I thought this page of my blog could do with a little update. Matthew is now 9 years old, he’s at school and doing pretty well. Matthew has a unique little character, a little shy at times, but otherwise an awesome little man. He’s not currently into any sports, but really enjoys drawing, lego, and a 3D printer he’s been using to print his own toys.
It is a real joy to be able to write that. Both Emma and I still recall the dark times when he was in hospital, the fear, the worry, and the desperate bid to get up to speed with all these new medical terms. I’m not sure if the treatment plans for Infantile Spasms have moved on since he was in hospital. But I do know that as a parent I spent hours in small hours awake, sitting beside Mattie searching the internet for help. I’ve tried to collect all posts, notes and photos we shared during this period here. I hope they help any other parents who may stumble upon this small part of the internet.
Below I’ve collected together a glossary of terms and links of research notes, and I’ve also collected together many of the blog posts about Mattie, so if you are interested you can follow his progress.
Infantile Spasms - The Glossary of Terms
When we were trying to get up to speed with all the new terms we kept a note book, writing down phrases from the doctors and then spending the evenings searching for what the ment. The following is the list of phrases or items that seemed the most relevent for us. I’ve originally included links for additional detail. It has been a while and I do hope the links still work.
- Treatment Plans
My notes on treatment plans, what they are and specifically what is generally used for Cryogenic IS.
This is the definition of the brain wave pattern observed in a baby suffering from Infantile Spasms.
- (Link broken) Modified Hypsarrhythmia
“Modifed” hypsarrhythmia is defined as focal or asymmetric discharges, episodes of voltage attenuation, and some interhemispheric synchronization. Modifed hypsarrhythmia, often seen in older infants, may also have some normal background activity and relatively few electrodecrements. This too is common with Infantile Spasms, and is the type of EEG Mattie originally presented with.
- High-Dose Steroid Clears Most Infantile Spasms
Really good publication on infantile spasms and the use of steroids. Highlights the importance of early detection. Only difference in the suggested treatment here v’s Matthew’s treatment are:
- Matthew underwent 30 min sleeping EEG, not 24 hour
- Matthew is taking 40mg of prednisolone (2*20mg doses/per day).
This study recommends 8mg/kg/day to a max of 60mg. Matties dose works out as 4mg/kg/day.
- Baby Bradley and his Fight with Infantile Spasms
Emma and I found this a really great resource. It’s the story of another little boy, Baby Bradley and how he and his family are dealing with IS. He’s way ahead of Mattie in terms of treatment, and progress. It has been comforting and reassuring to read about another babies progress. Emma calls this her “good news story”.
We’ve starting blogging Mattie’s story and how we as a family have been dealing with Infantile Spasms. I have a post here which describes why we are sharing Matties story.
- Infantile Spasms and Matthew (Part 1)
- Infantile Spasms and Matthew (Part 2)
- The “Mummy Card”, Mattie and Infantile Spasms (Part 3)
- Preliminary MRI Results – Mattie and Infantile Spasms (Part 4)
- Home at last - Mattie and Infantile Spasms (Part 5)
- The EEG & Difficult Choices - Matthew and Infantile Spasms
- Getting Matthew Home Again
- Matthew’’s Back in Hospital
- Big-Data and Infantile Spasms
- Researching Medical Conditions - Advice from an Expert
- Mattie - Is he back to normal?
- Learning about Learning: Myelin, Infantile Spasms
- Mattie’’s Progress - Returning Spasms & Physical Development Report
- Mattie’’s Checkup is Coming
- Mattie’’s Check Up Results
- Mattie’’s Spasms Return
- The Pre Christmas EEG Results
- Mattie’’s Check-up at Temple Street (11th February 2014)
- Mattie Update OT and Physio Report
- Mattie returns to his physiotherapist!
- A Very Different Train Journey; Mattie’’s Christmas
- World at his feet
- Giving a little back