Physical Therapy

This video is what led us to seek out physical therapy for Hailey. It’s sad  to see your child try so hard to ride her bike, but struggle the whole time. When we started PT I had no idea what to expect. I couldn’t really imagine that they would do anything that I couldn’t do at home. You know what? They haven’t done much that I can’t do at home but, the PT has been able to get Hailey to do things that I struggle to get her to do. Also the PT has pin pointed problem areas, and has told us exactly what we can do to work on strengthening those specific areas.

Some PT’s want to do everything at their office so that they can supervise, this would have put us going to PT 3 times a week based on Hailey’s needs. But we were so blessed to get a PT that gave us the option on Parent training, so that I can do most of the exercises at home, and just see her every 2 weeks. That has worked out so great for us.

In the time that we have been working on Hailey’s targeted areas I have seen her do things I never thought possible. The other day at the park she climbed up the climbing wall. and she walked a 3k on Saturday.  We are still having problems with endurance, but all  in all she is making great strides. We should have sought this out a long time ago.

This is Hailey’s PT. We love her!

Things that make you go HMMM….. #1

Doctors don’t think twice about putting my child on medications that can cause horrible side effects like; tics, suicidal thoughts, psychosis, muscle weakness, hypertension and many many more possible symptoms. But if I mention trying out any bio medical treatments, or supplements they freak out because the one I want to try could cause the child to become jittery.

Sort of makes you go HMMMMMMMMMMMMMMMMMM!

(disclaimer, I am not bashing the use of medication, we use prescription meds.)

Update on MRI and leg weakness

I just realized that I have not given an update on Hailey. Well, Hailey has had both a PT Evaluation, and an MRI of her brain.

The PT noted that Hailey had weakness in her hips, and upper body. She said it was significant enough for Hailey to receive PT.  We have had 1 PT session, and we have daily exercises that Hailey is to do at home. She has done pretty  well with these exercises.

The MRI showed no change in the size of the Chiari, and did not she a block in her CSF. However, Hailey did start complaining that her leg was falling asleep and hurting. So her Pediatrician called and talked with the NS herself, which resulted in the NS ordering a full spin MRI to check out the Syrinx. He also got us in for an office visit to discuss the issues and the result of the MRI for next week. I hope we can shine some light on what is going on with our little missy.

She’s Amazing

Yesterday we went to Oak Mountain State Park. Hailey had a blast. We did go on a hike, and she did so good. On the was back from our hike (still on the trail) Hailey did give out. She said her whole body hurt REALLY bad. She said that her legs felt like someone was stabbing her, and that her head was throbbing. We did rest, but she pulled it together enough to make it back to the car. SHE IS AMAZING!

When Meds Fail

When meds work, they work. But when meds fail, they REALLY fail. Hailey’s meds shave failed, but there’s nothing we can do about it. We went to her meds Doctor last  week to talk about how bad the meds are failing, and as standard procedure she did a Neuro check, and discovered that Hailey did in fact have exaggerated reflexes. Because that indicates Neurological damage she refused to do anything with her meds.

We had already seen the pediatrician about this issue, and already have an MRI, PT Eval set up, and a referral sent to a Neurologist. I had hoped that Hailey was faking the problems with her legs, and that it was a side effect of her meds, but that’s not the case. In the meantime we are left with failing meds.

When meds fail school work is impossible  suffers. Family time works only because we are able to ignore look past her erotic behavior. She becomes so emotional and cries at the drop of a hat, and don’t you dare say the word, “NO” to her or you may be forced to endure more crying. Her brother becomes a target for her EXTREAM BOSSYNESS, and her impulse control is pretty much gone. On top of that she has hording tendencies and that is evident, and her anxiety is through the roof.

All of that said, the worst part is that as her mother I want to fix it for her, but I can’t, and that makes me sad. I can see her trying so hard to get control of herself, and I try to help her, but there’s just some things even a mother can’t fix. (though I try really hard) Anyway, sorry for the vent I just had to get that out.

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)

Classroom Accommodations- Wispy Reader

I began to notice that Hailey was struggling with her reading comprehension. She can read fine, but seemed to forget everything she had read when she got hung up on a word. I also noticed that if I read to her, she had better memory of what was read. So I knew something had to be done.

I found the Wispy Reader at the parent teacher store. With this she can read aloud (supposed to be in a whisper)  and she can hear herself reading. I tried it out and it really is like someone else is reading to you. My thought was that if she could hear herself in abstract, she would better comprehend what she had read.

She has been using it for a month now, and I have already seen improvement in her reading comprehension. She also seems to be able to read more fluently, and catches herself when she leaves out words.

You can get more information about this product at Imaginative Learning Tools.