I'm new... looking to connect.

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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Posts: 2
Joined: Sat Aug 14, 2010 11:04 pm

I'm new... looking to connect.

Postby MaryD » Mon Aug 16, 2010 2:14 pm

Hello all!

I'm a mother of a 21 month old little girl, named Chloe who has CP. I don't know at this point the severity of it, hopefully by thursday 8/19 after meeting with a developmental pediatrician, I'll know.

Chloe arrived 3 weeks early, and was vaccuum extracted via csection, which resulted in grade II IVH. She had an apgar score of 0 at birth, intubated and sent to NICU where she immediately had her first seizure. She was released 3 weeks later after she was able to feed and her seizures were being controlled by phenobarbital.

After taking her home, I noticed she barely moved, or show emotion. She cried a lot in the early days and it got worse through time. We thought she was colic, but later we found out that it was all the pressure in her brain that was causing it.

At 5 months she needed emergency surgery for shunt placement... the day after the surgery Chloe smiled for the first time!

At 7 months, my husband and I noticed she was having these jerky movements... After searching on the internet, we found a term called infantile spasms. Along with YOUTUBE, we watched videos of kids whose parents filmed their episodes. Our suspicions were confirmed after we compared the videos we took of Chloe too. We took her to a very good hospital in Manhattan. She was treated with ACTH and she responded immediately. After a few days, the episodes were less and less. After 8 weeks of treatment, she was spasm free. We were told that we have a year window that these spasms may return or may evolve into another form of seizure , thankfully it had not.

We started her with early intervention at 3months with OT and PT. She's now doing 4 days of each and 5 days of speech therapy. She recently has been able to roll over to her stomach with some assistance. She can sit for 2 minutes. Her right hand is fisted to this day, but we're still working on it hoping to get help from using hand splints.

This is the first time I've made it to a message board regarding my daughters' condition and I'm hoping to connect with other parents for support and advice regarding care and therapies. Also if there are activities that you find that works well for your kids also. I guess as a parent I feel like i need to know everything I can to help out my child.

I've contacted Theratogs for information, and I'd like to know if anyone is using their product to gain feedback.
I'm also curious about HBOT and botox therapy.

Thanks so much... I hope to truly find other parents that wouldn't mind exchanging and sharing information... :D

Posts: 2
Joined: Tue Aug 17, 2010 1:10 pm

Re: I'm new... looking to connect.

Postby Louis » Wed Aug 18, 2010 7:19 am

Hello Mary, my name is Louis and I am also new to this forum and to CP in general. I live in London and so the opportunities and treatments available for CP may well differ to those available to your daughter. However, I think that a swap of information between countries could be beneficial. My partner is from Sweden and she is now a regular on Swedish CP sites, so again, a transfer of information could be helpful and interesting to us all.

My little boy, Gunnar, has recently had his 1st birthday. Gunnar was a full term baby and he was induced on the due date and not because he was 2 weeks late, which is the norm here, because the midwife had got the due date wrong at the beginning of the pregnancy. Whether this initial mistake caused problems we will never know but my fiance Anna was in labour for 42 hours when the doctor noticed that oxygen and heart rate readings were declining and he made a decision for a C-Section birth to be carried out. Unfortunately a more senior doctor over-ruled that decision and a natural both progressed. The readings became weaker and weaker. This resulted in Gunnar being born without being able to breathe. He was grey in colour and several minutes went by before his lungs could be sucked clear. The clearing of the lungs caused one lung to collapse resulting in Gunnar's heart being pushed across his chest until a vent could be cut into his chest. Gunnar then spent 3 weeks in intensive care where he had regular fits that had to be controlled by phenobarbital as in Chloe's situation. Gunnar's fits eventually stopped and he was allowed home after learning to bottle feed. Thankfully he has had no fitting episodes since.

From very early on Anna and I noticed that Gunnar would have jerky movements and would 'jump' for no reason. The doctor at the hospital stated that he suspected that some sort of brain damage had occured during the birth and arranged an MRI scan. Unfortunately this took several months to be completed and so we only had an answer to Gunnar's problems when he was 10 months old. Gunnar has now been diagnosed with Dystonic Cerebral Palsy.

Gunnar has very poor control of his head and neck and cannot sit on his own. He also has problems with grabbing and holding things and is unable to transfer objects to his mouth or from hand to hand. Gunnar's toes often curl under his feet, he has trouble eating lumpy food and cannot say any meaningful words (although he likes to shout on a regular basis!). However, he smiles and laughs lots and is very aware and sociable around other children :-)

You mention that you are due to see a developmental pediatrician. We have had 3 appointments with such a doctor and whilst we feel he is competent we find it frustrating that he is not able to tell us specifics about the severity of CP with Gunnar. It really does seem to be a matter of 'time will tell' most of the time and we never get definate answers (something that seems to frustrate many parents). At the moment we are gaining advice from an occupational physiotherapist and we are awaiting an appoinment with speech and language. Annoyingly this all seems to be happening far too late and I feel that Gunnar would be in a better postion today if these services had been available earlier on. I see that Chloe had intervention from 3 months. Do you think that it has made a big difference to your daughter's condition today?

We are obviously interested in any alternative types of therapy that may help Gunnar. We are very interested in Conductive Threrapy at the moment. It apparently has a very good success rate. It is based on a method of interaction developed from a Hungarian therapy first used in the 1940's. We have spoken to Gunnar's doctors here and they have either not known anything about it (a situation I find strange and disturbing) or have been quite neutral of anything that is not recommended by our National Health Service. However, it seems that Conductive Therapy is well thought of in Sweden and so we are due to have an appointment with a UK based Conductive Therapy expert soon.

Anyway, good luck to you and your family and we hope that you have good news from the Developmental Paediatrician.

All the best, Louis, Anna & Gunnar.