Negative!

I called the neurologist's office yesterday and got a response in record time for them (under one hour). Natalie's EEG was negative! Whew! Even though I had feeling that it would be, it was still a relief to hear the nurse say those words. She will just have her regular annual neurology follow up with Dr Franz in June and hopefully no further seizures in the meantime (or ever again)!
More updates to come soon about the cool stuff Natalie has been learning lately and about an advocacy training series that I've been lucky to be a part of recently.

Strep & Seizure Update

Since I last posted, Natalie has been diagnosed with Strep two more times, most recently today. Yuck! The first time she had it in March it seems that the Bicillin shot she was given did not totally kick the bug so she ended up having to get three days of Rocephin shots in her legs (one in each leg, 3 days in a row). Poor Natalie, she was not a happy girl. After the Strep seemed to be a thing of the past, she developed a cold which lasted about a week and a half. Just as she seemed to be getting over the cold last week, her coughing started up again this weekend and she was having trouble sleeping because she was coughing so much. Last night she had a fever and we both slept poorly because she was up constantly during the night crying and wiggling around like she was in pain. She finally slept fairly soundly from about 4am to 9am. No school or work today and we visited the Pediatrician who did a rapid strep test which turned out positive. He said the only two shot options are Bicillin or Rocephin again so we went ahead with the Bicillin (it's only one shot). Hope it works this time. I told Natalie that I don't want to go back there until her 5 year well child visit in September. Hopefully, she will stay healthy until then!

A few weeks ago, we went to her Neurology appointment and saw the Nurse Practicioner who was very nice. She said that from the description provided, it did sound like Natalie had a seizure at school last month. However, before they diagnose a seizure disorder or put kids on ongoing seizure meds, there must be two "unprovoked" seizures, meaning two that are not related to illness/fever. Since hers occurred the day before the first Strep diagnosis it would be considered a "provoked" one. So, nothing changes now other than she was given a prescription for Diastat which is a drug to be administered should she ever have a seizure that lasts more than 5 minutes. She will have one with her all the time and a dose will also be kept at school, like with her Epipen. However, they do want her to have a sleep-deprived EEG and this will be done on Friday. For this test, she is to go to bed at her normal bedtime and will have to then wake up at 2 am and stay up until the test is done at 7am! Sound like fun? If it does, feel free to come over and help me keep her awake from 2am until 7am on Friday morning! I'll blog about how it goes afterward. Hopefully they will not find anything abnormal.

We are ready for Spring and no more sickness!

Strep and Seizures?

Natalie LOVES the GIANT cookies Howard buys for the kids every week at DLM.

This week has been a strange one. On Tuesday I got a call from Natalie's preschool teacher describing 2 "events" that they had just witnessed with Natalie. As her teacher and the school OT described it, Natalie had what looked like a tremor start in her foot and move through her entire body while at the same time moving her mouth into a "grimace". She did this twice within a few minutes. They were concerned about possible seizure activity. No one who has spent time with her since has witnessed any further events. However, I thought it would be best to contact the neurologist and she now has an appointment for March 22. Ugh! I really hope that she's not having seizures. I hate to think that she may have one more condition to deal with. However, the Neuro previously told us that children with CP are at increased risk for seizures. I'm trying not to think or worry about it much because it may be nothing.

On Wednesday, the school called again because Natalie was acting really tired and when they took her temp it was around 100. She has had a fever since then but it's always under 101 and usually more around 100. She has been acting totally fine other than being a little more tired than usual. Since today was her fourth day with the fever I decided to take her to the Ped to see if something other than a virus was going on. Turns out, after over 2 hours in the doctor's office, Natalie was diagnosed with strep throat. After discussing Natalie's issue with taking medication by mouth (normally gags so much she makes herself throw up), he asked if I wanted her to have an antibiotic shot instead. Poor Natalie! She was SO mad about the shot but I was so relieved that I would not have to figure out how to trick her into taking antibiotics for the next 10 days!

By the way, the big girl weighed in at 38.6 lbs (with her AFOs and shoes on). No wonder I have been having so much back pain lately.

For now I just wanted to document what has been going on. I have a few other posts planned in my head that I hope to get to soon.

I think next week will be a much better week for us!

Neurology Update

On January 21 Natalie went to see her favorite Neurologist, Dr Franz.  Really, Natalie probably would not call any doctor a "favorite" but if I had to pick one it would probably be him!  I like that he always seems to be truthful yet definitely puts the focus on the positives!  He also takes the time to really listen to parents and seems to value and consider their input.  On this journey, I have learned that this is truly a rarity among pediatric specialists!  Del took Natalie to this appointment so I did not get this information firsthand but it seems that Dr Franz gave Natalie a GREAT report at this visit.  
To summarize:
-Natalie looks to him to be getting close to walking.  He took notice of her much improved balance since her previous visit. 
-She had an EEG after her previous visit and this was negative for seizures.  She still is at increased risk for seizures due to her previous brain bleed and resulting damage, but the older she gets without having any seizures the better the odds that she won't develop a seizure disorder. 
-He believes that she is definitely trying to communicate with us in words but is just not able to get them out correctly and consistently.  Natalie apparently became very talkative during her appointment and told him one of her long stories!  Dr Franz thinks that the communication device that Natalie will soon be evaluated for will be a great thing to improve her ability to communicate.  It is clear that her receptive language skills are much ahead of her expressive language skills.  (Not sure he said that last part exactly but this is pretty clear if you spend any time with her).  I will do a separate post about communication soon. 
-He supports getting another opinion on Natalie's vision and affirmed my gut feeling that vision therapy is probably not worth the time and money at this time.  Natalie has had a prescription for glasses since this fall from her Ophthalmologist but no glasses yet.  A second opinion from a developmental Optometrist was to hold off on the glasses for now and do vision therapy (which they do in their office for a rather hefty fee and not covered by insurance).  So in order to get a 3rd tie breaker opinion, we are going to be seeing an Ophthalmologist in Cincinnati. 

I feel like I am forgetting something so if I am, and I remember it, I will edit later!