Some Results are in!

Well she had her EEg yesterday and Blood work and Urine for further testing from bad results she had gotten while in the hospital. So it all had to be retested with a fasting. Here is an e-mail from the dr that I got this morning:

The EEG continues to be abnormal but is NOT hypsarrythia. I think this is an improvement from before. When you all get back try to set up an appt and we can talk about what is the next step after all the labs are all in.

Her Iron was low-34 (50-120 Normal)
Hemoglobin is 10.3 (10.5-13.5 Normal)
PVC 33 (33-40 Normal)

the rest that is final looks OK. Some labs are pending and take more time


Great news about the hyps being gone! They tested her Iron because she all of sudden had a craving for eating any kind of paper tissues, toilet paper you name it she ate it! They call it "Pyka"(sp?) but they say when kids do this it usually means their iron is low/anemic. Glad we had her tested for it since it seems low!

We are off on Vacation today so I will update more when we get back! Happy Holidays!

Our little girl is sick!

Our poor little angel is having the roughest 2 weeks. We have made 5 trips to the Dr. and 1 ER trip all in 2 weeks time! She refuses to eat since coming off the ACTH. Her drinking is very poor, a few sips here and there..
She They have ran many blood and urine tests. Some the tests ran are RSV, Strep, Dehydration, Acidosis, and Chest x-rays. She has white spots on her tounsils but it is not strep just a viral thing and she has bronchitis with temps of 103. She is showing a small sign of dehydration but not enough to put her in the hospital. They assure us she will be ok as long as she drinks a little and isn't peeing out everything taken in. Which for her isn't the problem as she barely goes at all.
Which brings us to her next problem we encountered yesterday. We noticed that when she would go pee she would scream horribly and pull at herself then you would smell the urine. So we took her back to the Dr. yesterday where they had to do a cathetar again to get urine. She now has a Urinary Tract Infection so she is taking an anotibiotic for that. I hate seeing her go through all this it just breaks my heart!



We have been in close contact with her Ped and Neuro of all these problems they are watching her very closely. Her neuro decided to take her Topamax some more since she is not drinking much. So we are down to 100mg right now and we are to see how she is tolrating this move for a few days. So far so good not many seizures maybe 5 a day! But of course she is sleeping the days away since she is sick!

Also the blood test they ran when we wher in the hospital for her leg well those all came back elevated. So they have requested all to be redrawn with a fasting to see if things change. It was tests like Amino acids and such. Her chromosones tests is the only test that came back fine. These tests will be ran on Dec. 14th the same day that they do her EEG with B-6 injection to save us a trip and 2 pokes!

Our next steps as far as meds go aren't really set yet just waiting for her to get well before we move forward. We know its weaning some meds first then add a new one. Which they way things are going it might be the 1st of the year!

By the end of this week we had made 2 more trips to the Dr. on Thursday and Friday rounding out our visits to 7 in 2 weeks.... Poor Baby Girl! On Thursday they had to do another cathetar to get a urine sample and found that she has a Urinary Tract Infection so they gave her an antibiotic, poor baby girl would scream every time she went potty! Then on Friday she was throwing up and had dirreah so it was back to the Dr. for lab work to make sure she wasn't getting dehydrated she was at 7 and the numbers are like 7-15 or something like that so she was on the low end but he thought she was ok. Just told us to syringe feed her every 5-10 minutes with liquids. On a positive note the fever is gone and the cough is almost non exsistent!!!! Now if we can just get her to start eating and drinking again! Cameran is already shedding lots of the chubbiness! Her face and belly have slimmed down lots. She is at 32 pounds right now and losing quickly since she isn't eating! We are so praying that she is well soon!



Happy Holidays!

Done with ACTH!!!!!!!!!!!!!!!!

So glad that the ACTH is finally gone! She has really done well since stopping it on Sunday. Unfortunaltely she is still having seizures, we where really hoping this med would work for her!

On a HUGE plus our little girl is back! She is full of smiles and even some occassional laughs! The babbling is slowly coming back along with her signing! Her eating has dropped significantly and she has already lost 3 pounds. Putting her at 32 pounds. I wonder how long it will take for it to come off?

She is just doing really well! I had mentioned last week of taking her to a new school and that only lasted for that day. The program was great but not for Cameran just too many people(students coming in and out for training) so not something that would one on one with her which she needs! I was so worried seing all the pointy toys just knowing that it could put her eye out or something! It all just made me very nervous!!!! They too agreed! So maybe once we get her seziures stopped we could give it another try.

Cameran will be weaned off another med soon to get her down to just 2 and eventually just 1 before starting a new med which is Lamictal. I don't have all the info on that yet just waiting a couple of weeks before starting anything weaning and such. We will not add another med while weaning these others unless her seizures get out of control, other wise it will probably be Christmas time there abouts when we start Lamictal! Options after that are Depakote.

We would love to have another seizure free Christmas again this year and this time it stay that way!!!!

Sending our love to everyone.....Happy Thanksgiving!

P.s. Mommy is doing well now, the Zoloft has really helped her get back to her old self again!

Shedding the Pounds Already...

"Our Little Chubbers"

We are still in the weaning faze of the ACTH but are done come Sunday! YIPPeeeeeeeeeeeeeee.......... I will be so glad to see this med go! Although I am glad we did atleast try it to see if it worked but 11 weeks was way too long since it never showed to work!

Look at our Baby Girl go she is walking again and is happy! On another note Camerans seizures are down to about 8 a day. Strange that the number went down after weaning down the Topamax maybe it was all just to much. Her little mind is opening back up after being in the "ACTH Coma" as I call it. She is trying to babble and play again, smiling and even laughing again! Its great to see it all back. She still gets a little zoned out but she is doing well Cameran got up to 35 pounds last week and now this week her weight is finally starting to taper down she weighed 32 pounds 7 ounces this Monday. But she is still a little "Chubbers"! During all these visits Cameran had come down with a bad runny nose and nasty cough that keeps her up all night. She ended up having a Sinus Infection so they had tried a few things one being Omnicef which she was on it for 10 days and it did nothing for her cough and runny nose. They had also tried her out on Albuterol for asthma to see if it hepled with her heavy breathing and a grunting thing she does in her throat like she is trying to push air down. Shes been doing this since this summer. We also tried it for 10 days with not much sucess. It seemed to help sometimes and others not so we are done with that. Her Ped put her on Atuss a decongestant to help her out hopefully this one will work. Poor baby can not breath imagine not being able to blow your nose or clear your throat. YUCKY STUFF!!!!!
Oh and one more thing Cameran starts school today. It will be Monday - Thursday 1-3:30 its a preschool or daycare for kids with needs or delays. She has been on the list for almost a year and finally we got in. Mommy doesn't get to stay in the room with her but I do get to observe from another room I can see her but she can't see me. It will be a great interaction for her I know but Mommy and Daddy are so nervous to leave her with others! So keep us in your thoughts and prayers that it will be a smooth transaction!Well we're back from her first daycare class and she did great! Mommy will be sure to always stay there so I can watch her as I'm not ready to leave her yet. Not sure if she will be staying there or not but we will see.

Out of the hospital

We are finally getting settled back in from Camerans stay at the hosptial last week. If you missed out on all the action it was all due to her left leg. Sunday the 15th she had one of those new left sided seizures and when she did that she was not able to walk. Being her left leg just noodled out! Her Ped thought nothing of it like her Neuro, they both thought it was just weakness from the new seizures "Atonic" as he called them. Anywho come Tuesday she still couldn't walk so we gave the Neuros office a call just to let them know as instructed and this is when we where instructed to take her to the ER in Nashville. So we did and of course that call was at 5:00pm so we didn't get down there until 7:30. The ER was packed full of sick kids we where just praying we wouldn't catch anything while there. Lord knows we have enough problems. Anyhow 2 hours into our wait we finally got a room back in the ER here they observed her and asked the million questions and watched her try to walk. They went ahead with a CT Scan no problems there just some sinus stuff and a chest X-ray it showed a small haze spot from her cough. They where worried of her really heavy breathing and every dr and nurse that came in the room would say does she always breath like that. Of course we said yes shes been doing it ever since this summer and no one can figure it out. Seemed they where more concerned of that than her leg at the time. Well after 5 hours in the ER they finally admitted us that being 3:00am. Poor baby girl was exhausted (so was mommy and daddy)! Once in the room they did more questions and stats and during this time the nurse witnessed one of her left sided seizures. This called for a upped med for the time being so they upped her Keppra to 2.5ml this seemed to help since we haven't seen one of those kinds since that night.
Well after 3 hours of sleep another day arose for more tests. They had her hooked up to an IV 1st thing for her MRI that went smoothly, next it was x-rays of her legs and hips. We got results later that day, x-rays where fine, MRI came back with two things. One- they found a small lesion in her Cerebelum which they said was there at her 1st scan a year ago(which we knew nothing about) and it was the same size so no worries(yeah right, that is all I have thought about)! Next thing was something like Malutrations(I have no idea what he said) but he described it as the developing nerves in your brain, said hers where a little behind, so probably why she is not developing right on track. Anyways these 2 things are still no cause for Infantile Spasms. Great news was there was no Tumors or any signs of a Stroke.......YEAH!
Come Thursday they had us in for more tests, 1st one being her EEG. It read terrible lots of seizure activity. Her Neuro was in the room during this, watching it as it went we would see foot and arm twitches that where reading as seziure activity, also still showing hypsarrythmia. But there was NO focus point still generalized and multi focal seizures. He upped her Topamax again totaling 250mg a day....Yikes! Later on that day he ordered a massive lab work. They sent off 7 different tests. Some I heard where Chromosone, Acid, Liver, Kidneys and such. Still waiting on results, the only one we knew of that came back a little high was her Lactic Acid it was 3.2 and its suppose to .5- to something, he wasn't worried. Supposedly that test is how she metabolizes her meds.
Come Friday Cameran was ready to go home. She did make a few friends while there one little boy in praticular named Joshua(sweetie pie 28 months) he got dx w/ Cancer that same Wednesday that we where there. He looked like an angel, bleach blonde hair, crystal blue eyes and fair skin, beautiful! You would here him call out Camry(thats what he called Cameran) looking for her wanting to play so we would take them to the play room. We where on the Cancer wing for kids they where all so sweet! Here's daddy taking the morning rounds of her daily walk that she loved. This was the only thing we could do to keep her from fussing. Late at night mommy was making rounds around the nurses station in the wagon. She was set up pretty good just give me my blanky and I'm good to go! After 20-30 circles everyone started to know us very well. Cameran was letting everyone know that she was awake as she was letting out her only sound she does EWwwEwwwEwwww. Sounds like a little howling puppy dog the nurses loved it.
Cameran had a PT come in and evaluate her walking and balance then later the Neuros came in. What they told us was going on was that she was on too many meds and her body was showing for it. (Hello is that not we have all been saying/thinking). They called it "Ataxia"(sp?) otherwords loss of cordination. They believe it is the Topamax causing it so we are weaning it. The weakness ended up going in to her right leg also. She was doing lots better on Friday so we opted to come on home late that evening. Cameran was very excited of this she was smiling and alughing while walking out of the hospital, those arms and legs where just a going. Come Saturday morning she was ready to move around, she was up trying to walk 1st thing but was still not able. But Sunday she was on the roll of not giving up....Our little fighter! Here's Cameran with Mrs. Yolanda "YO" her favorite nurse. She smiled every time she came in! She was 1st walking out at short distances but she was getting there it was like she was learning how to walk all over again! And today, well she is back to her old self again she is walking with kind of a stiff leg but she is healing and thats wonderful!
On another plus we are down another point on the ACTH and its showing the girl is gracing us with those beautiful smiles again and even some laughter...music to our ears! We hope it all continues, oh and more good news is that the seizures are down to 5-11 range! Hope to soon see those seizures dissappear!
Happy Fall! To see our Family Montage click here:
Our Sweet Little Angels

Where did my baby girl go?

Ok Cameran has now gained 10 pounds in 5.5 weeks and she does not even look the same. So it leaves me asking, Where did my baby girl go? She weighed in at a whopping 32.5 pounds on Monday and is 20 months old! I just can't get over how big she is now! Its quite funny looking at her as she has the belly of a pregnant woman and the walk to go with it, belly button sticking out shes just so round! I guess thats where the nickname Pooh Bear came from since his looks the same and her shirts do the same want stay over it always above it! Its just too cute but she looks just miserable!
On another note her BP was fantastic this week 86/42 a definite improvement! She is also now off the Vigabtrin can we say WHHHHHHOOOOOOOO! Finally one less med. This week we will start the ACTH wean fianlly. I will be so happy to see that med go! I hate hearing the horrible moans and moods she has been going through while on this. Not something I would ever do again! We will just be glad to have our baby girl back again. Here's another before and after picture:

Left taken yesterday, Right taken 2 weeks before ACTH! Hard to believe she has gotten so big!

More weight gain???

Cameran is currently 5 ounces shy of being 30 pounds. She weighed in at a whopping 29.11 pounds today. I could not believe my eyes as last week she was still weighing 28.1 thats almost 2 pounds in one week. All in all she has gained 7 pounds in 4.5 weeks and she is showing every bit of it.

She is our "Mini Sumo"
I have a new face I can make again:
My Kissy Fish Face! She use to do this back a few months ago but of course with Infantile Spasms things come and go and come and go again. Its like seeing it all for the 1st time again.....We love it all, old or new, shes just the sweetest!
Cameran has really been tired alot here lately, probably due to the Topamax increase now on 200mg a day. We will be so glad to finally get rid of a few meds, easier said than done right. Less meds means more seizures for her. Maybe we can find one that can hold them down so we can get her off a few! My new hiding spot:

Every time I open the dryer to put clothes in, Cameran always beats me to it! Climbing and holding her balance once in, thats great practice for PT. Which she has been doing very well in those classes. She's really been working those muscles! Ok now here is the last picture. This one does not even look like Cameran she looks huge here!

What a Chunky Monkey! Her BP was up this week 125/40 something. They couldn't get an accurate reading on the bottom after 4 tries. We are awaiting her Neuros responses.

Weird seizure week!

Camerans seziures have been all over the place this past week, going up and down! Her seizures have been staying in the 18-27 range and having one day of 33 and then back down to 19 then 11. Its just crazy how they are on different days with no rhyme or reason to it all.

Well since the seizures weren't changing her Neuro decide to go ahead and continue with the weaning of her Vigabtrin that we had started before and up her Topamax. We just saw the peak of 33 seizures about 4 days into the wean then it settled back out weird how it does that everytime we wean one. We always get one high peak day then it settles back out. So we are going very slow on the wean, down half a pack every week to make sure she tolerates it well. Right now she is on 1/2 pack 2xs a day. We are up to 200mg of Topamax right now it really seemed to help yesterday when she had just 11. We hope and pray that they stay down.

As far as her BP goes it has been staying in the same area this week it was 100/60. Last week it was 100/58 so pretty much the same and no worries in that area. Her glueclose has been great this week it was 85 and last week it was 116. Weight is the same from last week 28.1 pounds which was suprising since she is so chubby. It must just be feeling in all the places that wasn't chubby as she is very round like a little butter ball, so squishy! I love those round chubby tub cheeks its adorable. Cameran really cracks me up when she eats. As you can tell in some of these pictures that she eats with her eyes closed. I guess she is trying to savor every bite, I had to give her a snack just while she waited for supper to cook she was hitting my legs and fussing for food. She just can't get enough food or milk. She drinks roughly 60-70 ounces of milk a day and eats three main meals and a snack in between those meals.

Here's Caleb rinsing Cam off, she loves the water and he loves to dump it on her, she doesn't mind it a bit. In fact if she hears the bath tub turn on she will go to the door and start banging on it and trying to twist the door knob saying dadadadada! Thats her word for everything right now! She looks so BIG here.

Cameran goes back to the Neuro on October 13th. Until then he says we will give the ACTH another week and if no change we will begin the wean, that will take about a month. Its been 4 weeks now and we have seen no change in her seizures. But we are still hoping!

Photos of our Big Pooh Bear!!!!

Here's some pics of our "Big Pooh Bear"! Before and During ACTH treatments!

Cameran 1 month before ACTH 18 months old! Weighing in at 22 pounds and a few ounces.

3 days into ACTH

1.5 Weeks into ACTH and gettin chubby! Now weighs 25 pounds
I love my food! Cameran is so serious about meal time. She crams everything in her mouth like she hasn't eaten all day.Her arms have always been so skinny and has never had much strength in them. Well that is no longer the story, she is finally getting some meat on those bones which we love and she now has a tremendous amount of strength!

Gotta love that sweet angelic face of hers!

2 weeks into ACTH and weighing in at 27.5 pounds and is very happy and babbling lots. And heres the picture from today:

Cameran 2.5 weeks into ACTH and weighing 28.1 pounds BP 100/48 The seizures have gotten worse for some reason. They climbed up to 28 yesterday and today about 18 we were so hoping this was the med but its not looking like it. We are fixing to continue the weaning of her Vigabtrin and see what happens and possibly knock the Topamax up one more notch. (In the picture below Cameran was looking for food in her chair the girl just can't get enough!)We pray that something works very soon! Poor baby girl has been such a trooper through all the pokes she gets everyday and weekly glucose. Mommy sure wishes she could take her place. We are so proud of you Pooh Bear you are so brave. We love you! Ok now I will put 2 picks side by side 1 from before and todays picture!