Welcome Spring…   |

Do you have any ‘Spring Rituals’? Send them to us and we’ll publish the results. Email them to: infantsol@yahoo.com

Information Overload ! ! !

By now you have probably been bombarded with information about PKS, your child’s health issues, development prognosis and therapies, home treatments, etc. Even from this newsletter you have been getting information to help you as an advocate for your child.

It is not uncommon to feel overwhelmed, anxious or even angry that so many people are telling you what you should or should not do with your child/for your child. Personally, I have had many days when I feel so overwhelmed I wonder if I’m even doing a good job as a mother, let alone a special needs mother. I have found that I can have all the information in the world but trying to use it could be disastrous.

The first thing I did was to set up a filing system for the medical papers, equipment papers, insurance information – anything that pertained to Dox and his care. I also began a calendar for his appointments, therapy sessions, etc. Just recently I started a Daytimer for phone numbers, ideas, meetings and whatever else that might come up that pertains to Dox and his care. This has helped in that I have all the information about him that I could possibly need but in an organized setting.

Secondly, I learned that no matter how much information/advice a person can give you about caring for your child, you are the one that is with them 24 hours a day, 7 days a week. In addition your special needs child, the other day to day matters will have to be dealt with as well. You learn to prioritize. Decide what is most important to deal with at any given moment. I structured a daily routine for Dox and me. I don’t always stick to it but I have a plan for trying to get Dox all the care he needs in addition to eating, bathing and changing diapers.

Another important matter is playing with your child. Since having Dox, it has become second nature for us to work his joints, stretch his muscles, work on sounds, etc. We do this just as innately as we breathe. After creating the daily routine, I decided that after 5 pm, no therapy or ‘structured’ time. It would just be me (or Dad) playing with Dox. They need that down time as much as we do.

Lastly, include your other family members in caring for your child. The more interaction our kids have with people other than doctors, parents, therapists and teachers the more their development will be enhanced. Even taking a walk around your neighborhood or going to a park will give them a sense of their world. Who knows, it may spark a progress in some area that you have been working on with them.

Take all the information you can get, use what is best for you and yours and file the rest.

- Pamela Fuller

Omega 3 Fatty Acids and PKS kids

A few months ago, I was given an article about the introduction of docosahexanoic acid and arachidonic acid (Omega 3 Fatty Acids) helping to build healthy nerve cells in the brain in infants. These acids are found in fish, chicken and eggs. I read it then put it aside.

A couple of weeks later there were reports in a support group for developmentally delayed children that stated their children were making significant strides in speech and gross motor skills due to taking Fish Oil, which is high in Omega 3 Fatty Acids. One of the posts read:

“Fish oil is thought to help lay down more myelin sheaths or the outer covering of neurons in the brains. Neurons conduct electrical impulses down a long tube much like an extension cord. Myelin is like the plastic outer covering the wires so that electricity (a) stays on course and doesn't jump ship and (b) makes the impulse glide faster down the neuron. There has been a lot of research about Omega Fatty Acids and Autism/Speech Delayed Children. People were reporting such fabulous results usually after only 10 ten days on fish oil capsules.  Fish oil has one of the highest concentrations of Omega3. Parents were noticing that suddenly there nonverbal child was suddenly talking (90% without any therapy) and the tantrums and other behaviors were improved  drastically. “

After checking with WebMD and Medline, I found no negative information in giving my son Fish Oil. So I went to the store, found the Fish Oil in liquid-cap form and bought it. I came home that day, pierced a capsule and gave to my son. It was not a good thing. He gagged and wouldn’t take anything by mouth for a couple of hours and he smelled like dead fish. The next dose I squeezed into his bottle with Strawberry flavored PediaSure. He drank it all.

Omega 3 Fatty Acids, cont’d

Within 2 weeks we were seeing an increase in his attention span, he started noticing himself in the mirror, began vocalizing quite regularly and seemed to be absorbing everything he heard, smelled, saw, etc. We gave him 850 mg, once per day.

The increase in his cognition was so great; Fish Oil is now a daily ritual. We are convinced that it did help in his skills growth. This is definitely something that needs to be addressed, especially with PKS, in the early months. If you have any questions, please email at: infantsol@yahoo.com

Andrea Colasanti’s site

http://www.pk-syndrome.org/

Online support group at Yahoo

http://groups.yahoo.com/group/pks_support/

Chromosome Deletion Outreach

http://www.chromodisorder.org/

UNIQUE

http://www.rarechromo.org/

Our Kids

http://www.our-kids.org/

For Parents and Caregivers of Children with Special Needs

http://www.specialchild.com/index.html

PKS Information

http://computerwhizzltd.tripod.com/dox/pks1987.htm

Dr. Lilli Nielsen, “The Little Room” creator

http://www.lilliworks.com/about_dr__lilli_nielsen.htm

The Disability Equip Register for UK

http://dspace.dial.pipex.com/town/square/ae208/

Web Sites of real PKS kids:

http://www.leona-ev.de/berichte/kerstin.html

http://doxiades.cjb.net

http://amberanderson.cjb.net

http://www.pk-syndrome.org/Phil.htm

http://www.pk-syndrome.org/cases.htm

Say hello to MaKayla! She is 26 months old. MaKayla was diagnosed with PKS at 12 months of age. She was born via C-section weighing in at 10 pounds, 2 ounces. When her mother first laid eyes on her, she knew something was wrong. Her eyes were wide set, her ears were angled weird, her nose just wasn't right and MaKayla's heart had a problem. She has had quite a few obstacles in her short life but now she is doing some walking, vocalizing some words and pretty much on track developmentally for a 26 month old. You can read more of MaKayla’s story at:

http://makaylacampbell.tripod.com/story.htm