TIMELINE OF MEDICAL EVENTS, PROCEDURES AND TREATMENTS
July 7, 2011 Edmond is born healthy without any signs of concern. Eats, sleeps normally, latches really well. Develops well, is smiling and cooing and responding well to us.
August 9th One month doctor appointment. No concerns. Strong and healthy. Shots.
September 6th Two month doctor appointment. No concerns. Strong and healthy, gaining weight well. Shots. Scheduled date for 4 month appointment.
Week of September 18th 2011 At about 11 weeks old noticed eye movements changing and getting stuck on one side.
Sept 23rd, Friday Told Dr. Zaglin about strange eye movement at Eden’s 15 month appointment. Dr. Z looked in Edmond’s eyes and eyes appeared reactive and normal. Explanation was babies are often still gaining control of their own eye reflexes.
Sept 24th Saturday Edmond is out of it, not crying to eat, sleeping a lot, lots of saliva and eye movement sticking in the back of head to the side for minutes at a time. Checked temperature at 10pm and had a fever of 100.5, fever did not go down.
Sept 25th Sunday at 3AM took Edmond to Seton ER. ER said he was fine, with no infection, and sent him home after taking his temperature was 101.7, gave him Tylenol and fever went down.
Sept 28th Wednesday Called the Pediatrician for follow up, because Edmond’s personality had changed, no crying all week, not hungry, lethargic, blinking eyes with saliva excretion. made appt for Friday.
Sept 30th Friday Took Edmond to Pediatrician Zaglin. Edmond had an episode of blinking eyes and excretion of saliva and unresponsiveness during visit. Dr. Z stated that these are seizures. Told doctor he hadn’t cried all week and was very sleepy and having diarrhea. Blinking eyes during seizure, still with stiffening of arms. Dr. Z told me to take him to the ICU at CPMC.
September 30th Friday Edmond was admitted to Pediatric ICU at CPMC.
SEPT 30th MRI was done. Within an hour, Doctor Sahebkar diagnosed Edmond with Smooth Brain or Lissencephaly.
SEPT 30th- OCT 4th
Stayed in ICU and was monitored with EEG. Initial 65 mg was given of Keppra to stop seizures. Left with 100mg dosage for Edmond twice a day of Keppra.
Edmond comes home and is smiling and happy, interactive and strong. No seizures.
October 10th Monday Edmond began having infantile spasms in the morning. Called Dr. Sahebkar, Bring Edmond in for observation on Tuesday.
October 11th, Tuesday – October 16th Sunday
Edmond is kept in the PICU and then transferred to the Pediatric Unit to observe his spasms, EEG Monitor him and to order Achthar infantile spasm injections for him. Sahebkar confirms Edmond is having infantile spasms and orders Achbar to treat spasms. Increases Keppra to 1.5 ML or 150mg twice a day. Puts Edmond on a second EEG monitor to track spasms for a 24 hour period.
October 13th Thursday at 2:15am Edmond has a breakthrough seizure for about 1:30-2:00 minutes long. Was crying and suddenly became still, eyes still looking straight forward, and unresponsive and then began full body convulsion for about 30 seconds, back into stillness, salivating with eyes staring straight forward and came out of it and began to cry.
October 13th Thursday at 4:30am 2nd breakthrough seizure, full body shaking for 2 minutes… continued to have tonic/clonic seizures every couple of hours.
October 14th Friday evening Edmond begins Achthar infantile spasm injections. Edmond continues to have tonic clonic seizures every couple of hours lasting no more than 1 minute convulsion time and 2 minute total from beginning to end of seizure. Spasms continue but lessen significantly over the following week.
October 16th Sunday Edmond is released from the Pediatric Unit. He is on 250mg of Keppra now and injections for infantile spasm.
October 19th Wednesday Edmond stopped having tonic/clonic seizures completely. Still on Keppra 250 mg 2x daily.
October 26th, Wednesday Appt with Sahebkar’s office. Blood pressure was a little high, but this is probably due to the steroid/hormone injections. Gave us a schedule to taper the dose after Friday for 2 weeks.
October 26th, Wednesday Edmond stops having infantile spasms completely. This was the 13th day of the 14 day of treatment of the injections. He will be on a taper dose from 15 day to day 31, commencing on day 31 of taper dose.
October 8th Tuesday, Edmond has 4 month appt with Dr. Z. Get’s immunization shots. After examining Edmond, Dr. Z asks when did Neurologist say he will have another MRI? I explain that he won’t because they view his condition as final, unless he improves so much that they have to do one to see what’s going on. Dr. Z remarks that he has read all of Edmond’s reports and he looks better than what the reports say. Dr. Z comments that Edmond’s responsiveness is already better than his last appointment which was a follow up after we were released from the hospital. Praise God!
December 1st, Thursday, Edmond has been free of seizures since October 19th and free of spasms since October 26th. Today he had his first spasms since October 26th. He had to two lasting for about 1-3 minutes each.
December 1-8th Edmond continued to have 2 spasms a day ranging from 3-6 minutes each.
December 7th, follow up appointment with Dr. Zaglin, found that Edmond had a little ear infection in his left ear that was probably just starting. Prescribed Amoxicillan for 7 days.
December 8th, Dr. Sahebkar increased Keppra dose to 2.7 to see if it will help with the spasms.
December 9th, Friday, Edmond had a spasm lasting 10 minutes. Continued to have about 2 daily.
December 16th Friday, Edmond had five spasms that day.
December 17th, Edmond woke up with a really bad cough and fever that he caught from Eden. Called Onica on Monday December 19th and talked about waiting to start pregnazone treatment after he gets over the cough and if spasms worsen to 5 or 6 daily.
December 17th – 28th Edmond had 2 spasms a day, sometimes 3. He was sleeping more during the day during this time. Increased Keppra to 2.7 ml 2x daily.
December 28th, Edmond had a breakthrough tonic clonic seizure lasting 30 seconds.
January 1st, 2012 Edmond begins taking Prednisolone steroid for spasms 3ml 2x daily along with Ranitadine (Zantec) 2x a day, continues on Keppra. Had pharmacy add grape to Keppra and Ranitadine and strawberry to Prednisolone.
Edmond did very well today. He is currently on a dose of steroids twice daily to treat his spasms with the hope that at the end of this treatment, the spasms will stop altogether. This is his second treatment of this kind. The first was a series of injections that helped him be spasm free for a little over a month. The hope was that they would disappear completely with the first treatment but Edmond began having them again on December 1st. We visited his neurologist yesterday, who recognized that Edmond is having a good response on the steroids. Edmond had no visible spasms today! This is good news and telling that the treatment is working well for him. The doctor is going to continue him on this dose for a full week (3 more days) and then begin a tapering dose for 3 weeks. It was a blessing to have Edmond spasm free today. Here he is after leaving the doctor's office.
Also encouraging that Dr. Sahebkar said we should make sure he has his flu shot and all other immunizations for Edmond.
Edmond had a short spasm this morning, but only one for the day.
Edmond has his first eye exam with Dr. Donna Ornitz. Dr. Ornitz states that Edmond appears to track momentarily. Good signs are that his eyes are responsive to light, his eyes do show nystagmus from right to left (shaking or twitching) but that is good that it’s not up and down, his optic nerves look very healthy. Explained that sometimes when there is brain problems the optic nerve are affected, but his appear to be fine. Also said that Edmond is more farsighted than the average baby. Normal babies are farsighted at a level 1-2, Edmond is at a 4. Will continue to monitor him. Next Appt is for April 5th.
January 11th, Edmond has first weekly Physical Therapy appt with Sunny Days, Alyssa.On a good note, Spasms have significantly decreased. Some days I don’t see any spasms. When he does have a spasm, it doesn’t continue into a series of them, he will have one spasm movement and then stop… or they are very light movements for less than a minute or 30 seconds. He has about 3-4 spasm movements a day, sometimes less.
Take Edmond to his pediatrician because of non-stop coughing. Dr. Z sees the beginnings of an ear infection, prescribes amoxicillin for 10 days.
6 month check up and shots. Dr. Z says Edmond looked at him and smiled at him and is talking and cooing and looks very good. Dr. Z wants Edmond to come back and get a flu shot a week after he finished his steroid treatment.
January 20, 2012
No spasms since January 7th. Edmond is on a taper dose of the prednisolone, Dr. Z got him a refridgerated kind that doesn’t taste as bad as the one that Dr. S prescribed him. Edmond has a few more days of amoxicillin, he is on zantec with the steroids and continues on 2.7 dose of Keppra.
January 20th, Friday Edmond has his first weekly Early Start appt with Charmaine from Sunny Days.
January 24th, Tuesday, we see Edmond having a very “soft” spasm for about 3 minutes.
January 27th, Friday, Edmond has a spasm for about 10 minutes, spasms are short and jerky and not as intense as his previous ones.
January 28-30th, Edmond continues to have spasms sporadically, 2-3 minutes, light movements. About 1-2 times a day. Usually when he first awakes from a nap.
February 18th Edmond takes his final taper dose of prenisolone. He is having 3-4 spasms a day that have been short 2-4 minutes each. He is sleeping more often during the day. His head strength and tone have improved. Although short, spasms have become more intense. At times he will have one spasm movement and then stop.
Edmond had no seizures from 12/28/11 to April 2012. Praise the Lord.
April 17th Upped Keppra dose from 2.7ml to 3.75 ml today because Edmond has been having about 3 facial/tonic seizures, lasting less than a minute, a day for about 2 weeks.
April 24th. Edmond has 5 tonic facial seizures lasting less than a minute today. This is the most in a day he has had. The tonic seizures have not stopped even though we have upped the dose over a week ago. He is still on 3.75ml of Keppra.
April 25th, Edmond has his first assessment with Blind Babies at home with worker Cristina. Cristina comments that Edmond responds in his peripheral vision and responds to light.
April 27-29th, Edmond has 3-4 tonic seizures that were followed by strong spasms for about a minute. Upped dose to 4.0ml
April 30th, Edmond has 3 tonic clonic seizures (with convulsions) and 4 tonic seizures, very little spasms. 7 seizures total. Upped dose to 4.5ml- max dose for his weight.
Edmond Starts Topamax 25 mg capsule twice a day, in Addition to Keppra. His seizures had gone up to 20 but decreased significantly on Topamax within a day’s time.
May 18th, We have noticed that topamax has made him jittery and less thirsty or seemingly losing skills in sucking. So we decrease topamax to one pill a day and the side effects disappeared and seizures did not increase.
June 25th Edmond has a tonic clonic seizure. We return Edmond back to full dose topamax due to breakthrough seizures and because seizures are increasing in number and intensity ...
They are still short in duration though lasting less than 30 seconds but
are followed by strong full body jerking motion and then stiffness for a
few minutes. He had 8 yesterday mostly have been tonic. He had a tonic
clonic today for the first time today.
July 8th We begin Edmond on a small dose of Onfi, and taper him from topamax.
July 27th email to Onica
Update on edmond. Since Edmond stopped topamax and started 1/2 dose of
onfi he has been having more seizures about 15 - 20 in a 24 hr period
and they continue to be short in duration, less than 20 seconds each
although he has jerks off and on for another minute. He will begin the
full dose of onfi on Monday. Hopefully the full dose will lessen the
seizures and it's just the transition that is bringing on more seizures?
If the seizures get worse we are willing to go back on topamax which was
6-10 small seizures a day, but he was able to sleep through the night
but has been having a hard time with the ONFI in sleeping thru the night
because of the increased seizure activity.
July 30th Edmond begins a full dose of ONFI. It took about a week for it to start really helping him.
August 6th Edmond has no seizures in the evening.
August 6-9th, Edmond has decreased seizures and increased alertness.
August 9th both Eden and Edmond come down with fevers and a bad cold they caught from their dad. I take Edmond to the pediatrician the next day on Friday and there is no infection, lungs sound great, just have to do fever control.
August 10th, Edmond sees Dr. Ananda and is cleared and does not have any infection but has a cold.
August 11th, Edmond has no seizures.
August 12th, Edmond has no seizures.
August 11- 22nd, Edmond has only had 4 observed seizures that were short in intensity and duration lasting less than 10-15 seconds. Once Edmond recovered from his cold virus he became very alert and responsive. Edmond is having trouble with drinking from his bottle again in the same manner that he had trouble with when first starting topamax. He is eating well still but is just biting his bottle until it leaks into his mouth instead of sucking the milk or water down like he used to. He chokes more often while drinking and it takes longer to get him to finish a bottle, most times he only drinks 2-3 ounces at a time, while he used to drink 5 ounces 3 times a day.