Monday, February 9, 2009

Hypoplastic Thumb...what does that mean??!!??!!

Today we went and saw Dr. Kuz at the Michigan Hand Center. Ever since Jordan was born I have been bothered by the fact that her hands seemed strange. I wasn't sure exactly what it was but last summer it was mentioned by Dr. Torielly that she had extra fat pads on the palm of her hand. It wasn't a big deal, but it still didn't explain why her thumbs looked strange. Then a few weeks ago I had someone at Ken-O-Sha look at them and she recommended we see a specialist. Last week Lynn Fagerman and Dr. Koetsier both recommended we see Dr. Kuz and he had an opening today so we got in right away.

He examined her hands and then we had some x-rays done. After reviewing them, he diagnosed her with a Hypoplastic Thumb (Type II Blauth). That basically means her thumb is small and there are minor abnormalities in the muscles within the thumb. The joint of the thumb (metacarpophalangeal joint) is unstable causing the thumb to wobble. And the web space between the thumb and index finger is narrow and tight and restricts movement.

Dr. Kuz recommended reconstructive surgery to stabilize the joint, lengthen the webbing between the index finger and thumb and transfer a muscle from the pinkie to the thumb to allow for more thumb use and to cosmetically fix the appearance of the thumb. He said that he didn't think we needed to do it now but recommended we wait until she is around 4.

He said that this condition is usually caused by a lack of cell development. It can often be associated with several syndromes, but Jordan doesn't seem to have any noticeable symptoms that would lead us to any diagnosis. This information will be useful when we meet with the geneticist, Dr. Toriello in June as an additional diagnosis that she might be able to link to something.

Although Jordan doesn't have extreme difficulties with the use of her thumb, she does favor her left hand. We don't know if she is left handed or just finds it easier to use her left hand for certain tasks due to the small thumb on her right. He recommended we continue to work with her in therapy, encouraging her to use her right thumb and continue to develop the communication between her brain and thumb.

I am glad to finally have some more answers. Although this has not been a major concern, it has bothered me since she was born and I am relieved to understand the construction of her hand and know that there is an answer and solution.

Please continue to pray for Jordan and her development. She has started entering into her toddler behavior and is having several temper tantrums a day. This morning during therapy she got frustrated and bit my collarbone and it HURT!!! I looked later and she actually broke the skin!! She is frequently throwing herself around when she doesn't get her way or what she wants. This is made more difficult by her lack of communication skills. I continue to work with her on verbal sounds and sign language, but I don't see much improvement/advancement in either. She also has a tendency to bite herself (hands) out of frustration and throw herself around when she gets mad. I try to soothe her when she gets frustrated, but it is sometimes frustrating for me as well and I need to keep my cool. I guess I am somewhat unsure if I treat her the same as a "normal" child having a temper tantrum or in a special way because of her situation. I feel like I still have sooooo much left to learn!!

4 comments:

Mom McDee said...

Two way communication is what we all look forward too with little ones. I know this must be very challenging Karrie. I am praying for you to know the best way to handle Jordan's frustrations.

Her precious hands can grow so much yet. Waiting for surgery til 4 seems very reasonable.

Love you, Val

Janine said...

Karrie, I am praying for you all. I have seen children with communication difficulties bite, slap, and throw themselves. I know it can be very upsetting to watch. I am sure you have mentioned this to her therapists and doctors. Jordan is a joy and puzzle!

Unknown said...

It seems like I'm looking in the mirror. My son is currently 27 months and he too has hypoplasia of the thumb blauth II. From what i was reading in your blog he has the same symptoms. He also has major temper tantrums and bites his hands. I was searching online for information because he is going to have surgery soon and I ran into your blog. I was wondering if your daughter went through surgery and how was her prognosis. I hope your daughter is doing well.

Karrie said...

Jade,
Jordan has not yet had surgery - the doctor said that most likely he will do it this fall. We see him in August and he will determine if he feels it is a good time. I would love to chat more about this as I have no other connections to anyone with a child with similar features. Find me on facebook under Karrie Popa or email me at dkpopa@sbcglobal.net.