Savannah was born healthy at term at a whopping 8 lbs 6 oz. At 4 months we started noticing little jerking movements. She was to old for a startle reflex and because I had a nephew who had myoclonic seizures and a sister who gave great advice we were diagnosed very quickly with infantile spasms. Phillip Pearl in Washington D.C. (whom we love) started us on ACTH and topamax and the spasms resolved. Then we weaned... and they came back. At 9 mos we did a second longer, lower dose course of ACTH and continued topamax and were seizure free for a blessed 2 years. At almost 3 years old Savannah had her first partial complex febrile seizure and has continued to have them only with fevers albeit even a low grade fever. Recently Savannah had her first 2 daytime seizures withing 12 days of each other, they were non febrile with no warning. It has been heartbreaking but we are trying to be brave with this wonderful kiddo.

Thursday, April 21, 2011

Souless Jerks

I really wanted to put a meaner title but my mother reads this. WHA Mercy Med group has officially denied our request for a better MRI for the second time. So we will appeal again. I am hoping Mike has some grounds for a nice nasty legal letter. Honestly, what was law school for if we can't write nasty letters to people who get in my kid's way. I am hoping to find some medical literature about the benefits of a 3 tessla MRI and then... there is always me taking another job to get insurance at UCD. I like my job but if we keep failing at appeals what else can I do?

Thursday, April 14, 2011

She pushes me to the edge just to yank me back before I jump.


I was psycho parent on Tuesday. My "big girl britches" fell and I could not for the life of me put them back on. At swim Sav decided 10 minutes before her practice started she didn't like her fins so she started trying on a bunch in lost and found. Well practice started and there she is STILL trying on fins. I told her to pick a pair and hop in the water. She didn't. She kept on. I tried to help her quickly put a pair on only to have her take them off. I told her to "GET IN." About 8 minutes after practice started she got in and then proceeded to not at all swim but mosey from one side to the next while she was largely ignored by the coaches. They do have like 40 swimmers. At this point I will stop and say I really don't care if my kid ever wins a race. I do care that she does her best. So after I see this I go to the edge and I say if you don't actually swim you will be pulled out of the water. So she dawdles and barely swims to the other side. I yanked her out. Then, finally it clicks and she wants to be in the water so she ran away and jumped in. I was FUMING. (NONE of this story narrates my finest hour). After practice she comes to me and I ask her a series of no brainer questions. "Did you do your best?" "Were you being respectful by not listening to the coaches?" "What do you think your punishment should be?" I made her swim extra laps. She hopped in the pool in a lane where her friend was swimming and did a 2 laps of freestyle and 2 laps of breast stroke like I have NEVER seen before! She was neck and neck with a "normal" kid the whole time. She was using cross pattern so well, left and right moving alternately with her bottom half working in unison. It was a thing of beauty for this Mama (who pays a lot for private O.T.) to see. I couldn't believe it. And I don't understand why she doesn't show her coaches she can do this! I think she has the world fooled so we don't make her work harder. Game on Savannah, Game on.

Wednesday, April 6, 2011

Ha Ha! Remember that time when we only had febrile seizures?

So...we left off and I thought we would be changing from the Keppra. I need to back track here to the land of EEG's (cue magical music).
After we had Hipps arrythmia (the signature and devastating rhythm that is associated with Infantile Spasms) we never actually have seen a seizure on EEG. They were always febrile and nocturnal which never really coincided with our once or twice a year EEG. So we had a 24 hour VEEG (video eeg) a couple weeks ago and guess what? My kids seizures are like the hulk slowly busting out of his clothes and turning green. They are getting stronger and more frequent.

First they were with a high temp,asleep, and one at a time.

Then they were 2 at a time with a lower temp.

Then 3 and 4 with even a temp of 99.2.

Then 5 in a row landed us on Keppra.

Now she is having seizure activity (spikes) but not full on seizures multiple times a night. I saw it with my own eyes which sucked. She is having B.I.R.D.S. Brief intraictal rhythmical discharges. She basically has 3 seconds worth of seizure and then if it went on like 2-3 more seconds she would be having multiple seizures a night. YUCK. So we are not changing from Keppra. No way. We barely have seizure control as is.
So now we are trying to get a better MRI because her Pedi neuro feels certain she has a very small (teensy even) focal cortical dysplasia that has been missed by lower quality MRIs. If we can see a dysplasia and he is certain we will and see it in the Right Frontal lobe, then we could possibly operate and remove the seizure causing part of her brain.
This was an option long ago if she had not responded to a 2nd round of treatment when she was an infant. I keep thinking, "how did I get here again?" To have seizure control with no meds is dreamy but what kind of recovery comes after removing part of her brain? If you have any experience PLEASE email or comment because I need the info. I am so scared and upset these days. I feel so bad for her. I don't want her/our life to change to seizing all the time. It doesn't seem fair that the seizures get to change so late in the game.

Monday, March 21, 2011

Help! Keppra took my child! Or did it?

I have so many mixed emotions these days. Keppra is the drug we started in Feburary of 2010 after being off Epilepsy drugs for 4 years. She had 4 partial complexes (febrile) in one night and our Neuro thought that the pattern was that of a gathering storm. Every fever was a little lower that caused a seizure, and there were more seizures each time. He felt it could culminate in "going status." So my Epilepsy BFF Gail gave me the low down on Keppra Rage.
Before that we had behaivor issues no doubt. After we got that medicine on board I felt like it made her more inflexible, more upset with any change, more tantrums, more disrespect for others wishes. Also I felt it hindered her coordination even further and let me tell you, it wasn't great to begin with.
Over time it did seem to fade a bit and about January we were seeing a difference in behaivor. Things were getting better. Then she had her 2 daytime seizures. We upped the dose and now we feel like we have taken 20 steps back.
So after a particularly rough weekend I happened to run into our Pediatric neuro at the hospital. He asked how we were and I said I was at a breaking point with Keppra. He said "Okay we will change it."
Herein lies the struggle. Is it Keppra or am I not a good mother? Am I unable to give her consistent limits and thus she misbehaves for me? I have a drug that has given us seizure control, something that others would kill for. I don't KNOW that the Keppra is responsible but it feels like it! So, do I change and try something new? The thought of changing it only to lose seizure control would make me feel like the most selfish person ever. If we change it, then to what? Will something else make her ataxic or sleepy?
I have been praying like crazy that Heavenly Father will guide me with this decision because it has to be the right decision. So I write this with 2 requests. Tell me what you know about different meds and their side effects and also if you pray, please remember us in this decision. Thanks, Erica

Monday, March 7, 2011

Savannah at 3







I was asked by another IS (that is Infantile Spasms abbreviated) mom what Savannah looked like at 3. At 3 we were still in Waco and Mike was finishing at Baylor. We had access to an amazing program there where Savannah worked with a Speech Language Path grad student 1 on 1 for 10 hours a week in a preschool setting. At 3 years old she still spoke in mainly one word sentences that were commands. For example, "eat, go, play, etc." She did have a vocabulary of about 100 words and could identify things pretty well. Her receptive (what she understood) vocab was at normal and always has been. But her expressive was I think about a 1.5 year old's at that point. Physically she needed a lot more PT and OT. At that point I was young and not so savvy yet and was basically placated by the Klaras center who did E.I. in Waco. Not to "dis" the great state of Texas but I did not find it to be great for kids with special needs. I was young enough not to demand more and they were happy to let me live in total ignorance and not try and help me obtain services for which Savannah CERTAINLY qualified for.
One picture is of Savannah on a potty. Well that was an unsuccessful attempt. She was not potty trained until 4 years old. Also she still used a passy at that age. It was not for lack of trying and lazy parenting. She had significant sensory issues that I started to understand with the help of a FANTASTIC occupational therapist I met in California. But at the time I did blame myself for letting her have a passy. She gave it up when she was 5 and maybe that seems crazy to anyone else but she needed it until then. We worked with O.T. and at 5 she dropped it easily like a bad habit. That's how I knew she had needed it all those other times I tried to take it away.
Probably the hardest thing at this age (and it continues to a lesser degree today) was aggression. She had very little speech skills so if she wanted something, she took it, and if she wanted you to pay attention, she hit. She also bit (oral sensory input). To me at age 24-25 I wanted to DIE. My kid was the one that hit and bit. I was mortified. Socially my friends didn't really and couldn't really truly understood how I felt and I think I was a bit of a basket case to be friends with anyway. (Probably still am:) I felt very, very alone at that time. They would be potty training and having a co-op pre-school and developmentally we were no where near that. Their children walked at the zoo where as mine had to be confined to a stroller for fear of running away or just plain going so slow that we could never even get through a side walk much less a zoo! So little things that seem so silly now made me feel very badly about myself as a mother when really I was facing some big challenges and fears that they just hadn't had to yet.
I can post more on this later but I have to get some groceries, shower, vacume and various other Monday types of tasks. Questions, Comments, Leave em here and I will try and answer!

Monday, February 28, 2011

Stratus


This is my girl over the moon and completely fixated on going through an African savanna (San Diego Wild Animal Kingdom).

I have an allegory I have decided on for Savannah's development. When she was 1 to 1.5 all the way to 19 months, I wanted her to walk SO bad. I just wanted her to walk! Unfortunately I was so focused on that, I didn't realize how bad fine motor and speech were as well. I was never promised a walking and talking child. In fact I was told to prepare for that future. I have an amazing nephew who has some severe global delays and I could see very clearly what that would look like. So anyway, that day came where she took 2 steps. I desperately tried to get her to do it again. She didn't really for awhile longer. But then she did and again and again.
So my allegory is like this. Waiting for Savannah's development is like a sun behind layers and layers of clouds. Occasionally the sun peaks through the clouds and I SEE it. A skill, an easy day of homework, a bowl of cereal that went mostly in the mouth, a half pool length of good freestyle, a moment when she understands a joke, a bit of flexibility. I may not see it again for a month or even 2 but I have learned that if I saw it once I will see it again one day. I have to have faith. The clouds will eventually part and I will see the sun (skill) again. And then I am on to my next stratus of clouds. Our current layers of clouds that I am in particular waiting on the sun to shine through are:
Eating (do I worry about this much:)
Math, conceptual thinking
Cross pattern. Using opposite sides of the body in a coordinated pattern.
Flexibility emotionally
Flexibility with literal thinking i.e. understanding a joke
Following 2 part directions
Getting up in the morning with some kind of ease


I speak with Gail, my husbands cousin, but she feels more like a sister at this point about the fact that it's been 8 years and I still don't feel like I have completely accepted what infantile spasms has done to us. Well, I think I am starting to accept this finally. Want to know how? I watched my daughters color at church on Sunday. My 4 year old's coloring is much better than Savannah's. I didn't correct her or hound her (I admit I usually do). I sat there not hearing a word of church but repeatedly telling myself to accept MY child. The one sitting next to me. I told her I loved it when she changes colors for hair and dresses and how neat it looked when she hit inside the line. I told her I loved her pictures with detail, etc. I love her so much and my dearest hope is to give her every inch of development I can while providing the same for my other 2.

Wednesday, February 16, 2011

A word on more kids after Infantile Spasms





I received some super lovely emails today and I can't wait to respond to them however it is 1130 and I am pretty exhausted so I will address them tomorrow.. or the next day:) The questions were exactly what I was hoping for, mothers who have kids with IS resolving and starting to deal with the aftermath. I feel you ladies!

So the thing is, these kids put you through the ringer. I felt 45 at age 23. I was young and probably pretty dumb and newly married and we got pregnant. I thought I'd be like other young moms and have a super cute kid and teach her spanish and english and never let her watch princess movies lest they diminish her sense of self and give her the idea that a man would save her. Wow, it feels kind of stupid to even type it. That is what other young mothers had. Well I got hospital stays, eegs, a Dr. telling me she might not walk or talk, a moon face and daily injections of steriods, a baby sitter saying that I was causing her seizures by continuing to work outside the home, crushing meds and listening to other mothers brag about development and just not able to handle it. I was very likely clinically depressed for a good while. I didn't sleep and watched her for seizures in the night and then took medicine to sleep and was a zombie all day long until I stayed up again. It was pretty ugly when I look back. Still I can acknowledge that God was very firmly moving in my life. (I'll touch on that later)

So things got better but for 4 years we just wondered if we could have another child. We felt alternately guilty for only having/wanting one and overwhelmed by her. We finally gutted it up and got pregnant again with Carolina. It is not without challenges because babies are you know, a LOT of work. Savannah loved Carolina so much. I think I was pretty intensely focused on Savannah and she was pretty glad to have some of my focus off her. We all relaxed a little. As Carolina has grown our spacing has been great. Savannah is developmentally delayed and that closes the age gap quite a bit. They are the best of friends (occasionally the worst also). They Barbie, Polly Pocket and Dress up for hours. When Savannah is with Carolina she speaks more freely than with ANYONE else. I swear if our speech therapist came and listened outside the play room door her scores would go up lots. Carolina understands what "the shakes" are. She knows about them and now that we have daytime seizures we have tried to talk to her about if Savannah stops talking to you or shakes come get us. I think she understands a fair bit. Carolina's life will always be affected by her sister but that is the way families are and God has a purpose in that. I think that having more children after one with special needs changed us from a "special needs family" to a family with a special needs child. In short, I think more kids are great for the child who has developmental delays and good for mama and daddy too. It's pretty cool to just go to the pediatrician once or twice a year. Because we fought for development with Savannah when Carolina developed naturally on her own we thought she was super smart and gifted at times. Then I'd check the books...nah, right on time! Carolina is a huge blessing to all of us but I venture to say her role in Savannah's life has been pretty crucial. We have had a third child a boy Collin but definitely the jump after Savannah was the hardest. Again, this is my story and I don't want to be giving advice just maybe saying "here is what worked for us."