cobbiemommy

DS, 14, is going out for the wrestling team. Yeah. After figuring out that he needs to eat something after school but before wrestling, that part of the equation is better. Our problem, he has some serious joint pain... His wrists, ankles, back, shoulders, etc are all painful. Because he is having a tonsillectomy in two weeks, he cannot have any acetamenophin (sp) and because of his age, he cannot have aspirin. I have not given him any Tylenol, but I will if necessary. Is there anything else to give? He won't take an epsom salt bath, although I think it would help a bunch...

He tested positive for Ebstein Barr virus last December. Can't remember if it was IGg or Igm. I don't think we will do any more blood work until two weeks after the tonsillectomy. I have read that EBV can hang out in the tonsils and adenoids, so hoping that the T&A will wipe it out. Snack today helped with mood. I sent some string cheese and whole wheat crackers. Worked quite well. Whew....

We treated for two plus years for lyme/bartonella. We are also dealing with a sludgy gallbladder and frequent diarrhea.

Ok, medical detectives, I need some assistance... DS, 14, suffers from daily fatigue. He has an adenotonsillectomy scheduled for November 4th that the ENT thinks will help with PANDAS and will help with breathing, sleeping, fatigue, etc. DS, 14, started 8th grade wrestling yesterday. This is his first organized sport ever and he seems very excited about it. That being said, he hates to lose EVER-AT ANYTHING-FOR ANY REASON. I don't know if that is genetic, pandas, or an unhealthy combination of the two. My husband and I are both very competitive. On day 2 of practice, he lost in a drill and he was crying and very upset. He could not be consoled and was nasty the entire trip home. Coach met me at the car to talk about it-JOY. I gave him an apple with peanut butter, he took a shower and is much calmer, but horribly tired. DS was dripping with sweat and said he was starving. A few other times in his life he has been downright ugly and nasty tempered when he has not eaten on a somewhat regular schedule. Usually an apple with some peanut butter will take the edge off until he eats a regular meal. At one time, an endocrinologist said he had Metabolic syndrome and prescribed Metformin. He took for two months and no noticeable results. Dr B, who was immunologist at the time, said he didn't need it, that he did not have metabolic syndrome. His blood sugar always tests in the normal range. DS, is 5'10 and weighs 215; his shoulders are as broad as a linebacker's. He has recently lost 7 pounds on his own by doing elliptical exercise. What am I missing here?? I plan to send a snack for him to eat between school and wrestling practice. Will the adenotonsillectomy help with the fatigue? Again, what else can we do?

It was a pretty good weekend. My daughter is a senior and he is in 8th grade and this was their one and only time to be in band together. It felt nice to say that both of my kids were in the marching band. Whoo hoo!

DS, 14, had a victory moment on Saturday. He participated in the junior high marching band in a parade competition and really enjoyed it! He marched carrying a sousaphone (tuba) and was able to keep time and play the notes. I am so excited for him. He was very tired, but that is typical for him. We are down to only one antibiotic-Augmentin and we are in the process of scheduling his tonsillectomy. Things are looking up.

I just talked to the ENT nurse, today. Her daughter also is a PANDAS kid that had a tonsillectomy. She said that it can take up to a year to see full improvement. We are in the process of scheduling one for DS.

I will check into the turmeric. I wonder what the dose would be for a 200 lb. individual.

DS, 14, has to be talking to himself all of the time-echolalia. Usually it is in a half whisper, but sometimes sounds very sinister. He will repeat lines from movies, television shows, songs from his ipod or even lines from books he has read. I am telling you that this is driving me bananas. The only time he doesn't do it is when he is having an actual conversation or is very focused on doing something. He takes an ADHD medication called Metadate so that he can function for school. He is getting all A's again, so I believe the medication is effective in that way. He also takes Prozac for mood issues. These were both prescribed while he was taking IV abx because his mood and attention were so crappy. We are waiting to have a tonsillectomy performed until after the evaluation of his gallbladder. Immunologist feels it could be two issues, not just one. He is heterozygous for A1298C mutation. He has been treated in the past for Lyme/Bartonella. He did three months of IV meds and just finished two years of other abx. He is currently taking Augmentin to cover for strep. I still do not feel that he is nearly as good as he was while taking steroids/IVIg for infectious encephalopathy. I feel bad because I am always asking him to be quiet, but this talking to himself is literally driving me up the wall. I don't feel like this is a conscious pattern, but he can control it for a little while. How have others handled this situation?

That is wonderful news!! I am so very happy for you. We have the surgeon's approval for the tonsillectomy, but need to clear one more hurdle of having the gallbladder fully evaluated (just in case that is the source of the infection). Oh, I just can't tell you how happy I am for you! Hugs to you and your little one!!

A Pandas diagnosis can actually be good news. At least you will know what you are dealing with. My son, and probably many others on this board, is highly intelligent. PANDAS can get in the way of processing information; thus reducing IQ scores on a timed portion of the test. I have a sister that is quite brilliant, but is debilitated in many ways by OCD behaviors and anxiety. She traces her fatigue back to a case of strep when she was in college. I cannot convince her of the strep connection to her OCD. She denies she even has OCD. When she is sick with sinus infection, which is frequently, she does better while on ABX.

Steroid taper is the suggestion I would make. Not only is it a valuable way to bring down inflammation; if it is effective, it is somewhat diagnostic.

That definitely sounds like a bart rash. DS had a rash that became raised after he started medication. His started in his abdomen/groin area and ended up under his arms, his abdomen, behind his knees, and under his bum. It takes a long while to get over it. Sounds like you are onto something.

I think we are going to do it.

Cryptic tonsils could be harboring infection. That possible lingering infection that doesn't culture could explain some of the symptoms.

I hope your family's recovery goes well. Lots of ice cream, hopefully???!!

Try to call or email Dr K. He might prescribe them for you... Not sure, how many months since you have been to see him, but it is worth a phone call.

Talk to your doctor. Migraines are so debilitating, as you know, so definitely talk to your doctor.

You do not need to be a resident of Boys Town. We saw an immunologist in Omaha that understands and treats PANDAS; he referred us to the docs there so that we could have a team approach to treatment. Each doc looks at the patient from the point of view of their specialty; they compare notes and come up with a comprehensive treatment plan. These docs absolutely get it! I was just amazed and felt so secure in what they were telling us. Omaha is not that far from Des Moines if you are looking for treatment!

After meeting with docs today, I am conflicted about what to do. The ENT recommended a tonsillectomy based on our DS' history, his examination, the autoimmune component, and his age (14). He has seen very good results in some PANDAS patients. Emphasis on some. The longer the autoimmune process has been going on, the less likely to see great results. Our history includes Lyme/Bartonella, not just strep. That being said, any strep infection put him "over the edge." DS does respond well to steroids and IVIg as well as Augmenting/Zith and some other abx. We have a meeting on Sept 4 to go over the input from the neurologist, immunologist, and the ENT. So, I have until the 4th to make up my mind. Husband says "Do it, or you will always wonder..." I would love to hear other people's experiences with tonsillectomy/pandas.

Today, we met with two physicians at the Clinic at Boys Town Hospital. We met with a neurologist and an ENT. We were not rushed, encouraged to tell our LOONG story, and supported in the diagnosis of PANDAS/PANS. I think for anyone in the Midwest states of Iowa, Missouri, Kansas, or Nebraska; this would be a wonderful resource.

Used to love cats, even had two indoor cats for a time. Since I and DS are allergic, we gave them away. DS has Bartonella that we are cannot seem to clear. No more cats for us, ever!

Look for behaviors or lack of them that you have not seen in a long time. I remember our son had a days where he was so relaxed and his posture was just so comfortable and fluid. He also did not talk as loud. Good luck.

I think we are just going to go forward with new immunologist, since he is within driving distance of our home. We are not to the prescribing point yet for IVIg. We have a follow up in two weeks for labs and to go over what other specialists think. I am really trying not to look back--just forward. The good thing is that we will not have a large balance to pay a doctor for IVIg that happened in the past.

Our new immunologist is in network with Cigna. If I lose my job (highly possible), the doc is also a provider for DH insurance company (BCBS). New doc seems more savvy to the whole insurance run around. He knew right away what we would do if insurance would not pay. The costs at his office seem much more reasonable as well, so we shall wait and see. I despise all insurance companies at this point.