Help with PANS

[Momwithacause]

I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse.

Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year.

I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet.

After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store.

Currently he is on his 3^rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful.

Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.

 

[pr40]

I am taken aback by the complexity of your situation. Can anyone on this forum really add to the options you are already considering?

If you are in California -- Stanford seems to have a functioning PANDAS center, perhaps trying their is your best bet.

one thing only, depending on his genetic makeup, mb12 may have side effects might be increased ticking.

[Rachel]

My son has vocal tics and he is 14. When he was much younger, he would have spells that would last 30 minutes or longer. Eventually we were able to get this under control with a medication called Intuniv. However, my son also has problems with serotinon and dopamine levels according to many different sources of testing. This medication does help regulate this in the brain.

 

In January of this year, my son was started on a methyl B-12 shot. This shot has really helped with fatigue levels and has not increased his vocal tic. Since more supplements were being added to help my son with his fatigue levels, my husband and I decided to do the 23 and Me testing on my son. We did not see more improvement when we added these supplements and were afraid we were wasting money. We really wanted to know if my son needed Methyl B-12 to help his body function better. According to the 23 and me test results, he does need methyl B-12, but some of the supplements that were added were a hinderance to getting the methyl B-12 to absorb efficiently.

 

It does take some work to figure out the test results, but was well worth the effort. Dr. Amy Yasko has written a book and has developed at test that's almost the same thing as the 23 and Me. However my husband and I chose to the 23 and Me testing due to the cost involved. It would be a way for you to know if your son needs methyl B-12 or if he needs a different form of B-12.

[sf_mom]

Why are you being prescribed Diflucan (flucanazole) and Omnicef (Cefdinir)? Does your son currently have a yeast or other infection? Yeast/fungus/mold can cause all the issues you describe and why you might be seeing improvement with treatment. BUT, improvement could also indicate there is some type of other chronic infection in addition to yeast/fungus/mold.

 

We have boy/girl twins and our DD had language regression at 2 1/2 after MMR. Both would have been considered ASD, DS high functioning and they have been treated since 3 1/2 years of age by neurologist, biomedical autism specialist and LLMD in Northern CA. They are now 6 1/2 years of age and functioning up to grade standard or above.

 

One has a nagalase of 1.3 and one has nagalase of 1.0. We have not treated with GcMAF yet. Both have immune deficiencies, one worse than the other and she receives monthly with low dose IVIG as a result. They have been treated predominately with combinations antibiotics, periodic rotation of anti-vitals all while we addressed methylation, detox, gut issues. They have the following gestational Lyme, Bartonella, Babesia, FL 1953, EBV, HHV6 and Coxsackies, ongoing yeast/mold.

 

We've obviously attacked it from all angles .... not any one thing has been the magic cure all but all has helped to bring them towards recovery and living a normal life.

Edited April 29, 2014 by sf_mom

[Momwithacause]

Rachel thank you for telling me about your son, i don't seem to hear about other kids doing the vocal tic, so it's so puzzling to me. My son being 3.5 is just starting to talk so he speaks a little bit & yet HAS the knowledge of what he wants to say for example he will say "I see a squirrel, (then he will say) "& over there are 2 squirrels" So he understands tenses & his twin who is nuerotypical still says I see 2 squirrel , so it's interesting , but in between speaking "our language" he will make noises a little like a dolphin. We have only been on the Methyl B-12 injections for four months my son had a series of blood tests at Labcorp which showed that he need methylation therapy & had a B-12 deficiency . like you are seeing the injections have helped our sons energy too without hyperactivity. They have not made his vocal stimming more, as a matter of fact he used to vocal tic 50% of the time. We had a noisy household. I was just on the phone with a friend who has twins one of her sons is receiving DAN treatment & she is about to have the 23 & me test. Is your son still taking Intuniv? Is it something that is needed long term? Was it a good fit for him?

 

Pr40 believe it or not before methyl B-12 injections his vocal tic were even greater,thank you for helping

 

Maybe I need to be patient at let things WORK but as a mom I am so excited about the speaking he's doing that I just want to keep the forward momentum going in the best way possible

[Momwithacause]

sf_mom maybe I am where you were 3 years ago? I am learning as I go. Neglase score I do not know. I am intreged by GcMAF am wondering if the gains are permanent or if they slip back. I can't seem to find many parental testimonials on this just 2.

To answer your question he is on diflucan/ fluconazole & omnifer/cefdinir because he has had an ongoing battle with yeast/candida since his toddler diarrhea at 12 months old ,,, so we cannot give omnifer/ cefdinir without fluconazole or we end up with a yeast nightmare ... My DAN cycles the antibiotic treatment, some of his patients if young enough possibly get better after a certain amount of cycles.

I know we started with an immune deficiency because a mosquito bite used to some times end up with us at the hospital , but not lately thank god.

I hope your children are doing great, I'm sure you have been through quite a bit.

 

after a cycle it takes a while for his OCD, Seperation anxiety & loss of language to occur.

That really is the reason I ask you & this group, I know this group is knowledgable about PANS & PANDAS if it keeps reoccurring do you go do IVIG. What are your thoughts on fecal transplant. What are your thoughts on IVIG ?I am just trying to have a game plan

Thank you

[Rachel]

Momwithacause,

 

Celebrate these small changes and make sure you are keeping a journal about slip ups and medicine changes. If something is working, stick with it. My son has been taking Intuniv for the last 3 years. Before the Intuniv, he was taking Clonsapam but when puberty starting kicking in, it stopped working for him. He was ticing constantly. So I understand what it's like to have a noisy house with many restless nights. His vocal tic started when he was 10 years old. His current doctor thinks that he will eventually be weaned off this medicine when some other things get turned around in his body. Try not to get impatient with healing, it's coming. It just takes time.

[rowingmom]

For us vocal ticcing was the result of toxin overload.

 

DD had ticcing flares, both motor and vocal, resulting from antibiotic induced bartonella die-off. Mold and yeast can also cause ticcing problems for her.

 

For this reason we eat organic food - to decrease pesticide toxins as well.

Edited April 30, 2014 by rowingmom

[sf_mom]

Since you know he improves with antibiotics I would look more extensively for chronic infections that might be triggering symptoms.

 

You can google Lyme Induced Autism and see the appropriately ways to test for Lyme and co-infections. Most do a provocation and look for antigen in urine as often the immune system is too dysfunctional to produce proper antibody response with standard testing.

 

Yeast/Fungus/Mold are all the same thing. Mold really caused our older son to tic as well. When we moved from our last home and detoxed aggressively for mold our older son completely stopped TICing. He had a chronic cough that would not abate and would come and go over 4 years time that is finally resolved. For mold, I would do the Real Time Mycotoxin Urine test.

 

I am assuming you have already checked for chronic viruses. If not, I would recommend testing with MDL. They have a very good viral panel and you can also test for Mycoplasma and Chlamydia Pneumonia with them.

 

Definitely test IgG subclasses and if there is deficiencies consider IVIG. Deficiencies in 1s & 3s is typical with Lyme. Low IgAs and deficiencies across the board along with Gluten antibodies is common with mold issues. Mold and chronic infections will suppress the immune response making it difficult to fight any ongoing/chronic infections. Repeat labs results on IgG subclass will help you to quality with your insurance for treatment.

 

GcMAF has been very helpful to the individuals I have spoken with about it but most had treated for chronic infections first. I understand if Lyme is involved and has not been treated properly most will relapse after shots are stopped and nagalase will climb. However, it can bring a lot of relief while treating. We are considering it for our two son's that are in the 1.2 and 1.3 range if it does not lower on its own after detoxing mold.

 

You might consider TMS therapy. Although only FDA approved for depression, I understand it is super helpful for OCD. Right now, I know its available in Northern CA, Los Angeles and I believe Bradstreet is now set up to do it as well.

Edited April 30, 2014 by sf_mom

[Rachel]

Sf mom

 

Will chronic infections keep the IgA low in the system? I was rereading your post and wanted to make sure that I had not misread your post above. My son has a low IgA and this would make sense with his condition . The gluten antibodies and mold antibodies have been checked and they are negative according to recent test results.

 

Momwithacause

 

Hang in there. I am new to all of this and am learning learning along the way. If your doctor will suggest more testing, I would get as much as I could get done. It's hard finding all the pieces that are making your child sick. Even harder if you have a doctor that does not believe in this illness.

[sf_mom]

Rachel if your son is immune compromised and has low amino acids your son will have difficulty making any antibodies even for infection.

 

Often these kids, like my DD you need to use alternative testing that doesn't look for antibodies. With antibody testing DD looks serological negative for almost everything. Her twin brother who is a lot more immune healthy comes up PCR positive for a lot. She was truly regressing at 2 1/2 years of age. Thankfully we have her twin and older brother who have helped determine her infections plus alternative testing. She is very responsive to combination antibiotics and also quickly regresses when taken off them. For now, we are hoping that the monthly IVIG will help her to make headway with her chronic infections. Unfortunately, the antibiotics have probably only been keeping things in check and her body was working overtime to barely maintain. With monthly IVIG she has matured, gone through a growth spurt (almost as tall as her twin), is almost an appropriate weight, hair is growing and is finally losing some of her baby teeth, etc. Her vitamin/mineral deficiencies still reflect what is typical with ASD: copper/zinc ratios that are off and switch from low zinc/high copper to low copper/low zinc, low D3, iron, methylation issues, etc. Again, we use SpectraCell to track vitamin/minerals not serum levels and monitor her regularly. SpectraCell looks at inner white blood cell utilization of vitamin/minerals.

 

I was also told that low IgA can indicate an allergic reaction to something. In our case, over the last 4 years all our children had became immune deficient inclusive of IgAs. Because our children are not fully biologically related we knew it had to be something environmental. Then a tree fell on our home last summer exposing both white/black mold behind our walls... siding of our home needed to be pulled to find the mold. The house is now condemned and we do not enter without gloves and mask and will come down completely. Other indications of mold is low WBC and potentially slight high liver enzymes. Older DS had dark circles under his eyes and was often pale/yellowish or gray in skin tone. I highly recommend reading MOLD WARRIORS. The gluten antibodies that cross react with mold are the ones associated with Celiac's Disease. I am wondering if your son makes antibodies or if you actually tested for Celiac's. Also a child with mold issues may appear to have many allergies inclusive of food and might also have what appears to be ongoing sinus issues.

 

Our original testing for MOLD that included C4As and then the Shoemaker panel wasn't overly indicative of mold. The only way we found that mold was a problem was by testing the "URINE" - by Real Time Labs Mycotoxin Test. We only did the Real Time Labs Test after we found the extensive mold behind the walls. A huge regret of mine is not having tested for mold earlier in our treatment process.

Edited April 30, 2014 by sf_mom

[JuliaFaith]

We did GCMAF and it was the best treatment for my son at the time. It mainly targets virus(es) and immune system. We addressed bacterial/fungal stuff before trying it and treatment was pretty short for us. He is holding steady at a new, higher, base-line now for ~5 months so far, and seeing changes in how he responds to past triggers in a better way.

 

PM me if you want any additional information.

[JDuffner]

Julia-

WhAt does GCMAF stand for and how did you address bacteria and fungal prior?!

 

We just moved from a house with mold. Dd still suffering monthly illnesses.

[JuliaFaith]

jduffner--PM'd you