Archive for June 2010


6/26/10 – Another Seizure

Two days ago, Ren had another seizure. It was around 10:00 in the morning, and she was still in her bed (she is a late riser!), and T had her on the tv – we have a camera set up in her room – though the camera was only showing half of her bed at the time – and he did glance at it at one time and saw her arm moving around, at about 10:15, but he figured she was dancing, something she often does. However, around 10:30 he decided she needed to get up, so he went in there, and discovered her in the midst of a grand mal seizure. I was across the street at my parents’ house, tutoring a boy, and so I wasn’t there to help as he frantically searched around for her Diastat, a valium-type medicine to give if she has a seizure longer than 5 minutes. He called me, and by the time I got over there, around 10:40, he did find it. He handed it to me and I had to read the directions – thankfully the directions were right there with it – trying to stay calm, and administered it to her.

T called 911 still because we think that is what the neurologist instructed us to do if she has a lengthy seizure. The first responders came, but because we had administered the Diastat, they did not do a whole lot except take down information, which they gave to the paramedics when they came. Even though the seizure was slowing down, we thought we should still go to the hospital to get her checked out. I went with in the ambulance, and by the time we left, her seizure was almost gone. However, she had been having it for at LEAST 30 minutes by then. We again had no idea when she actually started, since she was in bed. All three of her seizures have occurred while in bed – Two of them occurred in the morning, and one occurred during her nap time. So, we have not been able to witness the starts of any of her seizures. Supposedly seizures can commonly occur either right as a person is falling asleep, or right as s/he is waking up.

We were only at the hospital about an hour. After getting instructions to increase her seizure medication again, we were discharged. Ren was very weak, tired, and not herself. I know having that big of a seizure is very hard on her body, and the Diastat/valium also mixed up her body quite a bit. That afternoon she slept almost 3 hours. She had a slight fever, and she was unable to keep anything down, not even juice, and did a lot of vomiting. We had her sleep in our room in a pack-n-play, so we could keep an eye on her. The night went well, and she was able to eat and drink some the next day, though she was still not quite herself – very quiet and mellow, and still a little weak and tired.

Finally, today, she is back to her happy self. We are happy to have her back.

Several people have asked me if anyone has given an explanation for her seizures. Well, we’ve had a few theories. The emergency doctor said, she has a seizure disorder, people with seizure disorders are going to have seizures. Another doctor said, she has an infection, and infections can decrease her seizure threshold. (She was diagnosed with a UTI earlier that week on Monday – When we had the urology visit, they took a urine sample and found some bacteria in it, but we had just been informed of it Wednesday evening and had not gotten the antibiotics for it yet. We don’t know how long she’s had the UTI because she was not symptomatic.) I think her polymicrogyria (see previous posts for description) is the main culprit, since I have read that it can be a cause of seizures.

I am very worried about the length of the seizures she has had. A seizure longer than 5 minutes is considered an emergency, so hers of 30 minutes and longer is pretty dangerous. She has not been officially diagnosed as having this, but I have read about status epilepticus (please click on that link and read a brief definition) and I think it sounds pretty much like what she has experienced, and that scares me.

Please pray yet again that she will no longer have these long seizures. Pray that as she gets older, they will not get worse, but instead decrease or be nonexistent. Please pray again that she will not have any damaging, long-term effects from these seizures. And, of course, continued prayers for healing of her legs, improvement in speech, and overall good health are always needed.

Thanks so much….

6/21/10 Bladder Test Results

Today Ren had her bladder urodynamics study/test. The results were….neither good nor bad.

We did not receive the most ideal news of not needing to catheterize her – which, I pretty much expected yet still hoped for. Overall, her bladder pressure actually looked pretty good. So, that is good. However, her bladder is having some spasms, which causes some leakage, and she does not fully empty her bladder all at once, leaving some residual urine. All of this isn’t necessarily horribly bad right now, but these issues would make it more difficult in the future for potty training, and could potentially lead to some problems in the future for her kidneys. Because of these reasons, the doctor is recommending cathing her 4 times/day, plus taking some medication to help with the bladder spasms/leakage. All of this is precautionary measures, but are pretty typical for someone with spina bifida, including her irregularly shaped bladder that her local doctor seemed worried about. Most – if not all – individuals with SB have some sort of bladder problem/s, because the nerves to the bladder are on the lowest part of the spine and SB is a defect on the spine. So, even those with a very low defect will have their bladder affected somehow.

The doctor we saw today will forward the results and his notes/recommendations to our local doctor, and I am assuming we will meet with him soon to discuss the plan for Ren. Though a little sad about the news, I knew it was practically inevitable, and I also know cathing will just become part of the routine, and when she is older, she will learn to do it herself with relative ease. It will all be fine. I am just glad there was no real “bad” or alarming news. The news we got was what we were prepared for, and it is “normal” for someone with her diagnosis. Not good….but not bad.

6/17/10 – Leg Update, Speech, Test

So Renny is now out of her cast (yes!) and back into her full leg brace, which she will be in for 5 weeks total, so beginning/middle of July. Though not as fun as being without the brace, it is SOOOO much better than being in that big cast. She can actually SIT now, on the floor, in her bed, on the couch, in her carseat. I didn’t realize what a blessing it is to be able to sit! She gave us a scare last week, when I went to check on her before I went to bed (I do that every night), and she was OUT of most of her brace. I had pinned the part by her fracture down, knowing she has gotten out of her brace in the past, but I obviously was not thinking about WHO my daughter is. She has been called Houdini for a reason. She gets out of braces, carseat straps, MRI straps,….I should have known. So, I began freaking out about what she may have done to her not-totally-healed fracture, and emailed many friends asking them to pray for her leg to be okay. I couldn’t sleep that night, prayed all night, because I did not want her to have damaged her leg. The next morning, her leg looked okay, and it has looked okay since – no swelling, hotness, or fever – all usual signs of a fracture, since she usually can not feel the pain to let us know it hurts. SO, thanking the Lord for that! (I have since pinned each part of her brace (the velcro parts) and she hasn’t gotten it off!)

So, now Renny is being as active as she can, as usual. I don’t think the doctors realize exactly HOW active she is. She does NOT like to sit still. She is always on the go – still – walking and/or swinging back and forth on her parallel bars, scooting around, wanting to be everywhere we are and wanting to do everything her brothers do. Today I was playing catch with the boys (teaching them how to catch with a baseball glove), and she yelled and yelled to join in, and in the end I had to give her a glove too and I played “catch” with her for awhile as well.

She is doing a little better with her speech. Relatively speaking. I have been working some with her on making different sounds. She can say most sounds in our language, but cannot put many of them together. For instance, she can say the sound /u/ and/p/, but she cannot put them together to make the word “up.” However, she can say words that are a consonant followed by a vowel, like “ma”, “da” (which she is now saying for T, instead of calling him “ma” like she always used to!), “baa”, “moo”, and, her newest one, “boo”, which she will yell when playing peek-a-boo. She is also doing a lot more imitating of signs, so if I teach her a sign for something, she will copy it right away, something she didn’t seem too interested in before.

In a past post, I mentioned that Renny has a diagnosis of polymicrogyria, which means “many tiny folds” in the brain, and had been a theorized reason for her delay in speech. Since then, I have discovered there are several different types of polymicrogyria, but I am unsure of Ren’s type. It is a fairly recently discovered disorder, and so I could not find a lot of information. But, there is a book called “Schuyler’s Monster,” by Robert Rummel-Hudson, written about his daughter, who has a type of polymicrogyria called bilateral perisylvian polymicrogyria. I have not read the book yet, though I would like to – though I’d like to find out what type Ren has first – but the author has several videos on YouTube, and I wanted to show one in particular, where his daughter is reading, to show how much the condition has affected her speech.

As with spina bifida, not all children with polymicrogyria are affected the same way – Each child has a unique situation – So this does not mean Renny will have the exact same difficulties with language as Schuyler, BUT it does show an example of how her polymicrogyria could affect her. I am hoping with early intervention and lots of working with her, and lots of praying (hint, hint!) that she will be able to work through it all and get her brain to figure out how to put those sounds together into words.

One last topic I wanted to mention is that Ren has a urodynamics study/test next Monday in a bigger hospital. This will probably determine if we will need to start catheterizing her. It will take a closer look at her bladder, which appeared to be having too much pressure in the previous test. I have been giving her pumpkin seed oil since then, because I read it can help with the bladder system, including bladder pressure. I know it is/was a long shot, but I knew it couldn’t hurt. Please pray that her bladder looks better, that she will not need catheterizing. As I said in the past, I know it will not be the end of the world if that is the result, but, still….

I soon hope to look into getting a hand cycle (tricycle she can pedal with her hands), and she should be getting her wheelchair soon, both of which will make it easier for her to be more independently mobile. I will update on those as they come…

Again, please pray for her leg to heal completely and correctly, and for our stretching of her leg to help loosen her very stiff leg, so that she can be ready to be totally out of her brace in a month. Also pray for the speech area of her brain, that her brain will be able to figure everything out, despite the challenges. And please pray for good results of her test on Monday.

Thank you for all of those who have been and continue to be such great supporters and prayer warriors for Ren and our family!!
Ren at the Zoo