New Here and wondering about affects on the whole family

3 comments to New Here and wondering about affects on the whole family

• mokaalab

  January 4th, 2010 at 4:16 pm

  To New Here and wondering about affects on the whole family….
  There are many different levels of outcome with Dandy Walker, my daughter has the variant form as well which is not as severe but she also has the third and lateral ventricles enlarged which usually does not get classified as a variant form. She is delayed but if you were not a child expert or in the medical field it would not be apparent right away. She is 3 1/2 years old now. What I would recommend that you do at this point of your pregnancy is to find out about the Early Intervention Services available to you in your state. These are programs for children birth to 3 years of age that have developmental delays. Usually these programs can have a physical therapist, speech therapist, developmental interventionists, or occupational therapist come to your home or even to a daycare setting to perform therapy. Some of the therapist will come in the evening as well. Their main objective is to teach you or the main caregiver skills to be working with the child everyday. He or she may not need all of these services or may need the services at different times. For example, speech may not start until 6 months unless they have feeding issues prior to that. Unfortunately, some of this is a watch and wait to see what they can do. One physician told me that the structure of the brain does not always determine function of the brain. This was very comforting because although her MRI looked bad, she really is able to function quite well. She talks, walks, runs, interacts with everyone and is a real delight. Seeing her MRI, you would wonder how in the world. Once they turn 3, the public school system then evaluates whether there are delays that would effect their ability to learn and would then qualify them for preschool services. My daughter qualified for speech therapy but did not for cognitive delay although she was bottom of the normal. I am sure as a teacher you are aware of the IEP’s and special ed services available. I think the first year is going to be the toughest one for the family if they do require services for developmental delays. I would take your time and recommend not making any big decisions about work right now. See if services can be available in the evening or if a grandparent or friend can provide day care for the child then therapy can be given with them and they can pass along information to you about the stategies or progress made. I know that you will see in the literature that many people have had Dandy Walker Variant and no one ever knew it. In fact, my daughter wasn’t diagnosed until she was almost two. We adopted her so I don’t think the biological mother received much prenatal care and it was not known during her pregnancy. When she was born, they thought that she had fetal alcohol syndrome which may still be part of her delays. She also has some chromosome abnormalities linked to a duplication of 8p and deletion in 14Q. They do not know if these are linked to DW or not. My daughter was also fortunate and did not require a shunt. I wish you the best, please keep posting and if you have any other questions, I certainly don’t mind sharing my experience.

• BestPit

  January 4th, 2010 at 10:05 pm

  I think that is one of the things that scares me the most. I am an early childhood specialist with a Master’s degree in Education. I guess knowing how the systems work and what to expect from teachers…me being one…worries me. Right now I think it is the fourth ventricle that is enlarged. I feel guilty hoping that this will resolve itself. What you have share is pretty much what I have been seeing as the norm. Do you still work? What is the level of care you need to provide? Is your daughter able to interact with peers of her own age? How are her social skills? Thank you for sharing and taking time to answer my questions.

• mokaalab

  January 5th, 2010 at 1:45 pm

  I am a pediatric nurse. I quit working about a year in a half ago. I have 4 children ages 13 down to 3 years of age. When I had taken a part time job from my full time position, we had to put Abby in a daycare. Previously, my mom kept her while I was her foster mother prior to us adopting her. My mom did a wonderful job helping me to stimulate her. I knew she was somewhat delayed but we thought it was from fetal alcohol syndrome and not DW. She was always about 3 to 5 months behind those first couple of years. My other children walked at 9 months and then to have a child that barely sat up at that time was difficult. Her pediatrician at the time kept saying she is fine. I kept saying something is wrong. He is no longer her pediatrician. Anyway, after she went to daycare, she kept getting sick, we went through 14 rounds of antibiotics for sinus infections, 5 rounds of steriods for croup, and she even had pneumonia. Also during this time, her stomach would swell up to the point she would lose her balance. Finally, the pediatrician sent her to ped GI and ENT and they ordered a head CT of her sinuses and CT of her stomach. This is when we found out that she only had one kidney and that her ventricles were enlarged. She was then sent to a neurosurgeon to evaluate whether she needed a shunt or not. She did not end up needing a shunt. At this point, I was running to every doctor with her trying to figure out what exactly was wrong and felt it would be best not to have her in daycare. I decided at that point that I could stay home with my four kids and could also foster other medically fragile children. I love being able to still use my nursing skills and be able to help other children and take care of my own kids. I do think that it is possible for me to work with her other than the daycare. I still worry that she will catch everything. She just seems to be a bit more fragile that my other kids. She has done well with preschool which is probably because she is alittle older at this time and her immunity is a little stronger. She did end up having her adenoids removed and has done quite well with her sinuses since then. Her stomach swelling we found out was just from her swallowing air. It is called aerophagia. Still does so but not as bad. I think since her cerebellum is smaller than normal, it contributed to her balance issues. If you bump into her, she is still likely to fall easily. She does interact fine with her peers. She can be alittle agressive at times (biting, pinching sort of stuff). I am not sure if that is her red hair temper or from Fetal alcohol or DW. I have heard some kids do have behavioral issues. I definitely do not think that it interfers much. I don’t get calls from her preschool teacher about it. Her teacher has seen some aggressive behavior but knows who she needs to stay away from. Overall she is very loving just extremely stubborn like most 3 year olds. The only therapy that Abby ever received professionally is speech. I worked with her alot on motor skills. She would get it, it just took her a little longer. She always seemed to not qualify for services because she wasn’t quite the 2 standard deviations. Today, she runs, plays games, makes jokes, loves school, talks up a storm (has large vocabulary), lets us know what she likes, doesn’t like, etc. Again it takes her a little longer like learning colors, we have to go over it and over it but when it finally clicks to that long term memory, she has it. She knows most of her colors now, can count to 13, understands more concept ideas. My husband and I ofter look at each other after she says something clever and go “she’s going to be okay”. We do feel at this point that she will become an independent individual. I do still worry about those harder skills as she gets older but for the most part she does finally catch on. We just have to be patient with her. I hope this information helps. I wouldn’t make any quick decisions on your career. Sometimes, it is also helpful for you to have your foot in the door at school so you can see what’s going on and advocate for your child. No one is going to do as much for your child as you but those of us with big voices often do get heard and accomplish much more for our kids. Honestly, it is possible that your child will not need any services and could function quite typically. Keep in touch.

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