Topanga Seizure Updates
Newest up-dates are at the bottom of the page.
Topanga is still having seizures and we have yet to find a cause or reason. Please keep her (and us) in your prayers. She is 17 months old now. She doesn't really talk, walk or eat. She doesn't respond to her name either. She says MaMaMa, DaDaDa and Dora. She climbs on EVERYTHING but falls. She takes a bite or two every now and then but breastfeeds LOTS. Let me tell you, I am ready to be done being the milk cow :) I am totally for nursing but when the baby gets over a year its time to start cutting back. With her that hasn't been the case. She can't use her tounge properly. She is so low muscle that it affects alot more than most people would think. Don't ask me how she can climb so well. That is one of many things that I do not understand. I will try to keep this updated.........5-2-08
The video below is of Topanga's seizures. I am bringing this video to her doctor. I will warn you that it is scary. I don't cry when it happens but seeing the video makes me cry. I guess I am too concerned and in the moment to even think about crying when it happens. I didn't catch the entire thing, I missed about 45 to 50 seconds of it. I hope this doesn't upset anyone. We are waiting on a Genetics doctor appointment that is sceduled for May 27th @ 10:00am in Rochester NY. They will test her for genetic diseases there. All other doctors (in 2 states) have run every other test they can think of and have found nothing medically wrong to explain it. They just say "Well, she has seizures, we don't know why, but we need to have her on this anti-seizure medication." Which, as you can see doesn't keep them under control. You can hardly see but Savannah is sitting by her baby sisters side blowing on her trying to get her to breath (you can hear the blowing) and then she rubs her face. It is so sweet, she gets so concerned. Bless her heart.
A couple days after I shot this video a friend of mine asked me to watch a show on TV about healing. So we did (thanks Krystal) and Brooke, Savannah & I prayed over Topanga. I am sure Sonya & Krystal were praying at the same time too. But it was pretty cool because ever since then Topanga has been eating! We prayed for a miracle and we sure got one! She never touched more than one or two tastes of food in her life and especially not off a spoon. Well, that night she ate a whole can of baby food (never touched before) from a SPOON and a ton of ramen noodles!!! We feel so blessed! 5-12-08
We have lowered her medication dose down one ML at each dose slowly since May 12th, turns out that anti-seizure medication can cause seizures when coming down on the dose. She has had 2 to 3 seizures every day this week, which is very abnormal for her to have so many in a day for so many days in a row. Also phenobarbital causes your brain to go into hibernation mode, basically shuts it down. So that explains some of her developmental delays. Since we prayed over her and have cut her med dose down; she keeps amazing us more and more every day. She is interacting with Savannah and playing with toys! She gives kisses to mommy & daddy. She is starting to imitate actions you do and things you say. It is soo cool! We are so excited and so are her therapists. This morning her therapist came and it was her second visit. She was totally blown away by how different Topanga was today compared to last time she was here! I told her about us praying over her and she said "That just gave me goose bumps!" She wrote it in her notes but didn't write that we prayed for her. Still a seed planted! AWESOME! 5-20-08
Well we had her appointment on the 27th and they saw her seizure. One for the Doctor and one for the lab techs. They drew her blood - 9 tubes of it!!! They are testing for PTEN & are testing her DNA chromosomes & chromosome micro array. They also need a urine sample to test amino acids, organic acids, plasma, carbohydrates and agylglycine levels. We have been unsuccessful in getting the urine to date - thats something that is nearly impossible on a baby girl! This is just the basics and a START on this genetics testing. I guess PTEN is something they see in kids with big heads and developmental delays. They have never heard of the extreme pain thing so are very interested and researching it, guess the only place that actually does the test itself turns out to be in the Netherlands (if I remember correctly). So the time difference made it so they couldn't check into it at her appointment. They said they do want to test her for it but have to find out the procedure first.
Topanga is now 100% off the anti-seizure medication. She is doing better since going off that stuff. Of course we continue to pray for her daily and God keeps healing her more each day. She can (needs lots of coaxing) take 8 steps and is eating real food daily. Sonya had her walking really good when we were back home. Still nursing though. She is beginning to make good eye contact and is babbling alot now. Still having seizures but seem less intense off the medication. No word from the genetics doctor - I have to put in a call to them soon. She only weighs 18 pounds and still won't respond to her name (most of the time) when you say it. That will come! Totally different baby now than just a few weeks ago. It's AMAZING!!! God is so awesome!!!
I talked to the genetics doctor yesterday. All the tests they ran came back NORMAL!!! Good AND Bad. The doctor still thinks something is not "right" with baby Panga. Since she has very noticable developmental delays and the fact that the DR saw firsthand the seizures and saw the video - the DR feels it is necessary to continue on the quest to an answer for Topanga's issues. They are lining us up with a doctor here in California to do more in-depth testing. PLEASE DO NOT STOP PRAYING! I KNOW God is answering our prayers because Topanga is doing better now than she has ever done before. Thank you all and we love you!
Topanga is WALKING!!!!! She walks most of the time, rarely crawl!!! Still woobly while walking & has seizures a couple days a week but either because she gets mad and doesn't get her way OR when she gets hurt/injured. She has very low muscle tone and is still mainly breastfeeding - even though we make many efforts to get her to eat real food. Thank you for your prayers!!! Topanga is now 20 months old.
I have logged all of Topanga's seizures at this great website!
She is still having seizures. I did not get every single one of her seizures written down, but I got about 70%, so what I did write down over the last year and a half, is now at this website. If you want access to make reports to see her patterns etc. OR if you would like me to e-mail you reports PLEASE let me know!
When she has a seizure Brooke says "Mom, she's doing her thing again!" and grabs her up to make sure she does not hit her head anywhere without even being asked. Savannah starts crying and instantly starts to pray "In the name of Jesus, anger GO AWAY, you are NOT welcome here!" Topanga has 2 great sisters!
Right below are photo's of Topanga having a seizure.
When we pray out loud over her, as long as we catch it right away, most of the times the seizure stops and all she does is pass out and is in a daze. We have not had her into the doctor recently, other than a checkup in Minnesota in September. We just don't know which way to go. 12-12-2008
Topanga is doing better and developing most like any other child her age. She still has seizures from time to time but mostly they start out as a mad fit and turn into more. 5-9-09
Topanga has had 4 "breath holding" seizures and 1 seizure from getting hurt in the last 3 months. She needs some Physical Therapy for her gross motor skills (like jumping, running and climbing) but other than that she is developing GREAT!
We had a development assessment of Topanga this month and will be getting in the results in the next week or two. From there they will provide services (as long as we stay in MN and when we leave we will have a plan in place to do for her or we can take the plan and seek help elsewhere). Looks like there may be some sensory issues as well - but it all looks up!
Forgot to update! The assessment showed she is a little behind in her large motor skills (running, jumping, climbing etc.) They came and gave me ideas for exercises because we where leaving for New York, which are mainly what you would do with a 3 year old anyway - racing, climbing hills, walking on uneven ground etc. They are however BLOWN away by how smart she is when it comes to shapes, colors, talking & answering questions! They think there are a few sensory processing issues, however, they figure they are because she has been catered to since she was a tiny baby because of her condition - basically learned behavior. Who really knows?
It has been a couple months since she has had a seizure! PRAISE GOD! She does stop breathing till she turns blue from time to time - a few times a month, but NOTHING like it has been in the past. Thank you for all your prayers!