good bye ACTH

That is it! All done!

Emily had her last shot of ACTH yesterday (Tue)

24 hours without it has already made a difference. We have seen more smiles and more of her personality.

Emily started ACTH on Feb 4th and has been spasm free since day 8 of the shots. Almost 8 weeks with no seizure or spasms has been fantastic!!

She is sleeping 8-9 hours at night! Not always straight but when she does wake up usually a diaper change and repositioning does the trick. She takes melatonin and a little valium, we finally found the magic combination.

She is happier all around. The past month or so she began grunting when you did anything to her that she did not want to do, which was pretty much everything. The grunting went down a lot just in one day.

Her eating has not changed either. Many kids go on a food strike when coming off ACTH but Emily's appetite has not changed thankfully because she is only in the 5th percentile of her height and weight. We need to beef this girl up! She looks like a chunky girl but she really isn't.

I am just so thankful she is such a good eater. She is still eating 100% by mouth. Only meds and water in her g-tube. We try giving her water by mouth after each meal but she does not like it and tends to choke. We are working on it though.

We have so much to be thankful for. I know that in a heartbeat all of this can change. I am aware how vicious and mean epilepsy is. I am also aware how strong my little girl is and we are celebrating each day!!

We are praying this continues.

Get your purple ready!

Saturday is Purple Day!

This is from the website..Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2010, people in dozens of countries on all continents except Antarctica worldwide participated in Purple Day. With your help, Purple Day 2011 will be even bigger!

If you go to the website you can see many ways you can help.

If you chose to wear purple don't stop there, talk about it! Tell people why you are wearing purple, tell them Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Tell them epilepsy keeps getting research funding cut.

Look up your local epilepsy foundation and see what you can do to help. Do a fundraiser, involve your kids, co-workers, family or school. Educate yourself on what you do if you witness a seizure epilepsy.com is a great site.

There is SO much information out there!

This is last years purple day picture, my goodness how things have changed!

Emily has 12 more days of ACTH shots left. She is doing very well with the wean. We are seeing a little bit of her personality each day. She is still not sleeping well but that is not new :). She woke up yesterday at 4:30am but she was so happy and smiley. I have missed those smiles so much!

My cousin got Emily this shirt from the facebook page polkadot whimsy, isn't it cute!

It has been almost 6 weeks since Emily's last spasm, I can hardly believe it. I get scared saying that, afraid that "they" will return. We don't know if or when they will ever return but we cannot live our lives in fear of "ifs and "whens" so we are celebrating Emily.

She is an amazing little girl and I am lucky to be her mom.

beginning to wean

We have begun to wean ACTH. We are holding our breath, praying and crossing our fingers.

It will be a slow process, about a month.

Since being on ACTH Emily has definitely regressed in most areas. She does not open her eyes all the way, her cvi has really gotten worse,she stopped smiling and being happy in general, she does not tolerate ANYTHING, and her sleeping is still crappy.

The only things that got better are eating and seizure control. We still have not seen any seizures or spasms.

She has been doing a lot of grunting lately. We took her to the pediatrician just to make sure it is not something respiratory and it was not. They said it was seizures-HOWEVER- I can stop what she is doing and the rule of thumb is if you can stop the movement it is most likely NOT a seizure. I called her neuro and he agrees and we have an appointment on Tuesday. ACTH has so many side effect the grunting is probably just one of them. At least I am praying so.

We did see a smile two days ago! It was just one but she has had at least one per day since we began weaning.

Loving this little grin!

Please keep praying that the ACTH is working and will continue to work!

Baby shower and acth

This past Sunday we had my sister's baby shower.  Amy and I are only 19 months apart and have been very close for most of our lives. We have had times in our lives were we went in different directions but somehow we always end up going in the same direction eventually.

Here lately me and Amy have had to depend on each other a lot when it comes to family support. Now that she is having her first child we have more in common too.

Sammy will be here in just a few weeks if not sooner so time to celebrate!!

Me, the soon-to-be-momma, and Stacy (Amy's friend)

Sisters and our nephew, Ryder.

Amy and her mother-in-law, Betty, she is going to be a great grandma!

Stacy, Amy and Stacy's mom, Cathy.

Cathy was such a help. I am so thankful she was there!

Cathy helping Amy with the gifts.

Me, aunt Shirley, and Amy

Aunt Shirley and Amy.

I am so thankful that Emily and now Sammy will have their great-aunt Shirley. I have some of the best memories of her when we were little kids. She reminds me so much of my grandma Jean. I was so very close to my grandma and I miss her more everyday. I know she would be so proud of aunt Shirley for stepping up and becoming the person me and Amy have needed.

It was such a great shower and I can't wait to meet my nephew. He is very loved already! Thank you so much to the people who came and the ones who helped make Amy's day great!

...................

Today was day 32 of ACTH. Day 23 of no spasms and 17 days with no seizures. We are so thankful for every second without those horrible things.

The side effects are beginning to creep up on us though. The swelling is still minimal and her blood pressure has been good. She is just getting very uncomfortable and miserable. There is not a lot of things that she likes right now beside eating and being held. She hates any therapy or anything physical and her muscles are getting pretty tight so stretching has not been fun. She knows that if she holds her breath she gets out of doing whatever it is.

We will begin weaning the medicine soon so please pray with us that it has worked and that we won't have to seen another seizure or spasm again.

ACTH update again

Day 27 of ACTH and things are still good.

Her blood pressure has regulated and swelling is still pretty minimal.

The extreme fussiness was helped with the addition of zantac.

She is still not sleeping well. Some days she will sleep great and other days she will sleep just a few hours all day.

Her appetite has calmed down a little. She is still eating 100% by mouth without any supplement of pediasure. We just started giving her stage 3 baby food last week with speech therapy and she did great and so far she has not chocked or gagged on it.

Also last week in speech therapy she had her first Gerber cheese puff and a grape sucker! She loved both especially the sucker.

She was a purple mess when it was over :)

It is crazy to think something as simple as a sucker can be a great therapy tool. We are teaching her to use her tongue more so that one day she will chew her food and that will also help with forming words one day too.

We are noticing a little more eye contact lately. She does seem a little more alert. I just miss her personality so much. Can't wait for the fog of ACTH to be over.

We are still celebrating...18 days no spasms and 12 days not seizures.

Praying everyday that this will continue once she is off the ACTH injections.

Thank you Jesus!!

another ACTH update

Emily is on day 17 of ACTH injections.

This time around is much different.

The first time she was on ACTH Emily swelled quite a bit pretty quickly and had no increase in her blood pressure or blood sugar.

This time she has not had much swelling and her blood pressure is higher.We have had to decrease her dosage once because of her blood pressure. She is also SO fussy. She can scream for hours on end. We have found a few things that help-a warm bath and eating. We do lots of baths and eating around here!

Here are a couple hospital pics.

Her first non-keto meal, mashed potatoes!! Her favorite now.

Totally wore out! (notice we go no where without her weighted cat and her puppy violet)

She has definitely regressed in all areas. She does not make eye contact and is not looking at things or the tv any longer. Smiles are very few and far between. She is just overall grumpy. We are praying that all of this will come back pretty quick!

A rare grin! Food on her face because eating makes her happy!

It has been a huge change coming off the ketogenic diet. She was on it for 11 months. The first time I gave her liquid Tylenol I freaked out. She has not had liquid medicine for such a long time.

I am so very thankful that we tried the ketogenic diet and if needed (I pray she does not) we will go back on it.

Just to make things a tad bit more complicated, Emily has had a bad uti again (on antibiotics) and it teething.



So I guess I should get to what everyone is wondering.

Is it working?!?!?!?!

Well today has been the 8th day with no spasms!!!

Days 1-5 she continued to have clusters of spasms and then a couple days with none and then 2 days with just a few single spasms and none since.

As far a seizures go we are not seeing an actual seizure the past few days. There have been a couple of "movements" we are questioning but nothing noteworthy.

We keep a daily journal on Emily. It has been a lifesaver! It has every medicine she has ever taken in the front and daily we write down her meds, food, vitals, diapers, and seizures/spasms (or lack thereof!)

Joe suggested we do this in the hospital when Emily was first diagnosed and we have not missed one day since. We can go back and see trends of what meds worked better than other and when she had appts an tests. It has made our life so much easier.

Keep praying friends! I can not begin to tell you how amazing it feels to watch your daughter fall asleep and not have a seizure or wake up and not have a spasm. I watched a video the other night of Emily having a spasm and it hurt to watch.

I have had so many sweet comments and messages and I am so thankful for every one of you! Emily is lucky to have so many people praying for her.

update on ACTH

Emily is on day 8 of her ACTH injections.

She just had 3 whole days of no spasms, only seizures, and then this evening she had a couple single, weak spasms.

It was a heart wrenching feeling.

We are pumping our little girl full of steroids that make her cry, swell, elevate her blood pressure and blood sugar and make her have an insatiable appetite.

She screams for hours on end. It is hard to not be able to help her.

She is just starting to swell a little and her blood pressure is just starting to climb, we are watching it very closely.

Her very loose muscles are getting increasingly tighter, we stretch her daily to combat this.

All of these things are what we are doing in a desperate attempt to stop her infantile spasms.

Infantile spasms are that bad.

Emily is having seizures but only when she is falling asleep or waking up and they are pretty manageable.

I am praying so hard that all of this is worth it.

It is hard on Joe and myself also. We are stressed and tired. Our only nurse has been off all week because of a back injury and like I said before we have no one else that knows how to take care of Emily so it is just us.

Joe had a death in the family and had to travel out of town for the night so it was just me and Emily. I was never so glad to see Joe come home.

I am trying so hard to pray and be faithful to God and trust that His will is best for us. I am not going to lie, it is hard. I know that God loves us and He loves Emily more than we do. I know that. Some days I just don't feel that.
Some days I feel so incredibly alone.
Isolated.
Scared.
A sweet friend sent me a psalm she has been reading a lot lately and I have read it and reread it. Psalm 27.
Also 2 Corinthians 4:16-18 has helped.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.


This life is temporary.

I can not wait until the day comes when I can meet Emily in heaven and she will walk up to me and hug me and tell me she loves me.
One day she will be healthy and without seizures.
One day we WILL defeat epilepsy. It will not control us forever.

Until then we will fight.

Catching up and a little rambling

Emily had her last ACTH shot on Friday. We were so glad to not be giving her shots anymore.

If you look closely you can see all the little marks from over 50 shots :(

Its bittersweet though because since we have stopped the shots her seizures have can back. They are not as bad as before the ACTH and I have heard that sometimes it take s a little while for their little bodies adjust to not being on the steroids. It is just so frustrating to see them again.

So in the meantime we have increased her topamax dose twice. Last night it was increased to her max dose for now and I have not really seen an improvement. She has been smiling more, about once or twice a day. I know that is not much to most but when your baby never smiles every one is so valuable!

Her seizures almost always happen in the very early morning hours, between 2-6am. Its so hard for me to sleep during that time because I am so afraid I won't hear her. The next time she has one I am going to try and record it so you can see it. Her seizures have become so weak that sometimes we just don't know if it is one or not.

I have officially quit working. I had a small daycare in my home. I always wanted to be a stay at home mom but I knew we couldn't afford that so that next best thing was to work from home. Let me just say that going in to this I never thought I would love those kids like I do. I miss them so much!! Two of the kids I watched since they were between 3 and 6 months old and now they are almost 3 and 4 years old. I know this is what I have to do though to be able to take care of my baby.

We are still waiting on the referral to Cincinnati children's hospital. I can't wait to get a 2nd opinion, not that its gonna be a different diagnosis but maybe a new set of eyes will see things differently.

meds and such

Upon the diagnosis Emily was immediately put on ACTH (steroid) injections. The neuro doc wanted to put her on a high dose so we started her on 45 units or .56ml she stayed on that dose from 12-4 to 12-24 we began weaning her on Christmas day. The doctor told us that she WILL have high blood pressure and high blood sugar while on acth, so we monitored both at home and not one time were either elevated. Also one of the major side effects is weight gain and swelling but again she only gained one pound and her swelling was min. Currently we have one more week of weaning and we are done!!!-I think it helped, her seizures or spasms gradually went down, her last spasm was on the 1st of Jan.



They also started her on zantac for reflux because its another one of the many side effects of ACTH. It only worked for a short time so we switched her to prevacid. That seems to be helping now.


We are to also give her Valium (oral) 3ml for a seizure that lasts longer than 3 minutes and we have diastat (rectal Valium) to give her if the oral Valium doesn't work in 10 minutes.


On 12-29 we started her on leukovorin (folinic acid) 2.5mg 1/2 tab crushed twice a day and pyridoxine (b6) 50mg crushed twice a day I really think these helped her. The last spasm was on Jan 1st just days after we began these.


Most recently she started rolling her eyes alot and they said it is a short quick seizure so they started her on topamax 15mg 1 cap in am 2 caps pm.-so far it seems to help her freq of eye rolling has gone down but not gone away.


She also had thrush (still has) and we tried nystatin and diflucan. It would make it go away and as soon and the meds were stopped it would come right back. The ped. told us since her immune system is down she will keep getting it so we are just gonna wait until we are done with the ACTH and then treat the thrush.