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Old 03-23-2012, 08:27 PM   #1
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Need encouragement and hope

My son is 4.5 months. We are waiting for his infant MRI appointment and results from a battery of bloodwork but all signs currently point to spastic quadraplegia cerebral palsy. Our first good test result was a clean EEG.

His head control is poor and he is still dealing with strong primitive reflexes. He has rolled from front to back and back to front but it almost looks accidental when it happens.

PT has us practicing rolling (among other things) with him a few times a day to help him get past his reflexes.

OT has us working bottle techniques to improve his suck/swallowing (weight gain up to now has been fine but occasionally has reflux)

My son was not born prematurely and had no health issues before this so we were caught off guard with this turn of events.

The last week has been a terrible emotional rollercoaster and I'm hoping we are done with life at rock bottom.

This week my son showed the first signs of reaching/grabbing items with intent. It is a huge struggle for him but I managed to record a few sessions and show them to the PT. It usually happens first thing in the morning after a nice night of sleep when he is loose and limber.

It is hard to wrap my mind around it but a full schedule of therapy and potential surgical procedures down the road are a given. I understand walking will be a longshot but is still a possibility.

I guess I am writing to ask...where do we go from here.

 
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Old 03-24-2012, 02:34 PM   #2
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Re: Need encouragement and hope

My heart is absolutely breaking for you right now. My daughter was diagnosed with left sided spastic hemiplegia when she was 13 months old. My world was literally shattered. I cried all day, and even went back to that place where I wanted my mommy. It took me a few days, but I finally came to the realization that the only thing that had changed was my knowledge of the situation. She was exactly the same as she was the day before, and that I couldn't let my knowledge become her disability.

There is hope. Diagnosis at 4.5 months means you can be more pro-active in his treatment. The one thing I cannot stress enough is THERAPY, THERAPY, THERAPY. With my daughter not being diagnosed until 13 months, there was a surprising number of bad habits that we had to break with her. Kids with limited mobility will always find a way to get what they want. With your son starting therapy much earlier, he will learn to do things the proper way, rather than the easy way. We have had her in PT, OT. We've used braces, wedges, constraints.

It all seems overwhelming in the beginning, but once you get over the initial shock, and settle into a routine, it becomes easier to deal with on a day to day basis.

Keep in mind, what seems life shattering now, may not be so bad after a year has passed. I'm not sure of the the severity of your son's CP, but you might notice that with therapy and equipment, he possibly could be much more capable than you thought he ever would be yesterday.

Sorry to make this so long, but there is one more thing, that I feel is above all the most important contribution you can make:
YOU ARE YOUR CHILD'S BEST ADVOCATE. You know him better than anyone, and right now, he has no voice, BE HIS VOICE. Don't be afraid to ask question, no matter trivial they may seem. Therapist welcome parental involvement. If they don't, then find a new therapist. Don't be afraid to ask for a 2nd, 3rd, of 100th opinion if that is what it takes for you to be secure in the fact that your child is receiving the best possible care.

Good luck to you and your family, and remember they never promised it would be easy, they only promised that it would be worth it.

 
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Old 03-25-2012, 04:51 PM   #3
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Re: Need encouragement and hope

All the experts say it is too early to tell right now. PT said he could be confined to a power chair and need feeding tubes or be a walker and highly independent. But all we can do now is work on therapy.

Son goes once a week to see PT and about 20min of interaction before he is out of stamina. We see OT once a month and work him as much as we can at home using their detailed regimen.

Waiting to hear back about early intervention help as well.

It is so early we have no idea what to expect. When did other kids with spastic quad start reaching/grabbing frequently? When did floppy necks improve? When did reflexes integrate and disappear etc.

We feel like we are lost w/o map

 
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Old 03-26-2012, 10:06 AM   #4
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Re: Need encouragement and hope

At the age your son is now, it really is difficult to determine how severe it will be in the future. You said that he may possible need feeding tubes. Is he able to eat now without any or much difficulty?

I'm sure that you have scouring the internet trying to learn more about this condition since he was diagnosed. I know I did. My biggest problem with that the information I found was usually the worst case scenario, and left me feeling more hopeless. Just remember that like no two children are exactly the same, no two cases of CP are exactly the same either. My daughter and my husbands cousin are both diagnosed with left-sided spastic hemiplegia, and while hers is mild, his is more severe. Same type, same family, different severity.

The most relief I felt was when talking to the neurologist that diagnosed her. He told me that CP is not a disease. It's actually the way the body physiologically manifests damage to the brain. It is not degenerative, and it the brain damage will never get any worse. It may seem, at times, that it is progressive, but that is only as your child fails to hit developmental milestones. Once that happens, the therapy can be adjusted to address that issue.

I am in that situation now with my daughter. She was doing really well, responding to therapy, and recently, she started digressing. What had happened is that she had a growth spurt, and the spasticity in her muscles prevented her left leg from growing at the same rate her right leg did. It feels like we are back to square one.

I'm not sure where you live, but where I live, there is a state program that offers therapy to disabled children. My daughter received therapy from them until she was 3 (that was the cut off date). With this program, eligibility was based on disability only, and CP was an automatic qualifier. We do have private insurance which we used for treatment, but also received therapy from this program as well. I liked this program because the therapists actually came to the house and worked with her. They incorporated items/toys that were already in my house into her therapy, and instructed me on how to continue this therapy with these items on our own time. You might want to see if there is a program like this offered where you live. Use any resource available to you. You have nothing to lose, and everything to gain.

 
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Old 03-26-2012, 10:15 AM   #5
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Re: Need encouragement and hope

I think the PT said feeding tubes v. walking to explain the wide range of possibilities rather than to scare us.

My son can eat almost normally right now with a bottle. He does spit up formula occasionally. OT says he probably doesn't have full control of the smooth muscles in his throat/esophagus right now. Before that diagnosis I thought he was feeding just fine. Weight gain up to now has been great. He is 50th % for height/weight.

We are in a state with an Early Intervention program. Waiting for the application process right now. They will eventually provide free in home PT and OT. Until then he gets his therapy through our private insurance and we spend most of the day doing his exercises with him while he is awake.

We basically have cycles of sleep/therapy/feeding with him now. We are starting to feel bad for our 2 year old daughter but family has been coming over when possible to give her love and attention as well.

Funny you mention research and worst case scenarios. I was banned from researching online anymore by family. The stuff I found tended to be more worst case scenario. The videos on Spastic Quadraplegia were especially upsetting for my wife. She told me to find something more hopeful which is how I ended up here.

I know walking is "possible" so I added that to my searches and got somewhat better results.

I think the not knowing is what is killing us right now. He has almost no interest in toys b/c he can't really control his arms. We put toys in his hands and manipulate his arms/hands to touch his face/toes like a normal baby would at this point. Does this improve as he gets older? Does this improve if he starts getting botox/bacuflen?

Last edited by Administrator; 05-24-2012 at 05:18 PM.

 
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Old 03-26-2012, 06:36 PM   #6
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Re: Need encouragement and hope

I feel for you, because we too have been where you are right now. It's the waiting.. the not knowing.. wondering what the future holds.. feeling self pity and pity for our daughter.

My husband put it to me beautifully when I was sinking into depression... 'She has a life sentence, not a death sentence.' and one of my OT's also told me, 'Don't treat her any different to the other kids, she doesn't know she's disabled, she doesn't know what she's missing out on, only you do.'

Our daughter was born full term, nothing to indicate there was anything wrong. It wasn't until she wasn't sitting unsupported at 7mths that I started to worry... that's when I also put on paper all my concerns, fisted hands, stiff legs, not rolling over etc etc. Because I've previously lost a child with Spina Bifida I wondered if it was linked to that somehow. So when I searched the internet using the words, 'stiff legs' CP came up over and over again. On reading the symptoms I just knew that's what she had long before she even saw a doctor.

When she was first diagnosed like you they couldn't tell me what the future held, only time would tell. At the time they thought it was only diplegia and that at worst she would need a walker, at best she would have a limp.

Her MRI's showed no damage, they were all clear... I was told that 9% of kids with CP have normal MRI's. She also had a barrage of other tests done to rule out any other disorders. They were all clear.

Apparently our girl doesn't present as 'typical' and has been labled as their little 'enigma'.

At age 2 she was given a diagnosis of Spastic Quad, Level 4 on the GMFCS. I found this hard to believe, she can talk beautifully, she doesn't have drooling issues, she can do most anything with her hands, just differently.

She is almost 6 now, she is still classed as Quad CP, but she's a mix of spastic, dystonic and low tone (in her trunk). She is attending mainstream school but has an aide for most of the day to help with transitions. She can walk with a Hart Walker, also learning to use a Dash walker. She uses a wheelchair for a good part of the day... she can bunny hop crawl, she can write, draw and colour in... although very slowly. She is extremly popular, accepted and included by all the other kids.

I still don't know what the future holds for her... I gave up long ago trying to look too far ahead. It overwhelmed me and frightened me, so I take each day as it comes.

She gets treated the same as my other children, she gets roused on, time-out when she's naughty, she has to help clean up the toys and has jobs to do. I just allow for her own abilities and speed.

All that you have to learn in your early stages will do your head in, there is so much to learn, so many appointments, so much different therapies and help and support out there, as well as the equipement you will need. But please trust me, it does get easier... especially if you have a good case manager.

Now my daughter is at school I'm dealing with a whole new range of needs, therapists, equipment and fundings. But as I said, I take each day as it comes.

I wish you all the best, I hope your little guy is like my girl and gives you much cause for smiles as well as tears (I shed more tears of joy than sadness).

 
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