To Botox or Not to Botox

Hunter’s physical therapists and rehabilitation doctor’s are highly recommending botox treatments for the cerebral palsy in Hunter’s legs. Hunter has mild to moderate spastic diplegia. This means that he has increased muscle tone in the lower part of his body. The upper body is not affected. In Hunter’s case, his right leg is more affected than the left. Although, the left still has some increased muscle tone.

The botox would be injected in the muscle. This would cause the muscle to relax. Botox has been done on other patients with cerebral palsy. In many cases, it has helped.

Hunter’s increased muscle tone has a developmental impact on his ability to sit independently, walk, stand, and crawl. If the botox treatments are done, there is a high probability that the muscles will loosen up and make the developmental milestones easier for him to reach. It sounds great, doesn’t it? I was so excited. I was ready to dial the number and schedule Hunter to have his first botox treatment. Then, a thought ran through my mind. I realized that I heard about the benefits, but nobody has explained the risk factors or side effects to me. I decided to Google it.

I need to explain what Google means to me. After Hunter was born, all these frightening diagnoses were being thrown at us. Hunter had Patent ductus arteriosus, intraventricular hemorrhage, Necrotizing Enterocolitis, Rentinopathy of Prematurity, Bronchopulmonary Disease and Pulmonary Hypertension…and it would’ve been so easy to read up on each one of these things. I discovered quickly not to do that. I found that the internet can give the worst case scenario. I made it a rule: never Google Hunter’s diagnosis unless I’ve been given a reputable website.

What do I do now? I Google: Botox treatments.

Apparently, I have not learned my lesson and this is what I found out:

1.) Botox is not approved by the FDA for the use in Cerebral Palsy patients and for the use in children and babies.

2.) Botox is made of the same organism that causes food poisoning

3.) If the Botox seeps out of the muscle and into the body, it can cause life threatening consequences. Also, if the botox is not injected correctly, gets into the body, it can cause a fatal reaction.

4.) I read somewhere that botox can cause respiratory issues. (the last thing he needs)

I know that they have to document every case of adverse effects. I can't gamble with my son's life even if the chances are slim. I’m very torn on what to do. I’m going to talk to Hunter’s Pediatrician. I have a lot of unanswered questions before I make a final decision.

On a lighter side, my house has been taken over by toys and there is no adults that live here anymore.

Never wake a sleeping baby

...after all, he is finally sleeping without oxygen. I got so excited. I took a picture of him sleeping without the nasal cannula.



I had to take a picture of his pulse oximeter too. His oxygen saturation was 98%. His heart rate was 75.

Fall Pictures

Saturday, October 17, 2009

I’ve been meaning to write for the last couple days. There has been so much that has happened since I last wrote that I don’t know where to begin. All I can think about is how proud I am of Hunter. He has come such a long way in the last couple months. I wish there was a way that I could express to him how proud I am and make him understand.

Hunter has been going at physical and occupational therapy pretty hard in the last couple weeks. It is making a huge difference in development. Hunter is crawling, playing, putting balls into baskets and taking them out. He has been so interactive and fun. His attitude is changing and he seems to like his new found independence. He has developed a screaming habit. He gets excited and screams. It is cute for the first hour! In addition to his physical therapy, I take him to an additional physical therapy short appointment. At this appointment, he does a baby treadmill. His physical therapist hooks him to a harness and makes him walk. It helps him to learn the one foot in front of the other concept. It also exercises all those muscles in his legs that are affected by the Cerebral Palsy. His hamstrings seem to be his biggest problem. But, he still has range of motion. Hunter is at PT and OT four times a week.

Hunter is doing very positive things with his legs. The future is still unknown. The more he builds the muscles in his legs, the brighter the future is getting for him. Again, Cerebral Palsy has such a wide spectrum of severity. Some children walk on their tip toes and this is due to muscle tone. This causes walking difficulty for these children. Hunter is able to place his feet flat on the ground. His Physical Therapist saw him this week. When she came over and started to work with him, tears filled her eyes. I looked over and she was crying. She couldn’t believe his turn around. In his home therapy session, Hunter was STANDING against the couch, playing with a toy that was on a couch cushion.

Hunter has a pulmonary appointment coming up. I’m really excited for this appointment. Hunter has been falling asleep and not needing the oxygen. His oxygen saturation stays in the upper 90’s while sleeping. Lately, it has not fallen below 95%. He has been off oxygen during the day (for the most part) for awhile now. He needed it while he slept and that was a hurdle that was hard to cross for him. He is doing it now! I almost don’t want to get my hopes up yet, so I’m not going to jinx him and say any more about this.

We have had a bout with illness and Hunter is taking Tamiflu (anti-viral medication). It has not affected him too severely or it was caught early and the Tamiflu stopped it before it became serious.

I am in the process of converting his Caring Bridge journal over to Blogger. In Blogger, I’m removing the password, and his journal will be public. I have thought about this and whether I wanted such a personal thing to be made public. Then, I remember back to when I was pregnant, on bed rest, knowing that I was in preterm labor, and seeking information on what it would be like to have a micro preemie. If Hunter’s journal, could give someone hope, support, and encouragement then it is completely worth it. If having Hunter’s journal public starts causing problems and I start getting weird people posting weird stuff, I can put a password on it. Blogger has many benefits that Caring Bridge doesn’t have. First, I can post current pictures with my journal entries. I can also post videos. I have some really cute videos of him that I haven’t let anyone see yet. I will send out an email when I’m finished. It will include the web address to Hunter’s page. After his page is done, I will not be sending Hunter updates by email anymore. His journal will be easily accessible.

I also wanted to remind everyone that the Fashion Show for St. Joseph Mercy Hospital is on November 12th. Tickets are $25.00, this includes a pasta bar. All profits go to St. Joseph Mercy Hospital. I am a speaker and have been busy writing, preparing, and practicing my speech. I’m SOOOO nervous! I already have stage fright! I can’t believe that I fit Hunter’s story into a 10 minute speech. That was a challenge. Hunter will be a model at the Fashion show. If you are interested, please let me know.

Friday, October 2, 2009

One of Hunter's physical therapist was working with him yesterday. Hunter's Cerebral Palsy is in his ankles and legs - mainly the hamstrings. She noticed that Hunter has not lost any range of movement in his ankles. This is a great thing. The hamstrings are something that would not prevent Hunter from walking independently. They have been concerned over the CP in his ankles, because that would. But, now that they know Hunter has not lost any range of movement in his ankles, there is a chance that he will walk independently (without the aid of walker, crutches, cane, etc). CP is not a progressive disorder. I have said this over and over again. But, after going through the trauma of severe prematurity and watching the obstacles they face, you learn to grab on to every positive and roll with it. It's really one thing to hear about it in an email, but to see it with your own eyes, can change the way you view everything! I've learned to turn this situation into a positive one. I grab a hold of everything positive and roll with it. I figure between a positive attitude, a determined mother, and a child's will to fight - I will do everything we can to see that Hunter can walk independently. Be thankful for every step you and your child takes, it is a true gift! On a separate issue, for those of you that have followed closely, I've been having a problem with a girl at Hunter's medical supply company for a year and a half. This girl is very insensitive to special needs, fails to sends Hunter's medical supplies on time or at all, and does everything to make my situation harder. I have let it go, or talked to her supervisor from time to time. It wasn't until recently that this took a turn for the worse. As you are all aware, Hunter has a feeding tube that was surgically placed into his stomach. Every three months, I need to change this feeding tube and put a new one in. This feeding tube is held in his stomach with a balloon like object full of water. If that balloon breaks, the feeding tube falls out, and the hole starts to close. It can close within an hour. If the hole closes, Hunter has to go through surgery..again! So, anyways - I told this girl at his medical supply company that I have a 30-45 minute (depending on traffic) drive to the hospital. By the time I was triaged, Hunter's feeding tube hole would close up. I would always need one at home for back up. She argued with me, as she normally did, and was convinced she was always right. At one point, she told me: "If it falls out, take him to the hospital, because I'm not sending you another tube until your three months is over with." She held the key to Hunter's world and wasn't afraid to let me know. She was completely uneducated and ignorant about medical supplies and the importance of them. So, last Saturday, on my b-day, and before my surprise party - guess where I ended up? I was at U of M Mott's hospital. I found out very quickly how fast that hole could close up. By the time his feeding tube fell out at home, and I got him to the hospital, the hospital could not get a new one in. They were talking about admitting him for another emergency surgery. A Physician Assistant from Peds surgery came down to the ER. She got a small catheter in the feeding hole, and Hunter was able to go home. Let's not mention that it was extremely painful for Hunter as she tried to squeeze a catheter in a closed hole in his stomach. My Dad came up to the hospital to be with me. My Dad NEVER cries. I think I only saw tears in my Dad's eyes a couple times my entire life. This was one of those times. Needless to say, I was not happy. If you ever experience pain in your child, knowing it was the fault of someone else, you will know the thoughts that went through my head that day. I knew that something had to be done with this girl. This WOULD NOT happen again. So, Monday morning, I called up to the medical supply company. I wasn't going through her supervisor anymore (been there, done that). I wanted the owner. I got the owner. Let's just say that I am happy with the outcome. I'm hopeful that I will not have any future problems. I explained to the owner that it was this simple: Hunter needs, prescription sent from doctor, I order, insurance pays, they ship -end of story! I told her that I don't want any drama in between those steps. She was upset that she worked so hard and this girl was misrepresenting everything she worked hard for. There have been other complaints against this girl. I was not the only one. For those that knew me really well, I was always a very passive and laid back person. I still am...until it comes to my son! I guess I've been too passive on this girl...up until now. Again, I'm faced with some feelings of guilt and I'm trying to convince myself that bringing this to the owners attention was the right thing to do. Yet, I'm still feeling guilty about it. I'm much too sensitive. I know. Hunter is still working hard through therapy. Every week, he is making developmental strides in the right direction. He has come a long way. Sometimes, it’s so hard to see because I'm with him every day. But, his therapists do a great job and pointing out the new things he's doing every week. He is responding very well to the therapy and the independent work I do with Hunter at home.