Hello this my first post. I have twin boys that are 7yrs old. They were 7wks premature. They are now in the 2nd grade. At 4mths old Allen was diagnosed with Hydrocephalus. He has had several revisions. He has a programmabe VP shunt. We have been very lucky in the fact that you would never know he has Hydrocephalus. Wade and Allen have been right on track all 7yrs. They were on the same level in subject at the end of 1st grade.
Allen has usually required a little more work on subjects from time to time, but it would come and go. We just thought he had the "I don't give a crap attitude." Now at the beginning of 2nd grade he is right at 1/2 the levels of his twin. Meaning Wade is double on nearly all levels above Allen. We have really been working hard, grounding him thinking it was just his attitude. Then today it finally clicked he is no longer reading some word that he has been reading for 2 years. Some word he will read it immediatly and then turn the page see the same word and can't even sound it out. His spelling tests if I have him write them down to spell it he will make an F everytime.
If I just tell him to tell me outloud he will make a 100. I don't know where to start or even if there is learning problems with Hydrocephalus. How do they test him, who would test him. I am kicking myself thinking we have let it got for 2 yrs when he was probably showing early signs the entire time. If you can shed any light on this I would greatly appreciate it.

Miranda

Miranda..I wish you the best with your son. We also thought that our son was just slacking off and not showing enough effort into his work. Our other son flew threw his homework while we spent hours with Mitch. Until I started reading about this same issue with other parents that have children with hydrocephalus I really did not realize it could be the disease effects. My prayers are with you.

My daughter was born with hydrocephalus and she has learning issues. The schools should test your son, the diagnostition, but frequently only after a referral from a teacher. But meanwhile take Allen for a neuropsych evaluation. You can take that evaluation in to the school if it is deemed he needs extra help. Schools can take forever, but remember by law they have to provide everything your son needs to learn successfully in public schools. You are getting ready to become your son's advocate in a big way! Stop kicking yourself, you are a Mom not a doctor. I tried to be my daughter's physical therapist and was a dismal failure. I did the best I could....that is all any of us can do. Every time my kiddo had a shunt malfunction she came away a little different. Yes, it breaks my heart, but thank God for shunts. Without one....... Hang in there! You will both be ok!

Hello Miranda;

My name is Susan, and I am Mom to two girls with hydrocephalus. Learning problems are very common for children w/ hydrocephalus, and they do get more challenging as the child gets older.

In general, here are some of the learning issues your son may be dealing with from the hydrocephalus.

Visual perception may be a problem, leading to difficulties understanding position and relationship of objects. There can be problems with depth perception, judging distance, or speed.

Problems with identifying difference between shapes will affect reading and writing. There can also be problems understanding shape, size, direction, volume, and position of objects.

Visual perception difficulties can consist of problems with judging slopes, height of kerbs, width of doors, or the space in a room.

Problems with decision making, logical thinking, and organization
Inability to follow verbal instructions
Short term memory difficulties
Passive behavior

Is your son in a public school or private? If private, I would suggest you contact your Neurosurgeon's office for a good Neuro Psychologist. Schedule to have your son evaluated. They will run a gambit of tests that can pin point his areas of weakness and possibly point out other secondary conditions that you may need to have him evaluated for. For both my daughters, they have tracking & other vision problems caused by the hydrocephalus that they were determined during testing.

If he is in public school, then I would suggest that you send an e-mail to the Principal and cc the teacher and the staffing coordinator (that way your request is in writing). Request a full (Psycho Educational) evaluation (NOT an "observation") to be done, as soon as possible. Outline the fact that your child has hydrocephalus, and the concerns that you have regarding his regression in school. (Remember, you don't have to know what the problem is specifically, you just know something is wrong, and he needs testing and help). You should also request that a meeting be called to discuss this as well as a Medical Plan, as he has a shunt. You want to make sure that the school nurse or clinician is aware of what to do in case of a shunt malfunction or failure. This protects both the school & your child. The school should respond to you within ten days. Your child should have both IEP for him (Individualized educational Plan) as well as a Medical Plan at his school.

I don't know which state you live in, but you can learn a lot as well as feel the comfort of having support from others living with the challenges of hydrocephalus. For our family, we have found that the Pediatric Hydrocephalus Foundation have been amazingly helpful. You can find them at You can locate the chapter in your state, and contact them for more information.

I hope that helps you some. You are not alone, but you will find most schools know little to nothing about how hydrocephalus can effect learning and or safety for your child, so you are going to have to be an assertive but respectful advocate for your son. The sooner you get him tested, the sooner you can start getting him the help that he needs to succeed. Good luck, hang in there.