View Full Version : Children with illnesses

06-25-2011, 05:13 PM
Hi everyone,

This is one of those threads that don't really have a lot to do with the disease but it can/does have a lot to do with our lives and stress levels. I have noticed that many of our members have children that are ill and I wanted to get an idea of how many. If nothing else it will allow us to get to know our family a bit better but it could also allow us to give/get support in another way.

Here goes: Which of you are dealing with ill children as well as your own disease. If you don't mind sharing what is wrong please do but if it makes you uncomfortable then just let us know if it is an AI related disease or something else. I have come to believe this may be a bigger issue then I had thought before. I have my own beliefs as to why but I will save that for later.

I look forward to hearing from/learning about each of you a bit more

06-25-2011, 05:30 PM
Hi Marie,

Such a great thread for members who's children have illnesses like you said but this will be a thread i won't be able to get involved with to much never having children myself as you know.

So i hope member's get alot of love and support from this great thread Mari's done.

06-25-2011, 05:40 PM
I have a 19 year old daughter with undifferentiated connective tissue disorder, Ehlers Danlos syndrome, dysautonomia, adrenal insufficiency, eosinophilic esophagitis, a history of hemiplegic migraines and asthma. She is on methotrexate, prednisone, fludricortisone and plaquinil for the autoimmune stuff. I think she will eventually be diagnosed with SLE. She is disabled to the point that she cannot attend college or work, and I have not been able to work for 5 years because she has needed a fulltime mom. We are in a financial place, in part due to medical expenses where I must get a job - but we don't want to leave our daughter home alone all day.

06-25-2011, 07:02 PM
I have a six year old son with autism and my twelve year old has bipolar disorder and was recently diagnosed with aspergers.

I hope I am not being a killjoy to the op but I have often wondered if there is a link between a mother with an AI disorder having children on the spectrum.

06-25-2011, 07:12 PM
I have a six year old son with autism and my twelve year old has bipolar disorder and was recently diagnosed with aspergers.

I hope I am not being a killjoy to the op but I have often wondered if there is a link between a mother with an AI disorder having children on the spectrum.

Not a killjoy that is why I opened this one. I may be wrong because I have quite a bit of cognitive damage but I think there is someone else on this form that has a child with aspergers. I guess we will see

06-25-2011, 07:45 PM
hi my name is kim l i have 1 24 year old with borderline personality disorder and partial blindness that is my son josh i have my daughter sarah who is 23 with post traumatic stress and ocd and depression and endometriosis, asthma, and bladder problems and fast pulse rate, i have a 15 year oldnamed mikaela with aspergers and intellectual impairment and depression all 3 of my children where born premature josh at 36 weeks sarah at 35 and mikaela at 31 sarah shows all signs of lupus but but bloodwork negative mikaela has been tested and her blood work says she is on borderline she could get it or not. having a child with aspergers is challenging and often stressful anyone needing to talk about there child with aspergers i am willing to be a support hugs kim l

06-25-2011, 09:08 PM
Hi I have two grown children with severe mental illness. One has depression with psychotic features and the other with bi-polar with psychotic features and 4 learning disabilities.

06-25-2011, 09:29 PM
This is a great thread. Even though the docs try to say that this stuff isn't hereditary, we seem to be proof that it is. My mother and aunt had AI symptoms.
Here is my contribution of info on my kids:
Heather- 34- Healthy so far
Hillary - 32 - Lactose and Gluten intolerance, Polycystic Fibroid Syndrome - her son David is healthy.
Tom - 29 - Healthy as a horse former Marine
Kayla - 26 - Severe Asthma & Allergies, has one working kidney, IBS, possible gluten intolerance. Her son Kyle has Asthma & Allergies, possible gluten intolerance.
Meghan - 24 - Endometriosis, mild asthma Her son Ryan is healthy.

I really think that it is good for us to compare notes like this. It is important that our kids know about this and what to watch out for.
PS - I forgot to mention that I had an uncle who had Parkinson's, and his daughter had MS - interesting, huh?

06-25-2011, 09:51 PM
I have three children. My oldest son is healthy. Middle son has a submucous cleft palete, sensorineural hearing loss and Raynaud;s Disease. Daughter has eczema.

06-25-2011, 10:49 PM
I better post my response now before I forget or Mari's going to kill me! lol

Mia - POTS (Postural Orthostatic Tachycardia Syndrome) a type of dysautonomia which a lot of people outgrow, but it doesn't seem that she is going to
Zachary - Spinabifida Occulta, Hemihypertrophy
Patrick - severe allergies, lactose intollerent, possibly gluten intollerent, stomach issues aside from those, mild dysautonomia, currently negative ANA - but exhibits a lot of the same issues i had as a child (severe growing pains, very sun/heat sensitive)

06-25-2011, 11:36 PM
my daughter bessie, is 13 - hayfever, learning issues, pdd.
my son isaac, is 12 (tomorrow) - hayfever, stomach issues, learning issues.

i have had both children seeing pediatritions for years. diagnosis is not forthcomming.

06-26-2011, 03:14 PM
I have a daughter with SOD/ONH.

Septo optic dysplasia... she is missing the mid section of her brain (Septum pellucidum) and has under developed optic nerves. Astonishingly she is a very intelligent girl, exceptional at maths but has what can only be described as mild autism. She has zero concentration. She can have random emotions, or none at all. She gives the appearance of a very flat out logical child, it is rather aerie and a part of her condition. We go to the specialists via plane in july... they will be able to shed a bit more light on things now that she is able to communicate more effectively regarding her own body and emotions. A lot of children with SOD/ONH need to be on hormones for growth... so far she has avoided that, but I think this year might change as she is tallish, but still fits into size three clothes (she is 6). And she is tired all the time. Unfortunately... she has also started having joint pain : (
In her jaw, shoulders, hips, knees and ankles. Poor little thing. Next year she will have surgery to correct her blind eye... so the kids will stop teasing her about being cross eyed.

This issue has just come up with us... at 6 years old they are getting graded and having report cards sent home. She was marked down in PE because she can not run or jump properly!!!!!!!!!!!!! Her condition makes her muscles weak!!! She wont be able to run or jump properly for sometime to come! I was so very angry. The report card also reflected how little time they spend with her or how little time they use to test her... she gets no special assessment... just the same as all the other kids. Of course she wont be able to write under pressure. SIGH. Im so cranky about it. I am taking her out of school to put her in a montessori school... but places are limited. : /

Anyway, sorry for the rant. Sometimes it seems so impossible having lupus, working and having a child that needs special attention to try to keep up with the other kids at school.

06-26-2011, 05:39 PM
hello giggle yes i understand how you feel my daughter has been judged in pe because of aspergers her co ordination is not good and neurologist did not want her doing lots of sports so they failed her very frustrating mikaela went to mackay north public school 5 years ago before we moved we always had trouble with the school and there understanding her we live in sydney now but still visit mackay sometimes hope things work out good luck i have got mikaela placed in distance education it was the only way for her not to be judged and bullied hugs kim l

06-26-2011, 09:45 PM
Wow, this is really eye opening! It's especially interesting that there are so many illnesses related to mental functioning. The autoimmune stuff I expected, but not the brain stuff. I guess the second part of this question is how do you all cope with your own illness and your children's needs. I know for me, my daughter always comes first.

06-26-2011, 11:41 PM
gizmo with me it is a balancing act my children always come first so at times my own health suffers but my lupus has to take second place to my children and my husband thatis just the way i am hugs kim l

06-27-2011, 01:50 AM
Kim, Mackay is terrible isnt it? My daughter goes to Fitzgerald state school in North Mackay. I cant believe how many schools there are in such a small area and they are all terrible. We cant wait to be out of here!

06-27-2011, 03:19 AM
When I was fighting schools and going to endless psych apps and school meetings, I was sick a lot and became depressed. I have 4 kids and eventually homeschooled the two with mental illness. That went very well. I did that for 6 years and I had less flairs . Imagine that.

06-27-2011, 06:11 PM
yes i finally got the okay to distance educate mikaela from home yesterday so she will be homeschooled from now on this will mean more work for me but worth her not being bullied and giggle mackay schools were not good especially there support units, hugs kim l

06-30-2011, 05:39 AM
This is really intriguing, lots of us have so much in common. I am impressed by the courage it must have taken to take on homeschooling on top of your own health issues. But yes, its different when its your children, I know I'll push myself much harder for them.
My youngest daughter (7) was diagnosed with Aspergers and high levels of ADHD when she was 4yrs old. I have often felt I never fell pregnant again b/c the universe knew I'd need both hands for her ;) It definitely hasn't been easy, very tiring, and I wish I could provide my kids with more experiences (physically). On the positive, I think my own health & social issues have given me a unique ability to empathise and connect with her. She is doing fabulously atm.