My little man's journey with IS thus far. Oakley was officially diagnosed with IS on the 21st of May this year. After 2 months of back and forth pediatrician visits, MRI scans, Eye Tests, 2 EEG's, Blood and Urine Tests. They first diagnosed him with Nystagmus (an involuntary eye roll), because that's how it all started. His eyes would roll upwards, I thought it odd and sought out help immediately. I was not convinced that it was Nystagmus, as my ''motherly instincts'' thought otherwise.
After much research and also noticing Oakley's behaviours changing to more vivid signs, we started noticing the ''jack knife'' body movements, intense clusters of seizures lasting anywhere between 2-5 min long with 15-25 spasms, at about 5-6 times a day we knew deep down inside our worst fear has come true, now just to convince the paediatrician and the paediatric neurologist.
At first after our 24 hour EEG the paediatric neurologist wasn't convinced of IS, he thought it to be more of a Myoclonic form of Epilepsy, as there was no signs of Hyppsarythmia. So we went with that, but still deep down inside we thought otherwise...as much as we didn't want to, you just can't ignore that gut feeling. We spoke to the paediatric neurologist and we were then booked for a 24hr VEEG (video EEG), so he was hooked back up and instead of 24hrs they let it run for 5 days. In those 5 days he continued having the seizures and they could pick it up on the VEEG. On the first day of the VEEG they picked up that Oakley had the Hyppsarythmia, and that's when our heart just broke into pieces. We knew it from the beginning and as much as we were prepared for it, you can't ever really prepare yourself for the truth. He was immediately started on 0.25ml of the ACTH injections once a day, along with the 3.5ml of Epilem (which he started on the 16th of April) and the 1ml of Keppra (which he started on the 4th of May) both twice a day. So he started the ACTH on the 23rd of May, and it started taking affect on the 27th of May, we've been seizure free for 5 days. He was on the VEEG when we started the ACTH and are waiting results to see if it stopped the Hyppsarythmia, we are due for a follow up VEEG in the next 3 weeks. Praying with all my heart the Hyppsarythmia has stopped and that he has a normal VEEG.
We still have 2 more injections to go, they are being spaced apart and the dosage has been getting less. His last ACTH injection will be this Friday. The paediatric neurologist says Oakley is a normal 7 month old baby boy, he's doing everything a 7 month old baby should be doing. He's just started sitting by himself, he's eating solids and loving them. He's smiling, talking, standing with support from me or my husband, rolling over and of course getting stuck, not very fond of tummy time. The ACTH has made him rather grumpy and very clingy and thus he isn't smiling as much, my poor little man has been through so much over the last 2 months. I breast feed and ever since starting these injections he's eating none stop (which is apparently normal being on ACTH), it is exhausting because he literally wants to drink all day long...and me being so stressed as this is definitely a very scary roller coaster for any parent to be on, i can feel that my milk is getting affected, but I'm not giving up, if there's one thing I can give my little boy that's all the advantages of breast milk. So I'm trying to stay calm as possible, but deep down inside of me I feel like this is a very horrible dark cloud hanging over me, and I do feel like I'm just going to break down and cry at any given moment. I hope that once the ACTH injections stop my little boy smiles as much as he used too, because even his sister says ''Oakley is so grumpy'' (she doesn't understand why, sweet girl).
I just pray that my little boy is going to be ok, and will grow and develop normally. I think once the ACTH injections stop it's going to be very nerve wracking, hoping the seizures don't return. Because as it is every little thing he does we over analyse as we live in this constant fear of it returning. We have however noticed that when he sits he tends to drop his head similar to someone dozing off and getting that heavy head feeling, which is associated with IS. We were told to keep an eye on it and to take notes of anything we feel uneasy with, but we are hoping the ACTH works and stops it as well as the seizures once and for all...but for now I suppose it's one day at a time. I would love to know what caused my sweet little boy to get such a horrible disorder, and I would love to know if it will stop for good, I'm just scared of the ''what if's'' feeling.... he doesn't deserve this.
After spending 10 days in hospital 5 days on the VEEG, and 5 days in isolation to monitor him on the ACTH as it makes his immune system very low, so no contact with any germs or viruses. We are glad to be home, even though we are still under quarantine no sick visitors, and anyone who wants to hold him or touch him needs to have clean hands. He's not allowed on the floor either. Least we are in the comfort of our own home and not staring at a room with 4 walls, we were starting to go a bit loopy. There is no place like home...
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