cerebrel palsy diagnosis

  My grandson did not handle the birth process well and at one point his heart beat went down to 48.  They were ready to do an emergency c-section but his heartbeat went back up so they held off.  Then they couldn't get his head to come out normally and his heart beat went down again and they had to use suction on his head in order to have a successful birth. He is 11 months old and cannot sit up by himself and he only commando crawls and has difficulty with lumpy foods like cheerios.   He was unable to latch on to my daughters breast so she had to use a shield in order to breastfeed him.  He is now feeding without the shield. He appears to be of normal intelligence. His doctor referred him to early intervention.  He was evaluated and was qualified for their services. My daughter is being told that he is just developing at his own pace and not to worry.

Were any of you told your child was just developing at his own pace, and that after awhile they would catch up and it wasn't until later that he/she was diagnosed with Cerebral Palsy?

[littlebit667]

Let early intervention support you.  The providers will be able to answer these questions.  Yes, me might have CP..or he might not.  He is too young to be diagnosed yet..unless it is VERY severe.  CP comes in all shapes and sizes...there are a lot of people in the world that have it and you might not even know.  Give him and his providers time to see what happens and what he can do.  I am glad you got him help.  It will make all the difference.

[Dixie51]

Thank you for your response.  I will try to be patient and wait for his providers to evaluate him more and I am thinking if he has cerebral it is probably a mild case.  At least I hope so.

Should I ask my daughter if I can be a part of his therapy session?

[littlebit667]

if you are a part of his daily life...great idea!  You can be a support for her and him.   It is really not the therapy with the providers that is as important as the home supports that make the difference.  The providers should be giving you home friendly ideas to continue helping him when you are doing those things you would be doing anyway!

[Dixie51]

Jaidyn has early intervention therapy at 2 pm today, my time.  It is now 15 minutes after 11.  I will be there.  Please keep Jaidyn, his mother, and me in your thoughts.

[Dixie51]

Jaidyn's therapy went well.  His left leg is still weak as is his middle and they are working on strengthening them.  He can sit up on his own for about 10 seconds.  He is able to feed himself cheerios and had some mashed up meatball with his dinner last night.  He is much stronger than he was when I saw him last week.  I think he is going to be okay, and if he has CP it is a very mild case.  Happy dance!!!

[littlebit667]

That is wonderful news.  I am glad that you could be there.  He needs the support of his whole family to help him to be the very best he can be.
Thanks for the update.

[Dixie51]

I am still very worried. Jaidyn's left leg is still very weak and his parents are helping him use it as they were shown how to in therapy.  He can sit up for about 30 seconds on his own now, but only after he is put in that position. He gets up on both knees with help, but still only does the commando crawl very rarely using his left leg to push himself forward.  His left leg is usually just drug along as he crawls.  I gave him a few corn flakes to eat while he was waiting for his dinner, but he choked on them.  I think I need a hug.

[littlebit667]

It will take longer than you want, but I promise you should see results.  Keep at it!!!

[Dixie51]

Thank you.  I just need to take one step at a time and stop worrying so much.  No matter what is going on he will be fine because he is in a very supportive and large family.

[Dixie51]

Jaidyn didn't have his therapy this week because his mother is sick.  There haven't been any changes since I last posted.  He is still his sweet wonderful self.  He is a very serious boy and when different people are holding him he will turn and look directly into their eyes and study them.  When he is satisfied that they are okay he smiles, then turns his head and looks at other people or things.  He may not be able to sit by himself or crawl on his hands and his knees at 11 months but he is still his own person.

[Dixie51]

I saw Jaidyn today and he is able to sit for about a minute now before he falls down.  He still doesnt use his left leg  when commando crawling but his parents help him crawl on his hands and knees by helping him move his left leg forward.  I am pleased with his progress but hope he will continue improving.  

[Dixie51]

Jaidyn is continuing to improve although slowly.  He's still unable to sit up any longer.than one minute after put in the sitting position, but he is using his left leg a little more when he is commando crawling. He is able to eat cheerios, beans, and small pieces of meat. etc. He still gags on foods that are chunks mixed with thick gravies like lumpy mashed potatoes.  He has a long ways to go but I am pleased with his progress.

[Rkdbd]

Hi there.  I am new to this forum, but I do have a 7 year old daughter with moderate cerebral palsy.  After reading your story, the first thing that came to mind was hypotonia.  Have any physicians or therapists mentioned this term to you?   My daughter has both hypertonia and a bit of hypotonia.  They both fall under umbrella of cerebral palsy; however, most doctors don't like to use that term for fear it will scare the parents and loved ones.  The reality is... It is scary, but im here to say from what u have described i would encourage ur daughter to be as proactive as she can be.  If her therapist is not sharing pertinent information with you - get one that will.  I believe the earlier u know the better equiped u r to do everything possible.  I felt confused and unsure for the first year... I was depressed.... My husband endured a serious back injury and almost died that year.  After he recovered, i dove into finding out as much as i could.  There are sooo many alternative treatments to research.  For instance,  my daughter and i layed in a hyperbaric oxygen tank twice a day for a month.  I pray that this post finds u and ur family well

[Dixie51]

Hi and welcome to the forum.  Yes the doctor did say that he had some hypotonia.  She also said that he would get better through therapy. I think the key word is better.   I didn't know that hypotonia fell under the umbrella of cerebral palsy. I have felt ever sense he was referred by his doctor to early intervention that he has cerebral palsy.  I don't know yet how much improvement he will have.  I don't even know if he is going to be able to walk and yes it is scary.  I do feel that he has only mild cerebral palsy and that he is very intelligent. My daughter is very level headed and has proved to be a wonderful mother and her husband is a wonderful father.  They are both committed to giving their son the very best and are faithfully performing the exercises recommended by his therapist. I have been researching his condition but I know there is much more for me learn.

Does your daughter walk?  How old was she when she was diagnosed and what symptoms were presented? Any information you can provide would be appreciated.

It sounds as if you had a lot on your plate when your husband was injured so seriously and your baby needed extra intention.  No wonder you were depressed. I am praying for you and yours.  Take care!

[Rkdbd]

Yes...as much therapy as possible is of utmost importance.  Cerebral palsy always refers to low or high muscle tone which is hypo or hypertonia.  I'm sure other characteristics would fall under umbrella term as well.  Cognitive ability has little to do with diagnosing cp.  My daughter is 7 and mainstreamed into a regular classroom. She has a full time aid and is thriving.  However she needs assistance with most everything.  She is in a wheel chair, but now receives 3 sessions of week of pt and ot and she is walking in walker for short periods of time.  Her low muscle tone wears her out very quickly that and low stamina. I was under impression she has mild cp because she has been tested and has an extremely high IQ.  Being former schoolteacher, I recognize that she is gifted in the linguistically.  She uses words and creates stories that most 5th graders wouldn't be capable of.  I say these things to reinforce his intelligence level does not necessarily have anything to do with having cp.  Rachael is considered to affected moderately if not more.  I am not trying to scare you your grandson he is so young  it is hard to say.  It was so hard for me the first year. I literally had a nursery worker at church ask me if she was mentally challenged because she couldn't hold her head up and she was going through seperation anxiety at 10 months.  That's completely normal.  I think it is irreresponsible of ur his doctor to say he will get better with therapy.  Yes he will get better, but how much better no one knows.  I will be praying for him.  I think I want to leave u with. Acceptance is key.  When I knew exactly what was going on I found acceptance.  U sound like such an incredible woman and ur daughter an amazing mother. Everyday I thank God for Rachael and the ability she has.   From seeing and hearing so many stores of slow development and child blooming later, I will pray and believe that for ur grandson.  I just encourage u to ask the tough questions every time the occasion presents itself!

[Dixie51]

Thank you so much for your reply.  My daughter doesn't even know he has a form of cerebral palsy.  She thinks he is behind because she held him so much and he needed constant attention because he was so fussy.  She thinks she didn't play with him right so he couldn't develop the skills he should have.   I have suggested that it might be something else causing his developmental delay but she thinks he will catch up soon since he is improving.

He is still very fussy and is a very light sleeper.  He wants to be held most of the time.  He is put on the floor for tummy time and is able to commando crawl very very quickly and plays with his toys. He still drags his left leg slightly when he crawls.

Is the neediness due to the CP?  Is it normal for a baby with hypotonia to want to be held all the time?

[Rkdbd]

The reality is his neediness has nothing to do with cp.  It most likely is a result of being held too much.  I think ur daughter might be looking for an explanation.  U cant delay a baby by holding it.  I assume u have access to internet... Google cerebral palsy.  Lawyers pop up like crazy.  That is because i sould guess 70% of time cp is the result of a mishap during delivery.   In my daughters case she was perfectly healthy but my placenta abrupted and doctor didnt arrive at hospital for five hours. She suffered from lack of oxygen for that entire time. Sounds like ur daughter had rough time. Thats to blame.  

[Rkdbd]

They will probably deltete. This but u reallty should talk to a lawyer

[Rkdbd]

They will probably deltete. This but u reallty should talk to a lawyer

[Dixie51]

Thanks for your reply.  I can't really contact a lawyer until Jaidyn receives a diagnosis can I?  I read somewhere that babies usually receive a diagnosis by the time they are 3.  That means we might be waiting for a diagnosis for another 2 years since he will be one on February 11th.  I feel like our hands are tied until he receives a diagnosis.

[greatexpectations_4_2012]

I was 5 when I was diagnosed with cp. I have a very mild case. I didn't start showing signs until I was 3. I was running before 10 months old. When I was 3 I began falling a lot and my left foot began turning in and toes began curling up. When I was 5 they realized I was legally blind in one eye. It was because the cord wrapped around my neck at birth and they waited too long to deliver me. It may take some time to diagnose but it is good that you all have him seeing a pt at a young age.