Journal entry by Robin Wendling —
It’s hard to know where to start!
Jocelyn is doing pretty amazing considering! To see her you’d never know she was so sick with so many complications.
-We have seen many doctors, had many tests done and have gotten alot of new information.
-Her metabolic and genetic tests are all perfectly normal! Her CK levels went back to normal levels! Excellent news!
-Blood pressure is normal now with no meds!
- she has been done with Physical therapy appointments for awhile now.. but still continue at home. She has ended up wearing her foot braces still, which is way way longer than anticipated! And may need to wear them for awhile longer, we will have to see. We have tried to stop using them many times over the months and her leg muscles get tight again, she has trouble walking in the morning and they get tired by night, it effects her whole day and she is terrible crabby! Her doc is not concerned, (this is a different doc that took over her care because her wonderful doc moved, she has a lot of experience and her daughter has recently had rhabdo in her hip from running!) I wish they would do a follow-up Blood check and make sure nothing is elevated. I think I will be forever overcausious!
-We had some testing done to see if she has any damage from all of the medication and vaccines. Her liver is pretty bad, heavy metals etc, so we are slowly doing detox and support.
- So for the new info, I talked to her ER doc and her pediatric doc in Gillette. Just to go over what may have caused all of this.. to prevent any possible future reaccurance! They all feel, that it was all directly related to her vaccines. Her Doc at Children’s said the same as well. For the CK -rhabdo-levels to be so high when we brought her to ER, it started with the moderate vaccine reaction. The swelling in the muscles around her cheeks and throat. Not the flu as initially suspected. Although the flu on top of it may have made it worse. With her immune system compromised, she got the strep and the flu. Then got sepsis, had heart failure, kidney failure from the rhabdo. So her systems were shutting down. The respiratory failure it turned out was not caused from an infection (the pathogen they found and cultured never revealed anything) it wasn’t phenmonia, but was very possibly and probably caused from a food allergy to 2 of the foods in her liquid meal replacement given in her feeding tube. Apple and Strawberry. A respiratory IgE food allergy blood test confirmed this. After we turned off her feeds she had stabilized within 2 hrs. She would have had this severe reaction because she was getting the foods constantly, not just once or twice a week or month as she normally ate them. Class 6 allergy on this test being anaphylactic, she was a class 3. So she might get a stuffy nose or a 2 day cough from eating the foods occasionally, but would have severe respiratory reaction when getting them for the 15 hrs she was slowly getting them! Turns out, there are many types of allergies and many types of reactions. We are so thankful to have many wonderfully educated doctors and tools to help heal her! We have been very blessed!
-So at the time of her next vaccinations..going into 7th grade, her doctors feel that if the benefit of her vaccines outway any possible risk, then we will very cautiously proceed with one dose of a single vaccine, one at a time and wait 2-3 month to give the next. Of course I’d like to run the other way and say no way! But I have to believe our Doctors know what they are doing and I have faith in them!! There will be no flu shots. Her Doctors at Children’s felt that if she would have had the flu shot for that season, she would have been compromised before she got her vaccines and she wouldn’t have even made it to Denver. They are afraid that the flu shot might mimic her past reaction when she had the flu when she was so sick?! And possibly have a similar reaction or trigger the Rhabdo again... no thanks!!
-They will also be cautious with the other kids and follow a different vaccine schedule that is safer with less possible reactions, as some of them have had mild reactions already. We’ve also run allergy tests on the rest of the family.
- She has a little PTSD or post traumatic stress disorder. Which is to be expected with her experience! Also some troubles crossing right brain/left brain. We have some excercises and energy work to try to help with this. So to describe this...? Jocelyn was really having trouble focusing, staying on task and would totally shut down at any negativity or being told no or asked to do something etc...symptoms of autism spectrum. Her physical therapist asked if she had symptoms before.. no, she had none. She had Jocy write her name, which she could do really well before she was sick,but this time, she wrote it backwards! Completely backwards! So PT tested her on other things as well. She explained that your Corpus Colosum in your brain crosses over, or ‘crossing the mid line as some may recognise’ in certain circumstances they uncross, causing behavioral disorders, so we do a series of exercises to retrain her to brain to cross again! It’s pretty fascinating! And very effective! We really noticed when school started, it was a terrible experience! At home she felt safe and we knew how to control her environment! But to go to school was very hard! Some separation anxiety also. Once she calmed down and went to class she did fantastic! The first few days were ok.. then she refused the bus. So she rode with Aurora. Then she wouldn’t get out of the car, then we had to force her in the car, carry her to the office, going through a complete breakdown, kicking screaming, flailing and wild eyed. Was almost more than we could handle, I /we just wanted to scoop her up and run away with her, this just didn’t seem right at all! The principal or counselor would hug her.. and give her gum, while Aurora-her big sister- or I left. I’d sit in the car and sob! Or Aurora would call sobbing! But within 10 minutes her principal would call and she was happy and fine and in class! They would check on her during the day. This went on for weeks! Getting a little better each week! With the help of a dear friend we finally tricked her onto the bus with gum! Her daughter would bring Jocelyn gum in the morning! They are great friends! Gum seems to be the ticket! She has been doing really well this last month! Ups and downs to be expected!
Please continue to pray that she never has a similar reaction! And that we can accept God will if she does!
God has been Gracious, He has given our family much strength and many dear friend and helpmate on this road. Many heart felt thanks go to God!
Many fervent thoughts and prayers to our family and friends that have been under heavy trial these last few months also! We have a strong God! Thy will be done..He will take care!
Jocelyn is doing pretty amazing considering! To see her you’d never know she was so sick with so many complications.
-We have seen many doctors, had many tests done and have gotten alot of new information.
-Her metabolic and genetic tests are all perfectly normal! Her CK levels went back to normal levels! Excellent news!
-Blood pressure is normal now with no meds!
- she has been done with Physical therapy appointments for awhile now.. but still continue at home. She has ended up wearing her foot braces still, which is way way longer than anticipated! And may need to wear them for awhile longer, we will have to see. We have tried to stop using them many times over the months and her leg muscles get tight again, she has trouble walking in the morning and they get tired by night, it effects her whole day and she is terrible crabby! Her doc is not concerned, (this is a different doc that took over her care because her wonderful doc moved, she has a lot of experience and her daughter has recently had rhabdo in her hip from running!) I wish they would do a follow-up Blood check and make sure nothing is elevated. I think I will be forever overcausious!
-We had some testing done to see if she has any damage from all of the medication and vaccines. Her liver is pretty bad, heavy metals etc, so we are slowly doing detox and support.
- So for the new info, I talked to her ER doc and her pediatric doc in Gillette. Just to go over what may have caused all of this.. to prevent any possible future reaccurance! They all feel, that it was all directly related to her vaccines. Her Doc at Children’s said the same as well. For the CK -rhabdo-levels to be so high when we brought her to ER, it started with the moderate vaccine reaction. The swelling in the muscles around her cheeks and throat. Not the flu as initially suspected. Although the flu on top of it may have made it worse. With her immune system compromised, she got the strep and the flu. Then got sepsis, had heart failure, kidney failure from the rhabdo. So her systems were shutting down. The respiratory failure it turned out was not caused from an infection (the pathogen they found and cultured never revealed anything) it wasn’t phenmonia, but was very possibly and probably caused from a food allergy to 2 of the foods in her liquid meal replacement given in her feeding tube. Apple and Strawberry. A respiratory IgE food allergy blood test confirmed this. After we turned off her feeds she had stabilized within 2 hrs. She would have had this severe reaction because she was getting the foods constantly, not just once or twice a week or month as she normally ate them. Class 6 allergy on this test being anaphylactic, she was a class 3. So she might get a stuffy nose or a 2 day cough from eating the foods occasionally, but would have severe respiratory reaction when getting them for the 15 hrs she was slowly getting them! Turns out, there are many types of allergies and many types of reactions. We are so thankful to have many wonderfully educated doctors and tools to help heal her! We have been very blessed!
-So at the time of her next vaccinations..going into 7th grade, her doctors feel that if the benefit of her vaccines outway any possible risk, then we will very cautiously proceed with one dose of a single vaccine, one at a time and wait 2-3 month to give the next. Of course I’d like to run the other way and say no way! But I have to believe our Doctors know what they are doing and I have faith in them!! There will be no flu shots. Her Doctors at Children’s felt that if she would have had the flu shot for that season, she would have been compromised before she got her vaccines and she wouldn’t have even made it to Denver. They are afraid that the flu shot might mimic her past reaction when she had the flu when she was so sick?! And possibly have a similar reaction or trigger the Rhabdo again... no thanks!!
-They will also be cautious with the other kids and follow a different vaccine schedule that is safer with less possible reactions, as some of them have had mild reactions already. We’ve also run allergy tests on the rest of the family.
- She has a little PTSD or post traumatic stress disorder. Which is to be expected with her experience! Also some troubles crossing right brain/left brain. We have some excercises and energy work to try to help with this. So to describe this...? Jocelyn was really having trouble focusing, staying on task and would totally shut down at any negativity or being told no or asked to do something etc...symptoms of autism spectrum. Her physical therapist asked if she had symptoms before.. no, she had none. She had Jocy write her name, which she could do really well before she was sick,but this time, she wrote it backwards! Completely backwards! So PT tested her on other things as well. She explained that your Corpus Colosum in your brain crosses over, or ‘crossing the mid line as some may recognise’ in certain circumstances they uncross, causing behavioral disorders, so we do a series of exercises to retrain her to brain to cross again! It’s pretty fascinating! And very effective! We really noticed when school started, it was a terrible experience! At home she felt safe and we knew how to control her environment! But to go to school was very hard! Some separation anxiety also. Once she calmed down and went to class she did fantastic! The first few days were ok.. then she refused the bus. So she rode with Aurora. Then she wouldn’t get out of the car, then we had to force her in the car, carry her to the office, going through a complete breakdown, kicking screaming, flailing and wild eyed. Was almost more than we could handle, I /we just wanted to scoop her up and run away with her, this just didn’t seem right at all! The principal or counselor would hug her.. and give her gum, while Aurora-her big sister- or I left. I’d sit in the car and sob! Or Aurora would call sobbing! But within 10 minutes her principal would call and she was happy and fine and in class! They would check on her during the day. This went on for weeks! Getting a little better each week! With the help of a dear friend we finally tricked her onto the bus with gum! Her daughter would bring Jocelyn gum in the morning! They are great friends! Gum seems to be the ticket! She has been doing really well this last month! Ups and downs to be expected!
Please continue to pray that she never has a similar reaction! And that we can accept God will if she does!
God has been Gracious, He has given our family much strength and many dear friend and helpmate on this road. Many heart felt thanks go to God!
Many fervent thoughts and prayers to our family and friends that have been under heavy trial these last few months also! We have a strong God! Thy will be done..He will take care!
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