VentinGGGGGGGG!

[kleek3]

Hello Friends,

 

DS4 has been on a 3 week downward spiral. His tics are in full force. His emotional liability is out of control. We are avoining all sorts of exacerbating situations. People, places and things that may make him uncomfortable are out of the question. We are currently doing a combo of Augmentin/Azith. We had a second phone appt. with Dr T today.

 

Dr. T said that he wonders if there is an underlying something that we are not treating. He is going to test for cocksuckie and strep a as well as other labs. He has us doing Advil 2 tsp. 3xs daily thru Wednesday of next week. If there is a change in him. He may be a good candidate for the IVIG. He also said that a Steroid burst could be given. But, he isn't pushing this as the Cunningham test will be available late Feb and he would like us to do it.

 

Tonight, I feel as if I'm not doing enough. Should I be looking at our house for Mold? Is it Yeast? What is it that is causing this poor baby to react the way he does to life that some (most) children don't react to? I feel helpless, fighting a beast that I can't see. I loathe explaining to NON-PANDAS people that we aren't going to a function because of DS4 behavior. Its a 50/50 chance of what you will get. It's embarrasing when my son is completely melting down, acting out, freaking out. When I KNOW full well this is not my child. It's the illness that brings the symptoms out. Non-PANDAS parents dont get it!

 

I wish there was a book. First do this. Then check for that. If A doesnt work go to B. Add C if B is helping. I know at any moment. Things could always be much worse. I guess I just needed to whine a bit. Mission Accomplished:)

 

KK

[tpotter]

I would definitely look at the possibility of mold and yeast like you suggested, and also test for lyme and co-infections of lyme, such as bartonella, babesia, and others. Also, did you ever check for mycoplasma pneumonia? Have you checked for food allergies? I would really suggest that you find a good DAN or naturopath dr. Also, we are currently using an ART provider, who is able to energy test to find out what is going on.

 

If you want more information, you can PM me.

[T_Anna]

Good luck.

 

I just finished reading "Saving Sammy" today and it's helped me understand the need to be super patient.

 

Good luck, Dr. T has an amazing reputation and we are trusting him with our DS (14.5) as well.

 

As for other parents, those that are worthwhile will be patient and those who aren't may not be worth your time. You can always email the Saving Sammy Today Show clip on YouTube if you think a little education would help.

 

T.Anna

[pr40]

our ds4 had similar symptoms. ABX help only a bit. Now, on steroid taper, he seems a different child. Did you try any of the MTHFR related supplements like metilcobalamin b12 vitamin, p5p, etc. Those also helped our ds4 -- if you cannot give steroids at the moment.

[LNN]

First, go easy on yourself. Stop feeling pressure to bring your family into situations that you know will be stressful. This is not the time to educate and you should stop feeling like you need to apologize for your or your son's ability/inability to control a medical problem. It's hard enough to cope with just you and your son in the room. I personally wouldn't make it any harder than it needs to be. Education, if you still feel the need, can come later. Right now, just focus on smaller things, like getting through the day. Your son's sense of safety and emotional needs come way before what acquaintances think of your parenting skills.

 

Second, I agree that you should make a list of additional things to look into:

Things you can do a blood test for:

• 
   
  
• yeast (can test for antibodies)
  
• viruses (Epstein-Barr, HHVs, coxsackies, chlamydia pneumonia)
  
• mycoplasma pneumonia
  
• lyme
  
• C3D - a measure of how activated the immune system is - indicates current infection of some sort tho it won't tell you what kind
  
• methylation issues (methylation is a kind of metabolism of certain vitamins and amino acids, directly related to proper production of neurotransmitters). If you have a genetic mutation, you may see behavior issues. Any Dr can test for MTHFR - a common genetic mutation that can be tested by any lab
  

 

Things you can investigate:

• mold (bathrooms, under sinks, basements, attics, near windows that may be leaky)
  
• pyroluria (aka KPU) which is a zinc/B6 deficiency http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf
  CBT/ERP therapy to help with coping strategies (I HIGHLY recommend this - it makes a huge difference in your mind set)
  detox, detox, detox
  

 

I think I'd immediately address the possibility of yeast. You can ask Dr T for a prescription of diflucan. Or you can try a daily dose of odorless garlic plus probiotics. Some people find success with Sacc. Boullardi - a yeast-based probiotic that doesn't get destroyed by antibiotics but competes against the bad yeast and crowds it out. However, some kids are sensitive to Sacc B and it makes them act up. So I don't think now is a good time for a trial. Put it on a sticky note and come back to it when you're more stable. For now, just give at least 30 billion CFUs of a good probiotic, plus either the garlic or diflucan. With yeast, you may see an increase in behaviors for up to a week as the yeast dies off - more impulsiveness, more silliness, more temper, more tics. The toxins from the yeast die-off cause this. But it should subside.

 

Next, I'd add a detox protocol. If the body is busy killing stuff, you need to make sure the garbage trucks are running well to get rid of the dying cells and toxins. B6 is essential for the body's detox system. It's a precursor to glutathione - the master anti-oxidant. I'd also add either alpha lipoic acid or resveratrol. To absorb the toxins, look into activated charcoal or bentonite clay.

 

For mold/allergies, while you hunt for sources, you should focus on the rooms your DS spends most of his time in. Wash bed linens in hot water every week, take any stuffed animals, pillows...put them in the dryer on high weekly. Consider allergen covers for pillows. There's a spray you can use for carpets that inactivate dust and pet dander allergens http://www.allergystore.com/allergencontrol.htm

 

On the topic of Lyme, I'd go to the Lyme forum and read the topics pinned under Helpful Threads, especially the articles on lyme testing. I believe Dr T still relies on standard western blot labs, which are unreliable. But I don't want to bog this thread down with a full discussion. Being from NY, you should definitely look into it. Many of us have found lyme as an underlying issue. But you can search this and the lyme forum for in-depth discussions or you can PM me.

 

Same goes for methylation. It's too big a topic for this thread. Shelia, the owner of this forum, will be publishing an article in her upcoming newsletter. You can contact her for a subscription and you can wade through all the threads on this forum.

 

For CBT/ERP therapy, search the forum for posts on the topic by Meg's Mom, SmartyJones, DCmom, MomWithOCDSon (sorry - I know I'm forgetting some others). It will really give you and your son a common vocabulary and tools to help you both feel more in control, better allied to fight a common enemy. It's hard to do but can change the dynamics and put you on the same side of the battle.

 

Ok, that's more than enough for now. Try to be methodical. Attack one things at a time, add one medication or supplement at a time, or you'll drive yourself crazy. if you add something and see behaviors get worse, give it 5-7 days before deciding to quit. It could be that what you've added is doing its job and you're seeing a herxheimer response. If things get way worse, back down on a dose rather than abandoning it altogether. (exception to this would be any sort of allergic reaction, in which case you'd stop immediately).

 

I know it feels like H**l on earth right now. But with each layer you peel away, it gets better. This is a marathon, not a quick fix. But I think nearly all of us old timers will tell you it gets better. Eventually, you find what works for your child. Have hope.

[tpotter]

LLM. Beautifully said

[T_Mom]

Hello Friends,

 

DS4 has been on a 3 week downward spiral. His tics are in full force. His emotional liability is out of control. We are avoining all sorts of exacerbating situations. People, places and things that may make him uncomfortable are out of the question. We are currently doing a combo of Augmentin/Azith. We had a second phone appt. with Dr T today.

 

Dr. T said that he wonders if there is an underlying something that we are not treating. He is going to test for cocksuckie and strep a as well as other labs. He has us doing Advil 2 tsp. 3xs daily thru Wednesday of next week. If there is a change in him. He may be a good candidate for the IVIG. He also said that a Steroid burst could be given. But, he isn't pushing this as the Cunningham test will be available late Feb and he would like us to do it.

 

Tonight, I feel as if I'm not doing enough. Should I be looking at our house for Mold? Is it Yeast? What is it that is causing this poor baby to react the way he does to life that some (most) children don't react to? I feel helpless, fighting a beast that I can't see. I loathe explaining to NON-PANDAS people that we aren't going to a function because of DS4 behavior. Its a 50/50 chance of what you will get. It's embarrasing when my son is completely melting down, acting out, freaking out. When I KNOW full well this is not my child. It's the illness that brings the symptoms out. Non-PANDAS parents dont get it!

 

I wish there was a book. First do this. Then check for that. If A doesnt work go to B. Add C if B is helping. I know at any moment. Things could always be much worse. I guess I just needed to whine a bit. Mission Accomplished:)

 

KK

 

 

Hi KK-- In my opinion delaying trying a steroid burst, for 7 to 8 weeks as you wait for the Cuningham test -- is not worth doing -- when any child (and YOU!) are suffering this way--

The steriod burst is no big deal for 99% of the kids, and IF it shows an obvious improvement in symptoms, then you have both some relief as well as a confirmation that brain inflammation was a contributing culprit. I would not wait, things can (and often do) get worse!

 

I am sure you have seen Buster's step by step flowchart for "what to do" pinned under the "helpful threads" at the top of the PANDAS thread??? It is closest thing around (and timeless) as far as a guidebook--

 

I really would not wait for the late-February opening of the lab, what if the lab opening is delayed? This is your child's month of January

2013, and it only comes once! Having two kids treated over 4 years, I have become much more proactive as WE wasted a tremendous amount of time waiting to treat our girls, as they suffered,and so did we.

[kleek3]

Good Morning Ladies,

 

What great suggestions and Ideas to look into. We (all 4 of us had the original labs) Myco P was a big factor. Lymes was not. Dr. T is running some of the other labs that LLM talked about. In the meantime...I will be looking into the mold issue. I certainly wouldn't be surprised in the bath if this were an issue. I feel a sense of hope. To be reminded of the marathon and not a race is reminded once again. I am a child and parent of instant gratification. This lesson in PANDAS might just be exactly what I need to slow down and stay in the moment. I know you all understand the strong desire to "FIX" the problem yesterday. I often forget about the marathon and take off sprinting after or during a flair. SLOOOOOW DOWWWNN KK! I have plent to look into now. A lot on my conversation with DR. T was reflected in LLM's post.

 

I too am feeling that if the Motrin/Advil doesn't help by Wednesday/Thursday...the steroid burst is an option. What IF the Cunningham Pannel doesn't become available and we all suffer bc of a "possible" lab test. Thank you all for my dose of medicine:) Happy NEw Year to you all!

 

KK