Saturday, March 31, 2007
Our worst nightmare come true!
What a rough couple of days for our poor baby girl! Its hard just sitting back watching these things they look so harsh and not only does it scare her it does me as well! I hate them! Run down of the past few days goes as follows:
Come Thursday we had reached the Neuros office and described what was happening so they had us take her to Vandi and have a bunch of labs ran, they thought it was belly related and not seizures, turns out the nurse misunderstood my message. They had us thinking she had Pancreantitis(sp?) your pancreas! Anyways she mistook the seizures I was describing as her having stomach pains????? It totally lost me!!! After the labs they had us come back to the Boro to see her PCP for a full check-up he said everything looked great! She weighed 25 pounds 12 ounces so down since starting the diet 3 weeks back.
Well the labs all came back fine so the Dr called me and I better explained things for him. He then requested her to be admitted Friday the 30th for a 24hr VEEG. So we got there around 11:30 Friday and by 2:30 they had her hooked up ready to go. By about 6:00 she was having a seizure and another one probably right before bedtime. Then 2 in the morning one caught when her Neuro was in the room and how rare is that! I was thrilled. Anyways he says they are definitely a new kind they said probably tonics or partial seizures. How crushed I felt for my sweet little girl, it just breaks my heart. I get to where I never want to put her down so I can protect her from any fears she feels when she has them. Now that she is getting older you can tell she is starting to realize what is happening by the frightened look she gets on her face its just terrible!
My poor baby looked so silly. When they started the electrodes I was beginning to wonder how they would keep those things stuck on there for a whole day. Well I soon learned that they glue them on and boy was that some strong smelling stuff, she looked so funny, wish I would of had my camera. They then wrapped her head in a "sock" most of you know what this is it looks like mesh then they wrapped her head up like a mummy then of course you have these long colored wires coming from her head to the machine so they wrapped those as well so it looked like she had a really long ponytail. Theres about 20 cords so it could have been a big tangled mess so I'm glad they wrapped it all. After they hooked her up she was out like a light for 2 hours so got some good readings there. But she woke up mad to what she had on her she kept pulling the pony tail part not realizing it was attached to her head and it would pull her down : ( What a mess we had when they pulled all that stuff off. Hopefully we can get all this glue off of her before Easter rolls around her whole head looks like its peeling it took them putting oil and some kind of conditioner to get most of it out and a few hairscrubs today as well!
SO we then had to put NoNo's on her(little cast) so she wouldn't pull on it and then she was really mad because she couldn't bend her arms. Cute story is that we had handed her sippy cup to her not thinking about her not being able to bend those arms and that mouth was wide open and tongue trying to reach that straw, it was too funny! Mommy and daddy sure needed a good laugh. Needless to say those things didn't stay on long we couldn't take her fussing from the aggravation of it all. And to you that might not now how those EEGs work well once its on there, there is no leaving the room and you cant go much further than the bed. The machine with Computer and video is all on a cart that's plugged into the wall so not many places you can go and for our busy girl that was a huge problem. Lets just say I'm glad its over.
A great bit of news is that her Hypsarrythmia is completely gone since her last EEG. He said it read much improved by just watching her a little while in the room. We also have not witnessed any of the "Head Drops" in a few days. He says she is probably outgrowing them but not before they formed into another seizure type.
So what this all means is we are dealing with a whole nother ballpark of meds. They will keep her on the Keppra, Klonopin and Keto diet for the time being no use in rocking the boat even more! He named one med they would start her own but I can't remember the name I will have to look it up, if I see it I'll remember it! But he talks as though these kinds are easier to control with meds where as Infantile Spasms are the hardest to control. And we know first hand all about that! Unfortunately this does mean she will probably be on seizure meds for the rest of her life.
We will not find out the full results until Monday or Tuesday. So I will let you know what type they are as soon as we find out. They wanted to all sit down and view the readings and Video over the weekend!
Just keep our little Cami in your prayers!
Wednesday, March 28, 2007
Well hate to say it but the seizure free days are a thing of the past yet again! Can I just scream now! This gets so frusterating sometimes. Whats even scarier is that they have come back in a different form! They consit of her falling flat out in the floor, eyes rolling all the way back, stiffing of the body for a few seconds. These last anywhere from 30 seconds to a minute then she will have some sort of a click or tick if you will then look around lost starring off even if I'm standing over her she will not move I'm guessing she is still in the mist of it all. Then she will get up and start screaming. I hate these I have left messages for the Neuro so we will see what he says. She does still have a few of her head drops a day maybe 1 or 2 and like 6 of the others and thats where we are at.
This is one of her seizures that I happen to catch while taking photos of the kids at the alligator farm! This is what it looks like when she is sitting up she gets very stiff I couldnt bend her arms and her eyes where rolled up she sat like that for a minute, might not seem like along time to some but to me it seemed an eternity! Especially since her norms are always so quick if you blink you would miss them!
On to the diet well what can I really say about it other than it being a complete pain in my butt. Its greasy, discusting and very time consuming! Cameran loves the breakfast minus the butter I even melt her butter and put it in her eggs and she still gets fussy over that. But eventually warms up to it. With the egg she is getting bacon and cream. I'm waiting for the Keto pancake meal add up from the nurse since I have no idea how to do it! ANyone that does she is on a 3:1 calories being 333 each meal.
On to the lunch the hardest part of my day, lets just say I have the pickest toddler and more so now that she really doesn thave that much to choose from. I explain that part in a minute! We have tried tuna, salami, chicken salad, ham and now pepperonis. The 1st 3 are out the door, she would not budge that little mouth of hers after the first bite. Today we tried the Pepperonis and she did great. Supper the only things I have for it are chicken or chicken, which is getting old quick!
I have requested 4 meal plans from the nutrionist 2 weeks ago and she just keeps telling me it takes time. But really how long does it take???
Cameran hates these foods and gags on the mayo because I just dont know what to do with it anymore! I have whipped it, hid it and fed it to her by itself! Nothing is working she hates it and I cant say I blame her. I use to love mayo now I cant even stand the sight of it. Weird too is that I thought every kid loved butter Lord knows Caleb does but not Cami of course she hates anything that she knows she has to have so we have hid it and it too does not work so I have to syringe feed it to her last. Stubborn Stubborn! I have never seen such a greasy mess; hair, face, clothes, tables, counters its everywhere!!!!!!!! I think I have lost all positive thought about now in regards to the diet. I just keep reminding myself it worked for 3 days so we can get back there again. I know she is having these additional seizures because I am having to make stuff up on my own and just guesstimate the weight....Bad on me but I am getting no help from the person I thought would help the most!
(Cameran will however eat grass, rocks, and here took bite of an alligators foot while there she also took a bite of the animal feed, also she pulls her hair out and eats it and Why I have no clue, I'm just so lost in the weird things she does)
I emailed the Neuro requesting another Nutrionist hopefully one locally because I have no clue in what I'm doing! I need someone who relazies that kids do get tired of eating the same ol same ol everyday. I just want atleast 3 different meal plans for each meal that I can alternate! Oh that felt better just needed to vent!
On to something funny that happened today and I needed a good laugh! But when you really think of it its not so funny because of the results she will have! But this morning it had gotten really quite too quite so I went on a hunt for a sneaky litte girl who I remind you makes you think that she doesnt know what she is doing but clearly does! Anyhow I checked the living room and upon the couch was her brother minding his own watching his am cartoons rapped up in a blanket totally oblivious to his surroundings! So on I keep walking and I come to an open door and if you live in my house this is a bad thing because Cameran gets into EVERYTHING! Well as soon as I walk into the room the floor makes a squeaking noise and gets her attention so she jumps and turns around holding something in front of her! And what you might ask does she have a chocolate pop-tart....OMG I panicked and ran towards her saying Cameran no no and she takes off shoving what she can salvage into her mouth! Then gave me the biggest brightest smile like......WHAT?
Could not help but laugh but oh boy are we gonna pay for that one!
I love this one, Caleb and Cameran with my two nieces Cheyenne holding her little sis Natalie! Miss you guys!
One last bit of good news is that her Pommel Walker got approved, due to be here any day I'll post some pics when we get it! This will really come in handy now that she is having a hard time with these new seizures! I'll keep you all posted on any news but she is not due for another appointment until May 11th and it is scheduled with an EEG! He might move it up though with these new things!
I'll be putting up a slideshow on here soon of more pics these where all taken on our Spring break trip to Louisiana to visit my family last week!
Monday, March 12, 2007
Cameran has become seizure free! We started the Keto diet last Monday and with much work and stress it has all turned out for a great cause! Our baby girl has been seizure free for one and half days and counting! She is so happy and lauhging up a storm! Its like a new kid just cant believe the difference! Cant wait to see how she starts progressing in every day tasks!
Her 1st meal 1/3 of it, I cried!
It was such a rough week leading up to this. We had huge obstacles with the diet with the fasting then her refusal of the foods and not to mention the tiny tiny amouts she gets it just broke my heart. She spent most of the week sleeping 14 hours a day plus nights too and one night of vomiting all night long! I have to say I dont think I was really prepared for such a BIG change. But the dust is starting to settle and we couldnt be any happier with the way things are going! They went head and scheduled her for an EEG in the first of May to see how it reads! Keep her in your thoughts and prayers that things stay on this new path of seizure freedom!!!
Cameran riding a tricycle at Special Kids. She looked so cute, lots of strapping on her feet(and believe it or not it takes her all of 5 seconds to get out of them she either slips out of her shoes or pulls her foot sideways to unattatch the foot peddles! She also has to have lap belt to hold her on and still and a pillow for cushion from those seizures. She doesnt know how to peddle yet but she will get there!
Sunday, March 04, 2007
Cameran is finally ready to start the Keto diet. We have already met with the Nutrionist and we are ready to begin after a ton of detailed paper work of how it works and what we will use. It is going to take lots of work of a VERY strict diet to overcome these remaining seizures she is having, which is about 20-30 right now. We will start with a "Short Fasting" to get her in too Ketosis and then from there we will do a 1/3 of the ratio meal then 2nd day 2/3 and then the next we will be in full swing of things.
They put her on a 3:1 ratio some of you already know what that means. If you dont the Keto diet is a High Fat diet basically a peson on the diet gets energy from burining fat rather than carbohydrates, When fat is burned for energy it leaves a resuidue called Ketones, which can build up in the blood. The diet deliberately maintains a build up of Keotnes by forcing the body to burn fat as its primary energy source, when ketones are large enough, which you can check with a urine test, the body is in Ketosis. In the presence of large ketones, seizures are frequently controlled, To promote different levels of ketone produciton, the diet is based on a ratio of fat to protein and carbohydrates(i.e. a 4:1 ratio would mean that she is receiving 4 units of fat for every one unit of protein + carbohydrate. It will take her body some getting use to this change roughly they say about 2 weeks so they say she will probably be pretty tired while her body tries to figure out what is going on and once it does things will be in normal running order. They really do not know how this diet works they just know that it does.
Cameran will have to be on the diet for 3 months before we will for sure know if it is going to work and if it does we are looking at 2 years or more on it. Her Neurologist said he will not wean any of her meds that she is currently on until maybe 6 months into it because of the fact she had such bad withdrawls from them.
We tried to wean her Klonopin a few weeks back and it was huge wake up call her seizures jumped to 70 and kept climbing higher everyday until we added it back then things settled back out to norm. Well now the seizures are continuing to climb once again to the 20's and 30's so we are glad to be starting this diet. We hope and pray that this is the one for her!
As said before the diet is very strict and one small slip up and it will result in a seziure. So that means no sugars, carbohydrates, so like no chips, pizzas, breaded anything, seasonings, pastas, cookies, cereal, juice and milk. YOu might ask what she will drink well she will be drinking heavy cream and water. She can also have caffine free and sugar free drinks, which surprisingly I did find. The Nutrionist has drawn out her meals already all we have to do is weigh that food and feed her every last drop of it! If she doesnt finish it thats all she gets that meal has to be tossed and she gets nothing until her next meal. NO SNACKS!!!!
Heres a few of her meals totaled out. We can do different things we just have to find out what we want let the nutionist know and she can figure it up for us!
Breakfast: (Has to weigh)
Bacon: 6 grams
Fat- Butter/Margarine/Oil/Mayo 32 grams
Cream36%- 11 grams (yes we even have to weigh her fluids)
Applejuice - 38ml
Egg, Fresh - 25grams
Lets not forget those meds she is on 3 grams approx. added in. We had to switch those too from liquids to tablets. Lots of sugars in those liquid meds, so if she gets sick that will take some finding from the Pharmacy to get her a med with no sugars!
Salami-Hormel Brand(need to stick with brand names) 24 grams
Carrots cooked- 11 grams (also veggies and fruits have to be in water only not in syrups)
Banana- 13 grams
Mayonnaise -18 grams
Cream 36%- 27 grams
3 grams from meds
Chicken Breast, no skin, cooked with no seasonings- 13grams
Pear- 17 grams
Green Beans- 18 grams
Cream- 38 grams
Corn oil- 19 grams(has to drink some in with cream) YUCK
3 grams from meds
I have my tupperware containers ready so we when we go out I can just grab her meal and go. There will be no eating meals at restraunts for her no more we will still be able to go out we just have to take her meal with us.
We can only use salt for seasoning no pepper since it comes from a plant- counts for carbs. We however can use PURE flavorings like Lemon, Vanilla, Chocolate(if anyone knows where to get that one let me know) Almond and such but it has to be PURE. WE now label shop.....FUN FUN!
Cameran will have a follow up appointment on April 13th to see how things are going!
We will be keeping a jouranl for her, Occurence of seziures, Fluid intake, wet diapers, weight, food intake and if a seziure happens when and what may have caused it, have to keep a very close eye on that one, also we have to check her Keytones everyday between 4-7 pm they want her to have very high ketones between 8--160 I think it is. But this too has to be monitored very closely. We have to keep track of her bowels they need one atleast every 3 days and for Cameran that is a stetch sinse she only goes maybe once a week even on Glycolax twice a day. We are also to take her to have her sugars checked often maybe once a week, not all Dr.s do this but ours does which is no biggy since her Ped wants to help out anyway possible!
Oh and here is something I would have never even thought of. We can not use Sunscreen, Shampoos, Lotions, Lipsticks and Toothpaste with fragrance in them, they often have added carb that can be absorbed through the skin that trigger seizure activity. So we already made some switches to Johnson and Johnson shampoos(as directed), no lotions and Toms Natural Toothpaste. Sunscreen I will reach that one when we get there. So there is a little of the basics, seems like alot huh! It does to me too but we can do it!
Any meal ideas out there from the other Keto kids would be helpful! Thank you!