Wednesday, May 11, 2011

Williams Syndrome Awareness Day 4: Belly Aches and Other Ailments


Earlier this week, I wrote about various heart problems associated with Williams syndrome (WS). Unfortunately,  people with WS are often affected by other serious health complications.

Hypercalcemia (elevated blood calcium levels) and kidney abnormalities are common as are digestive problems and muscle tone. Children with WS are born smaller than most other children and are much slower to gain weight and they often have low muscle tone. They must be plotted on a separate growth chart. Hearing and vision problems can develop over time. Sleep problems are almost universal. Additionally, individuals with WS are slightly more likely than the general population to suffer from epilepsy and some struggle with anxiety and attention deficit disorder. One other significant concern is that anesthesia presents serious risks for people with WS.


We are very fortunate that Bean is relatively healthy. His calcium levels are slightly elevated, even on a dairy free diet, but he does not require treatment at this time. We suspect that he has oversensitive hearing and he is mildly far-sighted. He has mild-moderate low tone but responds very well to physical therapy. He has not shown signs of epilepsy and he is too young to evaluate for anxiety or attention deficit disorder. He has had two procedures that required general anesthesia (both before his diagnosis) - head/neck MRI and an upper endoscope with biopsies - and did great with the anesthesia with the exception of being very irritable when he "came to."

Bean was born small (5 lbs 15 oz). He was 3 weeks early and has been very slow to gain weight. He is 20 months old and weighs 21 lbs now - that means that he is not on the "typical" growth chart at all. He has pretty intense feeding issues but he is maintaining his weight and places around the mean on the WS growth chart.

His most challenging health problems have been related to his digestive system. He was born with and continues to struggle with silent reflux. This has contributed greatly to his severe sleep problems. We finally seem to have him on a good combination/dosages of medication. That combined with melatonin has improved his sleep a bit. Bean also has a hiatal hernia, pretty bad constipation and suspected delayed gastric emptying as well as multiple food protein intolerances (intestinal troubles with digesting different foods). We finally have these issues under control. He and I have been free of the top 8 (dairy, soy, wheat, peanuts, tree nuts, fish, shell fish, eggs) + gluten since his birth and just recently started adding some foods in to our diet. So far, we passed almonds and are in the middle of an (almost successful) egg trial right now. 

Bean has been dealing with these health complications since birth and it was honestly a relief when we got his diagnosis in February. It explained everything.

We are very lucky that he has so few (and mild!) problems. Others have much more serious health concerns. These are not just taxing emotionally and physically, these problems can become very expensive with endless doctor and therapy appointments. Tomorrow, I will write about some of the resources available to WS families. Thanks for following along!

4 comments:

  1. I read these lists and picture my own children's faces... what would I do if I were dealing with this? I have no idea. What I do know is that little Bean is very lucky he picked an awesome mama.

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  2. so glad to find your blog!! I am learning so much about Williams Syndrome...Happy awareness week! so happy to meet Bean!! he is a cutie...cannot wait to watch him grow...smiles

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  3. We just had blood drawn for the FISH test. I don't have a great feeling about the likely outcome because he has sooo many of the symptoms. One thing he does not seem to have though, is low weight. He was born low (c-section) but is about the 60th percentile now. And he is in the to percentile on length. Still, he is very good natured, is on prylosac due to vomiting (has cured the problem), has poor fine motor skills, has a senstive gag reflex (part behavioral as he occasionally gags without any food in his mouth), adorable button nose, beautiful smile; poor tone, gapped top teeth, not walking (at 14 months), not talking, ankles do not support his weight and other things going on as well.

    Fortunately we have been getting feeding, OT, PT and speech earl intervention. I hate to tell them that he HAS WS as he was not diagnosed with such...neurologist only asked that we get the test without telling us what it is....I just googled the test number and everything started to click.

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  4. I am a student in high school and I'm doing a report on williams syndrome i was wondering if i could respecfully ask you a few questions?

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