Breanna was born on Feb 17th. Breanna’s cag is 80+. We are waiting for the final number. Her main symptom is muscle weakness especially in her ankle. Both feet are turning inwards too. This scares me because she needs good ankles to walk. She struggles with balance and trips often and falls sometimes. Her speech is already a little hard to understand and she is gagging on food sometimes. Her eyes flutter in a weird way and even got stuck open twice. Her handwriting is becoming weak so it can be hard to read her writing. She can’t zipper zippers or button buttons. All her shorts and pants have to have elastic waist bands so she can get them off and on. She pretty much needs assistance with all her shirts. Lastly, she has bathroom issues often. She has accidents often but does not need a diaper yet.
We thought HD was dead in the family because her grandpas doctor said so. The dr told her grandpa, at age 60, of you aren’t showing symptoms by now then you don’t have it. No test was ever ran. When Breanna started showing signs I was sure it was HD but nobody would believe me since it suppose to be dead in the family. Even before she started showing symptoms I noticed my husband was not right but I couldn’t put my finger on it. Anyway, after 3 years of fighting with Drs, unnecessary testing and misdiagnoses she finally was tested. One reason the Drs wouldn’t test Bre is because her dad wasn’t ready to be tested. He finally had his results in July of this year with a cag of 45 and we found out Bre was positive August 23, 2016 with a cag of 80+. By the way, grandpa was tested a year ago and has a cag of 43.
I’m worried about everything concerning HD. I worry about having to tell her the next step of what will happen to her. I worry about her not being able to walk but most of all I worry so much for when the day comes that we can’t have conversations together.
Due to JHD she had to quit the swim team because she is afraid to drown. She can’t play much at playgrounds and she generally has problems playing all sports. However, she never quits! She loves sports and she tries her hardest to do what other kids do.
Breanna’s pt is working on Bre getting a walker and a wheelchair. I thought I had a few more years before she go to this stage. Friday, BOOM! She can’t balance well or walk. Really! I hate you jhd! I hate you!
My daughter has to stop playing volleyball this week. She already had to stop being on the swim team. She couldn’t join basketball and now this!
Oh, and she has to do 1/2 days on Thursday and Fridays! Most kids would like this but not Bre. This disease has stolen my daughter as well as my son. He can’t handle her behavior. Speaking of behavior, it sucks! She talk back left and right. She’s mean to me and her brother now. Worse than before! I think she is giving up on herself. I told her to try fighting and she told me no. My heart is so broken.
Her legs totally hurt too and I can’t get her seen. I will probably have to take her to the er before we go to Disney and pray the dr will give her some pain meds. I hate this disease and what it is doing to my family! I cried when it became 2017 because about 30 minutes before that Breanna L said, “mommy Why can’t I stop drooling on my plate while eating this pizza?” I had to tell her that it’s due to jhd and her tongue muscles are getting weaker. Things keep moving too fast. So, when 2017 hit i just thought to myself how many more things are going to change in her this year and they will not be for the better.
She got a feeding g tube. Her lung deflated when it was put in but they put a chest tube in and fixed her up to go home. She got admitted several times again due to painful distended stomach. Dec 2017 She’s still strong and having a great Christmas.
Her favorite colors are purple and then blue. She loves all sports especially soccer and recreational swimming. She loves stuffed animals and barbies. She loves bomb fires and s’mores. She loves to squeeze whipped cream into her mouth. She loves to give and receive hugs and kisses. She makes people laugh because she is a little comedian. She loves church. Her smile is infectious and so is her happiness. She loves comfy clothes as well as really fancy clothes. She loves bows. The more daily the better. Her number one love are boys. In fact, I think they are the only reason she likes to go to school.
January 2018- The last week in November she had the stomach flu, she was admitted to the hospital 3 different times in December. The worst one being a collapsed lung. The first day back from school she got a concussion and had to go to the ER. Then this all started going on this week with her. Poor thing. I hate JHD!
August 1, 2018- My poor baby girl was admitted to picu tonight for a concussion and 3 fractures to her left eye bone. She is doing ok but she is tired and sore. The front wheel of her walker went off a 6 inch high sidewalk. She fell face first onto an asphalt parking area. When she fell her body was literally stiff as a board and all that force went right to her face. Her head bounced on and off the pavement too. I’m so lucky she didn’t get hurt even worse.
October 14, 2018- Breanna has had a rough time with her JHD, Juvenile Huntington’s Disease, lately. Well not lately, her symptoms flared up mid July of 2017. She has had problems with her temperature regulation (she would either become badly overheated or she would become very cold), she has become weaker, having more balance issues, neuropathy pain and major GI, gastrointestinal, problems. Since the end of September of 2017 Breanna has been in and out of various hospital ERs and she has been admitted to a couple different hospitals. An unbelievable amount of maybe 15 times. She has always had GI issues but over the past 5 months her gut has had increased problems. She had a g-tube placed in December which has allowed me to put medication and formula feeds right into her stomach. Also, I could release some gas from her stomach through the gtube but her body would just buildup more gas. She has gastroparesis. Her stomach muscles do not work right at all. Her muscles are not working to move her food into her intestines. Her intestines aren’t moving the gas very well either. Due to this issue she has had stomach pain, she has not been able to eat or drink very much by mouth and she has not been able to tolerate her feeds through her g-tube. She could barely tolerate her medications through her gtube. I’ve worked closely with her drs whenever she has been at home and even with increasing her stomach medication and adding more stomach meds to her regimen her gas issue did not improved. Hence, why she has to keep returning to the hospital. Her GI issues became so bad she had to go to an out of town Er on September 29th and upon returning to Michigan the next day, September 30th, she had to go straight to the local Er. They admitted her. The drs made some changes to her medication and she improved a little bit but not nearly enough. On October 4th the drs thought she was ready to be released even though I told them that she was still too bloated and she was still too uncomfortable. The drs released her anyway only for me to bring her back to the hospital on October 11th. The drs and I mutually agreed that she now needed to get a GJ-tube. The gtube that she already had still goes into her stomach but now I only put her medication through the gtube and use it to release gas from her belly. The new J tube was threaded through the beginning of her small intestines and this tube is used to administer around the clock formula. We all had high hopes only for them to be crushed. The new tube seemed to helped a bit at first but then things went down hill. The gas started to increase. Her stomach became distended, she is in pain due to the gas, and it is causing her not eat much by mouth (worse than her normal 1-2 tablespoons a day), she is barely drinking by mouth (worse than her normal 1-2 cups of milk a day), she is tired, she won’t sit up much due to the increased pressure and pain in her abdomen, the amount of formula she had been receiving had to be turned down which made it so the nurses had to access her port to give her IV fluids straight into her veins and they increased her stomach medications again. Due to these problems she has been wanting heat packs on her stomach while she is awake and the nurses and I are burping her belly a lot during the daytime and at night. We only stop releasing gas through her gtube when she goes on walks or when she has to get medication. Administering meds means we cannot release gas from her stomach for 1-2 hours afterwards so the meds have time to absorb into her system. Nothing is working. The drs and I are hoping that as her body adjust to the new tube, the increase of meds and being able to burp her belly more that her body will start to respond and reduce the air that continuously rebuilds. I feel so bad for my poor baby girl. This is not fair that she has to be in pain all the time. Please pray that her gas buildup will decrease and the pain will subside.
October 20, 2018- Breanna was finally released last night from the hospital. It was bitter sweet. The good news is that she is well hydrated and has all the nourishment she needs through her j-tube. Plus, I can allow gas to escape from her belly through her g-tube as much as her belly will allow without having to stop her formula feeds. The bad news is that she is more distended now than she was before because she is getting full formula feeds. Even though the formula now goes straight to her intestines via her new j-tube the gas continues to build in both her stomach and intestines. She gets a bit of relief when I “burp” her through her stomach tube but I can’t always hook her up to allow this because a lot of stomach juices can come out too.Her meds don’t seem to help much and her stomach and intestines still have extremely slow motility. Her stomach hurts and she uses a heating pad to help with her comfort but you all know how strong she is so she doesn’t complain often.The drs feel, at this point, they have exhausted all the options that are not too invasive. I mentioned TPN to the drs and some other things but they didn’t seem too interested. The drs and I also decided to see if once her body became use to the new j-tube that her gut muscles will work better which will lower the amount of gas that keeps building.In the meantime I will continue to research other options for when things get worse and I will contact the university of Michigan and/or Mayo Clinic. This mother never stops fighting.
Bre(Breanna L) and I saw Jurassic World at the theater followed by picking out ice cream at a store. She picked out strawberry sherbet and I chose mint chip. Yum! The only frustrating part of the evening was that some self-absorbed woman had the audacity to complain about Breanna’s wheelchair being to tall for her 5 year old grandchild to see over for the movie. Umm...why are you bringing a 5 year old to this movie and why would you sit behind the handicapped row? The little girl cried throughout the movie because she was scared. I felt bad for the little girl and the grandma because grandma must be an angry person to have the nerve to complain to me. Thank God Breanna didn’t hear the woman and I didn’t let her bother me. Bre and I had a great evening. 🎥 🍦
We have been cooped up a lot due to the heat but Bre actually wanted to go out and see fireworks tonight! I was so excited! We went to Plainwell’s airport to watch them go off. We parked and stayed in the car with the air conditioning on. Bre is in pain in the heat and/or humidity so she has to stay where it is cool. We had extra space between the vehicles where we parked which was nice. At one point, the guy next to me tapped on my window, I rolled it down and he was so pissed about my vehicle being on. He was angry that he and his family had to smell my exhaust. I told him my daughter was handicapped, the heat caused her extreme pain, and I had to leave the air conditioning on. I cried and told him I was sorry. I cried a bit during the fireworks but I did calm down. When the fireworks were finished I got out and politely, while my voice was cracking and tears were dropping, told him who Bre used to be when she was healthy, I told him about her disease and what it is doing to her, I told him about what her life entails now and about the funeral I get to plan for her in the future. I said my only hope in telling him all this is that the next time he is not happy with a situation he might be more polite because you never know what the other person’s life is like. He said he would in a way like a child does when they have been scolded by a parent. I could tell he felt terrible. I wished him and his family a happy 4th and that I hoped he had a good night. I purposely was very nice to make sure he realized what a horrible thing he did. He had his head down and we left. I balled before I got back in the vehicle with Bre. Bre was oblivious to the entire situation. Twice in one week with such inconsiderate people. I want to say this memory was not the greatest for me but I was proud of myself for how I handled the situation and I realized I would never have been this well-rounded of a person if it weren’t for Breanna. I think tonight Bre helped me and this man to be better people. I normally am not this vocal about mine and Brea’s life and what we deal with but I thought this was important to share, not just on my Huntington’s disease sites, but also on my personal page.