Friday September 17th at 11:20pm Paige had some type of seizure. I was worried and took her to the hospital at Trenton Memorial. The Doctor on call said based on what I was describing it sounded like Febrile Seizures/Convulsions. The Dr. claimed these were normal and may continue if she is sick and sent us home.
By the time I got home and ready for bed she had another episode. I couldn't sleep so i searched the Internet for Febrile Seizures or Convulsions. These seizures are normally accompanied by a fever. When we went to the hospital Paige did not have a fever. We explained to the Dr. she was hot as hell on the outside so we thought she did. We had it explained to us that although the baby's skin may feel hot that the core temperature may be different and not feverish at all.
Saturday September 18th, My friend took me out to get some stuff off of layaway in Belleville. Paige fussed all day until I got home. I asked Aaron (my husband) if he would mind putting her in her swing so I could grab a shower and something to eat. Paige started fussing and I sat and talked with her. I thought she was going to fall asleep, it was the beginning of another episode. SIGH. I grabbed the digital camera and recorded what it was she was doing. I took her out of the swing and put her on the bed to finish the episode. My husband saw this for the first time and was upset and wanted to go back to the hospital because she actually rolled her eyes in the back of her head. So........back to Trenton Memorial Hospital. AGAIN. The same Dr. Dr. Laird was on call. We showed him the video and he claimed that these were in deed Febrile Seizures and said she could still have them if she was sick and will once again probably have a few more. These seizures are harmless and don't hurt the baby. We were reassured this.
By the time we got home she had another one. That night was a long night as she had about five or six. So thinking even though I am staying awake Daddy can take her during the day and I can get some sleep. We thought it would an ok day she sat in her swing and swung, even in her vibrating chair.
Sunday September 19th, A friend was coming over to help give me a break so I could sleep as I had not slept since Thursday with the baby having the cold and everything. I went out briefly to get a few groceries she was fine cuddling with her Aunt Kathy. We pulled ini the drive way and she had one. SIGH. I feel so helpless when she has them because she looks so empty before during and after. :( I called the Telehealth line and explained what had been going on. The nurse was concerned because the last bunch of episodes were not accompanied by a fever. She asked me to take Paige back to the Hospital. I said I couldn't take her back to TMH, so we went to Belleille General Hospital where there is a Pediatric Unit there and they could call in a Pediatrician.
We waited in Emerg to get called in. Finally they called us in, the nurse took us to the Clinic Room. By the time the nurse came in and asked what was going on Paige was already into another episode. The nurse said that Paige could not be monitored in the Clinic Room and we had to go to an emergency room where she could be watched.
A Doctor came in and said they wanted to do blood work and check her urine. They both came back normal. Shortly after that another Doctor came in. Dr. Kyle McKenzie Pediatrician at Quinte Pediatrics. I explained what was happening and the Doctor checked her and asked to see the video I took. Dr. McKenzie said that there in no way Febrile Seizures like the Dr. said in Trenton Memorial. That these were something called Infantile Spasms. Dr. Kyle said he would step away for a bit and then come back. He wanted to research the age range that Infantile Spasms start to occur. After waiting a short time the Dr. came back and said she fit the profile for Infantile Seizures.
The said that this is something that needs to be closer looked at before the FINAL prognosis. Dr. Kyle was going to book us an Urgent EEG and neurologist appointment. With that said he did say she would have some more. But to keep track of them and to bring her in if anything changed on a serious note.
Monday September 20th, Dr. McKenzie's office called with an appointment to be in Kingston to see the neurologist at 12pm on Tuesday the 21st.Shortly after we received another call asking us to be in Kingston earlier to she could have an EEG done. Wow talk about quick. This whole time this is going on with my Boo I remember back to my little guy. Joshua.
Monday was a bad day she have quite a few episodes. From 6:15pm til 6:30am she had about seven episodes. So it was a long day and still no sleep. I was able to get a cat nap in here and there but that was it.
So we prepared to pack and packed a few things in case we had to stay. But not everything. You don't realize what you forget until you get there and are told you will be there for a while.
Sooooooo Tuesday September 21st comes and Paige was up from 8:00pm til 6:30am. Can you say mommy is tired. :S We got ready and headed out to Kingston with Paige (Thank you Kathy and Tom). We arrived at Kingston General Hospital for her EEG. She was a very good girl. From Kingston General we had to go to Hotel Dieu to see the neurologist. Dr. McDonald was very nice and understanding. She looked at Paige's EEG and the video and said the following, "If you didn't bring the video or have the EEG done, would have sent you home as she looks pretty happy and healthy and growing like she should be." It was the EEG and the Video that gave us the confirmation that Paige was having Infantile Spasms also known as West Syndrome and can be viewed here for more information. http://en.wikipedia.org/wiki/West_syndrome
West syndrome or West's Syndrome is an uncommon to rare epileptic disorder in infants. It is named after the English physician, William James West (1793-1848), who first described it in an article published in The Lancet in 1841. The original case actually described his own son, James Edwin West (1820 - 1840) [1]. Other names for it are "Generalized Flexion Epilepsy", "Infantile Epileptic Encephalopathy", "Infantile Myoclonic Encephalopathy", "jackknife convulsions", "Massive Myoclonia" and "Salaam spasms". The term "infantile spasms" can be used to describe the specific seizure manifestation in the syndrome, but is also used as a synonym for the syndrome itself. West syndrome is the triad of infantile spasms, a pathognomonic EEG pattern (called hypsarrhythmia), and mental retardation - although the international definition requires only two out of these three elements.
The syndrome is age-related, generally occurring between the third and the twelfth month, generally manifesting around the fifth month. There are various causes ("polyetiology"). The syndrome is often caused by an organic brain dysfunction whose origins may be prenatal, perinatal (caused during birth) or postnatal.
On Tuesday Paige was admitted to Kingston General Hospitals new pediatric ward. The Dr.s came in and examined her and explained what the plan was.
They believe that she could possibly have Tuberous sclerosis.
Tuberous sclerosis or tuberous sclerosis complex (TSC) is a rare, multi-system genetic disease that causes benign tumours to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. A combination of symptoms may include seizures, developmental delay, behavioral problems, skin abnormalities, lung and kidney disease. TSC is caused by mutations on either of two genes, TSC1 and TSC2, which encode for the proteins hamartin and tuberin respectively. These proteins act as tumour growth suppressors, agents that regulate cell proliferation and differentiation.[1]
The name, composed of the Latin tuber (swelling) and the Greek skleros (hard), refers to the pathological finding of thick, firm and pale gyri, called "tubers," in the brains of patients postmortem. These tubers were first described by Désiré-Magloire Bourneville in 1880; the cortical manifestations may sometimes still be known by the eponym Bourneville's disease.
You can read more about it here on Wikipedia. http://en.wikipedia.org/wiki/Tuberous_sclerosis
Paige went under a number of blood works, ultrasounds to confirm or deny this TSC before the DNA test could come back in December.
Wednesday September 22nd Paige had a few more episodes and the nurses watched her. By this point she was sleeping a lot. A side effect of the medication. :D Sleep I almost forgot what it sounded like.
Thursday September 23rd - this would have been Joshua's 15th birthday. My little man. Anyways At 2am Paige had another seizure. We went and had blood work done in case the genetics test came back saying she had TSC. We figured we would have the blood work done and banked.
Friday September 24th, we were allowed to go home as long as we agreed to come to her appointments and meet the neurologist. She wanted to see us once a week for the next four or five weeks. We were released. We were given a prescription for Vigabatrain and off we went. That day was one of the happiest days of my life. I waited what seemed sooooooo long to see my oldest and to go home and sleep in my bed. I remember my gf Kathy bringing my oldest in to pick us up. You know in the movies when someone in love runs to one another in slow motion from one end of the beach to the next. :D Well my daughter ran to me and it felt like that in slow motion. I picked her up and hugged her and told her I missed her and I loved her so very much. She said mom mom I love you and missed you too and hugged me back. After that brief like two minutes she says mom mom where is Paigey :D She needed to see for herself her sister was ok.
The nurses thought Madison was a doll and took her to the room with the stuffy's they give the kid when they are in the hospital. Madison chose a Unicorn. That made her happy to see mommy, her little sister and to get a stuffy :D
We headed home to Trenton got to Shoppers Drug Mart and dropped off the prescription only to find out that they don't stock the Vigabatrin as it is not a commonly used medication. WTF you have to be kidding me. So I called the Paediatrician on call in Kingston General Hospital. She was nice and phoned Belleville General Hospital Paediatric Unit to see if they had any. Guess what NONE. Hello guess they don't diagnose children enough with Infantile Spasms. Well BGH called eight different pharmacies to see if they had the medication. Turns out that Kingston General got the prescription ready and dropped it off to the 24 hour Shoppers in Kingston. We had to drive all the way back to get her prescription. Now the Shoppers here will order it a box at a time for my daughter and keep it on hand for when I need to refill the script. Talk about BS. Oh and my drug card doesn't cover the medication either so it costs me $80 bucks a month for now and that is before her increases. She will need the increases when her weight goes up.
