pr40

Hi Croatian mum, Kod naseg sina (5), prva reakcija su bili tikovi kakve pre nismo videli. Zmirkao je kao semafor. Grozno ga je bilo videti. To je trajalo oko 6 sati i postepeno je nestalo. Onda je isao gore dole. Mesec dana kasnije, otkrili smo potpuno drugo dete. Veseo, nasmejan, neopterecen. To je trajalo do sledeceg virusa. Na srecu, pogorsanje je trajalo samo tri dana. Nadamo se da ce od sada biti tako da pogorsanja ne traju dugo. Zelim vam sve najbolje, petar

Both of my kids have both MTHFR mutations, C677T and A1289C. ANd i am trying to figure of their version of PANDAS is. First, most of their blood work is normal, except for low B12, B6, and D3. DD had ANA elevated to 1:320 but even that is in normal range now. (I know many of you have similar results.) Both dd and ds have PANDAS behavioral problems (rages, inflexibility, tantrums). They also have tics, but no OCD. Both are benefiting from abx, but it was not a cure for them. DS was on a steroid tape and that helped him a lot, too. They are on supplements that should help with methylation. So, finally, my question: can children that have PANDAS symptoms as well as MTHFR mutation be helped with IVIG? If your child has these mutations, one or both, has IVIG helped? How much? If you understand how MTHFR mutations contribute to PANDAS or PITAND or PANS, could you try to explain it please? thanks in advance -- you all have always been there for us

Try "vitamin d3" with quotation marks.

for our ds5, we never established what caused his PANS. dd9 was a strep case or so we think. In truth, her PANDAS started before the documented strep, only it was not as bad as it was after the strep. I would encourage you to do a complete immune panel if you have not done that. Wait and see does not seem to be the process that works with PANS/Pandas kids. iF you suspect PANS/PANDAS try to get to be seen by one of the PANDAS drs. For our ds5, some touretts like symptoms went away on steroid taper. we are currently waiting to see if they are going to come back. Also, many of PANS/PANDAS kids seem to have some issues with MTHFR enzyme and methylation. A cheap genetic test can tell you if your child has these issues.

I don't see the point in forcing our children to do anything that they cannot. They are PANDAS kids and they have certain limitations. When they don't have PANDAS issues, which is only sporadically, they are fine with most tasks, responsibilities, and so on. So, in my mind, your DD7 is still in a flareup, milder than it was, but an exacerbation nevertheless. Perhaps talking to the Art teacher is the most efficient option. Good luck

"Our DD is completely unable to take info from a previous situation and apply it to the next, identical challenging situation." absolutely the same here with dd9. her pandas started a year ago and "learning" did get somewhat better but is still extremely limited. Another trait is that she cannot see herself through the eyes of others nor can she judge correctly behavior that is her own. When the same is done by her brother (5), she can identify the behavior correctly. this is a daily occurrence for us and I cannot relate it to a flare up. I do think, however, that this is one of her PANDAS symptoms, not something else. We did not see it quite the same way before. You can call it regression. We are seeing a therapist tomorrow for advice. If you figure it out, I would like to hear. thanks

I am sorry I have no answers only similar tics. My kids are much younger ds5 and dd9. She is humming and his is making all sorts of drumming noises. ds's tics stopped during a steroid taper.

just to second the previous message, no rules. we saw increase in symptoms after we started prednisone and before we saw any decrease. up and down but downs are not as bad as before. we hope that trajectory would continue.

our ds4 had a 14 day titer. steroids suspend immune system in some ways. they mimic adrenal glands. figuratively speaking, they calm things down.

if PANDAS is an infection only, why would anti-inflamatories help some people? Or IVIG? all usual remedies for P are along the lines of resetting an immune system.

but WAIT -- how do you tell if it its a PANDAS behavior or not? We have behaviors that we cannot distinguish anymore from character traits, like being selfish, thinking in a quasi logic, lying, and so on. So, What do you do, punish or not, when you cannot tell what is going on?

our ds4 liked the taste of liquid prednisone. perhaps there are different flavors?

Great idea. The difficulty in explaining how PANDAS feels is that one has no control over those "feelings" and behaviors. As I understand it, our ds and dd's "personality" is not there when they are in an exacerbation. They even look different, possessed in some ways. So, how do you represent possession to someone else who had never experienced it? Tolstoy in Ana Karenina has this great character that is possessed, Nicolai Levin, brother of one of the main characters Konstantin Levin. there are, of course, other literary accounts of possession. I am not sure that that is what you had in mind, though.

so, to conclude, age of parents does not seem to matter. history of auto-immune problems, on the other hand, does matter. we have psoriasis, allergies, celiac, and arthritis on one side. On the other side, rheumatoid arthritis, ulcerative colitis, and depression, on the other.

This question is along the lines of trying to establish facts about PANDAS. Genetic predisposition is already assumed and I think it would be good to have more basic information about other issues, including the age of parents at birth of their PANDAS child. In our case, FATHER was 40 (dd) and 44 (ds), MOTHER was 36 (dd) and 40 (ds).

acceptance is a big factor in living a "normal" life. we are learning how to manage it and live with it. it's interesting that so many PANDAS kids seem to have above average intelligence. (is it because of the age of their parents, who, if older when they had kids, might have higher education?)

both of our kids have normal inflammation labs (after 2 months on abx), just like your daughter. when we checked their vitamin levels, we found b12, b7, and d to be low. both have gene mutations on MTHFR. ds4 responded well to steroids, less to abx. dd9 responded well to abx. both are also on vitamin supplements.

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.

With our ds4 we did not see change in rages (screams) until we tried steroids. We are currently on them, 12th day, and, finally, we have some days without them. Before steroids, we were very seriously considering the possibility that he does not have PANDAS but something else.

I talk to a friend about our dd8 and her PANDAS. She said her son had the same symptoms when he was 8. He is now 19 and has bi-polar diagnosis. his symptoms include anxiety and a lots of word OCD. Music is basically the only activity that calms him down. He is very intelligent but does not function well. What should they do? thanks in advance.

few comments on what was said in this thread: 1) On this forum I was told several times that behavioral therapy is a necessary part of recovery, not the only part, however. that is correct in our case. 2) when strep attacks heart, standard procedure is abx until person is 20 years old. So, there are some peds who are comfortable with profilactic abx in some cases which are, in some ways, similar to PANDAS 3) in our experience, we are our children's best doctors. We had to become peds and specialists as well as different parents. And we keep being open to the possibility that our kids do not, in fact, have PANDAS, but something else.

He is 40 pounds and his dose is 30 mg. we are going to taper down to 7.5mg. he does have a runny nose. A viral cold probably. before starting steroids he was getting worse. thanks dcmom. I appreciate your response.

After starting our ds4 on steroids, we saw exacerbation of his symptoms. On the first day, he was very aggressive and irritable, much more than usual. On the second day, his tics started. Normally, his eye-tic is very mild to non-existent. Today, it seems to overwhelm him. I am not sure what to think. thanks in advance

we had some success with understanding such behaviors as compulsions. the first rule is that compulsions are made worse by any kind of "no". Second, parts of methylation process should be checked. metylcobalamin b12 helps our daughter. and, of course, look into PANDAS as others suggest

thanks, Dcmom, We are on a 6+4+3 taper starting with 2tsps and going down to 1/2tsp. We are doing it to see if our ds4 problems are auto-immune related. from your message, i gather that this will not be easy to tell. you seem to suggest that the success was limited -- is that the case?