The wild Goose Chase

 

About a month ago I noticed that Hailey had begun turning her right foot inward as she walked. This was very inconsistent, so I decided just to watch and see how things went. Later that same week I decided we would get out and ride the bike she had gotten for her birthday. I quickly realized that she did not have the leg strength to peddle. SIGH! I tried not to cry, but it was very overwhelming to realize that Hailey had yet another battle to overcome. She will overcome, She ALWAYS does.

After I made this discovery, I started to ask others what they thought. I guess I should quit doing that, because I got so many different opinions that I started to doubt myself. Well, the doubt was gone when a friend of mine, whom I had not said anything to, asked what was wrong with Hailey’s leg. I knew then that I had to make an appointment.

I called the Neurosurgeon, who said to call the Pediatrician, who said to call the Neurosurgeon. And so the story goes when you are dealing with Chiari/Syringomyilea. We did end up going to the Ped. who looked Hailey over and acknowledged that she was weaker in her right leg. All that did was lead to more questions, and more tests. She is referring Hailey to have a MRI/CT scan. If there are any changes in that she will send us back to the Neurosurgeon.   She is also sending Hailey to get a Physical Therapy Evaluation done. Basically she thinks it’s due to the Chiari. and our NS doesn’t think anything could ever be related to the Chiari.

Just so we are clear I am going to list the most common symptoms of Chiari. and Syringomyelia. After you read them, you make your decision.

Chriari Malformation

• Neck pain (running down the shoulders at times) 
• Unsteady gait (problems with balance)
• Poor hand coordination (fine motor skills)
• Numbness and tingling of the hands and feet
• Dizziness
• Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
• Vision problems (blurred or double vision)
• Slurred speech

Less often, people with Chiari malformation may experience:

• Ringing or buzzing in the ears (tinnitus)
• Poor bladder control
• Chest pain, in a band-like pattern around the chest
• Curvature of the spine (scoliosis) related to spinal cord impairment
• Abnormal breathing — specifically, sleep apnea, characterized by periods of breathing cessation during sleep

Syringomyelia

• Muscle weakness and wasting (atrophy)
• Loss of reflexes
• Loss of sensitivity to pain and temperature

Other signs and symptoms of syringomyelia may include:

• Stiffness in your back, shoulders, arms and legs
• Pain in your neck, arms and back
• Bowel and bladder function problems
• Muscle weakness and spasms in your legs
• Facial pain or numbness
• Spinal curvature (scoliosis)

Has it been that long?

Wow! I just realized how long it has been since I posted anything on this blog. I guess you could say that things have been more than a little but crazy.

Hailey had her follow up MRI, and we got the results Dec. 2. Everything looks great. Her Syrinx is still there, and it’s the same size, but it has not grown any, and that’s great! Hailey has had only one headache since we got her home, and that was because of her little brother. She also seems to be balancing better. The surgery has really seemed to help her those area’s, and for that I am glad.

Hailey’s time in the hospital is still fresh on her mind. She talks about it frequently, and with anyone who will listen. She is still bothered by her scars, and tries to show them to people even though her hair is growing back. I am really hoping that her anxiety about all that happened this summer will end soon. I feel helpless, and don’t know how to help her process it all.

Hailey is a big sister again. Liam Andrew was born Nov. 2. 2010. She is so good with him. Even as I type she is bouncing him and keeping him happy.

That’s about all I have for now. I am working on several posts. Some may back track a bit, but that’s ok. Now that I am back in the swing of things, I should be able to get them up.

Field of Angels

 

(long post, but worth the read)

If you have a child with special needs, whether it be medical needs, or mental health needs, you know the reality of your child being left out of activities. Now I am all for inclusion, but sometimes that is not a reality.

Take baseball for instance; Sure they will let your child on the team if they have ADHD, or even mild Autism. Some teams will have children in wheelchairs. But what is the reality of that child truly being included? They get to bat (because the league requires it), They may even play one inning in the field, but most of the game they are on the bench. It’s really hard for parents as well. That’s something only a parent of a SN child would understand. It’s so hard as the parent to fight ALL of the time for inclusion for your child.

Hailey has always wanted to play sports. We have tried several.  Though they were fun for her at times. They also presented challenges. Well, seeing as how she had 5 brain surgeries this summer, I was not planning to have her in any sports. The accommodations would just be overwhelming, and I didn’t feel like having her stared at and treated differently.

Last week I was told about a special needs Baseball league that was starting called, Field of Angel’s. I gathered all of the information, and reluctantly signed her up. I’ll be honest, I had no idea what to expect, and I was concerned that this would draw even more attention to the fact that she was different.

I was pleasantly surprised when we arrived at practice. She was accepted as part of the group right away. There were all types of children, with all types of diagnoses’. Hailey made friends immediately. Each child had a “Buddy” to assist them as little or as much as needed. There was no attention brought to the SN of the children. They were all treated just like any other child. Practice went like any other practice.

So what was the difference? Each child was given a fair chance to be successful,  Each child received the individual help that they needed, There was cheering and encouragement the whole time, If a child needed a break they took one, and nobody thought anything about it. They all got hit’s, They all got to play, they all made it to home plate! If they sat down in the field, it was OK, and nobody looked at the parent and wondered why their child wouldn’t cooperate. The parents were all understanding of each other, and therefore friendships could be made.

Saturday was their first game. It was set up like any other baseball game. the field was lined, the Fan’s were there, and the games went smoothly. It was the most amazing thing i have ever been apart of. Just look at the pictures and decide for yourself.

All I can say is that I was in tears the whole game. this league is truly amazing, and God given. I wish there were more things like this out there.

Surgery

It's official, Hailey will have decompression surgery June 2. We haven't really explained it all to her yet, but we know she will handle the news OK.

Neurosugeon Update

This past Monday we headed down to Vanderbilt to See a Neurosurgeon. We were excited and scared all at the same time. By the time we got there the what ifs had taken over. You know, What if he doesn't know what he's talking about, what if he doesn't listen to us, what if he says she needs surgery, what if they blow us off yet again? So we developed a plan of defense before we ever walked through the door. If they still had not corrected Hailey's name in their files, I was going to ask to speak to the office manager, If a student Dr. came in my Husband was going to tell him that we would prefer to speak with a "Real" Dr., and if they sent in any Dr. other than Dr. Tulipan I was going to demand to see him and write a nasty letter to the review board. (history. The last time we went there they sent in a different Dr. than the one we made an appointment with.



We went in and they ha not changed her name. So our plan went into action. Hopefully that is taken care of now. As we sat in the waiting room I was pleased as i watched all of the kids having fun. They were coloring and talking with each other. Hailey made a friend. I could tell right off that he had ADHD. Maybe that's why they bonded so quickly. They sat and talked. and talked, and talked. It was great! I also met a Lady who's 3 year old son had brain damage from a home accident. When he was two he pulled the pen out of a trailers door and it fell on top of him. His story of survival was amazing. I was able to talk with her about early interventions, and we will now be corresponding through e-mail. It was a much different waiting room experience than we have ever had. (we are in then ALL the time)



We were finally called back. As we sat in the room I went over our questions and asked Hailey if she had any. As you can see she was beaming from the friend she had met so getting her to focus was out of the question. Dr. Tulipan cam in. There was a student Dr. but he just stayed in the background, so our plan was not needed. We did have a bump in the road because I had forgotten to bring her scans with me. But he talked to us about Chiari and her Syrinx anyways. We were very comfortable with the information we received. Based on the radiologists report he did suggest surgery. He is going to call us when he reviews the scans so that he can have a better view and then we will know for sure weather or not surgery is in the plan. He said that anytime there is a syrinx of significant size he suggests decompression surgery. He gave us all of the facts, his success rates, and told us to think it over for a week or two and when he gets the scans he will call us and let us know what he thinks.

We couldn't have been more pleased. Now we are just praying about the possible surgery and deciding what is best for Hailey.

Nuerosurgeon

We are finally getting to see a Neurosurgeon on Monday. I am confident that this man will be able to give us the information that we need.Hailey is a very smart child and I hate talking about these things in front of her. I am hoping that this time they will allow her to leave the room after the evaluation so I can talk privately with the Dr. I want to ask about treatment options, but I don't want to scare Hailey with the thought of surgery. Pray that this all works out.

Medication History, thoughts, and feelings. There's got to be a better way!

Hailey has never complained about taking her medication. I am proud of that. She’s really great at taking life as it comes. I could really learn from her. I get very overwhelmed when it comes to her medication, partly because, I was always an anti-medication for kids type person. Now that I have an ADHD Child with multiple other health issues, my attitude has changed a bit. I still hate all of the experiments with meds. You know, “let’s try this and see how it works”. It makes me cringe.

When we first put Hailey on ADHD medication they wanted to try Ritalin. I refused because I had this gut feeling that it was all wrong for her. After a lot of arguing and begging for something different (long and horrible story) we gave it a try. I was right! Hailey barely slept for four days. Her behavior was off the chain. We then began seeing an actual psychiatrist. He put her on Straterra 10mg as well as Rhisperdal. This combination seemed to do wonders for her. She was a different kid. I could not be happier with that decision.

During that time of her thinking more clearly we were able to work through a lot of her abuse and abandonment issues. (We had not adopted her yet) This past summer we did see a slight decline in her behaviors. I felt as though the meds had completely stopped working. I wouldn’t say that we were back at the beginning because we had worked through so emotions, but she had no impulse control, and could not focus. Her Dr. did not want to try different medication, but just upped the dose of what she was on. This helped some but I still did not feel that it helped enough. The Dr. wanted to wait and see how school went.

School was going fine (we home school) and then that dreaded day happened. It was mid September and we were doing school and Hailey past out. It appeared to me that Hailey was having a seizure. After an EEG, and a few MRI’s we discovered Chiari 1 Malformation and Syringomyelia. We are still working all of that out, but since that time Hailey had another decline in focus and impulse control.

Her Dr. did not want to change her ADHD Medication until we knew more about CM. I respect that. He did up her dose which I don’t feel has done anything. In Dec. Hailey began to have headaches, back aches and neck pain. We went to another NS and he said it was Migraines. (another post another time lol) As a result of his DX her Ped. Put her on a strong antihistamine. While this did help some with the headaches, it has caused other problems.

That brings me to my frustration with Medication. Sorry for the rabbit trail. Her headache medication caused her to become very emotional and unreasonable. I called and talked with the Ped. About this and he said that this was a normal reaction because it makes her tiered. He also said that since her headaches were not completely gone we could up the medication to Three times a day. All of this seems counterproductive to what we are trying to accomplish with her ADHD medication. I have since taken her off of the headache medication to see how that went and other than the returned headaches she has been better. I’m so frustrated about the trial and error process and that it seems that the Dr.’s don’t want to listen to me about her symptoms. It is also frustrating that it seems like they just keep putting her on medication with no consideration of what she is already on. Here is her current list of meds:
* Strattera 25mg (ADHD)
* Risperdal 0.5mg twice daily. (Mood and ADHD)
* Melatonin 5mg (Sleep aid)
* Miralax (Bowl problems)
*Cyproheptadine 4mg three times a day (She is not currently taking this. I just don’t give it anymore)

There has got to be a better way!!!!!!!!!!!!!!!

!!!!!

YAY! We finally got an appointment to see a Neurosurgeon. We go on march 8Th.

How to answer the "What is it?" question in regaurds to Chiari Malformation and Syringomyelia

When the words, “Chriari Malformation and Syringomyelia” came out of the neurologists mouth I couldn't believe my ears. I had him repeat it several times, and then I had him write it down. Now it runs of my tongue with ease. Whenever I tell someone that Hailey has this they have the same reaction I did. It’s funny how that happens. I like to compare it to my three year old. When I hear him speak I understand everything he says. It’s very clear to me. Why? I am around it every day, and have learned to recognize his dialect. I often become frustrated when other people don’t understand him. It is wrong of me to expect them to recognize what he is saying. His speech is unclear and many of them are hearing it for the first time. That’s how it is when we begin talking about our children’s medical conditions.

It is important that we as parents be able to give a simple and clear explanation of what we are talking about. The best way to do that is to educate ourselves. Though often hard to find when first looking, there are many wonderful web sites to aid in our gaining knowledge of both of these medical conditions. At the bottom of this post you will find a few links that I have found useful in gaining knowledge.

If you or your child or family member has just been diagnosed you may find it helpful to order this free information packet from the ASAP. I just received my packet and found it very helpful. You can request your packet from HERE. It is easy to get overwhelmed as you learn more. Make sure that you get involved with a support group. It is so comforting to hear from people that are dealing with CM & SM on a daily basis. There are a few great groups on Yahoo Groups. I personally enjoy the pediatrics forum on the ASAP site.

Web sites I find helpful

*The American Syringomyelia & Chiari Alliance Project, Inc. (ASAP)
*The Chiari Institute
*Chiari Connection International (CCI)
*Chiari One
*National Institute of Neurological Disorders and Stroke
*Mason's Mission