So  I have had many of you ask about the Ohtahara gathering and what exactly it is for, This will give most of the Ohtahara parents and families the first chance to meet with other parents going throught the same chalenges and treatments, but it will also be a chance to get great information from guest speakers regarding testing and other thing relating to such a rare syndrome. For us and most families out there there has not been given a reason as to why our kids suffer from this horrible syndrome and to be able to get in contact personally with people in the field that are doing testing and different types of treatments is extreamly important.


                    OHTAHARA SYNDROME GATHERING

EVENT DATES: FRIDAY, JUNE 28^TH- SATURDAY, JUNE 29^TH

LOCATION: OMAHA, NEBRASKA

DETAILS:

An event organized by Aarons Ohtahara in honor of the families with children who have Ohtahara Syndrome. 

It is our hope at Aarons Ohtahara that this event will be a memorable, positive, and wonderful experience for the families attending.  This event will allow those attending to meet with other families who share in the experience, tears, frustrations, joys, fears, and love that go along with an Ohtahara Syndrome diagnosis.  It will also be an opportunity for families to meet face to face with medical professionals in the rare disease community that are dedicating their time and careers to not only Ohtahara Syndrome, but also to pediatric epilepsy.  Last year families were given an opportunity to participate in a research project through Boston Childrens Hospital and a team from this research program plans to attend the event, with the hope of sharing information about the research conducted, results, and to be available to answer questions face to face with the families.  Sanford CoRDS (Coordination of Rare Diseases at Sanford) would like to attend and share information about their rare disease registry.  More topics will include the possibility of further research opportunities regarding OS.  An opportunity such as this can really strengthen our community, in research, support, and awareness.

www.ohtahara.org

Frustration and excitment at the same time

Im having one of those frustrated to the point of just wanting to cry kind of days... Its actually been a rough couple days. Aiden has seemed to somehow regress in his head control and that has to be one of the most frustrating feelings. We/he has worked so hard to get to the point where we had decent but by no means perfect head control, which is such a basic thing to most families .. but we are constantly fighting to gain it, and with aidens torticolis it makes it even more important but also hard to obtain. For the last month or so he has seemed to really regress, not holding  his head up and in fact be holding it down on purpose. Ive gone throught the well he was sick, hes trying to get his hands ect and it just hasnt gotten any better regardless what we try... So its like taking god knows how many steps backwards.

To the normal person it dosent seem like such a huge thing ... but you would not believe how much revolves aroung this ...  We just got done at a feeding appointment which was frustrating and exciting all at the same time. They give you the pending loom and doom conversation, but for right now everythings ok and we can start feeding him normal foods pureed!!! But as you get exciting news about being able to progress a little you are also given the speech that as he gets older and his nutricianal needs and his body grows it will just continue to get more unsafe and basically they are preparing us to need to someday go from feeding to tube feeding. Something I want so badly to not have to do because he gets such enjoyment from eating .... But they explain that because he dosent have the head control and his torticolis makes it harder for him to eat normally and his muscles in his mouth are working a lot like his outside body in regards to movement or lack of ...

It just is so frustrating... you work so hard to get to a point in something and usually its celebration that you got to this goal and now you get to move on to a higher goal... you have a sense of accomplishment and it just dosent work like that ... you work so hard and then all work put in dosent make a difference or is lost at a moments notice.... and it effects EVERYTHING.... Uhhhhh pitty party over...

The good news is for now we are able to give him FOOD!! not baby food from a jar but real food :p this has been my goal for so long and for now we have finally reached that point!!! He will still get most of his calories/nutrician from his bottles but i can give him anything as long as it is the consistency that he needs Which is Sooooo very exciting!!! :p

Update 1/16/13

Always behind on my posts but here is our update ;)

Man we have had a busy couple of months again, of course withe the holidays things are always crazy. Aiden had a great 2nd Xmas and new year! Definitely something we never thought we'd get to see once but now twice ;)

The big news if you didn't get a change to see on fb is we finally finally after 10 months and 3 weeks of non stop calls and me having to get angry a couple of times we GOT AIDENS CHAIR!!!! Wahoooo!!! So amazing to be able to take him out and have him be able to be comfortable and be a part of everything happening around him. He really seems to love it and we are slowly starting to get used to it and how it works and getting faster at assembling it. We are however still waiting for aidens stander ... Uhhhh another fight on my hands but until then 1/2 way there!

Aiden is doing pretty well, this last week was rough as he started having an increase in seizures without a huge reason, I believe it to be maby a combination of teething and constipation and so far the last couple of days have been good so I pray that continues. And to just update usually aiden is seizure free and is on 2 seizure meds that seem to really work well for him. I no longer keep track of seizure free stents and just try to enjoy them because it really rocked me when we would have a seizure and ruin our count down ... So now we keep track of seizures and leave it at that.

Tomorrow aiden has an MRI scheduled and mommys a little worried as they have to sedate him for it. He's never been under sedation and I hope he does okay. I also hope that this MRI may show us a reason behind aidens Ohtahara syndrome but I'm not getting my hopes up. I'm at peace not knowing.

We will also in a short amount of time be celebrating aidens 2nd birthday!!!! I am so excited for this new milestone ;)

So much has happened! Update 12/10/12

Sorry for the delay in my posting ! So much has happened...

After aidens last EEG we had a follow up appointment with his neurologist. It didn't quite go as I had hoped, in going through the EEG findings the neuro decided that in fact there was a very little change in aidens brain activity right before one of his breath holding spells. It was t clear seizure activity but because there was a change it made him lean more towards it being a seizure, my heart breaks beacause call it motherly intuition but I knew all along that they were. Which means he hasn't been as seizure free as we had thought. I am glad that our neuro was so thorough and decided to try him on a fairly new seizure drug that has proven to work well, so again we try another drug. The only godsent with this is being as active and close with the other os parents I have heard of the drug and knew other kids were in it with good results, I also feel so much more informed and able to know what the dr is doing therefor I feel like I have a better say in his care. I guess it's a little bit of control in a otherwise completely uncontrolled situation. So we started the new drug and low and behold within days the breath holding seizures have stopped.... We are now dealing with horrible bouts if constipation but we take what we can get...

Therapy has really picked up and changed for us, it was approved to Add addition private therapy in addition to his early intervention therapy which is great ! We went from 6x a month to now about 2x a week which is great but also very time consuming and with 1/2 of those therapies at their center it makes for some busy running around! I am pleased though that we were able to get him more help.

Other than a couple ear infections and colds aiden seems to be fairing really well on the medical front which I could not pray hard enough for, one of the downsides to meeting all these great and wonderful families that are plagued with the same syndrome is that you get to know them like family and the cold and flue season is the apsolute hardest on our kids, a simple cold turned I to pneumonia and just wreaks havoc on their little bodies, just in the last year I have had to hear of so many hospital stays and scary situations and watching as families are tore apart by the loss of their beautiful little girls.... It rocks me emotionally like I never could imagine and all I can deal is horrible grief and fear... Fear that I am watching what will some day be aiden, his body too tired from the havoc that the seizures do to his body. I have to just put it to the back of my mind and with every little angel we loose it gets harder to do... It just become such an overwhelming thought in your mind of all the pain the families and kids have to go through ... Just so unfair...

On a happier note the opportunity has come for all of us families to get together and meet In person! Something I could never even imagine could happen, they are putting together the first ever Ohtahara syndrome get together the end of June and come hell or high water we are going to try to scrape every dang penny together to take our family to go meet all of these amazing people we have come so close to, and of course to love and hug on all the wonderful os kids!!! I am so excited !!!!

So for now we are gearing up for Xmas and bringing in a new year !!!

EEG results

So the EEG went well. Aiden did really well he was a happy boy and we had several nurses come in from the floor to say they had to see who was talking up a storm ;)

So he also was a good boy and had several of his breath holding spells , one of which our neurologist helper got to witness. They agreed, wow those are quite the fit but they are not seizures!!! It is so great to get a for sure answer and not constantly be in doubt.

The neurologist also said he's very happy with aidens EEG, although it is still abnormal and has seizure causing activity, that his brain is developing which is terrific news because that gives him the opportunity to develop which is of course all I can hope and pray for!!!

We are extremely lucky he is doing really well, is happy and has quite the little personality ;) our next step is to start cutting back on his seizure med and see If that gets us any more ability to develop, a scary thing to do but the less meds he's on sometimes the better, it's just finding the right levels that keep his seizures controlled but where he's not sedated and unable to develop.

Thank you again to everyone who still keeps tabs on us, we really appreciate it!!

Thoughts needed for tomorrow

So tomorrow me and Aiden are headed up to Doernbeckers for a 24hr eeg in hopes that we can see the breath holding spells and rule out them being seizures or not. This will be the first time we have been in the hospital since he came home... I am freeking out!!!lol I am having anxiety that something is going to happen and we are going to be stuck there again for weeks ... I know this is probably not going to happen but the possibility is always there. Just be thinking of us and hope that everything goes according to plan and that we see a seizure and also a breath holding spell so we dont have to do this for a long time again lol

Thanks in advace for everyones good thoughts

Update 9/28/12

So not much to report. Aiden is doing amazing ;) seizures are little to none I've really lost track and have stopped hanging on the date of the last one.

We are trying to replace his bottle meals w baby food and he loves it most of the time.

He is slowly doing little things like grabbing something, and is extremely close to rolling over. His favorite thing to do is bounce on his knees while you hold him and were working on him being on his hands and knees.

We have scheduled a video EEG on oct 9 and it will require an over night stay. I'm starting to have some anxiety about having to stay at the hospital... It's scary what could happen and all I can think is something is going to happen and their gonna want to keep him longer... But on another note I hope they finally capture one of aidens breath holding spells and we finally know for positive if they are just that or seizures.

We're also still after 6 months waiting on aidens special stroller/ wheel chair and taking him anywhere is starting to become really hard.i cannot wait to get it shoes more supported and comfy while we're out

Really that's all that's going on, we're busy with school (all 3 girls) and kaila is playing for 2 softball teams this fall season so were always at games or practices