Long Time Overdue

First and foremost Olivia's fundraiser was a great success and we are proud to say that 20,000$ was raised to help our little girl who has the unknown. Thank you to everyone who contributed to help us help Olivia.

A lot has happened since the event Olivia was in and out of the hospital twice for 10 days with her crying rages once again. As usual the only answer we get is that no one knows why she does this. Olivia cried for 16 hours straight one night and day and the doctors are not able to help, amazing when you think that men are going to moon and they cannot figure out a neurological disorder.

Basically in a nutshell we were told that we are not to take Olivia back to hospital is she has another outburst and that we are to learn to live with it, I'd like to see them live with it. So now the MCH has helped us find other resources to help with with some respite care for Olivia. We will be taking her for a 24hr stay at the Lighthouse, a beautiful homelike setting for families in need of some time to recuperate from difficult situations.

So another Brain MRI is scheduled for Dec 15, if this one is not cancelled due to hype for the H1N1 virus and how there are not enough nurses. Personally I will not inject my daughter who already has a low immune system with a deadly virus that her body will not be able to fight. So now Olivia is on 3 medications to keep her calm and to help her sleep, things have been a little calmer and we will do everything to keep it that way.

We are going to try to see if a doctor at the Schneider's Children Hospital in New York can maybe help us or at least try to. We will do anything to get answers and we will stop at nothing.

We will keep you posted.

Update

Hello everyone,

It has now been one month since Olivia is back on her meds and she has been doing well for the last week, no crying rages and has been reasonably calm, her sleeping is still a little troublesome but not so bad.

So the doctors are not sure why she goes into crying rages, they thought it may be migraines but have sort of ruled that out when the migraine meds stopped working. Olivia is now taking her Tegretol (anticonvulsant) as well as Risperdal (antipsychosis) to help stop the rages. The combination of the two seems to be okay but a struggle to try to give it to her 3 times a day. We hope that will help to stabilize her mood swings (typical girl i guess), the doctors say it may be caused by a lack of communication because Olivia is not yet able to speak. Who know maybe this maybe that, it is all we have been hearing for 4 ears now, just give us some answers. Everything is an unknown with Olivia. There have been 3 cases in the last 15 years like Olivia with her crying rages, get this one is now an adult and seen in a different hospital, one child unfortunately passed away due to other health issue and that leaves Olivia our medical mystery. And from what we are told the patient seen at a different hospital is 18 yrs old and still has her fits, let me tell you this is not something to look forward to if it last a lifetime. We are very grateful for the help that we are getting from the social worker as well as the neurology nurses at the MCH.

Well on a better note, Olivia's fundraiser is coming up and you are interested in attending send me a message at francapalermo@hotmail.com and I will contact you with the details.

Frustrated Mom & Dad

3yr old with Migraines

Well Olivia just spent another 4 days at the Montreal Children's Hospital. For the last 2 weeks we could tell that Olivia was not feeling well, she was very cranky, difficult to feed, did not want to sleep but we could not figure out the problem. My husband and I took her to the pediatrician 3 times to see maybe she had an ear or throat infection and she was clear every time. By the 17th Olivia was beginning to get out of hand with her crying and not sleeping we thought maybe she was constipated so we started with the Fleets and waited to see if she would get better. It was okay for 2 days and then started again so another Fleet and she calmed down, we figured problem solved.

On Monday night the 20th the yelling and crying was out of control that she cried for 4 hours straight and fell asleep from exhaustion, the next day we took her to the pediatrician and we wanted answers. The only thing he told us was maybe the constipation but that she seemed to very irritable. We took her to the Montreal Children's and had an abdominal x-ray done in which they would not give us the results and we asked for an abdominal ultrasound appointment and they gave it to us for DECEMBER 3, 2009 (can you believe it). We asked the girl if one has to die from the pain before being seen and she responded that we were lucky we got that date (what a great medical system). We took Olivia home and the evening was hell she just cried all night long non stop, and we were not able to console her at all.

On Tuesday night at around 2 am Olivia began to make funny noises in her sleep so we went to check in on her and she had vomited in her bed, I took her to the bathroom but she did not wake up. She kept have a jerking motion every time she vomited and this happened every 30 min. all night long. By 7am Olivia was still asleep and I was not able to wake her up, I picked her up brought her downstairs and tried to sit her down. When I saw that she was not able to sit on her own, and when you called her she would look at me but with no response I call my sister in law for help who then said to take her to the Children's. So I called 911 and within minutes they were at my door and whisked her to the hospital.

As I was explaining to the nurse what was going on all night, Olivia began to have the jerking motion again and what seemed to be a seizure, they rushed her to the trauma room where they hooked her up to ECG, IV, blood samples being drawn. Everything happened so fast it was crazy, finally we were told that we would be seen by Neurology after explaining 50 times what has been happening for the past few days and Olivia screaming bloody murder the whole time. Finally we were seen by Neuro and they wanted to examine Olivia, we refused because of her screaming and asked them to admit her or give her something to calm her down. By now we got to the hospital at 8am, it was 3pm and she was still screaming and was given nothing. Finally after my husband and I started to scream bloody murder and they gave her a dose of Phenobarbital which knocked her out for 3 hours.

This screaming went on for 3 days and a cocktail of medications were given to try to calm her down but nothing worked, by now she was frustrated we were exhausted and nothing was working. I kept telling the doctors that it has to be more than just constipation, she is literally pulling her hair out of her head. Finally their last resort was to try a medication for migraines and see what happened. I am glad to say that within 20 minutes she stopped crying and was calm once again. The crying started again and once again they gave her the same med and again she stopped, thankfully she has not had anymore episodes since Friday afternoon.

Hard to believe that a little girl who has already gone through so much can sustain this much. She was so aggressive during that time that her legs and butt are bruised from all the banging she did in the bed along the side rails. We are happy that she is better an now taking her Tegretol as well as Vitamin B2 (migraine prevention). So if this occurs once again we are to take her to the ER and have her get a dose of Maxeran (only administered by IV). Can one live a life on pins and needles everyday, but we make the most of it.

Olivia's Thank You

Hi my name is Olivia Palermo, I am now 3 ½ years old and thank you all ………..

For those of you who do not know my story I am a little girl who was born with the unknown. I am almost 4 years old and still go undiagnosed by doctors at the Montreal Children’s Hospital. I was born with congenital heart defect which was repaired successfully on May 1, 2008; I was FINALLY assessed at the Autism Clinic after being on a waiting list for over a year to be told that I do not fit the criteria for the Autism Spectrum, not to mention all of the Physiotherapy, Occupational Therapy and Speech Therapy that I do every week. All this is great but does not answer the questions that parent’s have as to why I am not able to walk or talk and cognitively understand certain things but not all and why my fine motor skills are at the level of a 9 month old.

With all of your help last year my parents were able to get me the help that I needed in order to achieve the goals that I have attained. I was not able to stand on my own and take steps and now I AM, I was not able to sleep due to absent seizures that made me cry continuously with an increase in behavioral aggression for hours on end and now without anymore medication I am able to say that I now have INACTIVE seizure activity as per an EEG done in Feb 2009. I attend daycare 4 days a week and integrated very well with the other children and the educator. My fear and hypersensitivity are much better but still need improvement. I still have a long way to go but with your help I am on the right road.

Olivia is beginning to come out of her shell, slowly but surely we are confident that with time and therapies she will be able to reach her goals. Olivia has come a long way since last year, what may seem trivial to others are giant steps for Olivia. Olivia laughs and smiles all the time, she loves to be hugged and kissed and has so much love to give everyone around her.

Please help my parents help me to get the treatments and therapies that are not covered by our medical system. My parent’s will do everything in their power to help me even if that means taking me anywhere in the world to try experimental treatments. No doctor’s are able to help in telling us what is wrong with me, so I am sure that any parent in the world would do the same for their child.

Thank you to all who helped and contributed to my getting the treatments and therapies necessary in order for me to be where I am today. Thank you for my smile, for my sleeping, for me being able to stand on my own, for being able to hold by bottle and for making me aware of what is going on around me every day. Help me to continue to get everything that my parents are trying to give me.

Olivia Palermo

(If you do not require tax receipt)

Fondation Minorite inVisible

(If you require a tax receipt)

3245 Hector Lussier

Laval QC H7C 2S4

Thank you
Francesca, Luigi & Olivia Palermo

www.helpushelpolivia.com

Fundraiser 2009

Hello All

We would like to inform you all that we are organizing Olivia's 2nd Annual Fundraiser event on October 3, 2009. The details and where and how much will be established by the end of this week. We hope that all who attend last year will join us once again and all those who were not able to attend will do so this year.

You all donate from your pockets as well as your hearts to help us help Olivia attain the goals that she needs in order to be a normal almost 4 year old child with the unknown in medicine.

we will keep you posted on the progress of the event.

Franca, Luigi & Olivia

Olivia May 2009

Olivia is doing well and climbing everywhere and getting into everything. Although she is not able to walk on her own yet, she finds ways to get around the house. We are very grateful for the progress that she has made and we are hopeful that she will continue to progress.

We have seen great things happen with Olivia since her treatment that we have decided to take her for another treatment in June 2009. I am so confident that these treatments are what is giving her the ability to pull to stand, and climb the steps on her knees and just the vibrance in her. Lets not kid ourselves Olivia still goes through nights where she doesn't sleep and her wake up time is 5am every morning. Olivia does not speak therfore making communication very difficult, what she does is whines most of the time, but I guess that is a form of communication for her, but drives me and my husband crazy.

We felt that as parents we could not wait until October to take her back to the DR, therefore we are jumping the gun and hoping that the next fundraiser will help us. Olivia will be screened once again for ANGLEMAN SYNDROME and we will see where that takes us. She was already tested but the reasearcher feels that we should have further testing done. We take it one day at a time and enjoy every second that she makes us smile and cry...

Neuro Test Results

On March 12, 2009 Olivia underwent 3 neurological examiniations under sedation. Olivia had an EEG (tests seizure activity), ABR (test the ears and cranial nerves for auditory function) and SER (for sensory issues).

I am pleased to announce that the results for the ABR as well as the SER have returned NORMAL, which is great news. But I am even more happy to announce that Olivia's EEG returned with INACTIVE EPILEPTIC ACTIVITY, which is great news.

On March 3, 2009 Olivia received her last dose of Tegretol (anti-convulsant medication), and we were terrified that the episodes would start up again. Much to our surprise or not nothing changed, she was a little fussy for the first few days which is a normal reaction. Now almost a month after and she is doing great, we have not had any prior episodes that we were having in the past.

Although this does not answer our questions as to what Olivia has or why she is struggling with her development, it proves to us as parents that the treatments were a great success of relieving Olivia of her absent seizures. We are not out of the woods yet, this can always recur but we are confident that if we continue with the treatments the chance of recurrences are reduced.

We are glad to have shared this news with all of you.. and on this note we will begin planning for an October Fundraiser event and keep you posted.

The picture that I have inclued was taken the day of her examination March 12, 2009 at the Montreal Children's Hospital.

The Palermo's

Neuro Follow up

Olivia had her neurology follow up on February 3, 2009 and the doctor was happy with the improvements that Olivia had made. We have also finally started taking her off her medication (Tegretol). She was put on Tegretol in December 2007 when she began to have uncontrollable crying tantrums, the doctor's were not sure whether they were a form of seizures or just a mood problem. Well, we are happy to say the crying fits have stopped and now she cries like any other normal child. It will take us 4 weeks to take it off it completely and then we will see what will happen.

Olivia is scheduled in a week or two for an ABR test as well as another EEG to verify for any seizure activity. We are very confident that Olivia is doing really well and that there are NO SEIZURES, well at least we pray that there are none.

Olivia is still progressing nicely, still doing all the things she was but just with much better precision, she is learning how to control her body movements. I will update you all after the test results are in.

Franca

2009

Happy New Year to all.

Well I guess it's time to update you all on Olivia's progress. Olivia is doing really well and is progressing nicely.

- she is able to stand on her own near a wall with some support.

- she is able to take more steps from side to side always holding on.

- she is constantly pulling herself up to stand wherever she can.

- her understanding is much better, we realize that she understands allot more than we give her credit.

- she enjoys playing with others, something that was not easily comprehended in the past. If you ask her to do the horsey she will start to do the motion on your lap and get very excited.

- she will initiate some sort of play, which in the past there was no initiation.

- her fear of everything is a lot better, much easier to make her feel at ease.

- she is a little girl who is coming out of her shell slowly.

- and always has so much to babble about. constantly calls for her papa (real daddy's girl)

We are so grateful for all these changes that we have seen and will keep you updated on further progress.