cobbiemommy

DS, 15, has had unyielding fatigue and moderate anxiety for several years now. He was first treated for PANDAs with IVIg (great result then crash and burn), then treated for Lyme/Bartonella for two years and was on IV abx. for three months last summer. Contracted strep inside the lining of his nose. During the Lyme treatment, but before the IV abx, he received three doses of immunoglobulin and had much improvement in physical stamina and mental attitude. Insurance cut him off and would not pay for the treatment, even though he was precertified with autoimmune encephalopathy. We went through a year's worth of appeals, but with no positive outcome. Last August, we started with a new immunologist closer to home (only a two hour drive one-way). He recommended we go to Boys Town where they have a fantastic ENT and neurologist. In November, he had a T&A, recovered beautifully, but is still fatigued and has anxiety... His school work has progressed tremendously and he made the honor roll all four quarters this year!! This winter, he tried wrestling for the first time and got impetigo while on prophylactic antibiotics. He had to have three rounds of different oral antibiotics and two rounds of topical antibiotics. Still fatigued, still anxious. We did testing again of his streptococcal titers, and despite being vaccinated, he has a very poor antibody response. We are getting records of his infections to make the case for a diagnosis of specific antibody deficiency and IVIg. He is taking prophylactic abx, that are rotating every three weeks, but they do not seem to work very well for him. Has anyone else went this route? How did it work for you? Is the polysaccharide that is in strep the same type of substance that is in Lyme or Bartonella? Any advice is most appreciated... Cobbie

Ds, 14, has sinus drainage of the nastiest variety, again. He breathing is so noisy and I see him breathing through his mouth a lot. He just finished two weeks of Clindamycin for an impetigo-strep infection. This was his third round of abx for to clear up that particular infection. He has a deviated septum which they don't want to operate on until he is 18. He hasn't been allergy tested for three years and I wonder if he would benefit from new testing and allergy shots. We see both the ENT and the immunologist tomorrow. Any suggestions...

Ophelia, I want you to know that you are not alone. Sleep deprivation will definitely alter your mental and physical state. If the doctor prescribes something to help you sleep; at least try it. A good night's rest several days in a row will greatly help your wellbeing. Facebook, Snapchat, Instagram, and other social media sites should definitely be avoided during this time. People are only posting the best or most dramatic things; so their lives look wonderful and exciting when maybe they are actually horrible. I would look at Facebook and see all of these perky moms with healthy kids complaining about going to baseball games and soccer practice and I would get very angry and jealous. I had to quit social media for awhile for my own peace of mind. Surround yourself with humor and watch comedies if possible. This is very simplistic, I know, but I spent many hours watching "Andy Griffith" and "I Love Lucy" because they were no stress and they helped distract me from my situation. Avoid reading anything heavy or dramatic at this time. Your body and mind are healing, be gentle with yourself. Your friends have not totally abandoned you in that they don't care, but it is very hard for them to sustain the friendship at the previous level. What you may not realize that they may be caring for you from a distance. I have been told more than once that people were praying for me and my son that I had not seen in years. I wish they had just called me to talk, but I am still grateful for the prayers. You will come through this and be stronger for it, but it is a tough road. I will keep you in my prayers every day. Cobbie

We use Sacchromyces and Culturelle. The Sacchromyces is good because you can dose it with the abx and it helps prevent diarrhea.

Clindamycin did not cure my son's impetigo (strep), but it did calm down the worst of the tics. He also got the impetigo while taking prophylactic Keflex. We are about to start Bactim so I know what you are talking about with this resistant strep. Sigh... Maybe it is time for for you to see an immunologist?

For those of you who have children taking Namenda, how did your dr decide that Namenda was necessary? Was it through blood work? Trial and error? MRI? We have an ENT, immunologist, and a psychiatrist/neurologist in our corner who are willing to help and open to all ideas. It seems that the psychiatrist/neurologist would be the most likely place to start, but maybe I am wrong.... Please share your stories of how your child came to be taking this med. Thanks....

We did not have a good experience with intradermal skin testing for food allergies. There is a huge amount of false positive from skin testing for food allergies. Enzyme potentiated allergy shots and testing are also ripe with false positives. This was just our experience, but it was horrible. The doc had my son avoiding eggs, dairy, wheat, nuts, berries, chicken, etc. He was getting worse while taking the shots. The prick skin test may also be used to diagnose food allergies. Intradermal tests are not used to test for food allergies because of high false-positive results and the danger of causing a severe allergic reaction. http://www.nlm.nih.gov/medlineplus/ency/article/003519.htm Allergy testing should be done on the inner forearms (not the back) when the skin is clear. Also, there should have been a seven day break after taking the last dose of antihistamines. A RAST blood test is a great indicator for food allergies. I don't mean to discourage you from allergy testing, far from it, but please use the tried and true allergy testing and allergy shots. Sublingual therapy is available but not FDA approved, so there would be no insurance reimbursement. I have used allergy shots and they do make a world of difference in how the allergy sufferer feels!

Ds and DD both used Mupirocin in a compounded spray for their sinus issues. They both had their sinuses swabbed and cultured. It turns out that the quality of the lab has a huge impact on the quality of the findings. The doctor we had at the time ran them through the University of Missouri. It cost more; but it was so worth it!

Ds, 14, had horrible problems with math. We would have to review the concepts every single night and spent over an hour on math alone. I felt so bad for him, but we made it through. Memorization and maps have always been difficult for him as well. IVIg helped him to recover his math skills and now he is one of the brightest in his math class. Since his tonsillectomy, his grades in all subjects have been wonderful.

We had 10 days of abx and all was fine. Three days after going off abx, it all went to heck... Two steroid tapers later we were better than baseline. He is taking clindamycin now for impetigo (strep on the skin) and doc just ordered ten more days of it and he is doing well while on abx. We are three months out from his T&A and he is getting fantastic grades but still struggling socially. I would definitely ask the treating physician for something that they think will help. My thoughts are with you.

He got his first full nights sleep since November. Slept all night...

My son has been positive while on prophylactic abx. He just tested positive for impetigo (strep) while taking 500 mg daily of Keflex.

DS, 14, has a case of impetigo all over the right side of his chest and abdomen. Regular pediatrician prescribed oral Clindamycin. Has anyone else had experience with this med for impetigo? He got impetigo while on a prophylactic dose of Keflex (500 mg once a day). I feel so bad for him because he has had it for about ten days, but I thought it was a new fungal infection and gave him the meds for that. Hopefully, while on abx, his verbal ticcing will calm down. Sigh...

Have you talked to ENT about tonsillectomy? Our doc is past president of national association of otolaryngologists and a huge advocate for PANDAs patients. http://health.usnews.com/doctors/rodney-lusk-11203 If your doctor is in need of convincing, I feel confident that his office would talk to another physician and explain their rationale for treatment. After a some bumpy spots, my DS is two months out from surgery and progressing very nicely.

I highly recommend dr b. his office no longer accepts Cigna, just so you know. He would be worth the money out of pocket. He brought my son back from the brink. You need another medical opinion.

Did the trip to Mayo produce any findings? I think pictures can be very helpful in documenting progress.

Dr. Koybashi in Omaha, NE is actually Dr. Roger Kobayashi. He works with Dr. Rodney Lusk, an ENT at Boys Town Hospital. They are very interested in PANDAs research. I highly recommend them.

My DD is going through family albums for her senior slideshow at school. As we looked through the books, there is such a dramatic shift in my son's facial expressions from age three to age five. How anyone in the medical field could have thought that was normal is beyond me. We have spent almost ten years taming this beast known as PANDAs, although for six of those we did not know what we were dealing with. Ds, is about 85 percent at the moment due to two steroid tapers and a tonsillectomy. When I think of all the time and heartache that we have spent struggling with this disorder, it boggles the mind...

I have no words of wisdom for you other than a virtual hug. I am a firm believer that even negative symptoms give clues to your doctors on how to treat your child. Something is being stirred up in your child's body; I hope you get some healing and answers soon.

Good luck! Just remember to have your child drink lots of liquids. It will help tremendously.

Our son was asleep for spect scan so they could get good images. Best of luck to you with this.

DS, 14, took a shower in his own bathroom, today!!!!! It has been years since he would take a shower in there. He always said he felt claustrophobic in there (full size tub). He also went Christmas shopping for two hours. It feels like we are making some progress.

Dr's office called and increased the steroids. They have always worked in the past, so let's see how it goes.

Please add Cobbiemmmy and DS to the list. I will pray for others.

Negative symptoms are still symptoms: they could give clues. I have been going over all the variable in my son's health and his recent decline. 1) I started with the removal of Augmentin XR. Within four days of stopping this abx, DS was moody, irritable, and downright nasty. Augmentin XR has a unique side effect/benefit. Clauvulinic acid, one of the active ingredients in Augmentin XR, blocks the reception of glutamate. An excess of glutamate can cause all number of psychiatric and physical behaviors. 2) DS, has been exerting enormous physical energy in wrestling. He literally has soaking clothes when he gets in the vehicle after practice. He tells me that he gives it his all and often is so tired he cannot get up off the mat after a workout. 3) His worst days have all been on days of practice and he is just drained. 4) Hypoglycemia-DS has had two incidents of hypoglycemia in the past. He would get very moody and irritable beyond just normal hunger pains. After a meal with some carbs he always seemed to come back to his true nature. Maybe that is why peanut butter is helpful for him as well?? Peanut butter would spike his glucose as well as give him tryptophan. There is a family history of hypoglycemia in our family. We have always just made sure that he had a snack or ate on time. Since DS never did sports before, especially right after school, this issue had never come up before. I don't think he is getting enough to eat at lunch for the amount of energy that he is expending thanks to the new lunch standards. He has grown several inches taller and dropped 19 pounds since July. 5) Monday, DS, had breath that smelled like nail polish remover. That smell is acetone. When the body doesn't have enough sugar (glucose), it starts catablolizes proteins. The smell of those digested proteins is acetone. (Thank you Dr. Pilgrim; my high school chemistry teacher.) The smell went away after he ate a snack and then dinner. Hypoglycemia can also cause excessive gluatamate concentrations. It is explained in this link: http://en.wikipedia.org/wiki/Excitotoxicity If glutamate is part of the problem, then low blood sugar would make it even worse. For those of you who know about glutamate, is this scenario possible?? It seems so logical to me, but science is definitely not my strong point.