Brain Injury reply, thanks for feedback!

MistiBray2BE

 

Again, I really appreciate all the responses. I dont know why I havent used this site sooner. I have really struggled coming to terms with the fact that my son is going to have some problems. I feel so guilty that I cannot just "accept" this, Its all I can think about, it seems and I wish I could just take him as he is and "get over it!" I love my son more than anything in this world but always wonder, what if.... What if I had a C-section, would things have been different? Was there anything I could have done to prevent this? But I have a really good support system full of family and friends who have been there through it all and I really truly know that he will be just fine and God has Big Plans for this boy! Again, this message board is going to be so beneficial to me, Thank you all! I find myself watching other kids in public and seeing things on facebook that really just gets to me (babies reaching milestones before my son, or doing other things that he is not), but I just haveto remember that all babies are different!

Enough about me,

I will try to answer everyones questions and hope to get some more feedback from you guys. I have talked to the Neurologist about side effects of Phenobarbitol and getting Lane off of it, and he just tells me that it is an old drug and has been studied more than the newer ones and the benefits to not having a seizure outweigh the possible side effects. I can tell a big difference when they go up on his dose and when its been a month or so after the increase he starts to laugh and smile alot more. He sleeps alot when they go up on it, I hate when they increase it but I know its for his own good. They say that if he hasnt had any seizure activity (which he hasnt that we know of), that at a year old they will do another EEG and try to wean him off of this. I want him off of this so bad but I would feel so bad if I pushed and pushed to have him weaned off and then he turned around and had a seizure.

Lane had CTs in the hospital and when he was about 2 1/2 months old he had an MRI. The dr said the images looked similar to what a drowning victim looked like, his injury effected all parts of the brain, not just one area like a stroke would. He said that he couldnt tell us what his outcome would be. He said that he may end up doing just what he does now (eat, sleep, etc.) or he may be just fine, but a little bit slower meeting his milestones. Its hard to hear that, I just wanted a concrete answer!

Lane is going to the ped. opthamologist on Thursday for an eye exam, havent had them checked yet. He looks up and back to the left alot and wants to lay with his head back (thats when he smiles and laughs the most) He also (like someone else said) wants to kind of cross them at times and sometimes it appears that he has a "lazy" eye. So we are doing this to see if there might be a problem with his vision or if its an underlying part of the brain injury.

Lane is involved with TEIS (TN's early intervention program) and is seen by Siskin every other week and PT once a week. They are working with him on sitting and working on getting his fists to relax, wants to have a tight clench alot of the time. He is doing fair, he has the posture to sit up but cant do it by his self and alot of the time he wants to lean his head forward (strength in neck not the best yet) But we are doing alot of tummy time to try to get him stronger. He can stand up on his feet when you hold him under his armpits but doesnt try to take steps or anything. I think he has the strength to do alot of things but because of the brain injury he cant. Rolling over from back front to back he can do but he cannot roll from back to front yet. He isnt really grabbing at things or making social interaction (smiling when we smile or looking us in the eye when we talk, always looks in "space")

Lane had an apea monitor for almost 4 months and most everythng was a false alarm. Lanes bleed was a stage 2 , I wanna say, not 100% sure. I believe there was 2 bleeds also.

I cant really think of anything else, but I have some questions.

How do they diagnose CP? Is there a test or is it just based on the childs level of function?

FloraK8...Are they saying that your sons brain injury could be genetic? I worry about future pregnancies too.

Thanks a bunch ladies, sorry this is super long!!

kar5162

I have so many of the same questions.  DS was born vaginally at 34 weeks and had a tight nuchal cord.  From hypoxia then or something in utero or something thereafter, he has mild PVL with motor delays that are much less than some, but fairly significant.  I wish there was a magic ball, but unfortunately there isn't.  Our neuro said that from where the damage was, it was likely that my son will mostly have just motor delays, but that the level of difficulty was unknown - there are kids with significant damage who are minimally impaired and kids with mild damage who are significantly impaired.  We have him in PT, a developmental playgroup, swimming lessons and are just starting hippotherapy to try to help him progress as much as he can.  We just won't know until he gets there how far he'll go.

CP is a clinical diagnosis.  There is no test.  I think technically there should be evidence of brain injury and some type of motor impairment.  There are varying stages of CP depending on the level of impairment ranging anywhere from your average bystander might not even know, just think the child is somewhat on the clumsy side to unable to sit/stand/chew/verbalize/etc.

Good luck to you!

Florak8

It sounds like you are doing all the right stuff for your little guy!

The reason we are following through with genetics is because the PVL found on the MRI was somewhat questionable. The radiologist said it was not PVL whereas the epileptologist and neurologist both said it was a slam dunk. There are some genetic syndromes that have the symptoms of hypotonia, seizures, and eye movement problems, so in our situation we need to investigate that. (My water broke early and DS arrived with just a few late preemie breathing issues, but beyond that we thought the birth went well.) There was no immediate evidence of any prenatal insult to the brain. My gut says it is in fact PVL causing his issues, but we may never have a concrete answer.

You may not need to pursue genetics. I have heard that some women get checked for clotting disorders, etc. PVL can also be caused by infections during pregnancy. I had a bad bad cold the week before DS was born, so I tend to wonder if that caused it.

I hope this helps. It is a mentally and emotionally overwhelming thing to try to decipher the causes, when the doctors don't know.

MaxandRuby

Hey there! I replied to your original post. My DS2 (almost 2yr) has CP and was diagnosed at just shy of 10mos old. Please feel free to PM me if you have questions.  BTW - I am also in TN (just got here a month ago) and am anxiously awaiting for TEIS to get services started. We are about 4hr apart when I mapquest your town and my town.

While we haven't had seizure issues, it seems many ladies on this board had their child weaned to Keppra. I don't know anything about it but maybe ask the doctor if he can be weaned to that or what his reasoning is for keeping him on the phenobarbital.

Cerebral Palsy is a clinical diagnosis only. My understanding is they go off of a case history and physical exam and may follow that up with additional testing. CP is  We had a MRI done shortly after the diagnosis and it showed PVL with secondary Wallerian degeneration. They wanted to do a spinal tap at the same time of the MRI since DS2 was already sedated but I ultimately refused that invasive procedure. They also did some bloodwork which they took at the time of the MRI. Bloodwork came back fine except for 1 test but it wasn't abnormal enough for them to be worried by it. The MRI supported the CP diagnosis. One thing to remember: a MRI can look completely normal with someone who has CP (this is directly from the neurologist). DS2's MRI, as stated previously, showed PVL. I know that the neurologist was wanting to do some genetic testing but my insurance company denied the actual test so it was never done. In our case, I really do not think there is anything genetic going on. There was a blood clot where the umbilical cord and placenta met and the doctor who delivered DS2 said it was a totally random thing that happened.

As for the eye stuff, don't be surprised if they suggest glasses (not a big deal in my eyes - no pun intended) or patching. My son has strabismus with esotropia. Both eyes cross (strabismus) towards the nose (esotropia) intermittently. For us, patching won't really work because both eyes are affected. He is significantly farsighted and has astigmatism in each eye. DS2 has been wearing glasses since just shy of 10mos old. He gets compliments all the time about how cute he is in his glasses.  :-)

CP also has a lot of variability in regards to how much it affects someone. Someone can be so mildly affected you wouldn't even notice, while others may be wheelchair bound and unable to talk. And really, with a child so young, and brains as pliable as they are this young, it really would be hard for any doctor to say for sure what your child will/will not be capable of. 

Keep asking questions when you have them (to us and your doctors). The ladies here are really all great. :-)

 

Sugarloaf5

I can understand where you are coming from. My son was born 3 months premature and by 7 months of age his neuro Dr had diagnosed him with CP. He did not hold his head up for a little bit until after age one. Still 10 years later he has a hard time sitting on his bottom without help. He can sit alone in a chair with no problems. He did not start walking until age 3 and that was with the help of a walker which he used up until a year ago then we switched over to arm cruthches. He now is walking most of the time without any adaptive equipment but still can be unsteady on his feet.

He had siezures when he was is NICU but as he was released to go home his siezures had stopped. Then just as quickly they returned. He is now on Keppra which has done really well for him. However I was told that it can help relax the muscles and that maybe one reason your son is not on it. If he is still trying to build those muscles then Keppra may just not be good for him at this time.

My son will never get to run and play ball with everyone else but that is something I have finally come to terms with. I will admit it is hard for me cause I can see all the things that he misses out on but at the same time he has things that he loves to do that the other kids do not get to do as often. He has alot of computer time at school because he doesnot have good hand writting so alot of his work gets done that way. He gets to ride horses for therapy and fun all at the same time. He gets extra days away from school for Dr. Appointments and the rest of the day is a special day for him. He gets to go hunting and fishing all of the time which he loves. Things alot of the other kids do not get the chance to do. So really he is not missing out on things he just has other was to live and enjoy the life that God has given him. That is how I make it, understanding it that way. He does have a gocart which he loves to drive and race his siblings in.

I was told my child would be nothing more than a vegtable. He has come a long way but it has been a long hard road! We have had our good days and our bad days but everyone does. I pray for the best for you and your family. Take it one day at a time and be sure to write down any questions you may have and always ask your Dr and when in doubt get a second opinion.