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donnajane

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My almost 14month old had his 5th EEG yesterday and Dr said most it was normal other than he had slow patterns on the right back side of his brain and also had an eye flicker with the flashing strobe lights. His Nureo said the right side slowness would account may account for the issues he is having on his left side, with weakness and also a lot of his events/seziures happen on his left side. He said unless things change more he is happy to keep his MRI in July and has also sent off a referal to the Metabolic team at the Children's hospital incase the MRI comes back normal and he is still having his events/seizures, strange rashes/swollen face which comes and goes within 20min, trouble with his left side and his development issues. He still is not sure what it is but mentioned Cerberal Palsy when talking about his EEG results as well as Migraine, Epilepsy and Metabolic issue. He said some may say he is optimistic but he still has hope my son might outgrow whatever is going on. He talked to us about medicating him so we all could get some sleep but when he said him not sleeping wasn't affecting him we said no to the meds as we can cope and I would prefer not to medicate him if we can avoid it. So far his development is just over 4months behind so we are working with him hoping that the gap between his developmental age and his real age doesn't increase ideally closes up a bit. I just feel blessed that in general he is a happy little boy.
Donnjane
 
Where are you located? Do you have Early Intervention, Birth to Three, anything like that in your are? I talk mostly about my 6 year old, but I also have a 2 year old who was significantly to severely delayed at 14 months. He has had a lot of issues, too. Apnea(which is even worse as of his last sleep study!), Sensory Processing Disorder, febrile seizures, and other things that HAVE resolved themselves.

Has your son had a sleep study? Has he had his iron and b12 checked? If he isn't sleeping well, you will not believe how much that can affect the way his body is working.

Early Intervention is amazing for delays. I was torn about it because I am a stay at home mom, and figured what could they do that I wasn't already doing? But just having someone new come in and work with him did wonders. He only did 7 months of it, which is a lot less than any of us were thinking.
 
Hi, Thanks for the reply. I am in Melbourne Australia. His Nureo has said he doesn't need any extra assistance physio etc at the this stage but to keep up what we are doing with working on encouraging him to use his left side more etc. His paed has done quite a few blood tests which all cam back normal some the bottom end of normal but normal. He had one weird result where the zinc in his blood was normal yet in his red blood cells was very low. He goes to child care at my work. I have 2 older children who also attend the same centre my 4yr old goes to kinder and my 2yr is in the 2-3 room. I am lucky as my office is right next door and I can watch out the window at them play and go across to see them during the day, they have had extra assistance for 4 hours a day for the last 5 weeks due to my sons issues but now until they get a diagnosis and also why he is the youngest room where his development issues don't seem so big we have been told funding for extra support would probably be hard to get. Luckily being a teacher I get around 12 weeks off to spend with my kids. Hubby and I have talked about how if needed I will either drop my work back more or stop altogether if Harrison needs more specialised one on one attention.
Everyone is slightly confused a to what is really happening. But it has been interesting that both his Paed and Nureo had never given any ideas on what it might be in the past are now saying things re what it could be. The MRI in July will everyone a better idea as to which path to look more into re his diagnosis. Its amazing how much having a child with their own "special quirks" alters how you see life in general.
Donnajane
 
Did they follow up on the low zinc in his red blood cells? Zinc is one of those minerals that is tough to measure using blood plasma or serum levels alone, because of the way the body regulates it. So it could be normal in his blood but deficient elsewhere. It's probably not a factor, just curious...
 
Interesting you mention that. My husband and I were talking about that the other day. As things which seemed not very important early on are now staring to fit into the different diagnosis's they are looking in to. Ie his strange body temperature changes, rahses, strange bowel movements (not food related as his diet is pretty much regular), not sleeping very well, punching his head on some days, slower development on top of his seizures/events/spasms. The Zinc levels were looked into a bit by both the Nureo and the Paed but the hematologists they both spoke too said that at this stage, quite a few months ago now, it was of no clinical significance that the Zinc in his blood was normal yet it was low in his red blood cells. Everything is now being looked into more.
If this wasn't happening to my son I am sure I would be fascinated anyway as to what is actually causing his symptoms.
Donnajane
 
Hi temp issues are he often leaves a huge sweat patch in his bed and he also will suddenly get really hot, often beads of sweat. It is also not uncommon for his feet to be very white/cold. He has had reflux issues since little but we thought he had totally grown out of them lately though his diet hasn't changed but his bowels mov'ts have. He has been on lactulose to help him poo, his gastro said he needed it as his system wasn't working right and he was always constipated. The Lactulose made him like a normal child Bowel action wise, But then a couple of weeks ago he started power pooing quite a few times a day. Often they smell like amonia, yet there was no wee. Sometimes its like water with "chunks" of un processed food in it other times it just runny and so acidic that it burns his skin on contact. We use thick bottom cream but if its goes outside of this, ie down his legs he has a bright red swollen rash straight away. In saying all this nothing is consistent which is why the medical team looking after him are still "searching" for an answer, he reacts differently all of the time to the same food so they are thinking it may not be food related now. He has had multiple food protein intolerances but we all thought he was over these. His Paed says a lot of what's going on points towards a metabolic (nureo transmitters) problem and his Nureo has sent a referal off the the Metabolic unit at the Children's hospital.
 
Sounds like you know my son!! Yes he does. At night he always has a cough after his bottle as they think he has reverted to his old habit of inhaling his milk while drinking over night. Its like overnight although he doesn't sleep very much his brain switches off more. He had really bad bronchilotis which lasted for weeks and in that time he started to develop Shudder Syndrome which then developed into what is happening now. Every now and then he has this weird cough during the day where it sounds like he is going to vomit but I keep getting told its his reflux reappearing.
Sounds like you know someone like my son!
 
This is super highly unlikely, but has he ever had a sweat test to test for cystic fibrosis? I just figured I would ask. How is his weight/growth? When you kiss him, does he ever taste REALLY salty? When you see the sweat on his bed, is there ever a white residue? My son was tested twice, one borderline the other normal. He nursed til he was 20 months, but his stool never hardened up. It would burn his tush and smell awful, like a burny chemically smell. He dropped off his growth curve even though he ate a ton. We had him allergy tested, but it was all fine.

On a long shot, the dr ordered a sweat test, which I didn't worry about until the first one came back borderline. Then I did a lot of research, which is why just a bit of what you said jumped out.
 
Wow thats interesting. No never had a sweat test. Before we had our 2nd child the OB did a genetic test to on me to see if I carried the "gene" which would give us the possibility of having a child with cystic fibrosis but I was negative so they didn't even bother testing my husband. Thanks for the info I will add it into what I already have as a lot of things you say seem very much like my little man. How's yout little boy doing now? How does the cystic fibrosis affect him?
Thanks again I really value any information as I am sure its going to be one of these long shots whichs helps us work out whats going on with my little man.
 
Thankfully, his second test was normal, so he doesn't have CF. It was a heck of a week in between tests worrying, though. But a lot of his issues he has outgrown.

If you were negative for the gene, than it is nothing to worry about. Both parents have to be a carrier.
 
Gald he was negative the second time around. Does your son have any diagnosed issues as he does sound a bit similar to my almost 14month old.
 
He has obstructive apnea that REALLY affects his sleep. We are having his tonsils out next Friday, so that should help. He also has Sensory Processing Disorder. Other than that, no clue. We have been to a lot of Drs, and through a lot of tests. Thankfully, now that he is almost 3, he has outgrown a lot of his other issues.
 
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