Help me out here...

Something is definitely up with Abi - she's been miserable the last couple of weeks, but I'm at a loss where to even start looking with her. Not 'miserable' I guess as much as just super uncomfortable. This 72 hour EEG we have her on right now may help point to something - but it also may not. (The EEG is more of a routine thing to take a look at what is going on instead of being a result of something worrisome.) I really think whatever is up with her is unrelated to the seizure disorder..but, like I said, i'm completely at a loss. Here's what's been going on:

- increased puking (again)
- slight lethargy
- fluctuating seizures (from 2 in a week to 10 in a day back down to 1 a day then none again and back up to 2..etc)
- up and down fevers.
- color in her urine
- increased breath-holding, or blue, spells
- prolonged thrush
- constipation

Increased Puking
A while back, I don't remember exactly when, but I think it had to have been after I finished student teaching - so sometime at the end March/Beginning of April, I started putting coconut oil into Abigail's bottles to help increase calorie intake. I gave her the first bottle with coconut oil no problem, but the next bottle the next morning she puked it all back up. I didn't connect the coconut oil with it right off the bat, but after about 3 more days and quite a few more puking (like projectile, through the nose) puking incidents I decided it had to be the coconut oil that was causing the issue. So I stopped adding it into her bottles. It seemed to work for a while where I didn't see any major puking...but then I started noticing it again. I don't remember the first time exactly that it started again but I do remember it was April 8th/9th when I connected the puking to the greek yogurt I had been putting in her bottles. I had been giving her greek yogurt for quite some time by this point with no seeming issues. But one time I rinsed out an old bottle that had had yogurt in it that when I poured out it looked like her puke..so I figured that had to be it. I cut out all yogurt and milk from her bottles and until yesterday that seemed to fix the problem. Yesterday morning she did the puke in the middle of eating thing (where she chokes while eating and pukes up everything she just ate) - Then yesterday evening she spit up more while laying down, then just barely she had a very small seizure then puked everything up again. I haven't given her any dairy or coconut oil or anything of the sort but her puking has been acting back up again. I have NO IDEA what the heck could be going on. I remember a while back she was puking a lot and after asking about it on Utah Kids Facebook page they mentioned constipation could be a reason for puking, and she has been constipated (but that is nothing new). So now I'm at a loss as to what could be causing this. She's been on pediasure for a few weeks now before this so I don't think that is the cause - but let's discuss the other symptoms and see what else may point to something...

Up and Down Fevers
Since I picked up mom in Salt Lake on Monday April 1st Abi's seizures have been all over the place.  We got back down to Orderville on Wed April 3rd and Abi was seemingly normal for the next few days with minimal seizures that we can remember. It started Tuesday April 8th when Abi, Max, Mamma Mia and I went out to Cedar and St George for some errands/doctor appts. Abi was miserable all day long and we couldn't for the life of us figure out why..I thought she was just being dramatic and fussy about being in her  It wasn't until the next morning when I realized she had a fever that she was not feeling well. Her fever would continue on and off for the next 3-4 days. The first day it was there most of the day then I noticed it would be present in the morning then, after a dose of tylenol, would subside all day then come back at night before bed. It continued like that for at least 4 days. The fevers seemed to have gone away until yesterday she started feeling warm again - I, today, gave her her first dose of Tylenol since Saturday the 12th. Today she's been kinda fussy - kinda lazy/limp/slightly lethargic. I didn't notice a strong fever or even an extra warm temperature..but I did give her medicine for it this morning.

Fluctuating Seizures.
We got back down to Orderville on April 3rd - and at this point we had been on an average of 3-5 seizures per day. I remember seeing 1 seizure on Tuesday April 8th (the day she was being really fussy in the car) in the late evening right before we got home (around 9ish) - From that point on for the next 4 ish days we saw maybe 2 seizures total. Then Sunday there was no fever and no seizures, or at least not many..but Monday the 14th she had about 10 seizures that day! Out of nowhere. She wasn't fussy they just came, over and over again. Then Tuesday the 15th she went back down to like 2 (or some really small number). She's now (Friday) gone back down to having very few seizures in the day - maybe 1 or 2 -- today it was 2 very small ones. But she has had multiple breath holding spells - which I don't know if they are seizures or not. I'm leaning towards not, but they can induce a seizure. Which happened once Wednesday evening around 5 and then again yesterday. She has also been having more lip smacking and nystagmus episodes that I'm pretty sure are a type of seizure activity - but those are so mild and random. There is no rhyme or reason to her seizures. I do know there was that Full moon eclipse on Monday and I have heard accounts of children's seizures increasing during lunar events - I'm not too sold on that idea - but it sure is a coincidence that her seizures increased immensely the same day as the eclipse and then immediately went back down. Again there was a connection between how fussy she was and wasn't and when the seizures increased. (more fussy = less seizures, and less fussy=more seizures - so Monday when she was having a lot of seizures, she seemed pretty okay all day but has been relatively miserable the rest of the time.

Colored Urine 
Back at the End of March I noticed something odd (March 23rdish) - When I went to change Abigail's diaper, I noticed there was a discoloration on the outside of her diaper - Like when looking at her diaper from the outside it looked like there would be a lot of pink on the inside..but when I opened the diaper there was no discoloration at all. So I brushed it off and just thought it was weird. The next morning I saw the same thing..But the next morning I saw the discoloration from the outside, but this time there was actually a red spot in her diaper. Luckily I had a prenatal appt for Max that day so I brought in the diaper so I could show the doc and see what he thought it might be. The doc gave me some urine collector bags to put on Abi to get a sample. At first I thought it was blood in the Urine, but now it's more of an orangey color that I'm not sure it's blood anymore. Since I had only seen the discoloration in the morning I decided to wait to put the collector bag on at night. At 5:30 am she woke up screaming so I took what I collected and put it in the fridge to bring into the clinic the next day. When I took the sample to the clinic - At 11:30am - the urine sample was cloudy as all else. The doc took one look at it and immediately called in some antibiotics for Abigail. They wanted to do a urine culture but the sample has to be no older than 30 minutes in order to be a good sample, so I was sent home with another urine collector bag and told to bring back her next sample as soon as she lets it out..so we did just that. They couldn't get the culture to grow anymore bacteria which all the doctors I've talked to said that is a good thing and it means there is no UTI. So since she wasn't acting like she was in pain, there were no signs that pointed to an infection, and there was no rhyme or reason to when the color would show up - it wasn't every morning that I would see it, but it was only mornings - I decided to finish the course of antibiotics and see where that left us. Well, the antibiotics gave the poor babe thrush in her mouth (that got diagnosed officially on the 29th of March) and has stuck around since! AND she is still having discolored urine! It's no longer only in the morning that I see the coloration, but there is still no rhyme or reason to when it shows up - or even why. If you read my last blog you would know that I thought maybe the concentration of her food was maybe a culprit and since changing to pediasure we haven't seen anything-but of course the very next morning after that post I saw a lot of discoloration - probably the most that I had seen in any of her diapers so that rules that theory out. We have done blood work as well and nothing in the blood work pointed to kidney issues..so there is nothing that we have found that could or would cause this discoloration. There are still a few more tests out there that the nephrologist suggests to run - so I will get those done and see where that leads us.

Increased Breath-Holding or Blue spells
We've noticed this in past, where her seizures seem to slow down then these breath holding fits get more frequent..That's why i'm not sure if they are seizures themselves or just can induce seizures. She will be calm then get really upset all of a sudden and then go into a blue fit. Or she will be fussing uncomfortable like then get more worked up to a breath spell. She's been arching really badly again which leads me to believe there is pain somewhere. I used the think the arching was only related to pain in her belly, but I think arching is just a pain response whether it's a fever or bellyache, or whatever.

Prolonged Thrush
Just how it sounds. She has had thrush in her Mouth since the end of March. I've had her on liquid nystatin 4x/day since March 29th. I even tried to put a drop of OnGuard essential oil in her nystatin, but I think it burnt more than it helped. So I switched back to the regular stuff - she takes it a lot better, but the thrush is still hanging around. I've tried to be diligent also about using a new nipple with each bottle and disinfecting the nipples before using them again. My sister said to boil them - haven't really done that yet - but maybe I will start. I was just running them through the dishwasher to disinfect before using again. But I would switch the nipples out and use new ones and she hasn't had a pacifier in a long time to try to avoid that. Just recently I gave her one just to calm her down but it made it's way into the sink after she was done with it and a new one was given to her that night when she needed another calming down. But the thrush has been around.

Constipation
Like I said, this is nothing new - at all - as long as I can remember she's been constipated. I do the Vaseline trick and use suppositories frequently. It seems to help some discomfort for a while but recently (the last 2 days) I haven't been able to get a lot out with the tricks...but enough to relieve some pressure. After which she seems a lot more comfortable than before I do it, but it doesn't last forever..something makes her uncomfortable again..but I don't know what.

So overall she is just so sad right now because something is bugging her - but what in the world?? Like I said, whatever it is I think it is unrelated to the seizure disorder. I think that is it's own thing. I also don't know how many of her symptoms are related. I'm sure there are some that related but where they are so off and on and there seems to be little rhyme or reason to any or all of her symptoms it's so hard to tell what's related and what's not. I do think the constipation is related to the neurological disorder, as digestive system issues are connected to neuro conditions. But I just don't know what else to take away from this all. Anyone have any experience with anything like this? I've spoken to all of her doctors about it but they can't seem to come up with anything either. So I wouldn't mind suggestions to take to the doctors. There are a few more things, like I mentioned, that one doctor has in mind to do so we will go that route..but I talked to the epiletologist and he suggested I talk to her pediatrician - I talked to the pediatrician and he suggested I talk to the neurologist. So we are at a standstill of what to do. It may be the medicine...there is that 1-3% chance of that chromaturia thing I mentioned last blog.

I don't think whatever is going on is hospital stay worthy, but I would like to know the root of the problem so we can fix it! I can't stand to see her so uncomfortable. I hate to see regression. Poor little lady. What a trooper she is!

With all of the puking and seeming tummy aches I am really opening up to the idea of the g-tube...not entirely sold but can't help but to think if it would solve some of these issues. I've never been fully opposed to it as I can see it's benefits for some cases, but I just don't feel it's right yet. I don't want Abi to think she can get full without eating. I want her to still get that oral stimulation as it helps with potentially talking later...I don't think we are at g-tube point yet - but I do think it may be necessary in the future if things continue this way. I'm not worried about her weight yet, but again, maybe in the future. I just can't see how if we put too much food in her belly or food that doesn't sit well with her stomach that it still wouldn't puke out even though she didn't eat it orally..I just don't know. I will be doing a lot of research on g-tubes and their pros/cons the next little bit. I would just hate to jump into this with it really not being necessary and causing a regression that wouldn't have necessarily happened.. I'm very torn about this.


This is AbiNormal.