Friday, September 18, 2009

Ahren


When Ahren first came home he was 2 years and 9 months old but was still very much a baby.  He still took a bottle every 4 hours. He had not started potty training. He didn't say many words (in spanish or english) and he still seemed babyish in many ways. I didn't mind, I got to enjoy that last little bit of babyhood after having missed so much of his life.

But there was more to it than just baby-ish-ness. (I made a new word!) He had very poor muscle tone. The foster mother had been worried about him walking so late (22 months) and falling constantly and they had taken him to an orthopedist. The ortho put him into special orthotic boots to stabilize his feet and ankles. Those helped but still, there was more to it.
I took him to an ortho here and he was very concerned. He said he had never seen a child with so little muscle tone. His little legs would just flop all over and you could literally wrap them around his head with no problem. We started working with him every day to build muscles and fed him a diet high in protein. 
In three months he grew almost 4 inches, began to gain many more skills involving his large muscles and the ortho thought he was looking great. The improvement was amazing. The doctors orders were to keep up the good work and he would see us in a year. 

We saw his regular doctor the other day (who has also been following Ahren closely) to get his flu shot and I mentioned some things that I have noticed. Here is what I mentioned to the doctor.

1) He drools all the time and seems to have trouble chewing and swallowing.
2) He has been having trouble getting out of bed and when he first gets up he walks with a very stiff-legged frankenstein like movement. 
3) He has been falling down a lot, even when just standing still

The doctor got an odd look on his face, and then he said something that hit me like a punch in the gut. He said we need to test him for muscular dystrophy. I think he said some other things after that, but the odd buzzing in my head drowned it out. We now have an appointment in 10 days for a complete work-up.  Genetic testing, blood work, and whatever else they can think of. And then we wait for a few weeks for the results. 

I am concerned but not freaking out. Yet. My mother's intuition tells me there is something going on. He is almost 4 years old and he falls down trying to pee in the potty. He has a funny, awkward gait when he runs. He drools like a teething baby. I guess the thing that made me begin to think there might be something going on is that these things had gotten better but are now getting worse. All along I had thought he was just behind in development because he was never allowed down on the ground and the foster family did everything for him. But they had also been concerned, so even back then they thought there was something wrong. 

It's going to be a really long few weeks. 


  

16 comments:

Angie said...

Please let us know when you findout more. Will be praying in the meantime.

Diana said...

Wow! Didn't see that one coming. Hopefully they can find out what is really going on so they can help your adorable little man.

Mamita J said...

Oh Wendy...

Praying for you and your little man.

That's a kick in the gut.

Heavenly Father,
Today I lift up Ahren to You. You created him and You know everything about him. I pray You would give the doctors wisdom and knowledge to understand what is going on. I pray the tests would be accurate and that they get to the bottom of this. Lord, as Wendy waits out these few weeks, I pray that You would hold her close and calm her nerves. I pray that You would give her strength and encouragement. May You be in this. Please take care of little Ahren. In Jesus name. Amen.

Much love,
Julie

ManyBlessings said...

Oh Wendy...please know I will be praying. Love that little guy!

Essie the Accidental Mommy said...

Oh geeeeeez, what a hard thing! I hope it is that he is still catching up. I can tell you this though, Genea has similar problems and she is 6. Her mouth hangs open much of the time and her tongue protrudes. She is doing better with that and we remind her as well, she can control it when she knows to. She has an awkward gait as well and will trip over the flowers in the carpeting especially when she is stressed, and often toe-walks. Come to think of it, she is also very stiff when she first wakes up. She is very stiff when she sleeps, and if I need to move her when she is sleeping sometimes her body stays in the shape even while I am moving her, like it is frozen.
Maybe I should take her to the doctor! I was chalking it up to slow/ delayed physical development combined with ultra-rapid growth (11 inches in 12 months!). She has had tons of medical testing done though, from when she had Failure To Thrive. Nothing was found then.
Please keep us updated!

Anonymous said...

I was looking up excessive drooling, which my Gautemalan daughter does she's two, and I came across this:
Google Hypotonia - I lost the page link:

Hypotonia - Overview
Overview
Treatment
All Information
Alternative Names
Decreased muscle tone; Floppy infant

Definition of Hypotonia:
Hypotonia is decreased muscle tone.

Considerations:
Hypotonia is often a sign of a worrisome problem. It may be a sign of a central nervous system problem, genetic disorder, or muscle disorder.

It can affect children or adults.

Infants with hypotonia seem floppy and feel like a "rag doll" does when held. They rest with their elbows and knees loosely extended, while infants with normal tone tend to have flexed elbows and knees. Head control may be poor or absent, with the head falling to the side, backward, or forward.

Infants with normal tone can be lifted with the parent's hands placed under the armpits, while hypotonic infants tend to slip between the hands as the infant's arms rise unresistingly upward.

Common Causes:
Achondroplasia
Aicardi syndrome
Canavan disease
Congenital hypothyroidism
Congenital cerebellar ataxia
Down syndrome
Familial dysautonomia (Riley-Day syndrome)
Hypervitaminosis
Infant botulism
Kernicterus (brain damage due to severe jaundice)
Klinefelter syndrome
Krabbe disease
Marfan syndrome
Menkes syndrome
Metachromatic leukodystrophy
Methylmalonic acidemia
Muscular dystrophy
Myasthenia gravis
Myotonic dystrophy (a type of muscular dystrophy)
Phelan-McDermid syndrome (Deletion 22q13 syndrome)
Prader-Willi syndrome
Rickets
Sepsis
Spinal muscular atrophy type 1 (Werdnig- Hoffman)
Tay-Sachs disease
Trisomy 13
Vaccine reaction

Hypotonia


Central nervous system

Reviewed last on: 11/9/2007
Deirdre O’Reilly, M.D., M.P.H., Neonatologist, Division of Newborn Medicine, Children’s Hospital Boston and Instructor in Pediatrics, Harvard Medical School, Boston, Massachusetts.
References
Yeh PC, Kipp MA. A case of Moebius syndrome in association with Klinefelter syndrome. Ophthalmic Genet. 2002 Sep;23(3):185-9.

The information provided herein should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed medical professional should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Links to other sites are provided for information only -- they do not constitute endorsements of those other sites. © 1997- 2009 A.D.A.M., Inc. Any duplication or distribution of the information contained herein is strictly prohibited.

Melissa

Anonymous said...

I found the link:

http://www.umm.edu/ency/article/003298.htm

Deb said...

Wendy-

I am certainly praying for Ahren and you. What a long wait to have the testing done.

Love and hugs,
Deb

Ellie said...

(((((((((HUGS)))))))))))

From a mommy of a Perfect baby to another mommy of a Perfect baby...

Perfectness is in the eye of the beholder...

I see nothing but Perfectness, with a little attitude...

Hang in there, you have my number if you want to talk... I know these few weeks will be like a lifetime...

Trust me I know... I had to wait 6 weeks for results from a blood test Angelena took in May. 6 very long weeks... To find out, I have a perfect little girl, with perfect little flaws that I wouldn't change for anything....

HUGS
LUV U

Ellie.

sarah bess said...

I'm so sorry to hear that, Wendy. Does he have tremor? Wondering about ataxic CP. :( But praying it's absolutely nothing and that the progress you've made with him just continues to resolve all his issues. Hugs.

Wendy said...

Melissa, Thanks for the info. We had already ruled out a lot of the issues mentioned in that article. The doctor had been leaning towards very mild CP but the drooling and other things are adding a twist to the picture. I am still holding out that he is just a quirky little guy!

Leah and Maya said...

thinking of you. maya laso had not mauscle tone trunk control and didn't sit up, butI moved down to foster her when she was 9 months old so things got turned around. Do you know Natalie? She is friends with Candy. I dont' knwo about the gait problem now but Caleb had so many of the same problems you have mentioned. I met natalie and Caleb on a visit trip, iam almost positive you all know eachother but I get everybodys blogs confused sometimes.

URBAN BLONDE said...

Thinking of your wonderful family and hoping you get some answers for that adorable cutie soon!

I'm wondering like someone else mentioned here about Ataxic CP? I

'm just thinking because he is a larger boy, if his bio mother experienced a difficult birth? When I was a special needs teacher, I had a wonderful little boy in my group for a couple of years who had Ataxic CP and Ahren's symptoms seem spot on to his. This little guy had non-stop drooling but work with the Children's hospital mobile team worked wonders to give him more control.

There was certainly nothing affecting his mental faculties and what he couldn't accomplish physically he had quickly learned he could charm his way through anything. (He was really good at getting others to do and get things for him! ;) )

Sending you lots of strength as you search for answers, the stress is the hardest thing to handle when you're a parent and one of your kids is not well.

Overall I just hope you get some definitive answers!

Take care!

Julie said...

Praying for you & Ahren. I wish I could do more...

Wendy said...

Hmmm, Ataxic CP does seem to fit much better. He is definitely a smart little cookie and he does charm everyone into doing things for him. I don't have a lot of info about his birth other than he was child #11, no prenatal care and weighed just over 5 pounds at birth. The increased difficulties could easily have to do with his tremendous growth this year. His muscles just need more time to catch up to his body. Did I mention he has grown 6 inches in one year?

Kelley said...

Wow! Ahren seems like he has a lot in common with my son. Aidan is 2 and was just diagnosed with Hypotonia. He also drools and toe walks 90% of the time. He often falls and constantly has boo boos. We start physical therapy in October. I was worried about CP but the neurologist ruled that out. Aidan is also adopted and had no prenatal care. I will be interested to see what Ahrens doctor says.