Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Wednesday, March 31, 2010

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.


  1. Sorry to hear about Ellie's seizure activity on the weekend, hope she starts being stable with them so you can wean her off the trilpetil.

    I know what you mean about wanting to know whats causing problems so you can get onto the management of them, hope you get some answers soon and your ENT appt goes well.

    Frustrating that Ellie's thyroid is having probs. Good to hear they are on top of it and will now monitor it.


    Enjoy your week away! xx

  2. Love the weight gain. I hope that means no feeding tube for the little one.I'm glad the seizures meds are starting to work. Hopefully the little ones this weekend were just due to her cold and they will stay away forever now! So sorry to hear about her hearing. The good news is there are always options to help her. Hoping you find the answers you are looking for and find the perfect solution for her. Enjoy your vacation!

  3. Congrats on the weight gain! Mawaddah also gaining more than 120gram per week. Hopefully she'll be healthy and keep gaining weight!

  4. I don't know you but just wanted to say your daughter is so cute!! My daughter has hearing loss too due to an after effect of meningitis! She had tubes put in but that didnt help any! Please feel free to come check out my daughters blog!

  5. Hi Jolene, Thank you!!! Would love to check out your blob. What is the web adress?