need to chat to other mums with kids that have CP, my son is now 3 months old. please!!

Candice - posted on 07/18/2012

Oh my you sound like me a few years ago. I have a three year old girl who sustained her brain injury 0-72 hours before birth. It was a huge shock to us and to this day we don't know why. I can gush about all the things we weren't supposed to do but know we do it all and more! There is hope.
you can find me at www.lillythroughthevalleu.blogspot.ca or fb Lilly Throughthevalley

Have you heard of Bloom magazine?

JAY - posted on 07/17/2012

Hi Caroline, as you no my son was born with bleeding on the brain, causing brain damage and CP, in all 4 limbs, 2 weeks ago my son was very moody, unresponsive, not making much eye contact, not using his hands much just irritable all the time, not much neck and head control, at first I thought he was reaching all his milestones as my eldest is 8 years old this year and it was a long time ago that I had a baby in the house, so I could not really remember, and another part of me was in denial and imagined he was up to speed, it was until I started to see other babies his age I then realized just how far behind he is on his milestones, I started my son on this new technology, his 5 months on the 21/07/2012, its been week 2 and I have not told his day mother or therapist that I have started him on this as I want to see if they can notice a difference in him, and they both have, enough of a difference to bring it to my attention, they have both told me this week alone, the Therapist yesterday and the day mother this morning that he is allot more responsive, concentrating allot better, huge change in personality, very friendly and bubbly, making better eye contact, and putting his hands in his mouth “LOOKING AT HIS HANDS” and holding my collar of my Jersey or T-shirt when I carry him, just this morning on my way to drop my eldest son at school and Cayllum at the day mother, my eldest was sitting in the back with Cayllum and telling him to give his Barney toy a kiss, Tylor my Eldest would give Barney a kiss to show Cayllum, Cayllum was watching Tylor and leaned forward and opened his mouth to give his Barney toy a kiss, it brought tears of Joy to my eyes and really made my day!!!

JAY - posted on 07/03/2012

hi Caroline, thank you for the above, i am hoping i can purchace this stuff in South Africa, my son is 4 months now, from what age can i start given it to him? his in therapy and doing well, they show us what exercises to do with him and we do it daily and within a week he starts doing it on his own, but i really want to try this stuff as it can maybe help him speed up a bit more as mentioned his only 4 months and doing well but his still to young to tell what he can and can not do one day.

Caroline - posted on 07/02/2012

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, druelled constantly, developmentally delayed, frquent body tremors, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc tec. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how its made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!
I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I.
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Sweetgirlsmama - posted on 06/29/2012

I had a 28 week baby girl who is now 10 months old and carries a CP diagnosis. she has not met any of her milestones but she is in therapy and works very hard. I just keep a positive agttitude and work with her so she will have the best quality of life possible. I really feel blessed to have a special little girl.

Katrina - posted on 06/13/2012

Jay - I don't know a lot about the stem cell treatment, but I have heard of it being done here in the states as well. And wow! South Africa? I have a friend from there but can't remember where in the country he lives.

At three months you still have so much before you, but early therapy is HUGE for those with mild cerebral palsy. The fact that your son is meeting so many of his early milestones is wonderful! We were always told that even very severe brain damage doesn't always equal a child with very severe issues arising, while very mild brain damage can sometimes cause far worse issues. Children's brains can do so much re-wiring ...

I wish I knew more about the stem cell treatment but I don't, sorry. :(

JAY - posted on 06/12/2012

hi Katrina, thanks for replying, shame i hope you little guy is ok, i am in South Africa so the therapy here would probably been very diffrent to the USA and UK probably not as good as you get here even though its all private and costing an arm and a leg, i have been looking at this stem cell treatment they offer in Germany, but just trying to find out the costs involved as well as the lengh of time one needs to be in Germany for this treatment, do you know anything about this treatment?

Katrina - posted on 06/12/2012

Jay - sorry for the delay in responding, I've been sick and we've had some health problems with my little guy as well.

At 3 months I can see where speech wouldn't be as necessary - but would push for speech between at least 9-12 months because you will want to know about any kind of weakness in his oral muscles. Occupational therapy is potentially something I would watch more closely since, at 3 months many of the fine motor skills they could work on would be limited, by between 6-9 months fine motor skills should be starting to emerge more.

I would push for as frequent physical therapy as possible. Where you in the US or UK? We're in the US but I know from speaking with friends that the UK treats early therapy differently in many respects.

KIMBERLY - posted on 06/11/2012

HELLO GOD BLESS! I ALSO HAVE A CP SON HE IS NOW 6 YEARS OLD. HE WAS BORN 1 POUND 13OZ AT BIRTH MY WATER BAG BROKE, I WENT INTO LABOR EARLY. I WAS 23 TO 24 WEEKS PREGNANT. DOCTORS TOLD ME MY BABY DID NOT HAVE CHANCE OF SURVIVING, BUT TO GOD BE THE GLORY IS NOW 6YEARS OLD HE HAS BEAT ALL THE ODDS OF SURVLE. MY SON NAME IS TYREE HE WAS DIAGNOSED WITH CYREBRAL PALSY SPASTIC DIPLEGIC, MILD.TYREE CAN NOW WALK HE COULD NOT DO THAT AT 1 YEARS OLD HE COULD NOT CRAWL AS A BABY HE STARTED WATCHING OTHER CHILDREN AT HIS DAY CARE AND TOOK OFF. TYREE IS A HAPPY CHILD ALWAYS HE LOVES TO PLAY. I BOUGHT TYREE ABIKE AT 1 YEARS OLD THINKING THAT HE WOULD NEVER BE ABLE PEDDLE IT, I WOULD JUST PUSH HE ON IT TO GIVE HIM THAT EXPERIENCE OF RIDING A BIKE LATER ON TYREE STARTED PEDDLING THE BIKE ON HIS OWN. TYREE ALSO STARTED WALKING ON HIS BIRTHDAY OF NOVEMBER 2010. I WILL NEVER FOR GET THAT DAY MY BABY STARTED TO WALK, I WAS JUMPING UP AND DOWN FOR JOY. HE STILL WEARS BRACES ON HIS LEGS, UPTO HIS KNEES BUT HE USE WALK WITH A PEDIATRIC WALKER, NOW ON HIS OWN. TYREE STILL GETS PHYSICAL THERAPY, SPEECH , OCCUPATIONAL THERAPY. I FOUND OUT LATER WHAT CAUSED TYREE CONDITION WAS SOMETHING CALLED GROUP B- STREPP, DURING PRENATAL CLINIC THEY NORMAL DO NOT TEST FOR THIS BUT IF THE MOTHER HAS A URINARY TRAC INFECTION THAT DOES NOT CLEAR UP, OR RUPTURE IN MEMBRANES (WATER BAG ) THEY MUST TEST YOU FOR THIS THEY DO NOT TEST UNTIL YOU 32 OR 34 WEEKS INTO PREGNACNY IT CAN DAMAGE THE BABY IF NOT TREATED DURING LABOR WITH PENICILLINE OR IF YOUR NOT ALLEGIC TO IT SOMETHING ELSE. I JUST WANT TO LET ALL MOTHERS KNOW IF YOU KNOW ANY EXPECTED MOTHERS OUT THERE, IF THEY ARE HAVING LABOR PAINS OR HAVE A URINARY TRACH INFECTION OR YOU WATER BREAKS PLEASE HAVE YOUR DOCTOR TO TEST FOR THIS GROUP B-STREPP THERE IS NO FACCINE FOR THIS DEADLY BACTERIA THE MOTHER CAN SURIVE THIS ,BUT NOT FETUS. THIS ONE OF TH MOST WORST PROBLEMS WHY THERE ARE BABIES GETTING SICK WITH CYRBRAL PALSY THAT WILL AFFECT THERE LITTLE BODIES FOR THE REAST OF THERE LIVES. GOD BLESS!

JAY - posted on 06/08/2012

Hi Katrina, we recently took Cayllum to the baby therapy center for an assesment, they advised no speech therapy or ocupational therapy needed only physio therapy needed, is that normaly to only get physio, mind you he is only 3 months old now?

Katrina - posted on 06/07/2012

We have three different guys with a rare disorder and multiple diagnoses. My middle and youngest children were both born at 33 weeks with advanced IUGR, Andy was 3' 14'' while Logan was 2' 14'' - while Andy was only in the NICU for two weeks, he was diagnosed with something they called Peri-ventricular Leukomalacia, which caused damage to the white areas within his brain. He was late with all his milestones and had to have intensive early therapy but today is 12 years old and mainstreamed into a grade-level course load. He still receives additional help but is far surpassing all the the dim potential the so-called experts gave him.

Logan is our very special little guy, and he is specifically diagnosed with mild CP as well as a host of other issues. We worked hard with early therapy for him, as he (and actually, NONE of my boys) didn't meet any milestones on time. He had a brain bleed during the later stage of my pregnancy that destroyed a chunk of his right frontal lobe.

Today his is walking without a walker or braces (though he might need SMOs or AMOs again at some point) and walks well (runs well too!). He is just now, at 8 years old, starting to say a few words for us, very specifically. He has epilepsy as well, and his ongoing seizures tend to reverse some of the progress we've made sometimes.

But Logan, we were told, would never walk or talk ... he would just be a vegetable. And nothing could be further from the truth. He's an exuberant and happy little guy.

You just keep on doing what you're doing and get as much early therapy as possible for your little man ... and if he does need a little more help down the road you will deal with it, because that's what us moms do {hugs}

Michelle - posted on 05/24/2012

This is what I mean. It is hard to determine the true extent of brain damage based off a MRI on a child so small. You may not get a true understanding of Cayllum's brain damage until he is three. In the meantime therapy is a huge help and expect the most from your son. Sometimes they can do so much more than you can imagine!

JAY - posted on 05/24/2012

the first MRI they did they told us there was a bit of water on the brain but no damage, then with the same MRI scan they came back and said no he had a stroke, then they came back and said no he has a blood clot, then again they came back and said he was brain dead, then eventualy they said he had bleeding on the brain and it was alot and it killed of the white brain matter and he wont be able to do much, like smile, eat, drink, breath, hold things, move and so on, but look at him today, he tries to hold his own bottle, he sits up in this chair thing i have to feed him with a spoon, he is strong enough to suport his own back and neck, he smiles, laughs, rolls over, if put on his tummy lifts his head up and looks around from side to side and does the crawling effect and is able to move himself a little from one spot to another, he grasps his toys with both hands, and then you think about what the doctors said to us "his brain dead, what do you want to do with him, we can put him in a home and never have to look back"those words haunt me until today.

Michelle - posted on 05/24/2012

Please get ALL the therapy you can. It is SO important when they are little! Cayllum will need another MRI later in life. Being so young and getting an MRI it makes reading the results more difficult. I think you should get another MRI at 18m and the last at 36m. Once a child is three the brain is developed enough that the doctors can get a good view of the brain and determine the true extent of brain damage.

JAY - posted on 05/23/2012

I agree, he didn’t even ask for a report back, he said we just need to come back when Cayllum is 6 months old to do another MRI scan as he only had the one done a day after he was born, he turned 3 months on the 21/05/2012, his starting next week therapy at a center that has all the different therapists for infants and children, so hopefully they can give me more advise then what the doctor did.

Michelle - posted on 05/23/2012

NEVER listen to specialists. I know that sound weird but I often find them unconcerned and uninterested in my children if they are out of their sight. Their patient load is just too much. I would take your son to a therapy center where there are Physical Therapist, Occupational Therapist and Speech Therapist present and let each one do an assessment and determine if he needs help. That is what I did with my children. Who else would know better than the actual therapist?

JAY - posted on 05/22/2012

Thanks guys I really appreciate the advice, the specialist said he needs to start only physiotherapy, should he not be doing occupational therapy though? What is the difference? sorry I hardly ever go to a doctor only for check ups as iv never needed to, my first born son has only ever seen a hospital once and that was at birth and he is eight now, he never gets sick so all this is very new to me even a simple thing like physiotherapy.

Sharlene - posted on 05/22/2012

Michelle You could not say that any better.Take care

Michelle - posted on 05/22/2012

Just consider yourself EXTREMELY blessed! :) I have surviving quads. Two of my children have been diagnosed with CP. They were born 13 weeks early. Margaret weight 1lb 9oz and Joseph was 1lb 8oz. Margaret had a MRI which showed PVL and disseminated white brain matter injury. Joseph was a floppy baby with severe developmental issues. He is 4 now and acts more like an 18m old. He wears a diaper, just started speaking at four, eats only pureed foods and drinks a bottle. His MRI showed NO brain damage but EVERY other things about Joseph presents as CP so the doctor diagnosed him as such.

As far as what to expect from Cayllum, expect everything a "normal" child could do, Just realize that he may not be able to do everything, all of the time, that you expect but having the expectation will help you to continue to push him instead of treating him like he is "special." Get all the therapy you can for him while he is young. It is SO helpful!

JAY - posted on 05/22/2012

Cayllum was 38 weeks and c-section, his weight was 3.22kg and head circum was 39 cm, thats what made the doctors realise something was wrong, by the next day his head circum went down to 36cm, he to did not want to feed, well the first day with me he fed fine, it was only until he was in ICU and put on the wrong medication by the doctors and his mouth was burnt from the milk been to hot that he did not want to feed, the feeding tube was put down his nose into his tummy, but after 3 weeks of Cayllum in ICU doctors constantly given me the wrong diagnouses and given him the wrong medication i had him transfered to another hospital, which they stopped the anti fitting meds as both his EEG came bak clear for any fitting activities as well as all the other meds they had him on for who knows what reason as he did not need it, then he was feeding fine with the bottle and they took the tube out, 4 days later he was sent home, but yes he is very stiff in the arms and legs, its only when he is relaxed or sleeping that h is not stiff, and when burping him, but everything else he does he gets stiff, the doc told us to put a pillow between his legs to keep them open for his hips as well.

Sharlene - posted on 05/22/2012

She was a 31 weeker and had all medical issues with weight and head measurement and other stuff she was not drinking or sucking properly and she seemed stiff at the legs so mostly at 2 months of her birth but in actual fact corrected age birth. Iike I said she 2 yrs old and still doesnt walk and drag herself she is not interested in feeding herself and motor skills are pretty good but she seems to still pickup objects with one habd and seem to hold things with one hand no speech at all where she gets frausturated and screams with anger but all do I seem to get what she wants lol. think it depends on the progress and other intervention and therapies . My little one is interevent now we get homework once a week and she dont really improving but she's going at her own pase. I also believe in if a child with special needs and wants to reach there goals go for I alos have two other children with special needs and disablities so I have the right network support me and hubby , If you ever want to chat more please message me anytime,take care

JAY - posted on 05/22/2012

hi Sharlene, thank you for your post, at what age did you notice your little one had CP? and did she reach her milestones until a certain point then slow down or was it just something you picked up from day one? sorry to asks all of this, its just i know they say that children with CP are delayed on reaching there milestones and i am just wondering as Cayllum is 3 months and has reached his, at what age can i expect him to fall behind?

Sharlene - posted on 05/22/2012

Hi there, My daughter is 2yrs old and was also 31 weeker and has CP mod and brain damage and has Hydrocephalus and other GDD. My little angel has not reached all her milstones like doesn't walk and drags herself about cant feed and properly swallow no speech at all . But I feel like she's going at a steady point of reaching her milestones. You keep doing what your doing with little cayllum and show those doctors and other specilaist ,Litlle cayllum will prove thje impossible all CP little angels do , Take care of your little cayllum and you take care.