Wednesday, July 28, 2010

When Your Kid Seems Different

When my son Baylor turned a year old, I scheduled him for his MMR shot as planned. I never worried about MMR imposing problems on Baylor but the link between MMR and autism became a major issue among doctors and parents during the time I was pregnant. I never thought twice about it, I just planned on getting Baylor his shots. Just like every other kid, Baylor had to have them to eventually get into school and to protect him in case some crazy outbreak occurred. After receiving the MMR shot, I noticed a difference in Baylor. Before, I had this mild, loving child that never threw tantrums. Now I have this wild, destructive, temper tantrum throwing rug rat that would cry at the drop of a hat. Baylor is not content to play by himself, whether he chooses not to or that his attention span is too short, he darts from one thing to the next, never focusing on one thing for more than 30 seconds (if I'm lucky). Coincidence?... maybe or maybe not?

After I noticed Baylor's change in temperament and attitude, I also noticed he was not meeting the developmental milestones for his age. Sure, I know everyone says, "well boys are usually more behind than girls" and "oh, don't worry, he'll get there", but it still didn't stop that voice in my head saying "Mom, somethings just not right". I also began to notice as well when I would call his name, he would not look at me. I would yell, bang on the tub, make as much noise as possible to get his attention and still could not get it. My friend Erin that watches Baylor privately in her home 3 days a week was also noticing the same things, but didn't not want to seem to pushy with me, so for the time being she kept quiet.

At 15 months we were off to the pediatrician with my supposed, overly protective concerns (according to my husband)... so I thought. A list of my concerns for Baylor I gave to the doctor:

  • hoards his food when he eats.
  • chokes very easily.
  • hits at his ears.
  • concerned with his hearing.
  • seems agitated.
  • not saying more than 2 words.
  • not gaining weight (he was in the -5th percentile)
  • not pointing to what he wants.

My doctors response: "I'm not going to worry until he's 18 months". My response "okay"... well he wasn't worried, why should I be, right? He did check in his ears but said his ear canals were so small it was hard to see so he didn't feel anything was going on with his ears. So at 16 months Baylor was sick and we ended up back at the pediatrician and I went over the same list of concerns and the doctor rechecked his ears. Yet again, his response was "I'm not going to worry until he's 18 months". This time I said okay when I really didn't feel okay and just left. My friend Erin continued to have all the problems I was having with Baylor at home, but they seemed to be getting worse. She didn't say anything for a couple of weeks because she didn't want to be overly pushy but it got to a point to where she was really concerned for Baylor. It had actually gotten so extreme that she didn't know if she was the best fit for Baylor anymore. She told me about "Early Steps" which is a state funded program (in every state) that provides children with in home therapy until age 3, for free, regardless of their parents income. I told her I would think about looking into it soon because I wasn't getting anywhere with Baylor's pediatrician. I went home that evening and after I laid Baylor down for bed, I climbed into bed with my new issue of Parent's magazine. As I was reading I came along an article entitled: "When Your Kid Seems Different". As I continued to read this very intriguing, sadly similar stories in this article, I felt this light shine down from above and I felt like someone slapped me across the head! DUH! The article had a list of websites where you could find early intervention programs in each state. According to the article, there are millions of baby's and toddlers whose delays or disabilities are initially overlooked or dismissed by their doctor. I knew then, Baylor was not going to be one of those babies. To view the article, click here. The next day I contacted Early Steps in Louisiana and had an appointment with a evaluator to come see Baylor and she even came to our home! I sat down with Melissa Waddell and discussed what was going on with Baylor. She set up a Speech/Special Instructor named Brenda to come out and evaluate Baylor. When Brenda came to evaluate Baylor, he was his typical self: running around, yelling, playing but very affectionate towards her as he always is with anyone. She went through several test with Baylor to determine what types of therapy he would need. I had the option of having Baylor tested for autism. Brenda was up front and told me she was sure he would test positive because of his major delay in speech. It would not necessarily mean he has autism and he was still a little young to test. She recommended me to wait to have him retested when he was 2 and after he had shown some hopeful improvement with therapy. So I declined the test knowing that if I had it done and he tested positive, it would give me a new set of worries until he turned 2. Now I have to admit I still worry about autism because of the MMR shots and my brother having a high functioning type of autism call Asperger's. I see alot of my brother in some of the things my son does and honestly it scares me. It doesn't scare me because I wouldn't know how to handle a child with Aspergers, it scares me because I know first hand how others would make fun and pick because he acted differently. I don't want that for my son as a mother, because as I sister I didn't want it for my brother growing up either. Another major concern of Brenda's was Baylor's hearing. She would ring a bell for 2 or 3 minutes straight and Baylor would not even turn his attention away from what he was doing to find it. She would call his name but he would not look or respond. We sat up hearing test first thing.

When we went for the hearing test, it was a major flop. They told me they had to check his ears before the screening and if he had wax or fluid, they would not be able to do it. Of course he had wax in his ear but couldn't see fluid. They were able to do one screening where Baylor sat in my lap, in a booth and she would try to get his attention by turning on speakers with different decibel levels in each corner. Naturally he didn't respond to what most kids hear and she had to crank it up a notch for him to notice it. So now we planned a sedated hearing test which was traumatically terrifying for me to even think of. The hospital told me they would be able to preform the test no matter what was in his ears. The appointment was made and I was given instructions to make sure he was sleep deprived by waking him at 4 A.M. and keeping him awake until the test time of 10 A.M. and he was not allowed to have food or drink 2 hours prior to testing. Great, I'm thinking "do you know what it's like to wake a toddler at 4 A.M., keep him awake for 6 hours, then withhold food and drinks from him?". I thought " there is no way I will make it through the day with him" , with him being sleep deprived, plus my fear of how Baylor would react to the sedation.

Everyday, Erin and I would discuss Baylor. Over several weeks, we discussed his tongue... yes, his tongue. We both noticed Baylor would not stick out his tongue and when he attempted to, it wouldn't go any further than his teeth. Baylor could not spit food out. Only the few times he attempted to, he would open his mouth and put his head down for the food to attempt to roll off his tongue. Erin did some research and did find something on toddlers being "tongue tied" which occurs because the lingual frenulum (flap of muscle that attaches your tongue to the bottom floor of your mouth) is too short. Then I thought, maybe this is affecting his eating and speech? So I hesitantly picked up the phone and called my pediatrician's nurse. When we talked, I explained about Baylor's tongue and everything that has happened with his therapy and hearing. They referred me out to a pediatric surgeon and also recommended me to get his hearing checked (oh, so now he is worried I thought).

We were referred by a close friend to her ENT who could do exactly what the pediatric surgeon would do with Baylor. I felt better going to the ENT, knowing I had a few friends that currently see him with their children. When we arrived at the appointment, we met Dr. Boone who went over my concerns about his tongue and I talked to him about his hearing (I figured I would get my money's worth out of this visit!). He checked Baylor's tongue and did say it was a little tight but was stretching some as he grew and it should not be the cause of his speech delay. Then we tackled the ears and Baylor for that matter, for this is the part he hates the most. Dr. Boone saw Baylor's ear canals were super small and he wanted to run more test to make sure there wasn't something he couldn't see, like fluid behind his eardrums. We walked down the hall to have pictures of Baylor's ears made. After we finished that, we went back down the hall to see Dr. Boone again. I am thankful Dr. Boone took the extra step that no one else would to find out that Baylor had fluid behind both his eardrums which was majorly affecting his hearing and speech! I began to cry and said, "Hallelujah, I finally have an answer to something"! He started Baylor on a round of antibiotics and Nasonex and will see him back in 1 month. If the fluid is cleared up, he will preform his own hearing test and if not, we will talk about tubes for Baylor's itty bitty ears. He told me to cancel the sedated hearing test, there was not need to put him through that and they wouldn't be able to do it anyways because he had fluid behind his ears. This is not what the hospital told me, they told me they could preform it no matter what! How mad would I have been if I had to put my child through that to find out they couldn't do it because he had fluid behind his ears? I'll tell you, I would have been highly upset!

The week before Baylor went to the ENT, his speech therapist Mrs. Megan started on Friday. I knew from the moment I met her she was going to be wonderful with Baylor; he saw her and reached his arms out for her to hold him the first time he ever met her and gave her a big hug! The first day she worked on his eating and could tell he has some sensory issues going on in his mouth. He did exactly what I expected him to do: put up a fight, cry, hoard his food and not spit it out. But Megan was great, very patient with my little man and when they finished eating, she played with him for a little while. Then Megan pulled out a sucker and got Baylor to stick his tongue all the way out to lick it! I was so excited because Erin and I both have never been able to get him to do this. She still wanted me to take him to the ENT to have it evaluated on Monday just to make sure. Megan had me call her when we left the ENT to let her know what he said. She was glad to know his tongue was not a major issue, which she expected. She now knows how to base Baylor's therapy until we get his ears back in hearing order. She is coming back again this Friday (and every Friday for that matter) to work with Baylor and I couldn't be happier to have her... she is wonderful!

Erin continues to watch Baylor seeing that he is improving and has taken more to her in the last 2 months. Before, he did not seem to care for Erin or want anything to do with her, he just did his own thing while he was at her house. Now, he has to give her "love" when he leaves her house everyday that I pick him up. She is working with him as much as I am and she is another person I am grateful for everyday. Erin is so great with Baylor and I don't know what I would do without her. She is the person that gave me that extra "push" to listen the voice of concern in my head and start looking for help with Baylor.

Not knowing what is going on with your child is frustrating for a mother, especially when you suspect it but have a hard time getting any one to confirm it. I strongly urge any mother that has that same voice in her head to speak with her child's pediatrician. If you don't get the confirmation you seek, keep pushing it or seek a 2nd opinion. Only a mother knows what her child does not, or cannot say. Trust your motherly instinct, that's why you have one! On an ending note, do I think the MMR shot had an effect on Baylor? Possibly...maybe... not sure, I don't know what to think right now. Time will only tell as he gets older and goes through his therapy. Do I think his hearing and lack of speech is the cause of his tantrums and speech problems?... yes, I do and I pray it is the only thing causing it and not something lying deeper that I am unable to see at this time. I know I would get upset and throw tantrums if I couldn't tell my mother what I wanted and everything I heard was muffled, like being in a tunnel! No wonder my baby is so frustrated and my heart really goes out to him. I am trying to work on communication skills with Baylor now because of his hearing. I try to make eye contact with him if at all possible, speak a little louder in a deeper tone and make hand gestures to get my point across to him. It seems to help at times and others, he seems to care less. Is my kid different? No, he is unique in his own way. Plus, who wants their kid to be like any other kid? Now knowing what is going on with his ears and getting that fixed, along with his speech therapy, I know Baylor will be making improvements in the next few months. I don't know what his outcome will be, but I do know that no matter what it is, I will love him all the same!

1 comment: