will give me some insight. Hopefully!

Back at work and on the blog

This update is even more overdue than the last one. I have already finished my maternity leave and started work on 1 September. Leo will be 6 months old tomorrow. Crazy how time flies. The last few months have been fantastic and so different to my maternity leave with Bella which was spent mostly in hospital and in Doctor’s rooms. It was wonderful to just enjoy a healthy baby and as a result I spent very little time blogging but only managed to keep up with the blogs I follow.

While I was on maternity leave I also started my own business. I opened up an exclusive children’s toy shop called Chasing Fireflies. I have employed someone to run the store for me while I am at work so my day to day involvement is now just on the buying and accounting.

We have had lots of news and development with Bella since I last updated. We had been slowly weaning Bella off her Tegretol and took her for an overnight EEG in May. Unfortunately it showed some epileptic form activity in her right temporal lobe. All her EEG’s for the last few years have been normal so this was quite upsetting. Her Neurologist decided to increase her Keppra and to do another EEG in June. The EEG in June was much better thank goodness. It still showed some “abnormal” activity but not epileptic activity in the right temporal lobe. Her Neurologist increased the Keppra a bit more and we did another EEG in August. In the meantime her Neurologist thought she may have a focus on her brain. The EEG in August was done by another Neurologist (for a second opinion) and again showed “abnormal” activity but this time in the central temporal lobe which he said meant she does not have a focus but rather a generalised epilepsy. He said the “abnormal” activity does not need to be treated and we should stay on the current dosage of Keppra and Tegretol. He felt that she may have a Channel Disorder but they only way to do this would be via genetic micro array analyses. These are not available in South Africa so we would need to find an overseas research laboratory who would be willing to do it for us. Is it worth it? I don’t know!

In the meantime we have been carrying on with the Yasko protocol. We went on holiday to Mauritius in August so I decided to give her a break from most of her supplements and just kept a few of the key ones on board. I don’t know if it was coincidence but she seemed much better with no signs of detox and now seems to be doing better in terms of understanding and getting glowing reports from her therapists. She is more focussed and her understanding of her environment seems much better. I am now in a dilemma as to whether push the Yasko protocol again, because in theory the more detox the better her future development, or to give her a break and let her consolidate with this current developmental spurt. Any ideas or thought from anyone especially anyone who knows the Yasko protocol?

Leo and Max are both doing very well. Max is besotted with his little brother and takes every opportunity to cuddle him and love him. It is very special to see. I have just loved seeing Leo develop and grow, although it has sometime saddened me to see how easy some things are for him compared to Bella. I try not to compare but it is difficult not to.

I tried to post a picture of Leo here but am having problems with blogger so will try again next time.

Long overdue update

This update is very overdue. I will try do a good post on what has been happening in the last few months with the most recent news first.

The first MAJOR news is the Bella is WALKING UNASSISTED! On 22 March she just decided she could walk. For months now she has been walking holding my hand for minimal support but just did not have the confidence to let go. Now she has and she is a natural. She is still a bit wobbly but can speed up, slow down, turn corners and stand still. We are ecstatic!

Leo Grant Nader was born at 38 weeks weighing 3.8kg on Wednesday 9 March via an unplanned c-section. I started having contractions at 36 weeks and according to the scan he weighed 4kg which is why the Doctor recommended a c-section. When he was delivered the umbilical cord was wrapped twice around his neck.... Scary!

He is a very easy contented baby. Here is a picture of him at 2 days old .

This is Leo just after birth when he was placed on my chest. Look how he is holding on to his Dad's hand. 

Here is our old spare room which was converted into a bedroom for Leo. I just love how this room turned out.

We had a photo shoot done by Grants Aunt Janet at home. I just love how this picture turned out of Bella and Max on the trampoline. It is such a natural picture which just captured the moment perfectly.



Bella started school this year at a school at a mainstream nursery school. Her nanny attends school with her and she is just loving it. I am sure a lot of her development over the last few months has been due to the stimulation at school. Bella also turned 3 years old in February. Here is a picture of her on her birthday at school where she had a birthday ring. Everyone in the class sang Happy Birthday to her. She loved it as can be seen by her face in the picture below.

Because we had to use the cot etc for Leo's room we gave Bella's room a makeover. Here is a picture of her big girl 3 year old bedroom with a double bed so we can lie with her at night. It was a big move moving her out of our bed.

I tried really hard to make a perfect GFCF diet birthday cake for my birthday girl.. It didnt turn out too badly. It tasted really good and looked pretty other than the big crack in the middle which I covered with flowers...

Max started big school! Here is a picture of him on his first day at school in January wearing his uniform. I cant believe how quickly he is growing up. He has had a really good first term at school and is loving his baby brother who as he says 'is just what he wanted'. Love you Max my boy!

This is a brief summary of the last few months. I am now on maternity leave so will be able to update more regularly.

Take care
Cath

I'll be back

I have been so hectic finishing up at work. I am due to go on maternity leave next week at 36 weeks and will be on maternity leave until 1 September. I promise to do a full update next week on Chrsitams, Max starting big school, Bella starting school, Bella's birthday and our progress so far with our biomedical interventions with Bella. Until then....

Cathy