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I read that one Mom (Michele) referred to Dr Don Gilbert in a post. If you are reading this, is he your child's neurologist? I ask because he is my son's doctor. I appreciated all his help over the last few months, but I feel I must now branch out. He wouldn't back my request for preventative antibiotics even when my son had strep 3 times in 6 months. The last time was one month after having his tonsils out. Once he said no" to it, my ped automatically turned me down. I feel I am hitting a dead end. Have you had an luck finding anyone else in OH who has helped?

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Hi. We have never seen D. Gilbert but have spoken on the phone and online. I know he was in on the PANDAS research and called him to try to see where he stood on treatment. He wouldn't give me an exact answer so I never traveled to Cincinnatti. We are in Akron/Canton area. I have seen many Dr's from here to Cleveland in the past six years. I have never seen a neuro who would do the antibiotic therapy. They will medicate for the tics and emotional behaviors though. I don't know where you are in OH but I can give you a list of Dr's we have seen. I think we went through the whole Neuro group at Children's at Akron plus allergy. I could only get Pen VK from Enlow at Childrens. He wouldn't try anything stronger despite research articles I gave him. The most success was with immunology at University Dr. Berger and that is where I got the antibiotics in the beginning. He has now left for research only at Case and his replacements didn't want to treat PANDAS. Our ped is now somewhat on board and will prescribe antibiotics Omnicef but we have not got Azith yet. None of the neuros have been on board with PANDAS or the antibiotics. We see Dr. Erenberg at Cleve Clinic for the tics and tourettes. The psychiatrist have been willing to work with us on psychological symptoms with medication. We are using Celexa and Abilify. We got the PANDAS diagnosis from T Murphy in Florida. Even Murphy didn't recommend long term prophylaxis but using antibiotics when positive for strep. She seemed to think we would need to treat for tics and ADHD and moods down the road. Next week we are trying a different psychiatrist and neurologist at University hospital Cleve. They specialize in ocd and tics and Aspergers. Who knows? We keep trying. Maybe one of these times we can get the right Dr! Someone recommended a Dr. Nelson a rheumatologst in Toledo but I don't know how she treats PANDAS either and she is 3 hours away. If anyone here has seen her please let us know.

 

Michele

 

 

I read that one Mom (Michele) referred to Dr Don Gilbert in a post. If you are reading this, is he your child's neurologist? I ask because he is my son's doctor. I appreciated all his help over the last few months, but I feel I must now branch out. He wouldn't back my request for preventative antibiotics even when my son had strep 3 times in 6 months. The last time was one month after having his tonsils out. Once he said no" to it, my ped automatically turned me down. I feel I am hitting a dead end. Have you had an luck finding anyone else in OH who has helped?
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I live in Cincinnati, thus Dr Gilbert.My last email to him was him saying to have my son see a psychiatrist and psychologist since he had a setback coinciding w/ a neg strep test. But it was only a month after a pos strep test,PANDAS resurfacing and allergies starting. I know those behavior changes were related to PANDAS, but Dr Gilbert isn't convinced.I'm thinking Dr Gilbert may think my son is having residual symtoms because he had strep/PANDAS so many times in such a short period. Since I last spoke to him, my son is already doing dramatically better w/o any outside help,but I am playing by the rules and following through on these appointments. I am going to see a therapist tomorrow to give background and I have a psych consut on 6/8 w/ a Dr Harris. She's worked w/ Dr Gilbert before. I also need to make an appointment w/Dr Gilbert and speak to him in person.

 

I am trying hard to stay local because of my two other kids. Like many others, I am just tired of phone call after phone call and email after email explaining our "situation".But it must be done. I am so happy I have never made an appointment w/o interviewing people first. Some are jerks!

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If you want to make a trip towards Akron/Cleve you can call me! We do the two hour Cleve trip quite often! I have four kids and it is a lot to drag them but it is the only way for me to go because my husband is not able to get off. We have done two psychologist so far. Neither seemed to really get PANDAS. The first wanted no rewards or gifts because he thought my son was manipulating us and spoiled. The second one wanted constant rewards for good behavior charts. CBT with time outs using 1,2,3 magic. It was through Dr. Benore with his new felow Asia Minor at Childrens Hospital Akron. I don't think she knew how to really help us because his compulsions for getting things got worse. Of course the psych and ADD meds being changed and not working didn't help. The psychiatrist said that we need a good psychologist for my son to talk to. He gets pretty down on himself. He is having trouble in relationships and argues alot about how he is right.

 

I am using word of mouth from TSA to go to University Hospital Dr's next. I am just looking for the right Dr who gets what we are going through and knows the treatment that works best! I would really like to start a support group for PANDAS in OH. It is great your son's symptoms are better. Ours son's used to go away between strep PANDAS illness but then became more constant about a year ago. Now we see little resolve. It is like he always has problems with behaviors like compulsiveness, attention and anger. The tics do change and right now he has a butt picking compulsion and some verbal tics. I am not kidding. He picks his butt constantly. We even tried worm meds twice and nothing got better. Usually the tics resolve in a few months. I think the Strattera started it when he was having loose bowel movements. Then he got it irritated and then kept messing with it until it became a compulsion. It is really embarrasing when he is playing sports and picking his butt the whole time! I think repeat strep exposure while not on meds for five years is what caused him the psych problems we are seeing today. I only wish a Dr would have helped us earlier on. He was so young at one year old - five and they don't like to medicate little ones. I don't think antibiotics will treat this though. It is a combination of antibiotics with psych meds and psychologists that are going to get them on the right track. Antibiotics alone will not take OCD and emotional issues away. Maybe IVIG but it is risky and unproven and expensive so we will wait for now on it.

 

I live in Cincinnati, thus Dr Gilbert.My last email to him was him saying to have my son see a psychiatrist and psychologist since he had a setback coinciding w/ a neg strep test. But it was only a month after a pos strep test,PANDAS resurfacing and allergies starting. I know those behavior changes were related to PANDAS, but Dr Gilbert isn't convinced.I'm thinking Dr Gilbert may think my son is having residual symtoms because he had strep/PANDAS so many times in such a short period. Since I last spoke to him, my son is already doing dramatically better w/o any outside help,but I am playing by the rules and following through on these appointments. I am going to see a therapist tomorrow to give background and I have ad psych consut on 6/8 w/ a Dr Harris. She's worked w/ Dr Gilbert before. I also need to make an appointment w/Dr Gilbert and speak to him in person.

 

I am trying hard to stay local because of my two other kids. Like many others, I am just tired of phone call after phone call and email after email explaining our "situation".But it must be done. I am so happy I have never made an appointment w/o interviewing people first. Some are jerks!

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Saying your child is spoiled, time outs, or good behavior charts would not work my son. If they tell me that, I don't think I could keep a straight face. On my own, I've tried, the "hit the pillow when your mad" approach, that never worked. I tried lists of what he needs to do. Telling him he could choose the order, but he must complete all of it. All he would do is add things to the list like watch tv and play.

 

After calling 13 psychologists in my area, I found a masters level clinician that says she has seen 2 PANDAS patients. I get paranoid that some may fib to get a patient, but I must trust she is telling me the truth. My conversation with her was better than the psychologists who laughed and poked fun at the situation. I was left speechless on those phone calls. I am worried that one psychologist told me that CBT wouldn't really work with a 5 year old. I am going to be very curious what they end up suggesting to me. Even those his meltdowns have stopped (for now), he still has OCD, the NEED to be in control, and the need for routine. He also has such a disgust of his two year old sister. If his routine is broken and he has not "okayed" it, we run into problems. But, like I said, he has been meltdown free for about 4 or 5 days now. That is promising. I am also nervous because my son has a speech disorder and is difficult to understand. She doesn't want me in the room with them. What if she can't understand him? Let's add to my stress.

 

One thing I find interesting is that I have not heard many others refer to rage. My son's rage was horrible the second time. He would just punch me, choke him, tell me to go to heaven. Luckily, the rage was never really put towads my other children. I remember the saddest day was when I had to hide the knives because I just couldn't take a chance. I knew in my heart he wouldn't do anything, but I couldn't chance it either. In that time, I began to be very honest with my son, even though he was only five. If you do this, I can die. You can die.I don't know what it is like to die. At times if I threatened to bring him to the police station and so they can tell him what happens to people who act like that Sometimes, he would calm down. During some rages, I would tackle him, hold his arms down, and hug him rock him and sing. Amazingly, he would calm down in time.

 

How old is your son? Does he have an IEP for this and do you get support through your school system? Since my son has a bad speech disorder, he gets speech therapy through the school district. Once PANDAS arose, they were very kind. PANDAS is now reflected in his IEP and they now know to keep a close eye on him that once he starts kindergarten. I have some comfort in that.

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Andrew is seven. I have been going at this PANDAS research hard for about three years but he had symptoms since age one. School has been a nightmare this year. First grade was all day and a huge adjudtment for him. He spent the first six months in tantrums everyday from 4-8 PM. Plus didn't want to get ready each morning. School is hard for him because of visual perceptial and fine and gross motor issues. Reading came easy but Math, Spelling and writing not as much. Finally after a year of fighting OHI we got the IEP in place for tutoring. The school thinks he is fine. They act like he shows no troubles there. So I had to prove his academic troubles were a result of the Tourettes/PANDAS. Because he shows no behavior issues there , they saw it as a home discipline issue if we were the only ones having problems with him. His teacher has tried a home/school report and now he goes to school much easier and gets ready alone.

The rage is bad for him. He loses it easily and quickly. He thinks people are out to be mean to him. Luckily he gets invited to kids parties and it seems to be more about us and close neighbor child that he is inraged with. I worked for the past 5 months to be consistant and reward his good behaviors and time him out. However because he acts impulsive he doesn't think the consequences through first and he hyperfocuses on the rewards.

I would want to be in the room with him also. You are the one who will work with him at home so he should be giving you suggestions. I have to get busy on the Dr. info for tomorrow. Have you ever considered Aspergers? So many of the symptoms fit us but he is social.

 

Michele

Saying your child is spoiled, time outs, or good behavior charts would not work my son. If they tell me that, I don't think I could keep a straight face. On my own, I've tried, the "hit the pillow when your mad" approach, that never worked. I tried lists of what he needs to do. Telling him he could choose the order, but he must complete all of it. All he would do is add things to the list like watch tv and play.

 

After calling 13 psychologists in my area, I found a masters level clinician that says she has seen 2 PANDAS patients. I get paranoid that some may fib to get a patient, but I must trust she is telling me the truth. My conversation with her was better than the psychologists who laughed and poked fun at the situation. I was left speechless on those phone calls. I am worried that one psychologist told me that CBT wouldn't really work with a 5 year old. I am going to be very curious what they end up suggesting to me. Even those his meltdowns have stopped (for now), he still has OCD, the NEED to be in control, and the need for routine. He also has such a disgust of his two year old sister. If his routine is broken and he has not "okayed" it, we run into problems. But, like I said, he has been meltdown free for about 4 or 5 days now. That is promising. I am also nervous because my son has a speech disorder and is difficult to understand. She doesn't want me in the room with them. What if she can't understand him? Let's add to my stress.

 

One thing I find interesting is that I have not heard many others refer to rage. My son's rage was horrible the second time. He would just punch me, choke him, tell me to go to heaven. Luckily, the rage was never really put towads my other children. I remember the saddest day was when I had to hide the knives because I just couldn't take a chance. I knew in my heart he wouldn't do anything, but I couldn't chance it either. In that time, I began to be very honest with my son, even though he was only five. If you do this, I can die. You can die.I don't know what it is like to die. At times if I threatened to bring him to the police station and so they can tell him what happens to people who act like that Sometimes, he would calm down. During some rages, I would tackle him, hold his arms down, and hug him rock him and sing. Amazingly, he would calm down in time.

 

How old is your son? Does he have an IEP for this and do you get support through your school system? Since my son has a bad speech disorder, he gets speech therapy through the school district. Once PANDAS arose, they were very kind. PANDAS is now reflected in his IEP and they now know to keep a close eye on him that once he starts kindergarten. I have some comfort in that.

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My son is the same about school. Once he gets there and we leave, he's fine. Getting him there is the struggle. I have to wake him up at 6:30am to have him ready to leave the house at 8:45am. Do they just say there's no need for evaluations since it doesn't affect his school work? That's what they tell me about my older son who has a speech delay. They won't even evaluate him. Have you gotten specfic and, in writing, asked for a sensory profile (for any OCD) and an eval from the school pyschologist? The Early Childhood people told me it's easier to get your foot in the door before they are in kindergarten. So that may be why I am being "lucky" with my son's IEP.Once they are enrolled in elementary, you "play by different rules" and it's hard to get what you need.

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I fought my butt off for an IEP this school year. Nobody would agree with me in the school district that he needed it. They all said he was too average. Well a few phone calls to the school district big wigs and to Columbus and they qualified him under OHI. He was failing but they still were saying how great he was doing! Baloney. It comes down to money and they don't want to spend it unless you fight them. I joined IEP groups on Yahoo also. I called attorneys and psychologists who do school advocating services. He is going to get some help now. It still is not perfect but a starting point. He will get tutoring help at school and OT. I don't think they have been really consistant this year getting it going since March but he is getting more then before. It is hard when a kid is average IQ and struggling to get help then if a kid has a low IQ and is struggling. Plus he is not a behavior issue for them. So they figure it must be a parent problem. Then if you come off too agressive they really think it is a parent problem. I don't know if I could have qualified fo EI with him because his early dev walking and talking were on time. It wasn't until later that the delays showed up. Even now at 7 alot of things can be contributed to being a 7 year old boy!

 

Today we got a diagnosis of Aspergers, tourettes and ADHD from the new psychiatrist, he even included the PANDAS. I have been thinking he was possibly Aspergers for sometime but it takes time for these things to sometimes really show up. Now everything is making more sense.

 

 

My son is the same about school. Once he gets there and we leave, he's fine. Getting him there is the struggle. I have to wake him up at 6:30am to have him ready to leave the house at 8:45am. Do they just say there's no need for evaluations since it doesn't affect his school work? That's what they tell me about my older son who has a speech delay. They won't even evaluate him. Have you gotten specfic and, in writing, asked for a sensory profile (for any OCD) and an eval from the school pyschologist? The Early Childhood people told me it's easier to get your foot in the door before they are in kindergarten. So that may be why I am being "lucky" with my son's IEP.Once they are enrolled in elementary, you "play by different rules" and it's hard to get what you need.
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