Tamistwins

My kids also have trouble sleeping I give them melatonin and passion flower I recently got from vitamin store my daughter slept all night in her bed, hasn't done that in a while, my son slept longer than usual.. Think I need to up his dose.

Aww I'm so sorry to read what your going through. Very tough situation, i would not suggest vaccination s until u test further and see what's going on with immune system. My children never presented with typical strep symptoms. They sometimes had low grade fever, wouldn't eat, dark circles, complained stomache ache, throat didn't look strepy... But I knew when wad positive, unfortunately at times when I for sure thought strep sometimes came back negative and they werent given anything. Anyway, I feel for you..I have 3 kids and its so difficult when we can't lead normal sane life.

You should call igenex and order the kit, it will have the vials in it that the lab will use to store the blood in. You probably want to test for lyme western blot and co infection panel. Good luck!

I corresponded with Dr schulman, the pediatrician in Brooklyn,ny and she says she has a pretty pandas prone practice, all Jewish kids. She thinks Jews are genetically prone to this tendency. Hmm I have3 children, Jewish but I have never seen this before all ###### fell into my lap.

1st Arent most Americans from Europe? 2nd Am I the only Jew?(lol) Nope, were Jewish too, but also generations from Poland, czech, Germany

Hi There , My son was found to have strep, mycoplasma, EBV he could not rid his system of the mycoplasma although strep titers declined. He has been on so many different and strong antibiotics for the mycoplasma, his behavior hasnt gotten better even after IVIG. I just found out my daughter has a positive IGM result, my son appeared to be negative soooo what is causing it and how to help I wonder. But we are going the lyme route for treatment now and I pray that it is the missing link.

Thanks everyone for your responses, I have benadryl on hand too. What do you do for sleep issues, melatonin does not seem to work.

Tami, My son complained of itchiness all over, no redness, after starting combo abx. went away after a few days. he could function though. didn't seem to bother him too much. Can't recall your situation, did your son present with OCD as Lyme symptoms or did he have physical symptojs as well? what state are you in? darlene Hi Darlene, We live in nj and have been dealing with Pandas for several years since I have been aware of it. We have been on several different antibiotics but not at the same time. After having ivig, and still no improvement we finally had igenex test. My daughter tested positive and my son was negative. But, we are still treating both. So to answer your question my son first presented with ocd, sensory issues, seperation anxiety, extreme rages, urinary issues, sleep issues, etc. At times he did complain of leg aches, headaches, stomache aches. He has few tics and odd. Thank you for your response, Tami

Hi, Both of my children are being treated for lyme by Dr. Jones in Ct. I was wondering did anyone after beginning treatment start to be itchy? It does not seem like it is a reaction to the medication as there are no hives. They say they are itching on the chest area and it may look slightly red under the skin but nothing has surfaced. I'm just wondering anyone have any ideas or suggestions? Oh and by sons ocd and behavior is off the wall and he can't sleep, disturbs me all night. Thanks, Tami

Thank you for the links as I haven't researched lyme. Dr. J does not feel its lyme and not pandas for us. Its both. My children have many documented strep after strep infections that have wreaked havoc on their immune system. Then a bad infection strep that wouldn't go away after10 days antibiotics and my son began banging his head on hard objects. He doesnt show a pos itive lyme but we are treating as such.

I am sorry for your positive result but glad you found what's wrong. We too are positive. Just saw dr. J and he treats pediatric and adolescent. I met a family in the waiting room where he was treating everyone including the parents. Good luck!

For those of you who have been following my desperate posts from time to time and decline in my children's behaviors even after 2 IVIG's and a handful of different antibiotics well... to my disbelief my daughter has tested positive on igenex iGM results. A positive result suggests exposure to B burgdorferi. **31kDa + **41 kDa + **83-93 kDa + Igenex IGG negative 30 kDa + **39 kDa IND **41 kDa ++ Can anyone explain these numbers? co-infections negative My sons results were all negative but he will be treated for bartonella he will be taking azithromycin, omnicef, rimfampin, and 8 days tindanax I hope I got those right. My daughter will be put on same meds but hasn't seen Dr. J we will have to wait till MAY. only + is for 41 and 58 ++ Thanks for any input, Tami

We have used augmentin xr on a 7 year old.

I'm really happy you found help, I read your update, great news!

I don't think omnicef had a negative effect but today wad just a reminder of how bad things used to be. Rages over nothing, piercing ear screams I think I'm going deaf, physically having to remove him into his room.

Enjoy the rest of your vacation

We will be there early afternoon

Sorry, I emphasize with you. My son also used to be particular about how his food was, Heck he still is but in a different way. last night I asked him if he wanted baked ziti or pizza for lunch... He loves baked ziti and excitedly said he wants baked ziti. Week this morning he freaked out raging he wanted pizza....he told me he wanted pizza...sigh its a no win situation. Good luck, Tami

Hi there, My son has the same ocd "ok", "ok" aside from strep titers, you can test for mycoplasma pnemonia igg and igm, ebv I'm sure others will chime in on other tests, ige shows allergy, my son has that too. Good luck! tami

Wendy we are not on prophylatics because we have yet to get to a good place. They are on azithro 250 mg 2x a day everyday and I recently added omnicef 1 x a day.

I know mycoplasma titers are supposed to rise before they come down but my sons rose came down and is up again. Can anyone shed some light on it. Igg 349 458 963 420 288 327 IgM 99 1140 1128 1128 1096 1271 Thanks, Tami

No she hasn't told me or complained of that. The only thing i noticed its when she needs to swallow her probiotic. Unless she head applesauce with it she will scare herself saying she can't take it she will choke etc. Its a small pill and she had swallowed a larger pull before. But the drama and anxiety over taking this pill, so I give it to her with applesauce. She tells me shes not hungry or stomache hurts to avoid eating.

Hi can you tell me your experience with pex, are u happy that you had that procedure ? how is your daughter doing now what has changed positives and negatives. Thank you for sharing.

Thank you everyone for your responses! Is this a pandas symptom, what is it called is there a link showing it as a symptom?

We have seen Dr. J. for a consult when we first learned of Lyme (and other). As others have noted, he is very thorough. Just me thinking out loud but I think that I would tell his office that you've had the test but not sure when the results will come in and then ask them if it would make sense to see Dr. Jones without those results. You probably have other blood tests that you can share? Dr. J. takes extensive notes so I would think that he can take the results into account once he gets them and include in his written recommendations. Worst case, they ask you to wait until May. Dr. J. did send us a follow up report. It took a couple of weeks but he did it. And I feel your pain regarding "...and no help from insurance." Just learned that our insurance company denied IVIG through Dr. B. because they did not complete a form correctly. Going back and forth we understand that the form Medco requires does not have a check box for "Common variable immune deficiency". Dr. B.'s office used other with the a diagnostic code..... Dr. B.'s office will have to challenge. This is the first year that our insurance has used MEDCO. We've never had problems before. bill Hi Bill thank you for your response. I did contact Dr. J office and they said most people come in not having blood work so I am ahead of the game. I just wonder its results are negative will I just be wasting money going to see him. I'm so confused, I just feel this is our last resort to get some help. We too have been denied ivig with Dr. B, we just had a phone conference with insurance and dr.b, they really don't want to understand it seems. They asked if my son had Pandas even though that's not what dr.b coded it as because he has failed most of the pneumococal titers. I hope they approve, next step is external appeal. It's a tough call regarding the money. For us, our son shares many symptoms with others here but has some that are not common. Two doctors referred us to Dr. J. because "if anyone has seen a case like your son, he has." For us, it was worth the trip to hear Dr. J. say "Yes, I have seen several kids like your son." (paraphrasing from memory of course) That was quit comforting. Dr. J. was careful to not promise us a full recovery but he felt positive that he could make our son much better. We are working with our local doctor who is learning and consults with Dr. J. when needed so we have not made a follow up appointment. I would not hesitate to make another appointment with Dr. J. in the future. That is comforting to hear that a doctor has seen the same case before; but I would rather hear that he will make my child well again. Although I have heard that and am still waiting for that miracle. So your pediatrician consults with dr. J? so who actually prescribes the medication? may I ask what your child has and how its being treated? my son has humoral immunodeficiency had high mycoplasma pnemonia, had ebv last year and we are waiting on igenex results. Thank you for sharing. We found an internist who is treating my son. She prescribes the medicine. As to what my son has, well - symptom wise: behavioral issues (anger/raging), generalized dystonia, dilated pupils, severe 'contamination' OCD, sucks at math (6 A's, 1 B+, 'D' in math last quarter), bathroom issues (only goes twice a day, three if we make him), limited diet. Think that covers the basics. Officially, PANDAS, Lyme bacteria, bartonella, babesia suspected. Dr. B. has diagnosed CVID, common variable immune deficiency and wants to do IVIG (so far insurance has denied). He had plasmapheresis over a year ago but before we knew about the Lyme. Current 'medicine' routine: Prozac: 30mg daily Minocycline 50mg X 1 daily Azithromycin 250mg X 2 daily Augmentin ER 1,000 X 2 daily Tindamax 1 tablet Fri pm, Sat am + pm, Sun am only B12 2,500mg periodically Vitamin D 2,000 IU periodically Coenzyme Q-10 200mg day Vitamin C 500mg periodically Florastor 2 daily (Saccharomyces boulardii, 250mg) Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B) Saccharomyces Boulardii + MOS 5B/capsule X 1 daily Son is 12 years old and 85 pounds. After 4 months, his left foot/ankle is relaxing and his eyes are less dilated. OCD/anxiety are through the roof. Of all the symptoms, OCD is by far the worse for us as a family. Therapies and even a stint at U Penn did not help in the slightest. bill Wow Bill, That is alot of medication how do u fit the probiotics in, I have a hard time. I hope you see good results soon, I completely understand the ocd issues. When my son gets worse it is impossible to stay calm and sane. He requires that I repeat the word ok to him and it can be so many times that I can't take it anymore. I feel so guilty about how I react but I just can't take it. I have3 children and they all are so needy, but, he demands things and if it isn't how he likes it when he likes it then he rages and gets so upset. I feel so sorry for him and all of us. It really makes living a normal life impossible. I can't go anywhere it's embarrassing. I feel like an awful parent because I know it's an illness.