My son is 7 months and was diagnosed with static encephalopathy last week. He has spastic quadraplegia and is at a 2-3 month developmental level. The doctor gave me the diagnosis and then said we would take a wait and see approach. This is making for extreme anxiety! I would like to know the spectrum of mild to severe for this diagnosis. While I know there is a huge range, it is frustrating to be given no information. I would also like to know when in pregnancy this most likely occurred. I had a severe bleed at 12 wks 3 days and remained on bedrest the entire pregnancy. I then was hospitalized at 30 wks and subsequently delivered at 30 wks 3 days after a 7 minute deceleration with proceeding variable decelerations. I was then stat sectioned. On a 2 day ultrasound, a PVL was seen. I have been told this indicates it occurred prior to delivery at some point during the pregnancy, most likely during the antepartum bleed. I appreciate your opinion and any information you can provide.....
How is your child doing? How is his health? How are his feedings? Can you tell me if his thumb is always flexed inside the palm and is not extended by him at all?
Static encephalopathy means that your child has suffered some brain injury which has not progressed over time and has been same since the time of injury.
At what developmental stage is your child on examination by the doctor? You told it is 2-3 months at his age of 7 months. He is also a premature delivery and he was born 2 1/2 months prior. Hence his corrected age for assessment of neuro development comes to 4 to 4 1/2 months. This suggests that his developmental lag is 1 month, which is not significant at all. He needs to be monitored every month over a period of 2 years.
Is he smiling at you? Is he attempting to roll over?
The spectrum from mild to severe is little day to day functioning deficiency to severe impairment needing help for his routine work also.
At any time during the pregnancy, when there was placental insufficiency would have caused injury to brain due to short of oxygen in baby.
PVL is a specific type of brain injury of the developing brain of preterm infant. It refers to a characteristics periventricular distribution of white matter necrosis.
What is the site of PVL? Is it focal or diffuse? What is the grade of PVL? As the prognosis varies with each stage of PVL, so it is necessary to know the stage.
Hope it helps you.
Grant is doing well. His main issue is he can not have a bowel movement on his own. He also has some allergies to foods and formulas. He is on Allomentum (sp?) now and seems to be doing better. He can hold his head up and knows us, responds, smiles, and makes some verbal noises. He rolls from tummy to back but not from back to tummy. He cannot sit and he has very high tone. The pediatric neurologist said he was concerned with the degree of his hypertonicity and may consider putting him on meds prior to PT in the future. His thumb is frequently like that but he has started extending it and opening his hand slightly, but it is mostly closed fist with the thumb inside. He is always hyperextending backwards as well. You are right in that his adjusted age is 4 1/2 months. When you say he needs monitoring monthly, who do you recommend should be monitoring him monthly...his pediatrician or a neurologist or other? Please advise. I had a severe subchorionic hemorrhage at 12w 3days. I was advised to have a D&C, but declined, so yes, he did have placental insufficiency. He then was delivered via emergency C/S at 30 wks for a 7 minute episode of bradycardia then repetative variable decelerations. They described the PVL as being located adjacent to the left ventricle on the inner aspect towards the bottom if you are looking at the films. It is stated to be diffuse. There is no grading on the report or anywhere within the record. The doctors gave no more information than the dx. I did read that 25% with spastic quadreplegia never walk, 50% have moderate impairments, and 25% walk. I also read that MR is more common in quadreplegia clients. Any other thoughts...... thanks for answering me, I really appreciate it.
It is common for patients to have bowel abnormality.
I think you would be giving her some bowel relaxants. If not, I think you should be discussing this with your Pediatrician.
Regarding Grant's MRI, it is better to have diffuse lesion as compared to focal lesion because in diffuse lesion the cellular target is Oligodendrocytes and its precursors and severity of lesion is less severe. Clinically the child would have cognitive deficiency and behavioral problems.
If you do follow up scans on him you find decrease of white matter volume and ventriculomegaly.
I think you should be following up regularly with pediatrician for all his growth and development and intermittently you should follow up with neurologist and development specialist.
His hyper tonicity does show that he is spastic.
Is his both legs and both hands are involved or only legs or only hands?
As I have said that he is bound to have some cognitive or behavioral deficiency.
I would appreciate if you keep me informed about his clinical developments.
He did start on Miralax, Mylanta, and previcid and seems better on these. What types of behavioral issues is he at risk for with a difuse lesion? He has spastic quad CP-all limbs are affected. The ped neurologist thought he had >75% cance of MR based on this dx. I live outside Washington DC and am having a difficult time getting medical appts. The appts for a developmental ped are 6-7 months out. I have an appt in Pittsburgh for 2/08. Any suggestions on places that are closer to the DC area? With spastic CP, is it possible to gain some mobility and walk with a walker? It seems many kids with quad do not talk either. Is talking possible? When would you advise starting OT and speech therapy? Right now he does PT twice weekly. I am also willing to do any alternative therapies which may be helpful? Do you know anythng about aquatic therapy? Please advise..... thanks so much :)
I have a 10 year old daughter who has cp. She is in a wheelchair and uses devices to commincate. She is being mainstreamed. She is very bright. Appointments are always hard to get. I hear good things about Chrildrens Hospital of Phili (CHOP). Good luck to you.
Hi, you need to get to a Neurophysio. Deformities happen very quickly and they need to teach you how to prevent those. Does your son have seizures?
If not or if they are under control, find a centre with a heated swimmingpool. It works wonders to reduce the spasticity. While in the water move every toe, every joint and open his hands. The best way we found to teach them to open their hands is by putting a cone shaped object in their hands (wrap the hand around it). You must remember to take it one day at a time and not worry about talking and walking yet. He is too young for speech therapy and OT. This usually only starts at about three years. In the meantime, think about a pacifier to reduce the tone in his mouth.
I have a book written by Glen Domain. Yes, a lot of it is a little too good to be true and it has proved to be that, but the idea behind it works well. We follow a similar program that our neurophysio developed with his book in mind. Remember CP children are usually bright, it just their bodies that doesn't work and as he gets older it should get easier to teach him different ways to use his limbs. What medication is he on to reduce the spasticity?
About the bowel movements. You are never going to achieve a normal bowel. Some laxatives causes extreme cramping and discomfort. I found that it worked well to massage his tummy with lavander oil twice daily and when he hasn't had a bowel movement in two days I give him an enema with Glicerien and a thin nasogastric feeding tube. Two years and we are still battling that one. How is he sleeping?
How is your son doing?
Spastic CP there is a tendency to develop deformities, contractures and poor development of postural mechanisms. Common associated problems are squint, oral motor dysfunction (e.g. drooling), perceptual and learning disorders. Seizures often develop as the child grows older. In Quadriplegic CP, bowel and bladder control is absent. Speech and feeding is difficult because of bulbar muscle involvement. Intelligence is markedly decreased.
You need to worry about speech therapy at present.
Regarding aquatic therapy I think mommyofnathan has explained you.
I would be interested to know his progress and problems.
Keep me informed.
Thanks for the information. Grant started having bowel movements on his own after starting the Miralax twice daily. He is like a different baby, much happier. I also massage his belly which seems to help some. He also rolled onto his side this weekend and is opening his hands more. He is eating cereal and formula mix and swallowing with no problem. He has good weight gain. His pediatrician was amazed how well he was responding to the constant exercises, etc. We do have a warm water pool on town over. Mommyofnathan, how many times per week is it recommended? I was told that the speech thearpist should become involved IF he develops feeding issues. He also has strabismus. Thanks for all the advice, it is really helping, I am down to four crying/breakdowns today :)
I have mentioned in other post that you are the one who should be strong now.
I don't think you should feel any weaker as it would reflect in development of your baby also.
The fact that your child is developing and growing normally suggests full marks to you as mommy and full marks to your dedication too.
How old are you? Are you planning for another baby?
What are your thoughts on other baby? Did you discuss this with your doctor?
I think it is too early to think of that.
It was just a thought came to my mind which parents routinely ask us.
Keep me informed.
I am delighted that he is doing well. Always, ALWAYS see the things he CAN DO and not the thing he can't. We cheer if Nathan burps on his own, we cheer if he caughs on his own (I even once complimented a child in a supermarket on a tremendously great cough!!) Anyway, that's the lighter side which comes with lots of time and lots of tears. It simply is not possible to be strong all the time for the rest of the people and your Grant. They must see that you are only human, that is the only way that they are also going to talk about their fears! Cry if you feel like it. It;s not going to help the situation but it makes you feel one hell of a lot better!!
Just remember that if this sadness interferes with your daily life, please seek help. I did use an anti-depressant for about 'n year and woke up one morning and decided to get my own life back. Try and give yourself a breather sometimes ( Once a week for a morning or afternoon). My husband and I take turns, one Saturday it's my turn, the next it's his. Good luck. I really do know how you feel and I would love to know how you and Grant is doing even if only every once in a while!
Sorry, got carried away there!! We made the water therapy part of his daily activities which he looks forward to. He spends an hour every day in the heated swimmingpool and he loves every minute. We also started him with horseback riding which he also enjoys. Another thing to keep in mind. Apparently the movement of the horse also helps with spasticity etc. Still new to this horseback thing but will let you know.
Hi, You said to Midwifemom to make Speechtherapy part of his treatment now already. Is that for reducing the tone in his face and mouth, help with feeding or actual speech? It is not recommended here until the age of about three and I was wondering if I may suggest to a friend of mine (13 month old girl ) that she undergoes Speech therapy already?
I have not mentioned about speech therapy part of his treatment now, did I?
Speech therapy ideally should be started around 2 to 3 years of age depending on neurological involvement.
You can’t send a girl of 13 months for speech therapy.
She should be evaluated first by speech therapist and then a decision can be taken.
Grant is getting regular PT. They said this week that his cognitive development was about 6 months (he is 8 months but was born at 30 weeks) and his physical development remains at 2 months. He rolls (throws himself) from the front to back and has rolled a few times to his side. It is a very awkward roll though. You asked about other children in the future... I had to LOL, no this is it. Grant is a fourth child and my uterus did not hold out well during the pregnancy. I have a 9,7, 3, and he is 8 months. My hands are full and my sanity is gone! I started counseling which has helped...the diagnosis was 6 weeks ago. I have learned you really don;t die of a broken heart and life goes on...... His ped neuro here estimated that it is a >75% chance he will have cognitive impairment. We have met on child with spastic quad CP who talks, but is this rare? What % of kids with spastic quad CP have the ability to communicate orally? He is getting PT twice weekly. What other therapies would you recommend at this age? Thanks..... Michele
How are you and how is Grant doing? Tell my Hi to Grant too. If the child is born premature his development is supposed to be noted as per his corrected age i.e. his age from expected date of delivery.
As you pointed out that his assessed developmental age now is 6 months for his actual age of 8 months is appropriate for his age. I am very happy to hear that news. Only news which is of a concern is his developmental age which remains at 2 months, but I think we should help him with infant stimulation program.
The percentage of people having ability to communicate is minimal, though I don’t have exact numbers.
I think you can start training him with phonetics if he understands and make him understand by touch the words what one can speak at this age.
Keep me informed if you have any queries.
Hi, It is great news that you got him into a CP clinic. You will get the best tips and advice from them since it is multidisciplinary. Ask them for the details of the support group. This can be a pretty lonely road on your own. I am so glad you are going for counselling - not saying there's anything wrong with you, but I cannot imagine anyone in a similar situation to just keepo going. It's simply too traumatic. Hats off to you.
Yes, sleeping finally with Melatonin., going to have to repeat the anti-reflux procedure - reflux is back. Anyway, baby steps. Anything is manageable if given time. Good luck!
I wanted to tell you, that Nathan has started "talking". He is able to "say" three words now. ungaa for hungry. I ask him to show me he is hungry when he says that and he puts his hand in his mouth so unless I am completely crazy, it simply means he is hungry. He also never says it unless he is hungry and after a feed, he says ankoo, pretty much Thank you which he also only says after you feed him, bath him or change his diaper. And he has started with da when he sees his dad. The point I am trying to make is, even if the odds are against you, don't give up hope!! The chances are minimal yes, but that doesn't mean it is impossible for him to communicate. He might not be able to make a speech one day but telling me he is hungry or thank you, to me is a marvelous accomplishment. Talk to him often and repeat words over and over and over and over!!! Remember, baby steps.
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