| From |
To |
Event |
| 21 Apr 2006 |
|
Jacob Born (9.9lbs), home delivery by Ambulance crew
!! No complications |
| 21 Apr 2006 |
Dec 2006 |
Jacob Breastfeeding |
| 12 May 2006 |
|
Hospital check - Prolonged Jaundice |
| Nov 2006 |
|
Introduced Solids (food) |
| Nov/Dec 2006 |
|
Jacob Started Crawl |
| 13 Dec 2006 |
|
Jacobs 8 month review with
Doctor found him to be meeting all of his milestones |
| Dec 2006 |
|
Stopped Breastfeeding |
| 25 Dec 2006 |
|
Noticed wind after feeding |
| Feb 2007 |
|
Wind Causing upper body to bend forward |
| 13 mar 2007 |
|
Contacted our Health visitor |
| Mar 2007 |
|
Jerks (as we call them) sometimes making Jacob fall flat on
his face when crawling |
| Mar 2007 |
|
Jacob having approx 6 clusters of jerks a day. especially
focussed around waking and getting tierd. Approx 15-30 jerks in each
cluster |
| 13 Apr 2007 |
|
Videoed Jacobs Jerks and showed to Doctor - Suspected Drop
Attacks |
| Apr 2007 |
|
Referral Made to Epilepsy Specialist |
| 16 May 2007 |
|
Meet with Consultant Pediatrician - Suspected Myclonic
Epilepsy. |
| June 2007 |
|
Jacob seems to be loosing some of his cognitive skills |
| 3 July 2007 |
|
EEG at Bristol Childrens Hospital show hypsarrhythmia and
Jacob diagnosed with INFANTILE SPASMS |
| 3 July 2007 |
9 Jul 2007 |
Started course of ACTH 0.5ml every other day |
| 10 July 2007 |
22 July 2007 |
Jerks continued, increased ACTH to 0.75ml |
| 21 July 2007 |
30 July 2007 |
High blood pressure due to ACTH, started Furosemide and
spironolactone |
| 23 July 2007 |
30 July 2007 |
Second EEG Clear, Stopped ACTH. Started Prednisolone
(weaning steroid) |
| 25 July 2007 |
07 Aug 2007 |
Blood Pressure still high, started Nifedipin |
| Aug 2007 |
Sept 2007 |
Jacob shows quick develeopement, starts to walk and play
with toys |
| Oct 2007 |
|
Noticed Change in Jacobs Behaviuor, not sleeping, funny
movements |
| 18 Oct 2007 |
|
EEG shows irregular brain activity |
| 18 Oct 2007 |
2 Nov 2007 |
Started Course of ACTH.
Started Metoprolol Tartate for high blood pressure |
| 3 Nov 2007 |
17 Nov 2007 |
Stopped ACTH. Started Prednisolone
(weaning steroid) |
| 9 Nov 2007 |
|
EEG shows improvement in
brain activity |
| 17 Dec 2007 |
|
Met with consultant. Pleased with Jacobs improvement,
but concerned it may return. |
| 31 Jan 08 |
|
Meet with early years
team, to get extra help for Jacob at nursery. Referral made for
hearing test and speech therapy, and educational psychologist. |
| Feb 2008 |
|
Jacob awarded Disability Living Allowance at the middle rate |
| 1 Feb 2008 |
|
Ring consultant as Jacobs has four head nods |
| 14 Feb 2008 |
|
EEG shows irregular activity, although Jacob is still
bright. |
| 14 Feb 2008 |
27 Feb 2009 |
Perscribed Sodium
Valporate (Epilim). 2 ml x 2. We have to gradually increase this dose. |
| 3 Mar 2008 |
|
Take Jacob to hospital with suspected allergic reaction to
sodium valporate. Jacob tested- results show severe herpes symplex
virus. |
| May 2008 |
|
Jacobs spasms have gradually
increase, increased sodium
valporate to 8ml x 2 |
| 26 June 2008 |
11 July 2008 |
Started Topirimate (Topomax) |
| 11 July 2008 |
|
Stopped Topirimate - Jacob had became very sendentry and
stopped babbling |
| 25 July 2008 |
|
4 hour video EEG |
| 4 Sep 2008 |
11 Oct 2008 |
Started Vigabatrin, dose increases every week |
| 11 Oct 2008 |
|
Stopped Vigabatrin, no
signifient change is spasms |
| 15 Oct 2008 |
2 Feb 2009 |
Started Zonisimide (Zonegran), increasing dose every
week |
| 18 Oct 2008 |
|
Cancelled family holiday
abroad, due to Jacob starting new Meds |
| 11 Nov 2008 |
|
EEG shows slow spike and wave |
| 25 Nov 2008 |
12 Feb 2009 |
Started Pyridoxine, to see
if Jacob has vitamin B6 deficiency |
| 23 Dec 2008 |
|
Meet with Genetics, childrens hospital. Look at X
chromosone. |
| 3 Jan 2009 |
27 Feb 2009 |
Started to wean Sodium
Valporate |
| 3 Jan 2009 |
2 Feb 2009 |
Started to wean Zonisimaide |
| 8 Jan 2009 |
|
Genetics Decide to do a
Broad Array CGH Test |
| Feb 2009 |
|
Started to see an increase in Jacobs babbling and
sounds. seems more clear headed on less medicine, but we see an
increase in spasms |
| 12 Feb 2009 |
|
Jacobs Gets Chicken Pox |
| 12 Feb 2009 |
|
Stopped Pyridoxine |
| 22 Feb 2009 |
|
Jacob awarded Mobility
Allowance from his birth 21 Apr 2009 |
| 27 Feb 2009 |
|
Stopped Sodium Valporate |
| 27 Feb 2009 |
To Date |
Started Keppra, increase
dose evry 10 days upto 3.5ml twice a day. |
| 9 Mar 2009 |
|
Meeting with consultant, ention Jacobs unsteadiness.
Look for patterns possible to investigate Glucose Transporter Type 1
Deficiency Syndrome |
| |
|
|
| |
|
|
| |
|
|
