How's ACTH going?

Cameran is doing very well on the ACTH. She is really putting on the weight, since starting the ACTH 2 weeks ago she has managed to gain 4 pounds being 2 pounds a week. You can definelty tell it in her chubby tub face!




Her new nickname is "TUBBA TUB" she shakes her head no every time I call her that. Its so cute to finally see some meat on her! She weighed 22.15 when we started and she is now up to 27.5


As for the seizures they are still in the same range about 4-12 a day. They went up a little today and theres a reason for it. We kind of panicked a little this morning when we noticed we where out of her 1" needles and had to switch over to the 5/8ths they prescribed for us which as many know is a much shorter needle. Well her Neuro had RX(prescribed) some numbing cream yesterday to help out with the pain the girl has been going through (which I will explain next) anyways we put the cream on her right leg and waited 30 minutes and started the shot. Well Jason had a really tough time getting the needle in, he says the right leg seems alot tougher for some odd reason. Anyways when he put the needle in he did the norm and after pulling it out we noticed it was real puffy you could actually see the liquid sitting under her skin....yes, it didn't go into the muscle like its suppose to. I paged her Neuro and he called right back and said it sounded like it went subque(sp?) meaning just under the skin. Said it wouldn't hurt her and said that we could give it to her again if we wanted. We decided not to. The numbing cream worked fantastic she barely flinched when he did it. Amazing though since he had to poke her 3 times before the needle would go in.

Which brings us to our 2nd problem we have been having. We can not get the shot in her Right leg for some reason he has to poke it several times and it still won't go in so we have just been giving it in her left leg. Well I contacted her Neuro yesterday and he instructed us not to do that. He said it needed to be alternated and that if we couldn't get it in that leg we would have to do it in her arms or bottom. Jason has been scared of her right leg ever since this weekend when he tried the right leg again and she started screaming with the worst pain sound and started shaking then followed 2 seizures in a row. It has been so hard seeing her go through this we just can't believe we are having problems with one leg and not the other. Thank goodness for this numbing cream wish they would have done that in the 1st place.

As far as her blood pressure goes its been pretty good. Yesterday when I took her it was 100/50 which he said was in the 90% for her height. He said you definelty don't want it going over that. I wonder if it has anything to do with her gaining so much weight?? I'm going to have it done again tomorrow at her daddys work they have the pediatric cuff thats needed to get an accurate reading for her. I still haven't got her gluecose results back yet, last week it was 128.
Cameran will be staying on the ACTH at the current dose for another 2 weeks. She will be seeing the Neuro in 2 weeks also. Until then we have upped her Topamax a half notch to see if this will help with her exsisting few that she is having!

ACTH

Well its Cameran is now on the ACTH, the med we always said we would never try. The hospital squeezed her in Thursday afternoon to get her started and me and daddy where both anxious to get the ball rolling! Of course we got there at 3:30 and didn't get the 1st shot until 8:30pm I really thought they would try to get it to her earlier than that. Her Neuro always insist on giving new meds in the morn so you have all day to watch them. Anyways the girls 1st shot was a breeze she barely let out a worthy cry after getting such a harsh shot into the thigh muscle. She did great and was so brave!!! Her blood pressure did great all night. She did have a slight increase once but that was to be expected they said.


Come Friday morning the Neuro came in had a talk with us and said they wanted to give the next shot around 10:00 to show daddy how to do it. Well he did great and gave his 1st shot with barely a whimper out of Cameran. Where was mommy??? Over in the corner about to be sick....Needles are not my thing! After all the directions on how to administer and such we where already on our way out of the hospital. We where there about 24 hours came home Friday afternoon.
We have to go back this week to pick up the rest of her medicine as everyone was out! And who knew such a small med would cost so much a 30 day supply was $7,000.00 Thank goodness for insurance!
We took Cameran today to have her blood pressure checked at her PCP and everything was great it was like 90 something over 40 something (can't remember, it's been a long harsh day). Anywho the girl has already gained 2 pounds!! She is literaly eating us out of house and home. She just can't get enough but I guess thats what a steroid will do to you. They also checked her glucose and it was 128 its suppose to be 60-110 but she had just eaten an hour prior they didn't say it had to be a fasting glucose. You would think that I would have thought of that since I had gestational diabetes....DUH! But he thought it was good to just have eaten so no need to retest with a fasting unless Neuro wants it that way! I hope not the girl might have a fit if I deprive her of her food : - )
I wish you could see her! For someone who just a week ago was only taking milk for her meals its just unreal to see her go nuts over an empty plate! She starts crying and banging on her tray if I can't get it too her quick enough. And who would have thought she would keep signing "more" when she wanted it. She has even started making the mmmmmmm noise after every bite! Haven't heard that in a year!
As far as the seizures go......Well wish I could say they where a thing of the past but they aren't just yet. We have seen a big decrease in them in the past few days but they climbed up again today to 11. I just wish these darn things would just stop!!!! But we still have a few weeks to go before they decide if they will continue at the current dosage for a few extra weeks or start the wean. We just hope and pray that this is the med as it is our 8th med that we have tried!!!!!


On another note Cameran will finally start Physical Therapy again on the 13th of this month. Her school has had a time trying to find a PT therapist since the other one left and 6 months later we where still waiting. She has alot of catching up to do but atleast she has her inserts now and walks lots better.
I'm going to try and keep this updated but since starting ACTH her moods have been terrible! She has been crying and fussing all day long and is VERY VERY VERY VERY VERY irritable. She would not let me put her down today and if I did she would just sit and cry, totaly out of her personality. My mind feels like a train wreck, I need a huge break!!!!! Just have to remind myself its only temporary! Felt sorry for her poor teachers today she gave them a wrestling match today instead of a class. They spent more time holding her down than anything. Cameran kept shaking her head no everytime they gave her a toy.
They would put it in her hand and she would drop it and then push all the toys off the tray into the floor. I've never seen her this way! She has always enjoyed her toys even though she didn't know what to do with them and would only show intrest for 5 seconds. This med just has her way out of her norm! They said seeing her today reminded them of how she acted in the very beginning of all this mess. So I hope we don't go backwards atleast she is babbling again!!!!!

Soon to start ACTH

Well after much debate about ACTH we are going to give it a try. They are looking into putting her into the hospital this Thursday-Saturday to get us started and show us all that needs to be learned. Also just to monitor her. He said she will also be given a med for her belly that she would take daily. Not sure whats that all about maybe the med can upset their little tummys. They will be teaching us how to give her daily shots. He said it will probably be just once a day but not sure of what her dosage would be so it might be twice. This is only for a 4-6 week course from start to weaned.
We have started weaning her Vigabtrin as its not shown to be doing much. She had no change in her seizures since we started it roughly 6 weeks ago. We aren't sure what will happen coming off of it since it might have taken the place of her Zonegran that weaned a couple weeks back. She has had some side effects from Vigabtrin and that with her sleep. She has been taking 3-4 naps a day and it takes us about 2 hours to get her to sleep. Its awful because she cries and wrenches as she is so tired but can't fall asleep. Another reason to get her off of it is of how long it takes it to get here. We are still waiting on her shippment that was sent off over 2 weeks ago from England! We ran out this past week but thankfully her Neuro keeps a large sum in their office. We just pay them back when ours comes in. Its definelty not a med they can just drop instantly! Her seizures have been staying around 12 a day. We hope to have her pretty close to being off of it before we start the ACTH so thats one less med to worry about!
All Cameran's other meds will stay the same while on the ACTH. Why you ask?? Well so we don't get things stirred up, they don't want her seizures to pick up she needs to be stable with her seizures. If the ACTH goes well we will start the weaning of the Klonopin and Keppra and possibly just keep her on the Topamax. So we are praying for the best results. They had recently upped her Topamax twice due to her sudden increase of seizures(18) and she showed not to tolerate the upped dosage at all. She was so out of it barely blinking in starring spells and sleeping all day. Not to mention her appetite has been effected yet again I really hate Topamax. So we had to back down and let things settle. We are still working on getting her to eat again all she will take is her bottle with milk and nibble on a snack occasionally.

As far as the ACTH goes he said they have never had a problem with any of their patients that where put on it. And that she should be fine. He says the side effects usually only occur if you already have that exisiting problem such as heart problems and so on.
Since this is a steroid Cameran will probably gain weight and look like a little sumo : ) Ought to be interesting since she is so tall and skinny. She weighed 23.15 on Friday.
ACTH also lowers their immune systems so we have to keep her away from all Illnesses to keep her safe and out of the hospital. So I guess that makes us home bound for a while or just being extra cautious, lots of hand washing!!!!
We are to hear from the Dr. on Monday on a for sure date. We are looking at this Thursday but they have to make sure they have a room for her so I will update on here as soon as we know something!

What a gorgeous sunset we had Thursday evening. The colors where so beautiful!

Its Been 1 Year....

It's been 1 year now since Cameran was dx with Infantile Spasms. Although the seizures continue we are just glad its not as many. When they 1st started it was 158 a day and now they are about the 15 range, having climbed up a little more recently from the 5-8 range : (
We recently upped the Vigabtrin another notch so now we are at 750mg 2x daily. I'm not sure if we can go much higher. We where to wean the Klonopin when we where comfortable enough to do so but haven't yet due to the sudden increase. It's not by much but we don't want to rock the boat any.


Cameran has had a really hard past few weeks with bad bumps to her little forehead. One causing her to get 2 black eyes. We have been waiting and waiting for a helmet through therapy as they waited on approval from insurance. So I decided to make a call to them myself and they said they would not cover it. Go figure when you need the insurance they are never there on these such things. The guy had actually told me the reason they want cover it is because you can buy one in the store. I said you have that store name???? Then told him what it was for as if they didn't already know she has seizures......HELLO! You would think they would cover something that would keep her safe. Hard to believe they covered her DAFO'S.
So anyways we had to go ahead and order it ourselves hoping to be reimbersed through Early Intervention. That thing cost $200.00.....OUCH! Well before we got the helmet she took another hard bump from a seizure calling for a trip to the Peditrican. Poor baby girl this thing was huge and very squishy. After a 2 hour visit and an x-ray to her head everything seemed to look ok. They where going to a scan but she didn't pass out, vomit and seemed to be acting fine. Luckily we received the helmet that day!!! She looks so cute in it. Cameran's helmet came from "http://www.plument.com">www.plument.com

On another note we took her off the Melatonin after finding some links to it and her Gynecomastia. Our peditrician looked at it while we where there last week and it looked fine and said he definelty thinks it was from that med since it can release some hormones. This also just started recently with the starting of this med so kind of hard to not put the 2 together. And believe it or not she has been sleeping great since we took her off of it. Imagine that!
She is still not talking yet a few sounds here and there, kind of like a rambling singing/humming sound. Not really babbling like she was 3 or 4 weeks ago. On a good note she is starting to sign more for More, Please, My Turn and Play. She does these signs great in her speech class but want barely do it for me.....Little Stinker!
Cameran continues to do well with her eating and has gained a pound finally after being 22 pounds for 6 months now. She weighed 23.9 pounds last Thursday! She goes back for her 18 month check-up this week and back to the Neuro on August 25th, so I 'll let you know how it all goes!

Some New Things...

Well its official we are finally rid of 1 of her meds the Zonegran. She seems to be doing fine no real changes, seizures are still the same 8-15 range! We are to soon go up on her Vigabtrin. On another note I took her to the Pediatrician on Friday for a knot in her left breast which turned out to be Gynecomastia. Meaning she is developing breast tissue already. Its not a side effect to any of her meds that he knew of and her Neuro said the same. They are looking into it so we will hopefully no more this week.They aren't sure whats causing it, there are test that can be ran to find out so we will just wait and see what they propose.
She is doing great now and is a eating wonderfully, so we are now just on consult only!
Cameran wearing her DAFO's she hates them and when we put them on her she acts like her feet are broke. She wouldn't stand up!

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Trying to take them off! Poor thing when we go out she has to wear shoes with them making her shoe size jump up from a 5 to a 7-8 it looks so funny and makes it even harder to walk!
Here they are up close, they are really cute. Pink with little lambs! They do make special shoes so where you can get their actual size shoe so we will be ordering those soon.

What the Neuro had to say...

Well Cameran's appt went well yesterday although not much has changed. We are to stick with the Vigabtrin for atleast 6 more weeks and if still no changes we are to begin with the weaning and move on. He says we can go up on it 1 more notch being 750mg twice daily. Again there will NOT be another EEG unless things get better.

Another thing discussed was her sleeping and snoring. This raised concern when we told him how much she awakes during the night even though we are giving her Melatonin to help her sleep. So he had us raise it last night to 2mg to see if it helps and it did. We just hope it continues!

She also snores really loud so it raised a question to him of Sleep Apneia(sp??) so we are to do a sleep study in a month or so. He mentioned an EEG during a night's sleep to see if theres any activity that could be waking her up at night. These times she is waking up at night vary from 2-4 times a night and she gets all rowed up to play. So he wonders if this lack of sleep is playing roles in her daily seizures.

He also looked at her tonsuils since she has been doing this heaving breathing and holding breath that he picked up on while we where there. He says she doesn't have enormous tounsils but they are very large so maybe another possibility to all the snoring.

On another note they where very excited to hear her babbling. A great sign of moving in the right direction! She was letting it role while we where there it was too cute! You can't really make anything out its just really loud noises and lots of Yahhaeee Woohhooo Dayayas....if you understand any of that let me know : ) We love it!



Cameran's Neuro has many patients w/ IS and says her has been the most difficult.....Why???? He doesn't know! Thats what makes Infantile Spasms so hard to figure out since all the kids respond differently to the meds no matter how alike their cases are. Only one of his patients with IS has a reason to his(TS) and they recently got control with the Vigabtrin all the other patients(12) with IS with no cause are seizure free with some of the same meds we have tried. I just don't understand it! I so wish we could get these things stopped!

Cameran goes back on August 25th for her follow-up so we hope to have some great progress by then!

No change in seizures

So far there has been no changes with Camerans seizures but we are trying not to give up hope just yet. Early last week before starting the new med she was having 5-8 seizures a day and ocassionally have 11-15(depending on her sleep) now her seizures are staying in that number range(11-15) so that would be the only change.
What are the plans now????
Well her Neuro called yesterday to check in on her(he is the best) anyways he had me up her Vigabtrin today double of what she was taking. So now we are at 1000mg a day compared to 500mg. We are going to see her Neuro tomorrow, Friday so they can just go over things with us. We won't be having another EEG until her seizures stop! Which we hope will be soon!!! Today we have seen maybe 1 can't be for sure though it was a weird side ways head drop???

As far as the weaning of Zonegran goes, we are now at 50mg a day and she is doing fine.

Congratulations to Lil' Cam as today she graduated from her OT Feeding Class. Her teacher and I thought she has made great progress the past 3 weeks that they have just moved to her consult only! Whooo Hoo, GO Baby Girl!Oh almost forgot about her blood results. Everything came back fine, so who knows why she likes to hold her breath....for extra attention...Like she doesn't get enough of that already : )

Out with the OLD.... In with the NEW!

On Monday while waiting for her Vigabtrin to arrive our Neuro suggested to start with the weaning of one of her meds. So we opted for the Zonegran, this is the one we have been on since day one of seizures. We are very excited to get her off of something. She hasn't had any withdrawls so far. We will bring the dose down 25mg every 4-5 days until she is completely off of it. Right now we are just down to 100mg, Friday we will be down to 75mg. We are really hoping things will open up as we think some of these meds are holding back her development.
Come Tuesday afternoon we where very excited that her New med, Sabril/Vigabtrin had arrived in the mail. Not bad after coming from England, it took eleven days to ship.
WE started it this morning, (Wednesday the 12th) and so far so good. I saw 1 seziure this morning before I gave it to her and thats it. We are keeping our fingers crossed and doing some heavy praying that this is the one!!!! Well I must have jinksed it she just had 3 head drops : ( It Never fails!

I took her to the Dr. yesterday for a bad runny nose and she has a Summer Cold putting a hold on her classes until she gets well. But we had also raised a concern of her heavy breathing and breath holding spells she started about 5 -6 weeks ago when we upped her Topamax again. I read this is a more serious side effect. Her Pediatrician timed her breath holding it was 15 seconds! We feel like we can't breath sometimes when she does it. Its an all day thing and is scary. So our Neuro e-mailed me requesting us to go have her blood drawn - A Complete Metabolic Profile drawn. It measures the chemistry in the body including Bicarbonate, which is the concern. So we will be doing that tomorrow! So check back soon for updates on how she is doing and the test results! Also we go back to Nashville in a few weeks to have another EEG if the seizures stop with this new medicine!

Ordering a new med!

We are in the beginning process of ordering Sabril Vigabatrin. It has to be ordered from Canada as it is not offered here yet due too a side effect of Periphal Vision Loss. Our Neuro says it will soon be available in the US in about a year.... so we all hope, until then its full price out of our pocket. It will take about 2-3 weeks for delievery so when it comes in we will schedule her next appt and go in for instructions.
We are very excited about trying something new it has been 6 months since we tried anything else, just been doing some adjustments here and there and none seem to be working. We have gained much grounds with the seizures she is down to a handful a day. So our plans are to start this new med once its in, wait a few weeks to see what happens, if good results we will begin the weaning of her other meds. Not sure how many though I guess what ever combo works!

Cameran has been doing some new things such as clapping and signing for "more". She also does the cutest little dance when she gets excited(see photo to right, she was caught in action), she does this bowing and a jump(almost) and waves her arms around its hilarious. Its definetly a must see type of deal!!

Still no talking we thought she was starting to then it stopped. Its so frusterating because you never know what we will wake up to, one day she will babble then the next day it will be gone but she will sign for you and vice versa.
You win some you lose some thats the story of our lives but she's happy and thats all that matters!

Cameran had her casting for her feet today! It went ok she did not want to sit still so we had to do her left foot twice. Poor girl didn't know we had such a wiggle worm! They said her ankles looked pretty bad and are making lots of crackling sounds. She walks on the insides of her feet causing her ankles to bow out on the insides instead of the outside like they are suppose to. So we hope with the inserts it will help put things back like they are suppose to and help her with her balance. People keep asking me if she just learned how to walk and of course I say no she has been walking just over 6 months now. Weird to think its been that long!

POOR BABY GIRL.....She has a sore mouth! On top of her purple busted lip from a face first seizure into the floor she is getting more teeth! Her 1 year molars at that.....OUCH! She has 2 of them making a total of 14 teeth, WOW!
Well here is some info about the new med if anyone wants to read up on it, I pull all my info from epilepsy.com if you want to see more:
Introduction to Sabril
Sabril (SAY-bril) is a brand name used by Aventis for its seizure medicine. The generic name is vigabatrin (vi-GAY-buh-trin). This medication has not been approved by the Food and Drug Administration (FDA) in the United States, but it has been available in other countries for many years. Sabril was developed by a research laboratory in France in 1977. Unlike many other seizure medicines, which are discovered by accident, it was purposely developed with a specific plan in mind—preventing the breakdown of GABA, a neurotransmitter that inhibits brain activity. Sabril was first marketed in Europe in the late 1980s and was approved in Australia in 1993 and in Canada in 1994.
In April, 2004, Ovation Pharmaceuticals announced that it had arranged to buy the North American rights to Sabril and planned to try to get FDA approval for sale in the United States. This process is likely to take 2 to 3 years, however.
Unfortunately, as many as 25% of patients who take it for a long time suffer damage to the retina of the eye, which limits their field of vision. Because of this safety issue, the FDA has refused to approve Sabril, and its use has been restricted in some other countries.
How well does Sabril work?
Sabril (vigabatrin), although not officially approved in the United States because of concerns about vision problems, is useful in controlling partial seizures and some other specific seizure types. Many randomized controlled studies in both Europe and the United States have confirmed this effectiveness, which appears to continue for most patients during long-term treatment.
Studies of children with partial epilepsy have had results similar to the studies of adults.
In one American study, various doses of Sabril were given as add-on therapy to 174 people who had complex partial seizures (with or without secondary generalization) that were not well controlled by other seizure medicines. About half of the people who took 3 grams or more of Sabril per day had at least 50% fewer seizures.
A similar study using 3 grams per day of Sabril reported that 43% of patients had at least a 50% reduction in seizure frequency, compared to 19% of those who took a placebo in addition to their other medication. There were few problems with side effects.
A few studies have compared Sabril with carbamazepine (Tegretol or Carbatrol) used alone to treat patients with newly diagnosed partial seizures. Most have concluded that carbamazepine is more effective for this purpose but fewer patients from the Sabril group drop out because of side effects.
Sabril also may be effective in treating infantile spasms specially those related to cerebral malformations or tuberous sclerosis, with fewer side effects than other treatments such as ACTH.
Sabril appears to be ineffective in controlling primary generalized seizures, including absence seizures and myoclonic seizures. Most studies have had poor results using it for Lennox-Gastaut syndrome, especially if myoclonic seizures are prominent.

The Results Are In!

The blood results are in and it shows that she is tolerating all the meds well. The medicines are all showing to be in the LOW range meaning we can go up in doses to see if this helps with the remaining seizures she is having. We are upping the Topamax 1st since it seems to have helped her seizures the most(went 4.5 weeks sf when started the Topamax) we have had feeding issues since starting the Topamax but what Toddler dosen't!! She still takes Feeding OT once a week so maybe we can keep her ahead of the game! On the Topamax we are adding 15 mg at her night time dosage this will put her at 95mg a day. He says we can go to about 100. Her current meds and doses are:
-Topamax -95mg a day- (1- 25mg&15mg in a.m. AND 1-25mg& 2-15mg in p.m.)
-Klonopin- .25mg dissolving tabs 4 pills a day
-Zonegran- 125mg a day- (2-25mg in a.m. and 3- 25mg in p.m.)
-Keppra- 2ml 2x's a day
-Melatonin- 1mg at bedtime for sleep what a lifesaver!!!
Her sleeping was way off waking about every hour at night time I was exhausted. I mentioned this to her Neuro and he told us to give her Melatonin-over the counter, all natural, its something your body already produces, it has really helped out. She has always had seizures in her sleep that would wake her up (in the very 1st months of IS) so he thinks this is still happening. He also thought that this could be a cause to her exsisting few seizures she was having in the day due to the lack of sleep. Although she is sleeping better now she is still having about 3-9 seizures a day. I don't know where I would be without this sleeping med now mommy and little Cam can finally get some much needed rest :)




Check out our little Monkey......

Cameran's new thing is climbing and there is NOTHING she can't get too!!! A few things we have pulled her off are the recliner that you see to the left she just smiles ear to ear when she gets up there, end tables, baskets, couch, kitchen chairs, toilet seat, activity table, brothers little chairs, tricycle seat and the drawer under the stove trying to reach things on top of the stove.....Watch out! She mastered the stairs so it called for a gate now she sticks her hand through there fussing because she can't get to it! She is such a little handful!!!!!

Here's some more photos of her caught in action:

She is one little determined baby girl! She knows what she wants and goes for it, she has no fear! Once she accomplishes her goal of climbing she doesn't know where to go from there and just steps right off the object only to get back up there and do it again! SILLY GIRL ;-0
Did I mention how much I LOVE my BIG BUBBY! You can always catch them hugging and wrestling in the floor its the sweetest. Cameran will follow that boy to the end of the world and back and Caleb would carry her if she got tired, they are best friends! Caleb tells me all day "I love this baby girl, she's my best friend" He is the only one that can really get her to laughing its adorable, they both just melt my heart!!!!

To be continued....

Cameran had her appt today with the Neuro so heres the latest: We had her blood drawn to check her levels with all the current meds she is on to see how she is tolerating them - to high to low. If things are ok we will raise probably the Topamax since thats what we are having the most luck with so far minus the feeding issues. We will get the results back in 2 weeks and with that we will decide what comes next. He has given us our options to think on. Her Neuro "Resident" is really pushing the ACTH route but we have decided that is a no go for now and a few of the Dr.'s up there agree. He says one Dr. use to offer ACTH but hasn't done so in 11 years due to the side effects and we are on the same page. Neuro Dr. "C"(our main Neuro) says it would be good to use if things started to get out of control but that there are no guarantees with ACTH and that some patients had no luck with it at all. He says everyone metabolizes meds different so there are no two people the same so therefore no gurantees and no right or wrong way going about the med choice it has to be what we are comfortable with! And we decided its just not the med for her, we are up for the Vig. since her eyes have already been checked and everything is fine there so if something was to come about we would know it was from the med. Right now things are calm she had only 4 seizures today which is wonderful so we are definetly heading in the right direction. They don't want to leave things the way they are so something will be done when we get the labs back. Right now the girl is knocked out after they told us to give her Melatonin to help her sleep at night since she wakes just about every hour during the middle of the night hopefully with this med it means sleep for mom too : ). Cam she is getting so BIG and grown up looking! Cameran is on a learning curve and is babbling in sentences of course you can't understand it at all but its cute! She is climbing stairs, chairs, stools everything she can hike her leg up on so we are watching her closely! Its just amazing on how much she has started doing since we got back from Florida!!!! She has started looking for hidden objects and exploring toys more and can you believe it she has been sitting still for longer periods.....WOW thought that would never happen as you all know what a wiggle worm she is, its just been a great few weeks!

As for the seizures they have been staying in the 5-10 range so they have definetly gone down in numbers! Her Neuro wanted to put her in the hospital last Wednesday to start the ACTH and we decided to not go with that mainly because of the harsh side effects:Potential side effects include-Hormonal therapy with ACTH or corticosteroids may have significant, potentially fatal, side effects. While weight gain and cushingoid features are among the most common side effects, ACTH or corticosteroids may also produce hypertension, metabolic abnormalities, severe irritability, osteoporosis, sepsis, and congestive heart failure.- (E-mailed from our Dr.)We just don't think she is that bad off to put her in that big of a risk of other things, maybe this would have been good in the beginning of things when she was having 158 seizures a day but not with just having 5-10 a day. We are to discuss what we are going to do, SO TO BE CONTINUED........ Cameran is still taking weekly OT feeding sessions as she refuses to eat sometimes. Its a back and forth ordeal as she eats FANTASTIC on some days trying out table foods, drinking 30 ounces of milk a day and eating lots of snacks. But then the next day will be the total opposite and will take no table food, no jar food and maybe about 15 ounces of milk.... It's all so strange. So of course this is making her weight go up and down she is at 21.4 pounds right now but last week she was up to 22.6 atleast we made it past the 18 pound mark as she stayed that weight from 6 months of age to 13 months of age!!! We are trying different varietys of snacks and different texture foods since she has a sensitivity in that area so far so good you can see her above trying out lots of different things at once! The hard part is trying to open her mouth to atleast try something new.....She is so stubborn! A new thing she is doing is drinking out of a straw, we have tried so many sippy cups and found that she will only take straw cups so we hope to have her off the bottle soon....But she is moving at snails pace on that one.Camerans new favorite thing to do is playing in the rocks!! She will put a few rocks in her mouth but Some other news is that she has managed to get 3 new teeth -in a 3 week period Poor baby girl it was actually a tooth a week OUCH! She is working on number 4 making it a total of 12 chompers :-)