Close to being diagnosed Bipolar

[TinyTreasures]

Hello - thank you all SO much. I have been so overwhelmed for the past 7 months with basically no one to talk to about this that it is a relief to finally hear from so many people who are so knowledgeable - I appreciate this very much so thank you!

 

We see Dr A for our first followup visit in 13 days.

 

We are definitely considering the Cunningham Test but does anyone know how accurate it is? My fear is getting a false negative - my husband has a hard time believing PANDAS even exists (just finally starting thinking that may be it this past week) so a false negative would be horrible.

 

We have tried ibuprofen - he was on it for like 7 days at the beginning of this treatment and it didn't seem to make a difference unfortunately.

 

I called Dr. A about having him take the Augmentin 2x a day instead of one 250mg/5ml once a day in the morning. I read that it is out of your system within 10 hours, so that means he has 14 hours without protection?! Wouldn't that give anything bad in his body 14 hours to come at him again and isn't that dangerous in possibly causing him to become resistant to Augmentin? Well her nurse said to give it 1 more week with the 1x a day doseage and update her then. I don't think she asked Dr A about it. If she did want me to split the dosing would that mean just halving it and giving it twice, so 2.5ml twice a day of the same 250mg prescription? Another week on the wrong dose of medicine seems risky. We are on day 20 already and had a bunch of amazing days, and the past 3 have just been decent - about 75% back to normal. I can't help but wonder if doing Augmentin 2x a day would be the boost he needs to have those amazing days back again.

[TinyTreasures]

ps - my precious little boy was off the walls happy last night until right before he fell asleep, he started calling himself "Stupid" again. This morning he was in his bad mood again but trying to get out of it. He wanted me to do something funny that he always cracks up about in the past and I was doing it, and he was getting so frustrated because he couldn't laugh about it and even said "It won't let me laugh". Fortunately a little later on he became much happier again. He has had a lot of mornings the past 19 days that are really bad, and then by lunchtime he is back to happy again and even continues to have excellent days. Can that be because the Augmentin I give him at 9/10am kicks in?

[peglem]

Dr.A has been out of the office the past month for surgury-so Nora probably just thought you should wait until the appointment. Do you not have a pediatrician who will take care of the abx rx for you?

[rowingmom]

My fear is getting a false negative - my husband has a hard time believing PANDAS even exists (just finally starting thinking that may be it this past week) so a false negative would be horrible.

My husband was the same way with lyme/coinfections. DD's pain symptoms started suddenly in Jan and DH's response was that it couldn't be lyme . . . it was too cold outside for ticks. This is from a PhD biologist. He actually told me I was crazy. I was undeterred.

 

I decided that I didn"t need his approval to continue researching and finding an answer. I found a LLMD and DD started treatment. It did help that the bartonella PCR was positive, but he still didn"t believe that a bacterial infection could be responsible for neuro symptoms. Our marriage went through a tough couple of years, but with DD's healing has come an acceptance on his part, and he has had to admit that she is better. He has never thanked me for finding help for DD and now I don't expect him to.

[T_Anna]

I found that this article really helped me deal with some naysayers...especially in the medical community.

http://thewalrus.ca/a-feverish-debate/

 

Edited to add a signature:

T.Anna

DS15

Edited June 11, 2013 by T.Anna

[norcalmom]

You could try to email the lab with your false negative question.

 

What it is shows is anti-neuronal activity. Indicating if your child is making very high amounts of anitbodies to their own brain. It only tests for 4 of these antibodies, although there are alot more than than. However, it includes an over all activity test called CamKinase II - which shows activity, and has been known to be elevated even when the 4 neuronal aren't (thoritically indicating that an anti-neuronal not in her panel is causing the activity). That doesn't usually happen however.

 

If it comes back negative, you could still have an infection causing the behavior, but it has not caused an autoimmune reaction (at least not the ones this panel of tests identifies). So, you can direct yourself to other solutions, and away from immune modulating treatments (steroids and IVIG).

 

I think we all worry when we send this test in, as well as the strep test. We want them to be positive...but even if its negative, the information gives you a basis for your next step in testing and treatment. Unfortunately for most of us, this is a marathon, not a sprint. So, pace yourself.

 

I did not think my son's would be positive since we took the blood draw for it when things were relatively good. He was not in exacerbation, he was high functioning, just minor OCD no one would notice. It was high positive for CamK, and one of the anti-neuronals. And he had responded well to antibiotics initially but they stopped working for treating his pandas, and the next time he got a cold, all the symptoms came back, and his baseline was worse once the flair passed. It was this test that convinced me to take the very scary step of getting IVIG. Which was tremendously helpful, however I never would have done IVIG without this test.

 

I think in your case, your child is very young, and it would be equally as scary to put her on psych meds and label her bi-polar. So, although the Cunningham test, in and of itself, cannot tell you everything, it can tell you if your child will very likely improve with steroids and or IVIG (vs psych meds and CBT - not that those aren't options and treatments for pandas kids - because they are ). But it will help you prioritize.

 

It may be a bit premature in your learning curve to take this test. I really think its most helpful for those considering IVIG, if the antibiotics don't work, or stop working, and you can't find an infection. Maybe you will uncover an obvious infection and the right antibiotic will take care of it quickly for you, and the pandas symtpoms will resolve along with it.

 

Good luck and let us know if the initial tests turns up any smoking gun.

[nicklemama]

I agree with Norcalmom. I was so nervous that my sons would be negative. He had been diagnosed after a yr and was doing well I'm abx. His symptoms had greatly diminished. He tested in the lower PANDAS range with one high anti neuronal antibody high. I often wonder how high it might have been before treatment began. It was still high enough to be considered PANDAS range and that was very helpful as my son had negative cultures and titers for strep.

[TinyTreasures]

Once again thank you all for your posts! Yes it has been a super hard struggle with my DH not believing a virus could cause mental symptoms. He would always smirk when I mentioned PANDAS and I even felt I was literally going crazy myself and maybe it was all in my head on so many occasions. It was finally just after this last improvement and then relapse that my husband FINALLY acknowledged it wasn't poor parenting or just the "terrible 3's" but something our son could not control. I am cautiously optimistic that the Augmentin is our key for now. Our little guy seems mostly back to normal still and this is the longest stretch since the last time we used Augmentin. The look in our son's eyes is him - he is completely THERE, not far away or someone else entirely.

 

I called Dr A back and Nora said it would be fine to split the dosage 2x a day. Yay! It is so great to have a Dr who gets it.

 

Thanks everyone for the explanations on the Cunningham test. I am going to call them for more information.

 

Anyone try Homeopathic Doctors? There is a Homeopathic medical group on AZ that specifically treats PANDAS and Sensory Disorders (our son also has SPD which has become much worse with PANDAS).

[smartyjones]

tiny -- I have not read all of the posts - but am certainly happy to see you are getting good support here! I, like everyone else, agree -- 3.5 is way too young for that diagnosis.

for us, one of the reasons we were able to get a pandas diagnosis relatively quickly - about 2-3 month, 4 years ago, which was pretty amazing back then -- was b/c of one savvy behavioral therapist, who said, "what you're describing sounds like OCD, but he's awfully young." he was 4.5 and it was his age, not so much his behaviors or even that it was sudden onset that made her think to look further.

 

we do see an integrative MD who treats with homeopathy. I was somewhat familiar with homeopathy and had used it for myself and my kids previously -- of course, not to the level we then did for pandas. we use something more of a 'sequential' approach and/or "homotoxicology" in that we use the remedies to treat conditions as you would other meds, such as abx. the more common approach is "classical" where a constitutional remedy is used. as with everything, there are disagreements between approaches. we have had very good success and I believe my ds is at a very good level of health.

Edited June 13, 2013 by smartyjones

[rowingmom]

Our daughter's sensory processing disorder was present from birth, and has resolved with her treatment for lyme/bartonella, as has her ticcing (to a great extent), emotional lability and raging. This is one of the reasons our LLMD feels DD was born with a congenital lyme infection. That and her negative reaction to her 15 month MMR vaccination.

 

No way would I accept a bipolar diagnosis at the age of three. My son had changes in his personality from age three to age four. It took us too many years to figure out that he had Lyme/Mycoplasma/Bartonella from a tick bite. He also started improving on a trial dose of Zithromax. If antibiotics are improving the situation, even if it doesn't last, you are either dealing with an infection or an autoimmune response to a previous infection.

Edited June 13, 2013 by rowingmom

[TinyTreasures]

So I am bummed - our appt with Dr. Alarcio was supposed to be this Monday, but I was just reminded that it was rescheduled for July 15th since she is recovering from surgery. I just forgot to erase the first appointment in my calendar. I was planning on doing the Mycoplasma, MTHFR, and Lyme bloodwork Monday and also asking Dr. A about my 3.5 year old's sudden onset of STUTTERING which is getting worse and worse. Tonight it took him like 10 tries to get the word "Mommy" out, and this is a child who was saying 250 words by 16 months! What in the world is happening? Also, there are times throughout the day when he doesn't stutter whatsoever - like if he is really into playing or acting out a character. But 2 seconds later if he switches out of that character and acts me a question or tells me something he stutters horribly. He's had some speech issues with relapses before where he couldn't find the words to say or speak sentences fluidly and he would get so angry, but this stuttering doesn't seem to bother him at all..it seems he doesn't even know he is doing it.

 

He has been on Augmentin for 30 days now (Zithromax and Keflex before that but they didn't work) and it is DEFINITELY working for him - he is way better than before, but still not completely himself and still has some tics and fears and sensory issues and now the stuttering for almost 2 weeks now.

 

He also is coming down with his first cold in months and I am so scared as any little cold before would put him back into a full relapse. I can already see some signs - he made us cover up the smoke detectors today because he was scared of the blinking light. Plus he got a bad bloody nose and that seems to happen whenever he is getting worse again.

 

I can't see waiting 3 more weeks to get some answers, that seems like an eternity away.

[nicklemama]

Hang in there. It's a journey down a long road. 30 days is just the tip of the beginning of treatment. You'll have more time to see response to abx by the time you see the doctor. Journal daily so you can document how the cold affects him. You may see nothing. My son does not flair with colds or stomach viruses.

[rowingmom]

Yes, hang in there. Keep researching and you will be even more confident of your questions when you finally get to the doctor.

 

Chart, chart, chart. Daily charting with an Excel stacked bar chart has worked well for us. Symptoms (y-axis) vs day (x-axis) with notations on protocol changes/illnesses. Makes it so easy to observe herx reactions etc. Makes it easy for the doctor as well.

[peglem]

Do you have a lab order for those tests? Because if you get the draw done now, the results will be in by the time you see Dr. A. There is at least one pediatrician in the Phoenix area who will treat/test between Dr.A appointments and he will work closely with her on a treatment plan as well.

[TinyTreasures]

Thx all! I just remembered someone told me in a post I wrote a while back that they had a spreadsheet they could email me for symptoms tracking - rowingmom was that you? I would love to do that.

 

I have a lab order for the MTHFR and Mycoplasma tests that the lab messed up the first time, but if I have to go back again I would also like them to test for Lyme so I would need a new order My 3.5 year old was pretty traumatized even though we used Emla...the 3rd time they took 1.5 hrs to get us in and the EMLA wore off and they had to poke him twice...just a really difficult experience, so I want to get everything we need in one visit if possible.

 

However now we are considering the Cunningham Panel. I believe this is PANS (not sure about PANDAS as his blood never tested positive for strep), but my husband has doubts and all of his family too. It would just give us all peace of mind to be able to rule PANS in our out and to be able to show his pediatrician as well...there are so many doubts from people - they can't understand it unless they've experienced it. I even second guess it all the time even though all the signs are there.

 

A question - can MTHFR mutation be diagnosed by the 23andme saliva test?! If so, is it as accurate and revealing as the blood test? Nora said the MTHFR test is expensive and might not be covered under insurance, so if I can find that out through the 23andme test that we are planning on doing that would be great!