Neurology & ENT Update

Today was a busy day, first up we had a neurology appointment. This was just to see how Ellie was going since we introduced her second seizure med, Kepra. Ellie is doing really well, aside from some seizure activity saturday night and sunday morning, she has been good since being on both trileptil and kepra together. The recent seizure activity would be because she is battling a cold/cough at the moment, so not to concerned about that. Our plan is to keep Ellie on 2 meds over the next few weeks as she is doing so well on them.... then we may thing about slowly weaning the trilpetil....we dont have to see our neurologist for 7 weeks, which is a good sign, as we were having to go monthly and fortnightly at one stage... Fingers crossed Ellie behaves.

Today we also had a ABR hearing test, this wasnt so good. At Ellies last ABR which was in August 2009, her hearing loss was at about 50db (which is classified as a mild-moderate hearing loss) Today her hearing had only slightly improved and her hearing loss was at about 45db (this is still mild, yet very close to moderate hearing loss) The audiologist checked Ellies ears, the tubes are still in, they are clear not blocked, and there was no wax blocking her ears.... so my question was... Why does Ellie still have such a definite hearing loss?? She couldnt really answer me, but did say aside from fluid there can also be other problems for hearing loss such as incorrect bone formation in the ear etc, and you can do MRI's, catscans or Ultrasounds to check if there are any other reasons.

So.... Most of you that know me, know that I always deal better when we have answers for Ellie, answers make it easier to know what you are dealing with and how to tackle them. With saying that I have booked a earlier appointment to see our ENT to discuss this.  I want to DO these tests, and I want to find out a reason for Ellies hearing loss. Once we have a reason, then we can work on what is the best course of action for Ellie.

We also got Ellies blood test results back this morning. Considering her diet is so small and limited, i was quite surprised when it came back that she wasnt deficiant in any vitamins or nutrients. However it did come back with something that we need to follow up on. The blood test was also checking her thyroid.  Basically Ellies thyroid is producing too much of a particular hormone, this normally happens when your thyroid is about to fail or pack it in (this is what the pead said) he said not to be too concerned but we will need to check it in about 3 months.

On a positive note, yesterday Ellie got weighed again and had put on 100 grams.... WOO HOO!!!

Phew... now that is all done, I am off on a week holiday to beautiful Newcastle with Luke and Ellie... It is a long overdue break... so wont be blogging while I am away.... But im sure I will have heaps of photos to load on my return.

Sick again.... but looking forward to a holiday

Ellie unfortunately has caught the 'cold' that is going around... however even though she was a bit under the weather on Sunday and Monday all she could do is laugh... so she still had good spirits...

We had physio this morning which Ellie did brilliantly in, she was happy to sit for 3o seconds or more and look from left to right whilst doing this, she was also happpy to do tummy time and be up on her arms.... all this whilst a bit sick. We also have a new 'lecky' standing frame which we are trialling, this supports her bum and hips alot better so we are going to use this over the next month and see if this is the right one for her. We want one that supports her, but not too much as we also want it to make her work.

This afternoon she is a bit more under the weather, she is very congested, and when in bed she just coughs & coughs & coughs to the point where she throws up... poor thing...

BUT... on the UP side, the 3 of us are off to Newcastle tomorrow for almost a week to see Lukes family, so we are very excited about that!! Lets hope Ellie can kick this cold sooner rather than latter

Alot of the WHS kiddies seem to be sickly at the moment, heres hoping the are back to their normal selves soon.

Lots of interest & support...

This week I blogged and facebooked about 'A Run for Ellie' which is an initiative by two friends, Jeff & Tracey, to run a fun run to raise money to assist with Ellies medical, specialist costs etc

Originally this was going to be run by the 4 us... This looks like it is going to grow. There has been quite a few people come forward who have said they will also run, and some are walking. There has also been alot of requests for the flyers, and offers from people asking how they can help.

We really do appreciate all the support!!

There are thoughts at this stage to do a BBQ breakfast afterwards on the yarra for all involved... This would be a great way for us to catch up with everyone after the race. So I will keep you all updated.

If you would like a copy of the run flyer emailed to you, please email me at

melissa.young80@yahoo.com.au

Who knows when the right time is... time will tell

Today we caught up with Ellies peadiatrician to chat about her weight loss, what his thoughts were and what to do about it.

His thoughts are similar to mine, Ellie is little and will always be little, and its hard to know what weight she should be because of WHS. That is not the problem. The problem is her weight loss. He went into detail about a Nasal Gastric tube, about the pro's & con's associated with this, and it really shed some light on this path, if we have to go down it.

At the end of the day a NG tube is only going to help Ellie put on weight if this is something that she is struggling with, and in turn this is only going to make her stronger. It also takes some of the pressure of Luke and I, which on a daily basis we are constantly stressing about what Ellie is or isnt eating, how much milk she is getting and how many calories we are getting into her. (which at the moment I am stressing about) Last night for dinner I actually gave Ellie cheescake and custard for dinner, just to fatten her up... She LOVED it!!!

The NG tube feeding is also run how we want to run it, so if we still wanted to feed Ellie 3 meals a day and use the NG tube as a back up to give her more, than this is ok too. We dont have to soley rely on the NG tube for all her feeding. This I feel would work against us, considering that Ellie is not the greatest eater already, I think she would get used to the NG tube, and if it was only short term, then we would have problems feeding her normaly latter on down the track.

I also discussed pedisure, and giving this to Ellie instead of her higher calorie formula and adding it to her food... this is something that needs to be discussed with her dietician, so am waiting to hear back from her

Today Ellie also had a blood test to check if she is deficiant in any vitamins or nutirients. Considering Ellies diet mainly consists of weetbeix, cream, custard, banana, milk and the odd small amount of lasagne or tuna mornay, we need to ensure because of the lack of variety, fruit, vegies etc that this is not having a effect on her. We get these results back Friday. I also think her pead was checking her thyroid function aswell, to make sure this has nothing to do with her weight loss.

So... I dont feel that we have answers regarding Ellies weight loss, but I do feel a bit clearer & positive about the road ahead if she keeps loosing weight, and what would be required.

The plan from here is that we will continue to feed Ellie whatever she will eat, and if that is custard so be it... no one died from eating to much custard. We will continue to get her weighed weekly and be in regular contact with her peadiatrician.

I really do hope that Ellie goes up from here and that a NG tube is not needed, but at the end of the day we just want what is best for her.

A run for Ellie - 9 May 2010

A few months ago a couple of friends, Jeff & Tracey put forward an idea to Luke & me. I used to work with Jeff before I had Ellie, and we formed a freat friendship, which has still continued on since me leaving work and having Ellie. Tracey aproached us with an idea a few months ago, this all stemed from a saying that Tracey had heard which was "It takes a whole village to raise a child"

Their thought was that they wanted to help with Ellie, and provide some support but they couldnt do this on their own. Their idea was that they would partake in a funrun and try to raise funds to assist with Ellies specialists, medical, therapy & operations costs etc. So what started as an idea has now evovled into "A Run for Ellie" This will be a 4km fun run on the 9 May that Jeff, Tracey, Luke and myself will all be running... well we will start to run, and hopefully we can keep it up for the full 4km

If you are interested in seeing the flyer, please email me at the below email address and I will forward you one.

melissa.young80@yahoo.com.au

Watch the blog for updates, photos of after the fun run, and details of the success of it.

A dream of mine before this run came about was to set up a charity that helped not only Ellie but support other WHS children and their familys. This is a long term goal, and I dont even know where to start to set something like this up let alone maintain it, so there is alot of homework that needs to be done before this dream becomes a reality. Its on my long, evergrowing 'To Do' list.

Never far from my mind...

Having a child with special needs I find that somewhere amongst all my thoughts for that day or that week, there is always a thought, worry, concern about Ellie, thoughts about how WHS affects her, me, us our life.

The reality is, this is our life.... Ellie has WHS, Ellie does have special needs, there is no escaping that. However sometimes I would love to escape the worry, concern, looks comments etc. I try, I do... but those thoughts creep in when you least expect it. Lately that has been between 9pm and 12pm.

I try to switch off and that is easier said than done.. but that is my goal for the moment, to try and not worry to much about Ellie and just let Ellie be Ellie.

A weight issue (or lack of)

As you may know from my previous blogs Ellie has decreased her milk intake and not really increased her food intake. Not a massive isse, but we were monitoring her weight over the last 4 weeks to make sure she isnt loosing weight....

Yesterday we had another weigh in... verdict... weight loss again. Not heaps, only 80grams, but when she has lost weight every week, 4 weeks in a row then it becomes a problem.

We always knew Ellie would be little. I specifically remember when we received Ellies genetic testing results, the geneticist said that Ellie could eat PURE mars bar and never be overweight.

Im ok with that... I just dont like it when she looses weight, as she doesnt have much to loose.

I have had a method over the last few weeks to help her gain weight. This was to add full fat double cream to everything she ate... this obviously didnt help

I know have a appointment with her peadiatrician next week Wednesday to discuss her weight loss. What this entails, I do not know... I hope he has some options, to help with weight gain. And I hope they are options that do not involve NG tube or a PEG. I am hoping we have other options.

In the mean time, I will keep pouring calorie packed cream over all her food.

Many people would love to be able to eat what they want and not have to worry about putting on weight... Oh how they would be envious of Ellie

Just some new pics.... enjoy!

This weekend was a cracker weather wise.... so we got to get out and enjoy some of the nice weather with Ellie. On Saturday Ellie and I went to a farmers market. I was hoping to get Ellie up and close to the farm animals. We get her to pat the cats at home and she quite likes that. But unfortunately there were so many kids in there it was going to be hard with little Ellie. Oh well, maybe next month.

Luke, Ellie and I also went to a food & wine festival on sunday. Ellie loved it, there was so much going on, so many people, and things to look at. There are some pics below from the food and wine festival.

One thing I found hard though this weekend, is looking at other kids around Ellies age, running around, playing on play equipment, in with the animals walking around patting them... I makes me wonder, will Ellie ever be able to do all this?? Time will tell wont it... In the meantime we will keep helping Ellie be the best that she can be with therapy and play time.

Neurology Update

Today Ellie and I had an appointment with Ellies neurologist. All went well. He used an analogy that helped me understand Ellies EEG; refering to fire, and that Ellie had a smouldering fire with lots of smoke, but it wasnt a big fire yet. But at any time could turn into a big fire (Which means a big seizure) This means that her current medication is not providing the seizure control that we would like.

The EEG also showed that this time Ellies seizures are generalized, which means that they are coming from the whole area of the brain, compared to her EEG last year, which showed that her seizures were partial seizures (focal) which is seizure activity that originates in one part of the brain.

So the plan now is to take Ellie of Trileptil and put her on a new medication, Keppra. This however will take a few weeks as we slowly introduce the new one and decrease the other one.

Was I OK with this plan? Yes

Did I trust our neurologist? Absolutely

Was I nervous about this plan? Yes

The reason being I LOVED how trileptil worked with Ellie, she had personality, she laughed, she smiled, she was developing.

Thats not to say that this medicine wont work with her like trileptil did, but I dont want to see her go back how she was. The good thing is Luke and I know what to look out for this time.

I am hopeful that this is the right medication, but at the end of the day, all children are different, all seizures are different, all medications work differently on different children... its a matter of finding whats right for Ellie.

I am going to be in contact with Ellies nero to update him on how she is going and we have an appointment to review her progress in a few weeks.

EEG & Weight update

Looking at this photo, Im sure Ellie is thinking "Mum are you sure about this thing"

Today Ellie had her EEG, after I got over the my amusement of how she looked with the hat (Cruel I know, but how could I not laugh) the EEG went really well. Ellie started off watching Hi Five and sitting in my lap, after about 10 minutes she started to crack it, so gave her a cuddle and she fell asleep in about 2 minutes. This made the rest of the EEG rather easy, as they need to be rleaxed whilst they are doing the reading.

Ellies neurologist popped in whilst she was having the EEG. Basically what the EEG showed was that there was some sort of seizure related activity going on. This means that Ellie will now need to be on 2 medications to control her seizures, as the one that she is currently on (Trilpetil) she is already having the maximum dose she can of that. We have an appointment with Ellies neuro on Friday morning to discuss this.

This morning Ellie also had her weekly weigh in to make sure she isnt loosing too much weight considering she is still only drinking about 1/2 the milk she used too and not taking more food. Today she weighed in at 6.61kgs, which is down from 6.7kgs last week and 6.8kgs the previous week. Not too concerned about this (yet...) as she weighed 6.8kggs on the paediatricians scales and the last 2 weighs in were done on the maternal child health centre. So as there can be some variance between scales I am not counting the first one... lets see how we go at next weeks weigh in.

Ellies physio also thinks she has found a standing frame suitable enough for Ellies height, se we are waiting to see if this is in use at the moment, if its not then we could borrow it for 1 month to trial it and see what we think.

Grommit surgery update and MORE

Its been 3 weeks since Ellie had her grommits in. We havent noticed a drastic difference, but I think she is definately hearing more. Its bizare we call her name and she doesnt respond, but if you whistle, she laughs. Will have to wait and see...

Yesterday we saw her ENT, basically all is good, the tubes are still in, (I even got to have a look) her left ear has a very a small amount of moisure in it, so that just means drops in her ear for 10 days. I also requested a ABR (Auditory Brainstem Response) which will be done at the end of March. We did a hearing test last week with Ellie, but it was the one where we sat in a booth and noises came through the speakers and Ellie was supposed to realise once she heard a noise to look right and she would see a puppet. Developmentally Ellie was not ready for this kind of hearing test, hence why I have requested the ABR. The only problem with the ABR is that Ellie has to be asleep for it. That shall be interesting!!

We are also going to schedule a EEG (Electroencephalography) this is to see if the strange things Ellie is doing (shaking head constantly & forming a half circle with her arm and moving it side to side) is seizure related. We are waiting on a date for this.

This week from our physio we received a standing frame to use with Ellie, The only problem with it is Ellies size, as she is so small, it doesnt hold her exactly as it should. However the plan is for me to use it with her for the next 2 weeks and see if we can get away with it, and in the meantime our physio is going to see if there is a smaller standing frame available. Ellie quite likes the standing frame, however only tolerates it for about 5 minutes and then gets tired, she looks quite chuffed that she is standing up. I am hoping this will really improve her overall strength.

Here are some new pics, mostly of Ellie doing some therapy work, showing off how strong she is getting..

If Ellie could talk, im sure she would say "Excuse Me"

Lately Ellie has been doing a few strange things; which are shaking her head constantly from side to side, forming a circle with her mouth, and forming a half circle with her arm and moving this side to side. We were unsure of wether it was seizure realated. I spoke to her neurologist today and the plan is to give her some extra meds today to see if it reduces these things.... if not then we could look at doing an EEG to see what is going in that little head of hers...

However I thought If I could video Ellie and catch her doing these new things and email this to her neuro this may help, so today after lunch we got the video out, half way through me recording, Ellie belches out the biggest man burp.... I couldnt help but laugh, which caused Ellie to giggle...

Check out the video yourself. Luke would be proud of this burp!!