|
My son is 7 years old and was diagnosed with a porencephalic cyst when he was 5. Since then he has been diagnosed with epilepsy, mild cerabral palsy, ADHD and is dyslexic. I am bringing him up on my own and was just wondering if there is anyone who has a child with the same kind of problems??? ↓
|
|
| Name: Catcorn | Date: Jan 22nd, 2007 4:24 PM |
| I have talked to my sons speach and language therapist and she has only ever heard of one other child with a porencephalic cyst. Cant find much on the internet as its just the same informaiton over and over, does'nt give stories of other children. If anyone has come across a site with this can they let me know?? Thanks ↑ |
| Name: rizzo | Date: Jan 28th, 2007 2:49 PM |
| Hello Catcorn. I am having a similar problem. My 18 year old son had an MRI in which they think they have found a porencephalic cyst. What little I find on the Internet just doesn't seem relevant to him. He had ptosis, but other than that no physical problems and it wasn't until he went to college and got completely lost trying to manage his day to day life that we took him to a neurologist. I always thought he had the innattentive ADD, but it was never severe enough that he would get diagnosed without expensive tests. But like I said, he is physically fine, he even played basketball in high school. But the cyst on the MRI is really big and it really bothers me that I can't find any more information. ↑ |
| Name: Catcorn | Date: Feb 5th, 2007 10:06 AM |
| Hello Rizzo, most of the information I have found doesnt relate to my son either. His nueorlolgist refered him for assesments for ADHD but luckily in Ireland the costs are covered. My son plays basketball also in school and he is one of the best in his class which is great for him. He also swims, plays hurling and gaelic football he just wears out quicker that others. It is great to hear from another mother and I am delighted your son has gone through 18 years showing no symthoms. I am trying to make my sons life as normal as possible so it is great to hear about your son. thanks again. ↑ |
| Name: crackers | Date: Mar 11th, 2007 11:25 PM |
I have a 14 year old daughter with a porencephalic cyst, mild cerebral palsy, ADD, OCD, Eating disorder, depression, cuts herself and has suicidal thoughts. She is failing in school and can't seem to concentrate or care. She is alienating herself from friends and is about to undergo crises counselling this week. Altho the specialists are hitting the depression as the root cause, I am starting to wonder about the porencephalic cyst. Her worst school courses tend to be math or computer or anything with a lot of detail. She is messy in her work and her habits. She is affected on her right side with mild cerebral palsy.
When she was diagnosed, my doctor researched and said she got it in vitro as a result of a stroke. He said it is extremely rare and is usually known to be caused by heavy drug use in the mother (WHICH WAS DEFINITELY not the case--never took so much as a tylenol when pregnant). I wonder about the relation of her symptoms to the porencephalic cyst as a result. Does anyone else know anything about any of this? ↑ |
| Name: lindalu | Date: Mar 11th, 2007 11:51 PM |
| Wow!!! You have a whole lot on your plate Im so sorry to hear that! I dont have a child with as many disabilities but I do have a child with a spinal cord injury! She has since grown beeing 21 years old now. I do have to say when I think I had things bad or my life was riddled with despare all I have to do is read a post like yours. Then I realise my life and my childs disability was not all that terrible! There are a lot of kind understanding ladies here to talk to, so take advantage of it! ↑ |
| Name: Catcorn | Date: Mar 26th, 2007 12:40 PM |
Hello Crackers, my son also has mild cerebral palsy (left side), epilepsy, ADHD, is dyslexic and being tested for Aspergers all this along with the porencephalic cyst. He is also messy with his work, he has a very short attention span and sometimes just jumps up or shouts out in the middle of the class. He is only 7 but has said he wishes he was never born or he wants to go to a cliff and jump off. His emotions are everywhere and i have been told this could be because this part of his brain is missing.
In school now he has an SNA (special needs assistant) and resourse teacher. In maths i have found he is much better if the problem is put downwords eg - 56
- 26
------------
30
if it is put this way 56-26 = he cannot understand it. or if in his book it says sam has 5 sweets and tom has 4 how many have they got he cannot work this out as the words with the numbers he cannot get. (dont know if this makes sense???) your daughter is older now so her maths would be words like theroms and stuff (nightmare even with out having problems).
I also never took even a painkiller when pregnant. but i did have a difficult labour with forceps and vacum so dont know if this could have caused it. I do believe all his toubles are relating back to the cyst and depression and suicide thoughts are all to do with emotions. ↑ |
| Name: pwheatle | Date: Apr 7th, 2007 4:14 AM |
I have recently adopted a baby who is now five months old. She was diagnosed with a porencephalic cyst. It covers just over fifty percent of the right side of her brain. There is some damage at the front of the left side. She is hydrocephalic. Other than vision impairment she is developing quite nicely. She is very cheerful and responsive. She does not use her hands all that well yet. She can batt at her hanging toys and pull her soother out of her mouth and attempt to put it back in. I believe her to be delayed somewhat gross motor wise however she has learned to roll over. She really is doing well. To be honest though I am surprised that she does not have seizures and isn't more delayed. I am wondering if this is to come and if perhaps her development will slow.
Tricia ↑ |
| Name: Catcorn | Date: Apr 10th, 2007 8:39 AM |
| Hello Tricia, my son had his first fit (absent siezure) just before he turned 5 it was only then they discovered the porencphalic cyst. His development was normal enough walking just before his 1st birthday. He has only had small siezures never grand mal. He has been diagnosed with mild cerabral palsy as a result of the cyst, slight limp and he gets tired quicker than other kids his age. The cyst affects everyone different and the docs always give the worse out come. My sons fits are controlled now been over a year since he had one. If she does start having them, medication is great now and you can get them controlled. If you saw my son you wouldnt think anything was wrong with him and by the sound of your daughter she will be the same. Good luck and with everything and let me know how she goes. ↑ |
| Name: crackers | Date: May 15th, 2007 3:44 AM |
| One thing my daughter's doc did was have repeat CT scans over the course of a few years to see whether or not the cyst was growing. That is a good indication of whether to expect an increase in problems or not. My daughter's never did grow. However, the specialists all insisted it was a developmental problem, not something that could occur during the birthing process. My daughter is 14 and has never had any seizures, altho there is no age limit as to when they could start. As for the other symptoms--ADD, OCD, learning difficulties, depression, we put her on Prozac and Ritalin a few months ago. She is amazed at how much the ritalin has helped her to focus and concentrate in school. She can't say enough good about its effect. Her grades are also gradually improving. I know ritalin sometimes gets a bad reputation, but I would not worry based on my experiences with it. ↑ |
| Name: Tam | Date: Jan 12th, 2011 3:54 PM |
| My son was born prematurely, and we were told when he was 6wks old he had a severe bleed in the brain and that he had a porencephalic cyst, he is now 2. they told us he might not walk talk or develop, so far he can walk and talk, the mental development and behavioral problems were still looking out for as these sort of things cannot be diagnosed so young, although i think he has got issues with his behavior - but as we have been told so many time with kids you never know.. And it all depends what part of the brain has been damaged ↑ |
|
|
