qannie47

You touched on what has always been at the heart of a lot of my stress.....
 
"AM I DOING THE RIGHT THING?" Geez, just saying that raises my blood pressure.
 
Here is one of my "Take aways" that restored some of my sleep.
 
Truly, it is highly unlikely that anything that you do, a decision that you make in the quest to help your child that will result in a irreversible result that can't be undone.
 
In fact, this forum is filled with examples of "oops". I do not think you will find the "irreversible oops".
 
That is the good news... The even better news is that we, the parents of Pans, Pandas children are so well read, so well researched , that we often make better decisions, and if not, we move on and learn from it...
 
Sleep well!!!

I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....
 
I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.

I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....
 
I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.

I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....
 
I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.

I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....
 
I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.

I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....
 
I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.

I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....
 
I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.

Smiling. It is so wonderful to hear your joyful news!

I think that what happens is that it takes a bit of time for the antibodies to create enough inflammation in the brain before you see the result....flare. Also, I think that when my child is sick, he is actually too run down and that trumps his impulses....
 
My child rarely flares during illness...always when he is on the mend or completely recovered.
 
This to me actually makes sense if all the theories about Pandas are correct.

Blood work is all very helpful, and a must do....but please know that many Pandas children look perfectly normal on a piece of paper...ex: my son had strep for 6 weeks, verified by repeated rapid strep tests, and when ASO and Anti-Dnase B titer test was run 4 weeks later, he looked on paper as if he had never had strep! This is because some Pandas kids do not make antibodies...(part of the problem for some).
 
My point: run the test....but if they come up clean, do not stop there. I would recommend 6 weeks of abx. It seems that the real proof is often in the "way a child reacts positively (symptom reduction) to abx (eradication of infection).

Dr. Greenblatt was great. His initial dx for my son was this:
 
1)Anger/Irritability (not ODD) as a result from food allergies: Dairy (biggest culprit), Gluten & Eggs. All came back positive on IGG test.
 
2)ADHD: Possibly co-morbid to food allergies: To be determined over how he does over next 3 months. (on a wait and see because a) history on husbands side of the family and most of my sons labs came back pretty clean, with the exception of low on lithium, calcium and magnesium. (big shocker)
 
3) Possible Learning disabilities: mainly because school/learning has been SUCH a challenge. He explained that WE MUST have him tested, because diet change and supplements can't fix a learning disability, and even if the diet is helping immensely with behaviors and adhd symptoms, a LD will cause him so much inner turmoil, it will negate any strides we make with diet, etc...
 
Regime to start: Vit C (my son has none in his body apparently from food allergy), Calm 1x day & Liquid Lithium (not psych med form) 1/2 dropper 1x day with dinner.
 
He is doing more testing to dig deeper, a dna Genecept Assay, and another essential acid test.
 
We will see how he does monthly.
 
Forcast: With no LD, a very high chance that no psyche meds will be needed.
With LD, 50% chance or slightly higher that no psyche meds will be needed.
 
Update: My son is doing unbelievable. There is no anger, no opposition, no edge, no meaness. He is more patient, more cooperativesmiling almost all the time, and is able to work thru his frustrations and reading grade level material much better and without all the drama. (he still hates reading, but hey, he has had a 3 year negative relationship to books so who can blame the kid). Over all, the change is remarkable. Remarkable.
 
If anybody has any questions about Greenblatt they can pm me.
 

I Pm you, but as I re-read, you may have some co-morbid conditions...That is okay, most of us do. Seriously, what stands out loud and clear is the fact that she responded well to the abx. I would insist, maybe manipulate at least a 6 week regime of full strength dose of abx. Start there. Try and get her symptoms somewhat under control. Maybe even a steroid burst. If she responds again, that will be a lot of info. Second, I would work quickly to find a doc whom is experienced with neuro-psyche conditions associated with illness. Those swollen lymph nodes, My Pandas child had them until he was in the healing phase of Pandas. Always swollen. Not saying Pandas, exclusively, because swollen lymph nodes are indicators of a body that is sick. I cant underscore enough the importance of trying antibiotics to get the symptoms under control.

More on my saga...I am now about one week into a dairy free gluten/dairy (casein)/egg for both my children. 2 1/2 weeks really, but it took me 2 weeks to realize my mistakes.
 
My non Pandas child: Today, he had his second CBT session. After the session, the therapist said, and I quote, "I have to admit, I was very skeptical about food allergies, the research is not there. However, I can not deny the difference in your son. He is a completely different child that I met last week". She is re-opening her mind.
 
Pandas child: His reading has jumped up big time. His focus and ability to dissect words have taken him to grade level.
 
While Pandas is an entity all on it's own, I have to believe that food allergies are also playing a role into his ADHD symptoms. Maybe, maybe not. This will be interesting.

This is soooo wonderful, and while I am lucky that my child has never restricted food, the victories that we needed to experience sent me over the moon with joy!!!!! So I can understand how you are feeling.
 
Enjoy your victory!!!! I am so happy for you and yours.

Some of you may remember my recent posts about my non-pandas child. Rage, ADHD, ODD behavior.
 
The first round of blood work has arrived.
 
He is SEVERELY allergic to Casein, Whey, Gliadin. Moderately/High to eggs, and gluten.
 
When I google symptoms with regards to these specific allergies the symptoms are: Irritablitly, Cognitive disfunction, anti-social behaviors.
 
Now, most people would not be thrilled to discover that their child has these challenging allergies, I AM THRILLED.
 
I feel like I am on the right track...
 
Just have to figure out how you make cookies without eggs!!!
 
Thought I would share with my internet family....you all would understand my joy more then others.
 
q

So glad for you and your son!!! It is like an elixir for hope and provides great emotional nutrition when good news is shared!!!!
q

I haven't heard that tapering itself can cause an exacerbation. steroids, if I am correct, lower immune system. it's possible that your son just got sick. the thing to look for is if this exacerbation lasts less than his previous ones and if its intensity is lessened. if that is the case, I would call what you have progress.
have you tried ibuprofen? diet?
i read somewhere that IVIG takes about a year to have a full effect

I often find myself thinking, "My children, with their individual issues would have thrived so much better had they been born 50 years ago." I am not in denial that my children have issues that need to be addressed, but raising "imperfect" children in a society that has stolen childhood from children across the board has made it all much more stressful. It seems that children are no longer allowed to be children. You never see kids outside very much anymore. Everything about children's lives are so structured. The pressure to perform academically starts at age 3. In my area, academic material is about 2 to 3 years ahead grade levels from what I remember in school. Kids are no longer allowed to climb trees, ride there bikes around the block, get dirty, or free play for any great length of time. Summer Camps go by these kinds of names these days: Math Camp, Literacy Camp, Engineering Camp, etc.. Then there is the fear factor variable. Kids are being raised to be too afraid. One time, a neighbor came over, and politely asked, "Do you think it is wise to let your children climb over your fence? (the fence is about 4 feet high). I replied, "Didn't you ever climb a fence when you were growing up?". I could go on and on.
 
I feel like society wants robots, not children.
 
So, I not only feel sorry for my children, whom have to try to blend in with these new norms, I also feel sorry for the child whom came into this world without any special challenges.
 
So when even a typical starts to exhibit stress cracks, society wants them medicated.

p mom Thanks for sharing! These success stories truly transcend hope. While I had great success with IVIG as you all know. I truly felt like it was the t/a that was as important, if not more beneficial then even the IVIG.

When my ds was dx with Pandas, age 6, as I learned about this disorder all the "peculiar" momentary blips on the radar suddenly made perfect sense. Dr. k believes that Pandas actually starts to get set in motion around 18 months of age, then the "big" episode happens around age 5/6. My ds was also dx with Hypo sensory, age 4, then there was that strange period of time when at age 3, my son suddenly went from walking with a typical strike pattern to tip-toe walking. He was diagnosed with "idiopathic tip-toe walking". Meaning, the specialist had no answers for me....Then there was the time when coming off of a chronic sinus infection, age 5, that he suddenly looked "autistic": lots of spinning and not connected...His doc and I chalked that up to a reaction to allergy meds...all of these things disappeared as suddenly as they appeared.
 
When my excellent peds doc finally put the pieces together, we looked back at his records. My phone calls, citing these unusual behaviors always followed after a strep or sinus infection............
 
So yes, I think that Pandas does not exactly appear overnight as reported. I agree that many have that big sudden onset, but when one looks back, I bet many can find that what they had brewing was the "Perfect Storm".

One thing I liked about the book 'The Explosive Child'
was it asked the parent to break down the few things you will NOT
accept no matter what- what few things are you willing to 'die on the cross' for? Has to be only a few big ticket items.
When my dd was much younger and things were darker,
it was going to school. If that meant you had to wear your same OCD shirt every day, okay, but you are going to school,
I will not bend on that one. It sounds harsh, but I'm glad I did that early, as she now has this instilled.
Hitting or hurting another, no way, no how.
That's about it, the rest I can't always control, and the book has further suggestions.

STRESS: Don't forget about GOOD stress. As funny as that sounds, when learning about my children's sensory issues, I noticed that Good stress (like anticipating xmas, etc.), and Bad stress, both can be interpreted by the brain as the same: A heightened emotional response, which when prolonged, can have the same exact outcome on the body.

When I find myself wanting to rationalize inappropriate behavior with my Pandas ds, I remind myself that just about every person on the planet is carrying around their own form of a cross. Yes, some worse then others, but if I did not instill in my child that they still need to be held accountable for their actions, in fact can take control of some of their actions....I would not be doing my job as a parent. Need to add that I make this same mistake enough of the time.

I know it's different with teens and every situation is different. I have done things I thought i would never do with my raging daughter. However, I do believe I would draw the line with him taking your things. I would tell him that once he returns what is yours then you can talk about him getting his things back. There can be no discussion about anything untill your things are back in your possession. My daughter has some really big rages also. We have been to USF 3 times to work on her rages. I used to think she couldn't control her violence, but I have since learned that she is able to stop the violence with incentive. I would not allow him to manipulate you. JMHO. I understand this is a hard situation. Best of luck.
 
Dedee

mpatti-
 
Both of my girls have pandas- so I can really relate to what you are saying.
 
All I can say is that it gets better.
 
First of all, there is a grieving process- there is no way around it. But you will be sad, and angry, and then you will accept ( not accept pandas, but accept that you have to deal with this). It will not be easy, will not be linear- but you will be in amuch better place.
 
You will also learn that you, and your child are not helpless. You will treat this medically, and you will also hopefully learn psych tools. You will see your child beat this, maybe more tha once. You will find courage in their and your strength.