Since Abigail's first "relapse seizure" on Monday when she had a seizure following a breath holding spell she has had 1 a day with the exception of yesterday where she had a breath holding episode, but no seizure to follow. Monday the 13th she had that one breath holding episode that resulted in an episode, then Tuesday the 14th she had a seizure out of nowhere. She was extremely calm and just went into it. I was even holding her. On Wed the 15th she did not have a seizure at all that day, but she did have a breath holding episode (I'm still not certain if those are seizures themselves or not). Today she had a seizure that was also out of nowhere. I was holding her belly down over my lap and she was calm as can be. The only difference between Monday, Tuesday, Wednesday, and Today is that on Wednesday (when she didn't have a seizure) she had a nap..Neither on Monday, Tuesday or Today did she get a nap. She fights it! It takes so much effort on her part to fall asleep! I almost had her asleep in my arms - she even closed her eyes and did one of those myoclonic jerk things that she does as she's falling asleep, but then she woke up and started stretching. She seemed pretty awake, so I laid her back down in her wagon to hopefully get her to fall asleep in there (she was getting very heavy), but she didn't..she actually started cooing and being pretty happy. So I left her be. She started getting a little fussy again so I picked her back up and draped her over my lap where she sat completely content for a good 20 minutes, I would say, before she had her seizure out of the blue.
The 3 seizures she's had this week all happened around 4 or 5 o'clock pm on the days she did not get a nap at all. Today's was at 4:45pm. She has still been acting very calm and almost happy lately that I'm not too worried yet. Her head control is getting spectacular as well, it blows me away sometimes how long she can hold her head up and look around! I want to test my nap to seizure connection theory a few more days before I email the doctors (especially since we haven't seen another breath holding spell resulting in a seizure) She also didn't have any breath holding spells today - so that's bizarre that one day she will have a breath holding spell before her seizure, the next day she won't. The next day she would have a breath holding spell but no seizure, and then today another seizure with no breath holding spell...AbiNormal, I guess.
Her appetite has been coming back too! She ate 16 oz for Shiree today within 3 hours! And then came home and ate another 16 within 6 hours. So that makes 39 oz so far today (including her 1st morning bottle) - that's a lot! I have been adding oatmeal cereal and baby food to all of her bottles while still fortifying her formula calories, so she is definitely getting enough. I bet she's going through a growth spurt - she got long and skinny again there for a minute, and now her belly is starting to come back.
So, this also is why I wan't sure or "sold" on the fact that she was teething or not. I want to just attribute all her fussiness to teething, but now she is so calm and content all day and we still haven't seen any teeth. I know sometimes teething comes in spurts but seriously there have been so many times I've thought teething and every time she calms down with no teeth to show for anything....that's why I couldn't sell myself that she was for sure teething because I've thought it so many times before and each time it wasn't accurate. I just wish her teeth would come in already so I didn't have to guess anymore. But then again, she'll look so much older with teeth, and probably goofier! But I would hate to have her teething at the same time Max, her younger brother, decides to make his entrance into the world..I either need her to get it over with before he comes or wait until he's at least 4 months old..Who knows what will happen. I mean, if she takes the whole teething thing well then it doesn't matter when it happens, but based on her track record she probably won't take it very well. haha
Anyway, like I've said, we've seen 3 seizures this week - which is still a HUGE improvement from the 8/day we were seeing less than a month ago, and we've seen some good progress with the increased seizure control as well. And the one day she didn't have seizure, she took a nap. I just wonder if maybe her body gets so exhausted that it sends itself into a seizure to wear it out and let it rest? Or something like that. She didn't get to sleep on her own so her brain/body is responding to that and allowing her brain/body to rest..because her seizures are wearing her out again for a few hours at a time. Her seizure today was at 4:45 and she slept until 7. Or maybe i'm just reaching and grasping and she is just having seizures because she has a seizure disorder. Tomorrow-Monday I will test out my theory of nap vs seizure and see what happens. After a few more days of trying out my theory, then I will contact her doctors and let them know my results and if there should be a next step to take.
Well, Abi is finally in bed now and I think she's sleeping, so I'm going to go to sleep while I can! Thanks for reading and I hope you all have a wonderful night as well!
This is AbiNormal!
(oh, P.S. we may have found a morning routine that works for her! A routine at all that works for her! Let's see how long this one lasts! :))
My daughter Abigail was born having seizures. This is our story of diagnosing the problem and living with epilepsy.
Thursday, January 16, 2014
Monday, January 13, 2014
Remember when?
Remember back in July/August when Abigail was happy, smiling, cooing, sucking on her hands, and just being such a fun baby? We have officially seen glimpses of that baby again! The past 2.5 days Abi has been overall pretty dang happy. We've seen smiles, and heard coos and even saw her sucking on her hands-just once and I just barely saw that for the first time tonight while she was laying on her belly. She has been getting so so strong, her head control is coming back in even better and you should see the strength this baby has on her belly! She's even doing really well sitting up! The things were dealing with the past week are finally starting to settle down and her attitude is starting to look up! We are off of the amoxicillin and are down to just the meds she is actually supposed to be on for her disorder (which right now is only 4!) it's so nice!
Do you also remember when she was doing so well she'd have those pesky breath holding episodes? The ones that would last for seemingly ever and make her turn blue then have a seizure? We saw one of those tonight for the first time too.. bugger! Her first seizure in 10 days happened today. Is is just a coincidence that she had been calming down and then we saw one? I think not. Jaren refuses to admit that there is any type of connection - but i'm convinced now. She got mad, the seizures stopped, she started calming back down - had a few solid days of overall peace and happiness, and bam! another seizure. I don't know why it happens like that, but it does. Now, I put "overall" in italics because there were still moments of straight fits that she would throw. Sometimes she would be happy go lucky and other moments she would be screaming bloody murder, could be the teething, could be change of brain activity (which maybe hurts her head), could be tummy ache, I have NO idea. But overall i'd say she calmed down immensely and I saw some great things yesterday eve and today and Veronica said she saw good things on Saturday and Sunday.
Abi and I took a nap together today when I got back from school and after her Early Intervention Eye Therapy session. She was completely content and half-smiling while her Dad and Sister were holding her, then they put her down, she got mad. I picked her back up to go to drama practice and she was happy again all the way until the end of practice (It was about an hour long). I put her coat on her to walk back home and she was fine until I picked her up then she started getting just a little bit fussy. She was slightly fussy the whole walk home. I got home, put her on the floor to go get her medicine and while I was in there pulling up the 2 syringes she would need at that time she got mad enough to hold her breath. When I came back into the front room she had been holding her breath for maybe 5 seconds but there was no breath in sight to come. She started turning a little blue and doing that panic thing that she used to do when these breath holding episodes were happening before. It was harder to watch this time because I hadn't seen it in so long, and she was doing SO WELL. Immediately after she finally was able to take a full breath-which took a few attempts of labored breathing-she went right into a seizure. It's hard to tell if the breath holding thing is part of the seizure or if it causes the seizure, or what..but either way they do happen together. She immediately got EXHAUSTED and quickly gave her the meds she needed and off to sleep she went for about an hour. She just barely woke up about 5 minutes ago - well that's the first time I heard here, and at first she seemed alright, kinda cooing - then she got really mad, and now she is still mad. I'm sure her head hurts or something, or she's just exhausted, but I can only imagine as I've never gone through it myself.
I don't know exactly what this episode today means yet being the first time we saw it. I hope its just a fluke - I hope it wasn't the iron that really was helping! We took her off of that just about a week ago - If it is then we'll just have to put her back on it and deal with the constipation again. I swear, if it's not one thing it's another. We may try to increase the Potiga again and see if that helps, but I kind of want to wait and see if this is going to become a pattern or not. There was nothing that I know of that pissed her off to cause her to hold her breath, just that she got mad and it happened. I have recently seen her hold her breath again a few times and I was always so happy when it didn't progress too long and she was fine, but this was the first time I had seen it to this point since the summer. I don't know if i'd prefer more Potiga to do the trick, or if I prefer Iron to be the fix for this. (If there even is a fix.) These breath holding things were happening last time when her seizures were 'controlled' and she was progressing - so maybe there's some connection there too? Or maybe that is making it too complicated and it is something as simple as Iron..I just don't know. I'll present it to her doctors and see what they all have to say about it. I do know that we started the Iron back in August and very soon after she stopped having the spells, but Dr. Larsen (pediatrician) mentioned that it usually wouldn't work that fast as the body would have to have time to absorb the Iron and give the bones enough time to make more red blood cells...but I only hold on to that as wishful thinking that it was not in fact the Iron so that 1 we don't have to put her back on it and 2 I won't feel guilty for being so pushy to get her off of it.
Abi fell back asleep again. I guess I picked her up too soon. I know that most of the time she isn't really 'awake' when she wakes up and not to bother her, but that's during naps and sleep - I haven't seen a seizure in a while so I didn't know if that was the case with that too - it appears to be.
Anyway, Abi has been doing great overall and becoming more happy again, and i'm again seeing more progression. Coincidence that a seizure happened after she calmed back down, where it seems she has more when she calm and less when she's irritable? Coincidence that it was a breath holding spell just like before when her seizures were 'controlled'? I really hope we figure something out by the end of March when her little brother gets here....Actually, I don't think I've ever told you guys through the blog! Abigail is going to be a big sister at the end of March or beginning of April! (hopefully April - but that's besides the point). There IS a chance this next baby could get the same issue Abi has with it being a gene disorder it's very POSSIBLE that Max (it's a boy, and his name is Max) could get the disorder too - but it is NOT PROBABLE. Jaren nor I have ever had seizures, and none of our family members have ever had seizures. This gene is a dominant gene so if anyone had it, it would be the one to express itself and seizures would be seen. So it is possible, but we are not really worried that it will happen...well, i'm not too worried. I also truly believe this baby boy is being sent to us to be Abi's little buddy. He's meant to come here to help Abi grow and to protect her when they are older and how could he do that if he has the same disorder? However, if he does have the same disorder, at least we will already know what to do. We are very excited to get a little baby boy, finally, but we are also not necessarily in a hurry at this point to get him here. March can take a long time to get here and I'd be okay with that, and I'd be even more okay if he hung out until April. Like I said, VERY VERY excited to have him here, just not in an extreme hurry to get him here. We still need to get Abi in a better place and figure out more of her 'isms' and what makes her tick. She's going to need a new car-seat too...but I guess that's not as important.
Anyway, when it's not one thing, it's another (but what else would you expect with AbiNormal?) but we will get it worked out, I'm sure. I am very pleased with where I've seen Abi the last few days and am really hoping tonight was just a fluke (even though I have been seeing her breath holding become more frequent recently, so IDK). I'll let you guys know what the doctors say when I hear back from them. Thanks for reading everyone!
This is AbiNormal
Do you also remember when she was doing so well she'd have those pesky breath holding episodes? The ones that would last for seemingly ever and make her turn blue then have a seizure? We saw one of those tonight for the first time too.. bugger! Her first seizure in 10 days happened today. Is is just a coincidence that she had been calming down and then we saw one? I think not. Jaren refuses to admit that there is any type of connection - but i'm convinced now. She got mad, the seizures stopped, she started calming back down - had a few solid days of overall peace and happiness, and bam! another seizure. I don't know why it happens like that, but it does. Now, I put "overall" in italics because there were still moments of straight fits that she would throw. Sometimes she would be happy go lucky and other moments she would be screaming bloody murder, could be the teething, could be change of brain activity (which maybe hurts her head), could be tummy ache, I have NO idea. But overall i'd say she calmed down immensely and I saw some great things yesterday eve and today and Veronica said she saw good things on Saturday and Sunday.
Abi and I took a nap together today when I got back from school and after her Early Intervention Eye Therapy session. She was completely content and half-smiling while her Dad and Sister were holding her, then they put her down, she got mad. I picked her back up to go to drama practice and she was happy again all the way until the end of practice (It was about an hour long). I put her coat on her to walk back home and she was fine until I picked her up then she started getting just a little bit fussy. She was slightly fussy the whole walk home. I got home, put her on the floor to go get her medicine and while I was in there pulling up the 2 syringes she would need at that time she got mad enough to hold her breath. When I came back into the front room she had been holding her breath for maybe 5 seconds but there was no breath in sight to come. She started turning a little blue and doing that panic thing that she used to do when these breath holding episodes were happening before. It was harder to watch this time because I hadn't seen it in so long, and she was doing SO WELL. Immediately after she finally was able to take a full breath-which took a few attempts of labored breathing-she went right into a seizure. It's hard to tell if the breath holding thing is part of the seizure or if it causes the seizure, or what..but either way they do happen together. She immediately got EXHAUSTED and quickly gave her the meds she needed and off to sleep she went for about an hour. She just barely woke up about 5 minutes ago - well that's the first time I heard here, and at first she seemed alright, kinda cooing - then she got really mad, and now she is still mad. I'm sure her head hurts or something, or she's just exhausted, but I can only imagine as I've never gone through it myself.
I don't know exactly what this episode today means yet being the first time we saw it. I hope its just a fluke - I hope it wasn't the iron that really was helping! We took her off of that just about a week ago - If it is then we'll just have to put her back on it and deal with the constipation again. I swear, if it's not one thing it's another. We may try to increase the Potiga again and see if that helps, but I kind of want to wait and see if this is going to become a pattern or not. There was nothing that I know of that pissed her off to cause her to hold her breath, just that she got mad and it happened. I have recently seen her hold her breath again a few times and I was always so happy when it didn't progress too long and she was fine, but this was the first time I had seen it to this point since the summer. I don't know if i'd prefer more Potiga to do the trick, or if I prefer Iron to be the fix for this. (If there even is a fix.) These breath holding things were happening last time when her seizures were 'controlled' and she was progressing - so maybe there's some connection there too? Or maybe that is making it too complicated and it is something as simple as Iron..I just don't know. I'll present it to her doctors and see what they all have to say about it. I do know that we started the Iron back in August and very soon after she stopped having the spells, but Dr. Larsen (pediatrician) mentioned that it usually wouldn't work that fast as the body would have to have time to absorb the Iron and give the bones enough time to make more red blood cells...but I only hold on to that as wishful thinking that it was not in fact the Iron so that 1 we don't have to put her back on it and 2 I won't feel guilty for being so pushy to get her off of it.
Abi fell back asleep again. I guess I picked her up too soon. I know that most of the time she isn't really 'awake' when she wakes up and not to bother her, but that's during naps and sleep - I haven't seen a seizure in a while so I didn't know if that was the case with that too - it appears to be.
Anyway, Abi has been doing great overall and becoming more happy again, and i'm again seeing more progression. Coincidence that a seizure happened after she calmed back down, where it seems she has more when she calm and less when she's irritable? Coincidence that it was a breath holding spell just like before when her seizures were 'controlled'? I really hope we figure something out by the end of March when her little brother gets here....Actually, I don't think I've ever told you guys through the blog! Abigail is going to be a big sister at the end of March or beginning of April! (hopefully April - but that's besides the point). There IS a chance this next baby could get the same issue Abi has with it being a gene disorder it's very POSSIBLE that Max (it's a boy, and his name is Max) could get the disorder too - but it is NOT PROBABLE. Jaren nor I have ever had seizures, and none of our family members have ever had seizures. This gene is a dominant gene so if anyone had it, it would be the one to express itself and seizures would be seen. So it is possible, but we are not really worried that it will happen...well, i'm not too worried. I also truly believe this baby boy is being sent to us to be Abi's little buddy. He's meant to come here to help Abi grow and to protect her when they are older and how could he do that if he has the same disorder? However, if he does have the same disorder, at least we will already know what to do. We are very excited to get a little baby boy, finally, but we are also not necessarily in a hurry at this point to get him here. March can take a long time to get here and I'd be okay with that, and I'd be even more okay if he hung out until April. Like I said, VERY VERY excited to have him here, just not in an extreme hurry to get him here. We still need to get Abi in a better place and figure out more of her 'isms' and what makes her tick. She's going to need a new car-seat too...but I guess that's not as important.
Anyway, when it's not one thing, it's another (but what else would you expect with AbiNormal?) but we will get it worked out, I'm sure. I am very pleased with where I've seen Abi the last few days and am really hoping tonight was just a fluke (even though I have been seeing her breath holding become more frequent recently, so IDK). I'll let you guys know what the doctors say when I hear back from them. Thanks for reading everyone!
This is AbiNormal
Wednesday, January 8, 2014
At a loss this time...
I'd like to think that, when it comes to Abi, I've got her pretty figured out. If something changes I can usually make a good educated guess as to whats causing the change and when it will get better, or what the next logical step would be. This time however, that is not at all the case. She has been very irritable for the past week now and I cannot figure out why. There are SEVERAL possibilities and theories that I have, but I just can't pin down the one most likely. Now, I know that there is this crazy, unexplained, completely AbiNormal connection between when Abigail gets very irritable and the number of seizures she has that day-it actually decreases. I have seen it on many more than one occasion. It is an observation I have made several times..But Abi has had 0 - yes ZERO - seizures since Jan 3, and she only had 1 on Jan 2. Abigail started getting a little irritable on New Years Eve (12/31) and On New Years Day (1/1) was when we saw the first decrease in seizures to 5 that day from and average of 8 or 9 per day, then on (1/2) she only had 1 then (1/3) she went down to 0 and has had none since then! Since I had seen that connection before I was not at all surprised to see the decrease in seizure activity, but I am surprised that I STILL haven't seen one, even though she has started to calm down.
She started with just seeming like she was uncomfortable, like she wasn't feeling too hot. Her older sister and Dad both just got over sicknesses (well, Olivia was actually getting over her 2nd sickness in that week-she got sick, got better, then got sick again) so I figured Abi was getting a little of what they had. I noticed she was pretty warm fairly often - not 106 degree fever like back in July, but warm enough that I would strip her down to her diaper and pat her down with a cool, damp cloth. I'm not sure if I had mentioned this in any previous posts but Abigail has had some trouble sleeping for quite a while. She wakes up around the same time every morning (between 3:30 and 4:30 am) screaming and arching. I learned that if I just let her scream she will eventually find sleep again, but not without a fight. When we finally got home from Christmas vaca, the night of Jan 1st, I gave Abigail some Tylenol just to try to soothe her high temperatures and whatever else might be giving her some pain. Abigail slept more soundly that night than I think she ever had in her life before that! The way that I laid her down that night is the exact same position I found her the next morning. She didn't budge. She didn't arch, she didn't toss, she didn't make one peep. It was incredible! Even when she is sleeping well I will usually find her turned sideways or something in the morning -- this morning, nothing..as sound as sound can be (i'm still in awe about it). I figured that was the trick, that Tylenol was all she needed and she'd be fine!
I was shocked when I found out how pissed she was at her babysitters house that day. It was our first day back and Abi was FURIOUS. She seemed to be in SO much pain and pretty much inconsolable all day long. Shiree was able to calm her down once or twice and got her to eat a little but nothing more. The next day was the same, only Abi was mad enough and in enough that Shiree even called the school to ask if there was something more she could do-I told her about Abi being warm and to try the stripping/patting thing so she did. When I got there at the end of the day she said that seemed to work for a little bit and then proceeded to tell me that her kids used to get pretty upset with an ear infection. An ear infection is not something I would have EVER thought about on my own. I took her in and the doc saw a little bit of red in one ear so we started her on Amoxicillin. Little did I know that Amox. causes tummy troubles and diarrhea! I'm not sure that if I knew that, that I would have started it at all..but it's good I did because her pediatrician yesterday confirmed redness in both her ears. So now Abi is dealing with potential sickness, potential ear infection, tummy troubles, and diarrhea..she has not been happy AT ALL.
On top of all of that we started a new medicine that could very well be contributing to any or all of this. The medicine is Potiga, and last time I posted we had just gotten the clear for it and I was going to pick it up and start her the next day-which we did. So Abigail started Potiga on Dec 27th. The way her first few doses were set up made it so that we probably wouldn't see any results for at least 2 weeks - the dose we want to work up to is 45mg/day. That would be given to her 3x per day at 3mL per dose...We started with 1mL once a day, at night...so I really didn't (and still don't) think Potiga was playing any role in her seizure activity, or decrease in seizure activity. We have since moved up to 3mL once a day, but still that is only 1/3 of her target dose and only once a day on a medicine that is supposed to be given 3 times/day.
Abi has literally been inconsolably pissed for a whole week now and there is seemingly nothing we can do to fix it.
Here is my 1st theory to why Abi is so upset:
Abi has started teething, which caused the ear infection. The pain of teething and ear infection is what was causing the irritability and the irritability is what caused the decrease in seizures. We then put her on the Amox. and that just irritated her belly and made it so that she was even more upset..
We have tried tylenol and ibuprofen for the teething (sometimes it would show an effect, sometimes it wouldn't seem to have any effect at all). We tried mylecon drops for the gas she had been exhibiting- again, sometimes it would show to be effective, sometimes not. I started the Aloe back up (if you remember from last post I stopped the Aloe juice just to see if it had an effect on her rash--as I expected, it didn't) it def made her more regular but her stools were still very hard ((we got the OK to take her off the Iron, finally! let's hope that helps with that!))
--> my husband thinks I'm crazy and it's very illogical to chalk the lack of seizures up to simple irritability when we just started a new medicine for the very purpose to stop the seizures...even though she's not even close to her full intended dose.
Here is my husband's theory to why Abi is so upset:
Like we have also seen on multiple times, it seems like Abigail's seizures, at times, act as a release to her. It almost 'resets' her brain to where she can calm down. He believes that the Potiga has made it so that she can't have seizures and that makes her brain mad. So the Potiga is the reason she is not having the seizures, and the fact that she is not having seizures is what's making her so upset because now her brain can't 'reset' and calm down.
-->His is not a terribly awful theory, but, I personally, just do not agree that 1mL of potiga (which is 1/3 of a dose) once per day (which is also 1/3 of what her daily dose should be) would have ANY impact at all on her seizure activity. ((Like I mentioned before, Abi is working up to a full dose of 3mL 3 times per day (so 9mL total in the day). It just doesn't make sense that 1mL a day would have any affect at all (we have since moved up to 3mL once a day - but she started getting irritable and her seizure count went down 3 days before the dose increase. And he totally leaves out that she is obviously in pain. Something is very much obviously hurting/bothering her.
Based on the last 2 days of her becoming a little more relaxed (and almost happy) at points throughout the day and we still haven't seen a seizure (or a tooth), here is my new theory:
I haven't ruled out teething completely, but I've put it on the back-burner because 1. I have no idea what to even look for, 2. I have seen no teeth, 3. tylenol/ibuprofen is hit or miss. Dr. Larsen did feel around her mouth yesterday and confirm there may be a tooth coming in on the top - which also would be a little AbiNormal, because typically it's the bottom teeth that come in first. I am also very much wishful thinking that the Potiga is indeed affecting her seizure control already. I mean, seriously, how cool would it be if only 15mg (3mL) of Potiga once a day completely controls her seizures, and that is all we need! I do not agree that it's the lack of seizures that's making her irritable, although, I do agree that there were times they seemed to be a sort of release for her....but not all the time, so IDK..I am still certain that her irritability is playing a part in her seizure control, but it is odd that it has been so long and even though there are moment of calm and content and alert there has still been no seizures. I still think she got an ear infection while coming down from a sickness and maybe that was causing quite a bit of discomfort, which caused the irritability. Then we started the Amox and caused more discomfort and continued irritability. I also think I expected immediate results from the Amox. (or at least hoped for them). I think now we just don't change anything (even though her increase in Potiga is due in 2 days, I want to keep it here, finish out the Amox. prescription, continue her probiotics (which we just started last night) and see if she continues to relax any more within the next couple of days. I have to remember it hasn't even been a week since we found the ear infection and started the Amox.
I also kinda worry that the Gabapentin may have been playing a role in her ability to relax afterall, as it was initially prescribed to her for neuro-irritability. I really don't think it was helping and the epileptologist agrees, but because I'm in the middle of it I can't help but think "what if". So for right now what my next step to do is just continue what we are doing - not changing anything else. Finish out the Amox. while continuing to give her Probiotics everyday to help soothe that potential irritation. We got her off the iron so hopefully that will help with some tummy issues. Not increase the Potiga yet, even though the increase is due (I haven't talked to her doctors about that yet, but they are pretty good at going with my ideas if they seem to be logical and don't seem to be too dangerous). IF after her Amox. is all gone, the probiotics and lack of iron don't show to have any affect, and there are still no signs of any teeth within the next week and a half THEN I will look into trying Gabapentin again. She was on such a small dose and it wouldn't hurt at all to try again, but I feel like there are just SO MANY other things going on right now that we just need to stop changing stuff, give her little body another week or two to sort out all the different everythings that are going into and then see what happens from there. On top of all of that, she just got 3 of her 5 1yr old immunizations yesterday. So there's something else.
See what I mean? I have NO idea what the root of her irritability is or how to fix it..and there are so many things it could possibly be. I don't know if she is not having seizures because she's so pissed or because the new Potiga is really helping.. I'm at a loss this time and I don't like it! I just have to sit back and wait, see what happens. And for me that is truly not a problem, but when it affects other people, like her babysitter, and starts stressing them out then I feel bad and feel like I need to do something now...but I just don't know what!
So, Overall Abi had a wonderful Christmas break, but since the end of Christmas break (which seems like an eternity ago, but really wasn't even a week) she has been incredibly pissed.
We started Potiga (12/27)
4 days later she started not feeling well (12/31)
Next day was pretty irritable and her seizure count dropped (1/1)
Abi Only had 1 seizure all day (1/2)
figured out she may have an ear infection (caused by teething? who knows) (1/2)
Got her started on Amoxicillin (1/2)
noticed a softening in her stool (1/3)
she got even more mad and stopped having seizures all together (1/3)
Full on Diarrhea and gassy (1/4)
Very irritable and uncomfortable (1/4-1/5)
Started calming down - had a better day for Shiree (1/6)
Another better day for babysitter (1/7)
Immunizations and doctor visit (1/7)
Stopped giving her Iron and started Probiotics (1/7)
Abi had another hard day for Shiree, but then I brought her home and she calmed down--for a little, but started getting fussy again. Took a [not very solid] nap but then ate about 9oz and was calm and almost playful for a good 1.5-2 hrs before getting fussy again- fell back asleep around 8:30 (1/8)
I just want things to calm down so we can see what's working and what's not. What's causing what and how to fix it. Poor thing is just so uncomfortable right now.
I also want you to know that I DID NOT intend this post to be as long as it is. I even re-wrote it to try to shorten it because the last one had a back story all the way from Dec 27 when we started Potiga to today--I was about halfway there and realized it was WAY overwhelming and changed it---still pretty overwhelming, but i'm done typing for now. Maybe I'll go back and proofread later, but for now what you see is what you get.
I'm very happy to see the glimpses of calm Abi during the day - it gives me hope that we are on the down-slope of whatever this was and there's a light at the end of the tunnel. I just feel so bad that she is so hard for Shiree, I really don't want to overwhelm other people with my AbiNormal. She's not overwhelming to me, but she's mine - and she seems to be most calm with me so it truly is much harder on other people and I just feel so badly!
Anywho - I'm at a loss of what to think -
This is AbiNormal!
She started with just seeming like she was uncomfortable, like she wasn't feeling too hot. Her older sister and Dad both just got over sicknesses (well, Olivia was actually getting over her 2nd sickness in that week-she got sick, got better, then got sick again) so I figured Abi was getting a little of what they had. I noticed she was pretty warm fairly often - not 106 degree fever like back in July, but warm enough that I would strip her down to her diaper and pat her down with a cool, damp cloth. I'm not sure if I had mentioned this in any previous posts but Abigail has had some trouble sleeping for quite a while. She wakes up around the same time every morning (between 3:30 and 4:30 am) screaming and arching. I learned that if I just let her scream she will eventually find sleep again, but not without a fight. When we finally got home from Christmas vaca, the night of Jan 1st, I gave Abigail some Tylenol just to try to soothe her high temperatures and whatever else might be giving her some pain. Abigail slept more soundly that night than I think she ever had in her life before that! The way that I laid her down that night is the exact same position I found her the next morning. She didn't budge. She didn't arch, she didn't toss, she didn't make one peep. It was incredible! Even when she is sleeping well I will usually find her turned sideways or something in the morning -- this morning, nothing..as sound as sound can be (i'm still in awe about it). I figured that was the trick, that Tylenol was all she needed and she'd be fine!
I was shocked when I found out how pissed she was at her babysitters house that day. It was our first day back and Abi was FURIOUS. She seemed to be in SO much pain and pretty much inconsolable all day long. Shiree was able to calm her down once or twice and got her to eat a little but nothing more. The next day was the same, only Abi was mad enough and in enough that Shiree even called the school to ask if there was something more she could do-I told her about Abi being warm and to try the stripping/patting thing so she did. When I got there at the end of the day she said that seemed to work for a little bit and then proceeded to tell me that her kids used to get pretty upset with an ear infection. An ear infection is not something I would have EVER thought about on my own. I took her in and the doc saw a little bit of red in one ear so we started her on Amoxicillin. Little did I know that Amox. causes tummy troubles and diarrhea! I'm not sure that if I knew that, that I would have started it at all..but it's good I did because her pediatrician yesterday confirmed redness in both her ears. So now Abi is dealing with potential sickness, potential ear infection, tummy troubles, and diarrhea..she has not been happy AT ALL.
On top of all of that we started a new medicine that could very well be contributing to any or all of this. The medicine is Potiga, and last time I posted we had just gotten the clear for it and I was going to pick it up and start her the next day-which we did. So Abigail started Potiga on Dec 27th. The way her first few doses were set up made it so that we probably wouldn't see any results for at least 2 weeks - the dose we want to work up to is 45mg/day. That would be given to her 3x per day at 3mL per dose...We started with 1mL once a day, at night...so I really didn't (and still don't) think Potiga was playing any role in her seizure activity, or decrease in seizure activity. We have since moved up to 3mL once a day, but still that is only 1/3 of her target dose and only once a day on a medicine that is supposed to be given 3 times/day.
Abi has literally been inconsolably pissed for a whole week now and there is seemingly nothing we can do to fix it.
Here is my 1st theory to why Abi is so upset:
Abi has started teething, which caused the ear infection. The pain of teething and ear infection is what was causing the irritability and the irritability is what caused the decrease in seizures. We then put her on the Amox. and that just irritated her belly and made it so that she was even more upset..
We have tried tylenol and ibuprofen for the teething (sometimes it would show an effect, sometimes it wouldn't seem to have any effect at all). We tried mylecon drops for the gas she had been exhibiting- again, sometimes it would show to be effective, sometimes not. I started the Aloe back up (if you remember from last post I stopped the Aloe juice just to see if it had an effect on her rash--as I expected, it didn't) it def made her more regular but her stools were still very hard ((we got the OK to take her off the Iron, finally! let's hope that helps with that!))
--> my husband thinks I'm crazy and it's very illogical to chalk the lack of seizures up to simple irritability when we just started a new medicine for the very purpose to stop the seizures...even though she's not even close to her full intended dose.
Here is my husband's theory to why Abi is so upset:
Like we have also seen on multiple times, it seems like Abigail's seizures, at times, act as a release to her. It almost 'resets' her brain to where she can calm down. He believes that the Potiga has made it so that she can't have seizures and that makes her brain mad. So the Potiga is the reason she is not having the seizures, and the fact that she is not having seizures is what's making her so upset because now her brain can't 'reset' and calm down.
-->His is not a terribly awful theory, but, I personally, just do not agree that 1mL of potiga (which is 1/3 of a dose) once per day (which is also 1/3 of what her daily dose should be) would have ANY impact at all on her seizure activity. ((Like I mentioned before, Abi is working up to a full dose of 3mL 3 times per day (so 9mL total in the day). It just doesn't make sense that 1mL a day would have any affect at all (we have since moved up to 3mL once a day - but she started getting irritable and her seizure count went down 3 days before the dose increase. And he totally leaves out that she is obviously in pain. Something is very much obviously hurting/bothering her.
Based on the last 2 days of her becoming a little more relaxed (and almost happy) at points throughout the day and we still haven't seen a seizure (or a tooth), here is my new theory:
I haven't ruled out teething completely, but I've put it on the back-burner because 1. I have no idea what to even look for, 2. I have seen no teeth, 3. tylenol/ibuprofen is hit or miss. Dr. Larsen did feel around her mouth yesterday and confirm there may be a tooth coming in on the top - which also would be a little AbiNormal, because typically it's the bottom teeth that come in first. I am also very much wishful thinking that the Potiga is indeed affecting her seizure control already. I mean, seriously, how cool would it be if only 15mg (3mL) of Potiga once a day completely controls her seizures, and that is all we need! I do not agree that it's the lack of seizures that's making her irritable, although, I do agree that there were times they seemed to be a sort of release for her....but not all the time, so IDK..I am still certain that her irritability is playing a part in her seizure control, but it is odd that it has been so long and even though there are moment of calm and content and alert there has still been no seizures. I still think she got an ear infection while coming down from a sickness and maybe that was causing quite a bit of discomfort, which caused the irritability. Then we started the Amox and caused more discomfort and continued irritability. I also think I expected immediate results from the Amox. (or at least hoped for them). I think now we just don't change anything (even though her increase in Potiga is due in 2 days, I want to keep it here, finish out the Amox. prescription, continue her probiotics (which we just started last night) and see if she continues to relax any more within the next couple of days. I have to remember it hasn't even been a week since we found the ear infection and started the Amox.
I also kinda worry that the Gabapentin may have been playing a role in her ability to relax afterall, as it was initially prescribed to her for neuro-irritability. I really don't think it was helping and the epileptologist agrees, but because I'm in the middle of it I can't help but think "what if". So for right now what my next step to do is just continue what we are doing - not changing anything else. Finish out the Amox. while continuing to give her Probiotics everyday to help soothe that potential irritation. We got her off the iron so hopefully that will help with some tummy issues. Not increase the Potiga yet, even though the increase is due (I haven't talked to her doctors about that yet, but they are pretty good at going with my ideas if they seem to be logical and don't seem to be too dangerous). IF after her Amox. is all gone, the probiotics and lack of iron don't show to have any affect, and there are still no signs of any teeth within the next week and a half THEN I will look into trying Gabapentin again. She was on such a small dose and it wouldn't hurt at all to try again, but I feel like there are just SO MANY other things going on right now that we just need to stop changing stuff, give her little body another week or two to sort out all the different everythings that are going into and then see what happens from there. On top of all of that, she just got 3 of her 5 1yr old immunizations yesterday. So there's something else.
See what I mean? I have NO idea what the root of her irritability is or how to fix it..and there are so many things it could possibly be. I don't know if she is not having seizures because she's so pissed or because the new Potiga is really helping.. I'm at a loss this time and I don't like it! I just have to sit back and wait, see what happens. And for me that is truly not a problem, but when it affects other people, like her babysitter, and starts stressing them out then I feel bad and feel like I need to do something now...but I just don't know what!
So, Overall Abi had a wonderful Christmas break, but since the end of Christmas break (which seems like an eternity ago, but really wasn't even a week) she has been incredibly pissed.
We started Potiga (12/27)
4 days later she started not feeling well (12/31)
Next day was pretty irritable and her seizure count dropped (1/1)
Abi Only had 1 seizure all day (1/2)
figured out she may have an ear infection (caused by teething? who knows) (1/2)
Got her started on Amoxicillin (1/2)
noticed a softening in her stool (1/3)
she got even more mad and stopped having seizures all together (1/3)
Full on Diarrhea and gassy (1/4)
Very irritable and uncomfortable (1/4-1/5)
Started calming down - had a better day for Shiree (1/6)
Another better day for babysitter (1/7)
Immunizations and doctor visit (1/7)
Stopped giving her Iron and started Probiotics (1/7)
Abi had another hard day for Shiree, but then I brought her home and she calmed down--for a little, but started getting fussy again. Took a [not very solid] nap but then ate about 9oz and was calm and almost playful for a good 1.5-2 hrs before getting fussy again- fell back asleep around 8:30 (1/8)
I just want things to calm down so we can see what's working and what's not. What's causing what and how to fix it. Poor thing is just so uncomfortable right now.
I also want you to know that I DID NOT intend this post to be as long as it is. I even re-wrote it to try to shorten it because the last one had a back story all the way from Dec 27 when we started Potiga to today--I was about halfway there and realized it was WAY overwhelming and changed it---still pretty overwhelming, but i'm done typing for now. Maybe I'll go back and proofread later, but for now what you see is what you get.
I'm very happy to see the glimpses of calm Abi during the day - it gives me hope that we are on the down-slope of whatever this was and there's a light at the end of the tunnel. I just feel so bad that she is so hard for Shiree, I really don't want to overwhelm other people with my AbiNormal. She's not overwhelming to me, but she's mine - and she seems to be most calm with me so it truly is much harder on other people and I just feel so badly!
Anywho - I'm at a loss of what to think -
This is AbiNormal!
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