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Old 04-12-2012, 03:37 AM   #1
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15month old Could it be CP?

HI, I am new to this board. I am on a quest to help Dr's work out what is going on with my 15month old little boy.
He had feeding issues from birth but everyone thought it reflux and milk protein intolerance like my daughter. (I have a 41/2 yr old boy and and 2 1/2 yr old girl.) He responded a bit to the change to presecription formula and meds but not as much as I had hoped. Now he is better with food but some days thing react with him and the next the same food is OK? Around 5 1/2 months he seemed to have constant brochilotitis and we were seeing the GP everyday for awhile to monitor his breathing. His Paed worked out that she thought he was inhaling his milk while drinking so thickened his formula quite a bit and this seemed to help a lot with his bronchiolitis. He often has arching screaming attack which we have since been told were probably seizures. At 7 months we noticed his arms lock and shake. His whole body would go stiff eyes open wide and then his arms would temmor quickly. It would only last a few seconds but it got to the stage of him doing it over 150 times a day. He also would suddenly appear to lose control of his arms. He ended up in the ED after one night of seizures happening one after the other for 30min. They wanted to do an MRI but his breathing wasn't the best. He had an EEG it showed nothing. His seziures got more frequent so he was admitted again for a 24 hr EEG and again told nothing much showed and he had "Shudder Syndrome" and would grow out of it. He has trouble sleeping. His development is not as quick as expected and at his last Paed's appointment she assesed him at around 4months below what he should be. I call him young not developmentally delayed. He did not crawl, pull himself along at all till 11 1/2 months and then it was dragging his left leg and left arm tucked under. We also noticed he often doesn't use his left arm. His hand is in a fist and he often, especially when tired leans/slumps to the left. We have worked hard at encouraging him to use his left arm and spent quite a bit of time working to help his movement in general which appears to have helped. Although he still loves dragging himself (not using left leg/arm) he can now alos crawl on all fours and often crawls in a strange A frame manner or one leg straight and the other bent. He in now standing holding onto furniture and walking with a walker, he only does this depending on what type of day he is having. He was really curling his toes up which was making it harder for him to walk so we had him fitted for very suportive first walker shoes which seems to have helped his balance. His SHudder Syndrome is way less now and sometimes only a few times a day. He now has events/seizures where he vagues out and goes over, usually to the left or forward, at least once a week he has a seizure where its like the power has suddenly been cut and he just drops to the floor and lies there while his brain "comes back on line" again only a few seconds. His eyes sometimes go right back in his head or have also been seen to suddenly go very fast sideways and when it stops he looks so confused. He has rashes which suddenly appear on his face, or it swells up like he is having an allergic reaction but then 20 min it goes away. His left eye sometimes goes black/purple in the corner but just like the rashes it goes away. He has times when he just sits and stares with no emotion what so ever this can last over an hour. He doesn't even interact with his older brother and sister. He has only just started to put his arms up to be picked up. His last EEG showed a slowing on the back right hand side of his brain which his Nureo said would tie into what is happening with the slight weakness on his left side, the Nureo mentioed CP when talking about the slowing but not that he thought my little man had it. He is booked in for an MRI when he turns 18month and is also off to see a Metabolic specialist in June. So far his paed and Nureo have mentioned in passing it could be CP, Migraine or a metabolic issue. No one really has any idea and his Nureo said he just wants to make sure he isn't missing anything. My husband and I are so confused as he can have good days, still often when tired not using his left side as well as his right, and with a few smaller events/seizures but can be happy and interact with others and his development seems to be moving forward then on other days he looks terrible, he has more trouble standing etc than usual, has long periods of emotionless etc. Sorry for the long post just wondering if any of this sounds like CP.

 
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Old 04-12-2012, 10:24 PM   #2
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Re: 15month old Could it be CP?

A little bit sounds like CP. That is interesting that the Neuro can't figure things out. It is hard to say with him still being so young. Just keep on doing what you have been doing by keeping record of everything and see if he progresses or if he is getting worse. Sorry I couldn't help you much, but good luck.

Kim

Quote:
Originally Posted by djkcmkhc View Post
HI, I am new to this board. I am on a quest to help Dr's work out what is going on with my 15month old little boy.
He had feeding issues from birth but everyone thought it reflux and milk protein intolerance like my daughter. (I have a 41/2 yr old boy and and 2 1/2 yr old girl.) He responded a bit to the change to presecription formula and meds but not as much as I had hoped. Now he is better with food but some days thing react with him and the next the same food is OK? Around 5 1/2 months he seemed to have constant brochilotitis and we were seeing the GP everyday for awhile to monitor his breathing. His Paed worked out that she thought he was inhaling his milk while drinking so thickened his formula quite a bit and this seemed to help a lot with his bronchiolitis. He often has arching screaming attack which we have since been told were probably seizures. At 7 months we noticed his arms lock and shake. His whole body would go stiff eyes open wide and then his arms would temmor quickly. It would only last a few seconds but it got to the stage of him doing it over 150 times a day. He also would suddenly appear to lose control of his arms. He ended up in the ED after one night of seizures happening one after the other for 30min. They wanted to do an MRI but his breathing wasn't the best. He had an EEG it showed nothing. His seziures got more frequent so he was admitted again for a 24 hr EEG and again told nothing much showed and he had "Shudder Syndrome" and would grow out of it. He has trouble sleeping. His development is not as quick as expected and at his last Paed's appointment she assesed him at around 4months below what he should be. I call him young not developmentally delayed. He did not crawl, pull himself along at all till 11 1/2 months and then it was dragging his left leg and left arm tucked under. We also noticed he often doesn't use his left arm. His hand is in a fist and he often, especially when tired leans/slumps to the left. We have worked hard at encouraging him to use his left arm and spent quite a bit of time working to help his movement in general which appears to have helped. Although he still loves dragging himself (not using left leg/arm) he can now alos crawl on all fours and often crawls in a strange A frame manner or one leg straight and the other bent. He in now standing holding onto furniture and walking with a walker, he only does this depending on what type of day he is having. He was really curling his toes up which was making it harder for him to walk so we had him fitted for very suportive first walker shoes which seems to have helped his balance. His SHudder Syndrome is way less now and sometimes only a few times a day. He now has events/seizures where he vagues out and goes over, usually to the left or forward, at least once a week he has a seizure where its like the power has suddenly been cut and he just drops to the floor and lies there while his brain "comes back on line" again only a few seconds. His eyes sometimes go right back in his head or have also been seen to suddenly go very fast sideways and when it stops he looks so confused. He has rashes which suddenly appear on his face, or it swells up like he is having an allergic reaction but then 20 min it goes away. His left eye sometimes goes black/purple in the corner but just like the rashes it goes away. He has times when he just sits and stares with no emotion what so ever this can last over an hour. He doesn't even interact with his older brother and sister. He has only just started to put his arms up to be picked up. His last EEG showed a slowing on the back right hand side of his brain which his Nureo said would tie into what is happening with the slight weakness on his left side, the Nureo mentioed CP when talking about the slowing but not that he thought my little man had it. He is booked in for an MRI when he turns 18month and is also off to see a Metabolic specialist in June. So far his paed and Nureo have mentioned in passing it could be CP, Migraine or a metabolic issue. No one really has any idea and his Nureo said he just wants to make sure he isn't missing anything. My husband and I are so confused as he can have good days, still often when tired not using his left side as well as his right, and with a few smaller events/seizures but can be happy and interact with others and his development seems to be moving forward then on other days he looks terrible, he has more trouble standing etc than usual, has long periods of emotionless etc. Sorry for the long post just wondering if any of this sounds like CP.

 
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Old 04-13-2012, 02:56 AM   #3
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Re: 15month old Could it be CP?

Thanks Kim. My husband and I both wonder if he actually has an idea what it might be but is waiting for the MRI as when he referred us on to the metabolic unit he said the referal was "just in case" nothing showed on the MRI and he was still doing his weird and wonderful things. Funny thing is the Metabolic Unit read my sons notes and we were given an appointment within just over 3 months usually its a 6month wait. Will be interested when we see Nureo in 2 weeks to see if he wants to bring the MRI earlier or try and delay metabolic appointment.

Last edited by djkcmkhc; 04-13-2012 at 02:57 AM.

 
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Old 04-14-2012, 04:49 PM   #4
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Re: 15month old Could it be CP?

That is interesting. You'll have to keep us posted.

Kim


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Originally Posted by djkcmkhc View Post
Thanks Kim. My husband and I both wonder if he actually has an idea what it might be but is waiting for the MRI as when he referred us on to the metabolic unit he said the referal was "just in case" nothing showed on the MRI and he was still doing his weird and wonderful things. Funny thing is the Metabolic Unit read my sons notes and we were given an appointment within just over 3 months usually its a 6month wait. Will be interested when we see Nureo in 2 weeks to see if he wants to bring the MRI earlier or try and delay metabolic appointment.

 
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