ANGRY

[jenbug]

Okay, I know this probably isn't a huge deal to some people but it is to me as I have severe OCD (especially with approval). I grew up in a very old-fashioned family that only goes to the doctor for life-or-death situations. In fact, my dad has seizures and has only gone in once to the doctor for high blood pressure med and is still having them but isn't going in...Anyhow. Today I was talking to my mom about me thinking allergies, infections, etc are causing some of the kids' problem. She was like, "Well, I think some people today just try to find answers to "normal" behavior when they don't like it." I was like ...huh. She isn't around my kids 24/7, just 3 or 4 times a year. I grew up with similar issues and they didn't take me to the doctor for it. In fact, I had asthma at around age 7 or 8 and they didn't take me in until I was about 13 (for a mandatory HS physical) and that is when I got an inhaler and I had severe bronchitis at the time too, but it just plain infuriates me when they say these discoraging things to me!!! I would NEVER seek out medical help for my kids if I didn't think they needed it in the first place. I knew when I was young I was sick and different from everyone else, and so are my kids! Having them be so rude just irks me to no end...they have no clue nor did they when I was a kid. i don't think they even know what mental ###### I went through with my OCD, sensory stuff, and autoimmune stuff. they just had this attitude of "oh, they will outgrow it eventually." Whatever....

 

Sorry for this tirade, but I had to get that off my chest to someone who understands! Well, I am going to take care of my children my way and not even include them in the knowledge anymore...

Edited June 8, 2011 by jenbug

[Ozimum]

Atta girl! Do what you need to do. No guilt! Trust your gut! And, vent anytime.

 

If you can, consider getting some testing done for yourself as well. My little local network of mums is discovering Vit deficiencies and IGG stuff in ourselves (and partners too) and we're getting good outcomes from treatment, as well as for our kids. (For eg. the Biomed/DAN doctors are good with this stuff.)

[dcmom]

Jen-

 

There are many moms (and dads) on the forum who have had to push friends and/or relatives to arms distance, because of this. It is TOO much to deal with a pandas child, alone have to listen to non supportive advice.

 

Since this is your family, I would consider giving them a copy of Saving Sammy, along with a note stating that any support is appreciated.

 

Hugs!

[Ozimum]

I've just read your other thread and wanted to add that I also recommend Dr Ken Bock's book "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders." (He's one of the Biomed/DAN doctors.) He also discusses PANDAS.

 

Hang in there!

[ShaesMom]

Hi Jen,

 

You are not alone in the family denial issue. We deal with it CONSTANTLY. We have lost what we thought were solid friendships since our DD became so ill. People are just to naive or to busy with their own lives to deal with it. We have learned over time who truly cares and who doesn't. We share with those whose we know are being sincere when they ask and give those who we doubt the standard "she's doing great" reply. It can be a very lonely place when you have chronic illnesses in your home. I wish I could tell you that they will eventually "get it" but they probably never will.

 

Reach out to those of us who have BTDT and never think twice about sending me an email or phone call.

 

S

[tpotter]

I've just read your other thread and wanted to add that I also recommend Dr Ken Bock's book "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders." (He's one of the Biomed/DAN doctors.) He also discusses PANDAS.

 

Hang in there!

 

It was this book that gave me my "A-ha" moment. PANDAS had been suggested to me about a year earlier for my DS, and I had also attended a workshop where someone was discussing PANDAS. But, when our holistic chiropractor suggested this book (without telling me specifically why), and I got to the part ab out PANDAS (the girl who was having rages,) I knew that's what I was dealing with.

 

And, we are also one of the families who keeps one family member at arm's distance (actually a little further) because of total lack of understanding (you wouldn't believe what she accused me of!)

 

Good luck, and do what you know is right.

[jenbug]

Thanks sooo much everyone for your encouragement. It is tough at times and very hurtful especially with family, but I keep trying to think it WILL get better. I have that Dr. Bock book and Saving Sammy on my Kindle now. My mom is a reader like me, so I might suggest it to her too.

[jenbug]

Thanks sooo much everyone for your encouragement. It is tough at times and very hurtful especially with family, but I keep trying to think it WILL get better. I have that Dr. Bock book and Saving Sammy on my Kindle now. My mom is a reader like me, so I might suggest it to her too.

My oldest brother had a step daughter who commited suicide from depression. My other brother';s dsaughter's OCD was so severe, they had to take turns sleeping over her house 3 hours away. Yet when I try to tell them about my kids, I get, "He's fine, you watch too much TV.!!"" Can you believe it? I want to slap them, it makes me so angry. So I don't tell them. What a stupid, senseless response. These are the "ignore it and maybe I won't have to deal with it," crowd. I SOOOO get what you're feeling!

 

Nancy

 

Wow, Nancy--I am so sorry for your loss That is truly heartwrenching! When I was 14 I attempted suicide due to the nonstop thoughts wearing me out and scaring me over years and years and from physically being sick with asthma, allergies, constant colds. ect. You are so brave and wonderful to be searching for answers for your children. Your children will thank you some day

Edited June 9, 2011 by jenbug

[NancyD]

That was my daughter who was profiled in KB's book under a pseudo name. The violent rages are gone now (as are her tics) thanks to abx and HD IVIg. He is now treating both of us for Lyme and Bartonella, which I believe may have been congenital for DD (now 15)..and possibly induced her ASD symptoms early on. She is no longer on the autism spectrum and her PANDAS has been in remission for a year. She has lots of friends now and she is catching up socially/emotionally. She has also been on the honor roll for over a year. I think her anxiety and scrupulosity (only symptoms left) are caused by Bartonella. I encourage everyone who is having difficulty keeping the PANDAS symptoms in remission to be tested for Lyme and other co-infections by IGeneX. I wish we had done this many years ago!

 

I've just read your other thread and wanted to add that I also recommend Dr Ken Bock's book "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders." (He's one of the Biomed/DAN doctors.) He also discusses PANDAS.

 

Hang in there!

 

It was this book that gave me my "A-ha" moment. PANDAS had been suggested to me about a year earlier for my DS, and I had also attended a workshop where someone was discussing PANDAS. But, when our holistic chiropractor suggested this book (without telling me specifically why), and I got to the part ab out PANDAS (the girl who was having rages,) I knew that's what I was dealing with.

 

And, we are also one of the families who keeps one family member at arm's distance (actually a little further) because of total lack of understanding (you wouldn't believe what she accused me of!)

 

Good luck, and do what you know is right.

[airial95]

Jenbug

 

We have all been there with disbelieving family/friends. My mother insisted that my son's issues were "just how boys are". The 2 hour screaming match (pre dx) while waiting in Customs from our family Mexico trip didn't seem to change her mind either (although - it's a great way to get through customs really quickly!! They couldn't wait to get us out of there!)

 

It wasn't until they had to take my son for a couple of days when both my hubby and I were away on business (post dx) that she came around. She called me in a panic, she didn't know what to do, my son was raging like a maniac, refused to wear clothes and was peeing on everything in sight all over her house. My initial response to her panic "That's just how boys are". I got a prompt apology and unending support now from my folks.

 

Most people don't understand unless they've experienced it first hand. It's unfortunate, but true. If your mom's a reader, Saving Sammy is good, and there's a new e-book for the Kindle "Out of the Fog Into the Light" that was very insightful as well.

 

Good luck!

[jenbug]

Wow..that sounds like my kids! My son has started peeing on things (mostly in secret though). I figured it was a manly "mark your territory" thing. LOL. However, I am suspecting he may have a UTI now. He got up last night twice (and we had been trying to potty train him which he was refusing)When he peed both times he was yelling "owie, it huuuuts." So, can strep cause UTI?

[airial95]

I don't know about strep causing UTI, but one of our first indicators of strep is potty accidents, wetting the bed, and frequent urination. It is very reminicient of a UTI - but it's always turned out to be strep throat.