Need prayers, my son has been sick and the stress is too much

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lindamarie40

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I feel completely burned out at this point. I have constant headaches and backaches and I am running out of steam to help my son.

My son has an auto-immune disorder called PANDAS. This is such a frustrating disorder that it is very hard for others to understand sometimes. Basically when he gets sick, anything, sore throat, cold, virus… his immune system attacks his brain instead of the invading bacteria. This ends up resulting in psych symptoms, extreme panic and anxiety, regression, not sleeping. My biggest problem at this point is school. When this happens he cannot go to school due to the anxiety and panic. Unfortunately normal meds for that do nothing. So far the only thing that worked was an antibiotic.

We are now on another antibiotic but so far he has not returned to school. My other issue is he attends a catholic elementary school and the principal just does not get it. Our township will not provide a tutor, so I have to pay extra for that on top of tuition for school he is not attending. I don’t know if I should just put him into the public school, because from what I hear they have special programs for children with chronic illnesses. I hate to take him out, but they cannot help and the principal just gives me attitude.

I am trying to accept this as the job God has given me. My children are my life and I will do anything to help them. It just gets so hard sometimes and I feel completely hopeless. I don’t know what He wants me to do. I am having a hard time trying to understand why and how I am supposed to handle it. Today has just been a bad day. Not only am I trying to get my son caught up on the school work, but my other son is also home with a nasty cold. I have no energy left.

I just ask if you can include my family in your prayers. I have begged God for help and I need any additional help anyone else can give.

Thank you.
Linda
 
You are in my thoughts and prayers lindamarie. Tell Him everything you posted here…lean on Him.

Have no anxiety about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.
And the peace of God, which passes all understanding, will keep your hearts and your minds in Christ Jesus.
Finally, brethren, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is gracious, if there is any excellence, if there is anything worthy of praise, think about these things. Philippians 4:6-8
 
I am sorry for this cross you carry, I will most definately pray for you and your son.

Did you ever look into home schooling? My husband was homeschooled and had 2 degrees by 19years old! I hope to homeschool our children.
 
lindamarie40 said:
I feel completely burned out at this point. I have constant headaches and backaches and I am running out of steam to help my son.

My son has an auto-immune disorder called PANDAS. This is such a frustrating disorder that it is very hard for others to understand sometimes. Basically when he gets sick, anything, sore throat, cold, virus… his immune system attacks his brain instead of the invading bacteria. This ends up resulting in psych symptoms, extreme panic and anxiety, regression, not sleeping. My biggest problem at this point is school. When this happens he cannot go to school due to the anxiety and panic. Unfortunately normal meds for that do nothing. So far the only thing that worked was an antibiotic.

We are now on another antibiotic but so far he has not returned to school. My other issue is he attends a catholic elementary school and the principal just does not get it. Our township will not provide a tutor, so I have to pay extra for that on top of tuition for school he is not attending. I don’t know if I should just put him into the public school, because from what I hear they have special programs for children with chronic illnesses. I hate to take him out, but they cannot help and the principal just gives me attitude.

I am trying to accept this as the job God has given me. My children are my life and I will do anything to help them. It just gets so hard sometimes and I feel completely hopeless. I don’t know what He wants me to do. I am having a hard time trying to understand why and how I am supposed to handle it. Today has just been a bad day. Not only am I trying to get my son caught up on the school work, but my other son is also home with a nasty cold. I have no energy left.

I just ask if you can include my family in your prayers. I have begged God for help and I need any additional help anyone else can give.

Thank you.
Linda
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I am sorry and you will be in my prayers but I do have a couple of practical ideas.
  1. if the principal is giving you a problem, speak to your priest because ultimately she is his employee. If you don’t get any satisfaction there, then you can go to your diocese or the superintendent of Catholic schools and the the Bishop.
  2. National Honor society requires volunteer tutoring to join. Call your local High school and ask for a list of available honor students that can come to your home to tutor your son. We have used HS honor kids before, it will be free and sometimes they have turned out to be some of the best tutors my children have had. This will save some money for you. I’ve used kids from Catholic as well as Public schools. Even after they have met their hours and you have a good relationship with the tutor, they will be much less expensive than going to an adult or tutoring center.
    The tide is slowly turning on how Catholic Schools treat special needs children. The only way things will change is if we speak up and out. I know you feel overwhelmed and discouraged but never give up and God will give you the strength to continue!
 
Dear one,

Please don’t give up, and never doubt Our Lord is right beside you during those exhausting days and nights. He is Lord of all, and will not give you anything you cannot ultimately handle. Pray, pray, then pray some more, even if it is the simple cry of, “Jesus, give me strength!”

My mother lived with us while she was dying and I had many, many hours of exhaustion, anxiety, and sorrow with the cross she and I were bearing. I prayed for strength, and also for her comfort. Our Lord helped me to understand how He arranged it all to my mom’s good that it was possible for her to come here and live with us in her last months. It was indeed a very difficult time, but I’m glad we were able to take care of her.

Your son has been given to you, not anyone else! You have this job to do and Our Lord has given it to you for your son’s good - and yours, too, I’m certain! Do not be afraid, He tells us over and over. Just try to pray and God will comfort you and give you strength.

All good.
 
I’m sorry to hear about such a heavy cross you have. I will pray for God to give you strength, patience, energy, and courage. :console: Do you have nearby friends or family that could provide more help? Or some sort of assistance through the Church?

If I were you I would absolutely consider switching to the public school if they are more equipped to handle special needs. Generally I think Catholic education is the best option, but every family is different and it sounds like you really need to consider other options.

I would also recommend homeschooling if possible. Not only will you be able to tailor the education more to his needs, but also he will get sick less often because he won’t be exposed to so many other kids on a daily basis. I hope your area has a good homeschooling community to give you the support you need. If not, I believe there are at least online communities and resources to help you.

Good luck and God bless.
 
Linda I’m sorry you’re having such a hard time.
Maybe you need to give the principal actual clinical information about your son’s condition or ask your son’s doctor’s help in this regard. Is that possible?
I now about many autoimmune illnesses but hadn’t heard of this one either.
I hope things improve soon for you and your boys.
I shall pray for you all.
 
First of all, I would like to offer my deepest sympathies to you and your family. As an adult child with physical disabilities who has endured medical trials and who has witnessed the effect that my situation has on my family, I can certainly empathize with your situation. Supporting a child with disabilities is rarely straightforward; however, there are a number of things that you and your family can do to manage and mitigate the negative effects of this situation.

Suggestion 1: To properly care for your children, you must first properly care for yourself. Schedule an appropriate amount of time for sleeping, eating nutritious meals, and hygiene. It sounds like you are overwhelmed. Perhaps setting aside time to listen to relaxing music or engage in meditation and prayer would replenish your mental and emotional stamina. Do not feel guilty while doing this. The only way you can adequately assist your son is by first tending to your core needs.

Suggestion 2: Engage your immediate family and explain to them your son’s situation if you have not already done so. Make sure that everyone is on the “same page” about his illness and what they can do to support him and contribute to his wellbeing. Small accommodations really do go a long way. Enlist your husband and other child’s support, especially in household tasks that are of a lower priority compared to your son. This will enable you to have more time and energy to devote to the present situation.

Suggestion 3: Be your child’s best medical advocate, get multiple medical opinions, and research, research, research! In my extensive experience in dealing with medical professionals, I can confidently state that they rarely tell you the whole story regarding your child’s illness. Oftentimes, they will not volunteer crucial information that would help you better understand your child’s condition. (An example of this is when a number of consecutive specialists failed to mention that I had deformed vertebrae in my thoracic spine – which in part explained why my upper back was in pain – for EIGHT years.) Be sure you understand the specifics on WHY your child has this condition and what the parameters, ramifications, and treatments of this illness are. If you do not thoroughly understand your doctor’s analysis, feel empowered to ask as many questions as needed until you fully comprehend the extent of your child’s condition. No new information is “too much.” Your son is depending on you to know the intricacies of his illness, since children are not able to fully understand complex medical situations until they are upperclassmen in high school. (I am saying this as a person who underwent three major operations during my adolescent years. When I had a back operation in early middle school, I could only comprehend a very limited amount of information regarding my situation, and depended entirely on my orthopedic surgeon and parents to make the right choices on my behalf.) If your doctor cannot sufficiently answer your questions, consult textbooks and the internet. (An example of this is when I had abdominal pain during high school. A GI specialist we consulted tested me for celiac and lactose intolerances, both of which were negative. Satisfied, he felt that we did not need to pursue any more food-related tests. Afterwards, my mom researched dietary specialists and met with a nutritionist who diagnosed me with a food processing disorder that the GI specialist had dismissed as being “too uncommon to warrant concern.”) Lastly, it is essential that you get multiple opinions from a variety of specialists (and, if possible, at different hospitals). Doctors oftentimes have radically differing opinions on how to treat conditions.

Continued…
 
Suggestion 4: Work with your current school. Having attended a private school, I can attest to the alarming level of bureaucracy and unwillingness and/or inability to accommodate disabled children’s needs that you are encountering. While it is true that private schools are not legally obligated to accommodate students with special needs, you are paying tuition and should have some level of influence. While working with the faculty there, opt for the least “inflammatory” plan of action first. (It may be tempting to threaten legal action, but this should only be done as a last resort and if public school or homeschooling is not an appropriate option for him.) Politely but firmly request a meeting with all of your son’s teachers and other relevant faculty members. Come to the meeting with an easy-to-read sheet that directly and concisely explains your son’s medical condition and the direct affect that his illness has on his ability to attend school, focus in class, complete assignments and assessments, etc. On the bottom of the sheet, list a set of accommodations that would address his needs. For instance, if your son’s illness impairs his ability of focus during a test, request that your son have extended time on assessments and be placed in a separate, proctored room that is noise-free. If your son has missed school and needs time to make up his work, draft a reasonable schedule for him to complete that work that all of his teachers agree on.

Suggestion 5: Simultaneously meet with the appropriate faculty at your public school. Show them the same sheet that explains your son’s condition and outlines his necessary accommodations. If they can commit to effectively supporting your son, it may be a better idea to have your son attend public school instead. (Unfortunately, many public schools lack the appropriate faculty and time to tend to students with special needs. As someone who has also attended public school and volunteered as an assistant teacher to students with special needs, I can affirm that many public schools lack the resources to adequately support students with special needs.)

Suggestion 6: Explore alternatives to your son’s current school and public school. Some states are initiating online K-12 education programs. I think online compulsory education is an absolute necessity given the number of students with disabilities who cannot function well in a traditional setting. (It would also be a worthy option for “regular” students who desire flexibility in their daily schedule.) Some universities and community colleges offer programs to help students with special needs as well. (For instance, I required extended time for my standardized tests as a senior in high school because of a degenerative spine condition. My private school was unwilling to proctor the exam, and the local public school was understaffed (despite offers of monetary compensation in both cases). Fortunately, my mom met with the disabilities director at a community college who graciously agreed to proctor me for free! (This was perhaps the tenth community college she had contacted.) Moreover, the community college she worked at was a 45-minute drive from our house! Even though it may seem that your local community is unsupportive, if you explore alternative options elsewhere, you can come across wonderful people who are happy and willing to help you!)

Suggestion 7: Look into the book “Saving Sammy.” I first heard about PANDAS through the show “Mystery Diagnosis.” In one of the episodes, they chronicled the life of a boy with PANDAS and his mother’s quest to diagnose and treat her child’s condition. The mother wrote a book titled “Saving Sammy” and also runs a website.

Suggestion 8: Join support groups, be they in real life or online. They can often be an invaluable source of information.

Suggestion 9: After you get a better handle on your son’s current predicament, plan ahead. When it comes time for your son to take standardized tests for college, secure his accommodations TWO YEARS AHEAD OF TIME. The committees that review requests for accommodations are VERY bureaucratic and slow in getting back to you. Moreover, they could very well request additional information for medical situations that are rarer or less well understood before granting your child accommodations. Also, there are a number of universities that have excellent disability programs. Since you are Catholic, I would HIGHLY recommend that your son apply to Villanova University in Pennsylvania – it truly has a world-renowned disabilities program and the director there is VERY understanding, empathetic, and more than happy to help! As someone who was accepted there, I can earnestly vouch for their commitment to people like your son and I. (And this is coming from a non-Catholic.) 🙂

If you have any questions, feel free to ask me. 🙂

I hope I was of help, and I wish you the very best of luck!
 
Also – Your son may well be feeling “inadequate” or believe that his situation is “hopeless.” Be sure to address his emotional needs in addition to his academic needs. Empathize with him and offer love, support, encouragement, and optimism. Make sure HE knows that YOU are his enduring advocate and reassure him that any imposition his situation has on your family is *not” his fault. (Children can often sense when parents are distressed or are harboring guilt/anger/resentment and internalize those feelings.) Tune in to his actions in addition to his words. Oftentimes, children will not verbalize emotions that they are struggling with, especially during trying times. Instead, their behavior will reflect their inner feelings. This is especially the case if new unsettling behaviors emerge. However, I do know that it may be difficult to differentiate between “acting out” while in emotional distress and an episode of PANDAS. Perhaps family therapy sessions would be a good idea.

In addition, be sure to address the needs of your other child. Since your son with PANDAS is likely consuming a good amount of your time, your other child may be feeling neglected and come to resent you (parents) or your son. Proactively explain to your child what your son is experiencing while affirming your love of him/her. It would also be a good idea to set aside one-on-one time for your other child.
 
I carry this cross, as well, my friend. I would be more than happy to chat with you. We just got through our second episode. My son brought home strep and I have a PANDAS daughter (5). She spiraled quickly, BUT… it only lasted two weeks this time as we got on Augmentin immediately for 14 days. On the 3rd day I thought she was getting worse. I stuck it out and now the skies are parting and WOW there she is - MY daughter - relaxed for the most part, and happy again. It was a very very rough two weeks. Teacher was absolutely shocked to see the effect that the antibiotics had. We have a very supportive catholic school in Norfolk, VA. We will now move to our daily dose of Zythromax which is taken as a defense and is anti-inflammatory by nature.
 
Wow, what a tough situation. I also have an autoimmune disorder (ITP–my immune system attacks my blood platelets) and am sick ALL THE TIME. It is a huge burden, and people just don’t understand.

I guess I don’t have a lot of advice, other than that public schools aren’t really that bad. I’m a teacher who is currently just working as a sub, and I do both the public schools and the local Catholic school. While the Catholic school is great, there isn’t really anything wrong with the public school, provided there is good parenting in the background. I wouldn’t worry too much if you have to go that route.
 
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