Small Child With Pots

[catina1996]

My husband and 4 year old have POTS. I am having trouble homeschooling her due to her fatigue, ADHD, and pain. We are currently 2 weeks behind. Anyone else have a small child with this? Any ideas to get school done everyday? How do others cope with multiple family members with this? FRUSTRATED!!!

[crowebirds]

Although my daughter had Dysautonomia since she was born, we didn't find out about it until much later. Based on her age, I am not sure what you mean by "homeschooling" and being behind. But I can encourage you to not "school" her every day. At the age of four we were working with our daughter on learning of ABC's and counting. She was very smart and learned very quickly; however, we worked with her in small spurts. If she was in the mood and focused we would spend time working with her, but if she was not in the mood or totally distracted, we didn't. You can also use opportunities that arise for training. For example, when our daughter was in time out, we would have her count to five. When she was done counting, she was able to get out of the time out chair. As she progressed in skill and age, we would increase the numbers 1-10, counting by 10's, by 5's, by 2's, then counting to 100, you get the picture. When we went on long trips, we would sing songs that involved numbers and abc's.

Keep it fun, on her timing, and don't expect too much, too soon. If you live in the US, have her tested by the school by the time she is five to see if she needs an IEP or a 504 plan. The sooner she gets assistance (if needed) the better off it will be for her in school.

Blessings and Merry Christmas!

Robin

[catina1996]

Dont take this wrong, but I am glad someone else has a small child with this. We felt so alone in this. Everyday is a new challenge. I am a teacher and have chosen to school our daughter at home for preschool. She cant attend a regular school because she is sick most days. Thank you for the advice, I will have to slow down a bit and take more time with her. Maybe I expect too much from her, I just want her to succeed. What are they doing for yo0ur child? Ours is on Midodrine 10 mg every 4 hours during her awake hours. It doesnt seem to be helping. Thanks for answering.

[crowebirds]

Dont take this wrong, but I am glad someone else has a small child with this. We felt so alone in this. Everyday is a new challenge. I am a teacher and have chosen to school our daughter at home for preschool. She cant attend a regular school because she is sick most days. Thank you for the advice, I will have to slow down a bit and take more time with her. Maybe I expect too much from her, I just want her to succeed. What are they doing for yo0ur child? Ours is on Midodrine 10 mg every 4 hours during her awake hours. It doesnt seem to be helping. Thanks for answering.

This is a terrible condition in that nothing is "normal." It is one thing to help an adult to go through it, but quite another for a child to have to go through it. Even though my daughter had a lot of problems as a baby, we did not realize she had DYS until just this year. We found out in 2006 that she another condition called Cold Urticaria. Without her medication she would break out in hives (wheels and welts) 24/7. She has been on three antihistamines for the Urticaria. Her symptoms and response to antihistamines did not fit the criteria for Cold Urticaria and she would developed new symptoms every time we went to the doctor in Birmingham, AL (every 4-6 months). We took her off one of her meds for 30 days and she digressed very quickly. After being reassured by the doctor that the med was safe, we put her back on it and she returned to good health. Over a year ago another one of her meds was removed from the market. She went from May until October of this year without it. Once again, she digressed very quickly. She has not fully recovered despite being able to return to the same med just in the adult version. In part, it was because of this that we were able to figure out that she had DYS. We have only known for 4 months now, and have only just found a doctor willing to work with her. In researching the condition and symptoms we were able to realize how all her symptoms as a baby were part of the DYS.

Our daughter is completely intolerant to cold temps. We too are held hostage to our home in attempts to keep her warm. TLC, my daughter, goes to school, goes to church and goes home. She has problems even at school and church. I spend a lot of time picking her up from school when she gets too cold and taking her home. Church is more of a problem with over stimulation which triggers migraines and anxiety. She has been put on an inhaler and Propranolol for the DYS (heart & migraine) symptoms and we are waiting for her next appt, in April, where she will have a bunch of tests read.

Well our daughter doesn't do too well getting hot either. We have a fine line of control it keeping her at a constant temp.

Though her antihistamines are not for the DYS, they have definitely helped. The meds she takes help to suppress Acetylcholine which can be a problem in both urticaria and DYS.

I find it curious that your husband and daughter were diagnosed within three years of each other. Is this something new for your husband, or did he have it for a long time without a diagnosis?

I believe that I read you came from Nashville, TN to Florida in another post. Did you move this year? Was it following the floods? If it was, I would have your daughter tested for parasites if it has not already been done. Our daughter had contracted shigella (sp?) as a preschooler in daycare. The doctor still checks her for parasites.

Our daughter is now 12 years old, she has two separate rare conditions. We have had to accept a "new normal" for our lives. We have adjusted. She is still adjusting as she wants to be able to do everything in middle school. We remind her that she is normal like everyone, just a different normal.

You are a great wife and great mother. You are doing a great job. Your are always welcome to contact me to vent and/or talk.

My prayers are with you. Many blessings and Merry Christmas!

Robin

[catina1996]

Thank you for your reply. I hope you and your family had a great Christmas. We moved from TN before the floods. We came back due to lack of work for me, I was laid off. My husband went for a while without a diagnosis until a dr. in TN finally recognized POTS. Our daughter started to fall down and not get up for a while when she wa 16 months old. The doctors said she was weak and would be fine. I knew something was wrong and I was being ignored. When we moved to FL I told her new doctor about it and she sent us to a cardiologist and neurologist. She was diagnosed with POTS. Adjusting and coping with 2 with POTS is the hard part. Some days are overwhelming! Church attendance has become a rare treat. My family seems to keep getting respiratory colds and viruses so we are limited on outdoor activities this winter. It has been cold, snow flurries this morning!!! Looking forward to the times we can regularly attend church again. I am praying for your child and your family. Thanks for listening.

Catina

[lissy]

I have 5 children and always worried if they somehow were passed this from me ,and none of them showed any signs except my last born and when I brought her home from the hospital she seemed very weak to me and she will be 3 in March she is not interested in learning and potty training has not been going well either the physical things I notice is she gets tired quickly and has pooling the same as I do...I have not mentioned it to the doctor yet because I was only able to get my answers at Cleveland Clinic and I would hate to put her through everything I have been through. She is pretty active and I will investigate this further in the near future I pray she doesn't have it and I hate any child would have to suffer like this.

My 4 year old daughter has been complaining of leg pain and being tired alot of the time so I have been worrying alot and will probally be in the doctors office pretty often.

***and I almost forgot things to help with the learning, shes probally learning and absorbing more than you realize with my 4 year old when she was 3 I tried and tried to teach her letters numbers and all the basics and it seemed like she possibly had a learning disability but one day literally she sang her ABC'S and after I gave her a pencil and showed her how to write her name I sware the next day she was writing her name I couldn't believe it she is so much into learning about everything now its amazing I think its like a switch just make it fun and encouraging. She made student of the month last month Pre-K 2 1/2 hours a day and it keeps her excited about learning. Your daughter may not feel well often but maybe if you were to find a preschool program a few hours a day for only 2 days a week she may really enjoy it. Sick kids go to school too, just for socialization might help her in the long run. I may be totally wrong she may be too sick and sorry if thats the case just some suggestions.

[houswoea]

Your daughter could qualify for accommodations for health issues, if you wish. I realize that you might just like homeschooling for now until you get a handle on her health stuff, just thought I'd mention it. She could go to just an hour a week even, just for fun and to be a normal kid. But I'm all for parent's choice. Or there are probably some programs that have play groups for medically fragile children too!

I don't have kids, I just like them... ECSE/ECE major Before I had POTS I was learning teaching in a preschool room, and there was a child (5 years) with (from what I can tell from what they told me) something at least similar to dysautonomia. She did really well, and they included her in crafts and song time and things, and then her parents took her home after a while. She liked it!

But like I said, totally your choice! I hope your child gets better and you can find a treatment that is more reliable!

[catina1996]

Thank you for the advice, I am working with a pre-k teacher who may let her come to class for a bit when she feels good. If you think your kids have symptoms, dont ignore it. I tried to get my daughter's dr in TN to listen and they ignored my concerns for 2 years. When we moved out of TN her new dr was extremely concerned at the first mention of her symptoms. We are finally getting somewhere. Dont ignore your motherly instinct, we know when something isnt right. Our doctor cant do much, Midodrine didnt help and he just said it is something we have to deal with. We are going day by day.

[catina1996]

Your daughter could qualify for accommodations for health issues, if you wish. I realize that you might just like homeschooling for now until you get a handle on her health stuff, just thought I'd mention it. She could go to just an hour a week even, just for fun and to be a normal kid. But I'm all for parent's choice. Or there are probably some programs that have play groups for medically fragile children too!

I don't have kids, I just like them... ECSE/ECE major Before I had POTS I was learning teaching in a preschool room, and there was a child (5 years) with (from what I can tell from what they told me) something at least similar to dysautonomia. She did really well, and they included her in crafts and song time and things, and then her parents took her home after a while. She liked it!

But like I said, totally your choice! I hope your child gets better and you can find a treatment that is more reliable!

Thank you! She is learning but some days are impossible. The doctor said it is because of blood pressure drops. We are learning and have included Saturdays in order to get through the lessons. She is about to have some class time with a friend that teaches at a school.

[masumeh]

I don't know much about POTS in a small child. I got it later, in my late teens/early twenties. But I am a teacher, so maybe I can give you some teaching tips that could apply to any child. At age 4, learning should be fun. It should involve games, all games. Even a worksheet for a 4 year old should look exciting to them and have a point, like finding something or coloring in something, to motivate them. If they aren't interested, then find something else which does interest them. Let them take the lead, and your job will be much easier and more effective. Where is your daughter at with letter recognition, patterns, logic, story comprehension, and number recognition? There are tons and tons of games you can introduce for all these things...computer games, crafts, board games, etc. I like "Jump Start KG" a lot for early childhood. It's really engaging and very effective. You can also do crafts and hands-on things. Make pancakes out of letters and eat them together, point things out about nature when you are outside together, read to your child when they are tired enough to sit for a few minutes..

My daughter starting reading at 3 1/2, and she was learning letters, etc. by age two, and she is now 7 and reads fluently in two languages and is learning a third language. I can tell you that she led the way with almost everything about her learning process, but I had to provide the games that could enrich her play. Computer games were really useful, and she started on them at age late 2/ early 3. We got her a tiny mouse because of her tiny hands, and otherwise she had no problems navigating the games. She loves learning, and she pushes me to teach her more and more about science, languages, literature, and math. She thinks it's all fun because it was never a chore, it was always bonding time between me and her, and it was always her interest that spurred the next step.

I've taught all ages, from KG to 50 year olds. I've taught in classrooms, homes, prisons, and mental hospitals. The number one tip is to use responsive teaching methods. Know your student's motivations for learning and what engages them. For some students, it's working toward a goal. For others, it's the relationship with you, the teacher, or with other students. For some, it's competition. For others, recognition and reward. For a student with ADHD, you need to give plenty of breaks to jump around, and make lessons short. Repetition will take on a different meaning for you, working with ADHD students because you need to connect dots of past, present, future with them more for them at the beginning and teach them how to make those connections themselves. Equip them with concentration techniques, and make sure the environment is not distracting (not noisy, decorated, etc.). But how does your child have and HD component with chronic fatigue??? I would be really careful about this label with a 4 year old.

Good luck!

[Godsgal]

I too want to homeschool my children and a good homeschooling friend of mine always encourages me to take my time and give myself and my kids a break during difficult times and pick back up when things get easier. That is the beauty of homeschooling. I've learned with my son that the more fun I make it, the more interested he is. And the more pressure I put on him during moments he is uninterested or not in a good mood, the more frustrated we both become and he's not learning anything.

My son is 3 1/2 and he has learned all letters, shapes, sounds of letters, and reading words from a great site called starfall.com It is an incredible, educational, fun website that kids love and it's a great tool to teach your child in the home. I can't say enough good things about it.