sbgrace Posted August 31, 2012 Share Posted August 31, 2012 (edited) This is really long and I apologize. I just thought maybe people here might understand because I don't know anyone in real life who can. I am incredibly discouraged and just scared I guess. My son has a bunch of dx.--but the main stuff falls under autism spectrum, ADHD, and a metabolic condition that brings with it health issues. About two months ago he "came down" with severe OCD. We were in the midst of a move and at first I just didn't know what to think. With the OCD came extreme emotional control issues and he also began repeating his last words (go to the park, park, park). Our life has become a complete horror. He doesn't sleep (he might stop breathing, he thinks he tasted poison, he might have swallowed spit call the ambulance, etc....all OCD stuff). On the worst days he barely eats and spits out his food because it might have something that will kill him. He's thrown in obsessions about religious stuff--how can he be sure he's a Christian type things--and it's just so sad. When he's not constantly checking his breathing, wiping his mouth, spitting out "poison", asking me for he bazillionth time if he might be dying, etc. he's melting down over the smallest thing. We had a two hour melt down yesterday because I "ruined his dreams" by telling him his great uncle, an uncle he has never met, isn't going to buy him a mansion. That started about 5 minutes after he got up. Then he went back to it later in the evening and had another over the same thing. Anyway, today we got tests back for PANDAS/PITANDS. It really doesn't look, to me, like it's that. The doctor said it might be a strep and he's not building antibodies (no positives at all on the extensive strep blood work and I've never known him to have strep) or it could be a viral response to hand/foot/mouth disease which he was positive for. Or it could be just "normal" OCD. The forever kind. I'm just so very, very devastated. I don't feel like we can handle this. I'm sad for my son because he already had so many challenges. Anyway, the doctor prescribed 10 days of an antibiotic to see if he responds. If he doesn't we'll try an anti-viral. If that doesn't do anything we'll move to SSRI I guess. But I've been doing NAC which, in studies, should be as good or better than an SSRI. For a week or so it seemed to help and then he got worse again. I can up the dose after we do the trials of other meds but I'm terrified nothing will help him. We just really needed a break (our family) from two incredibly tough years and now things got worse. Beyond that I am concerned for my son's future and it kills me to see my happy kid get taken over by this. Edited August 31, 2012 by sbgrace Quote Link to comment Share on other sites More sharing options...
2boysmom Posted August 31, 2012 Share Posted August 31, 2012 Just wanted to say, I read your post and am praying for you. So glad you felt you could share here and feel safe. I'm sure others here will also chime too. :grouphug: Quote Link to comment Share on other sites More sharing options...
Elizabeth in MN Posted August 31, 2012 Share Posted August 31, 2012 I too have read your post and send you as many hugs as I can. My Dad had OCD and medications helped him tremendously. Quote Link to comment Share on other sites More sharing options...
Guest Posted August 31, 2012 Share Posted August 31, 2012 :grouphug: Keeping you and your boy in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Amirah Posted August 31, 2012 Share Posted August 31, 2012 :grouphug: praying for your family and your son. hopefully things get better and you all get a break Quote Link to comment Share on other sites More sharing options...
Miss Marple Posted August 31, 2012 Share Posted August 31, 2012 :grouphug: Praying for you here. I understand what you are going through. My wonderful, most compliant child became an OCD mess almost over night. The thinking is that it was probably PANDAs. We didn't check into that soon enough, but it seemed to follow the course (post strep outbreak). All I could think of was that I wanted my son back. It's been a little over 2 years and he is back to normal. I hope the same happens for your son. I know the heartbreak as you watch these kids...will this be his life forever? It is a tough road to walk; remember the Lord is walking it with you :) Quote Link to comment Share on other sites More sharing options...
Twilight Woods Posted August 31, 2012 Share Posted August 31, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Jennifer-72 Posted August 31, 2012 Share Posted August 31, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
RamonaQ Posted August 31, 2012 Share Posted August 31, 2012 This sounds so tough:grouphug:.:grouphug: Prayers. Quote Link to comment Share on other sites More sharing options...
HelenVN Posted August 31, 2012 Share Posted August 31, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted August 31, 2012 Share Posted August 31, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
butterflymommy Posted August 31, 2012 Share Posted August 31, 2012 We have a family friend whose son developed sudden onset OCD around age 8-9. For him his main phobia was rabies, not poison. If he saw a dog he was convinced he had rabies. Later in life the phobias switched to AIDS/ HIV and head trauma. His diagnoses are OCD, tourettes, and NVLD. He does much better on prozac. :grouphug: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted August 31, 2012 Share Posted August 31, 2012 I know you've had A LOT to deal with. I'm sure you're feeling, will it ever stop?!! I'm sorry for your ds and for you that both of you are going through such a tough time. I hope it's just one of those things that passes. I wouldn't think about the forever part and just go day by day as much as you can. That's enough. I wonder if the poison part has to do with his GI history. ?? Quote Link to comment Share on other sites More sharing options...
PrincessAriel Posted August 31, 2012 Share Posted August 31, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
hsmom2011 Posted August 31, 2012 Share Posted August 31, 2012 This is really long and I apologize. I just thought maybe people here might understand because I don't know anyone in real life who can. I am incredibly discouraged and just scared I guess. My son has a bunch of dx.--but the main stuff falls under autism spectrum, ADHD, and a metabolic condition that brings with it health issues. About two months ago he "came down" with severe OCD. We were in the midst of a move and at first I just didn't know what to think. With the OCD came extreme emotional control issues and he also began repeating his last words (go to the park, park, park). Our life has become a complete horror. He doesn't sleep (he might stop breathing, he thinks he tasted poison, he might have swallowed spit call the ambulance, etc....all OCD stuff). On the worst days he barely eats and spits out his food because it might have something that will kill him. He's thrown in obsessions about religious stuff--how can he be sure he's a Christian type things--and it's just so sad. When he's not constantly checking his breathing, wiping his mouth, spitting out "poison", asking me for he bazillionth time if he might be dying, etc. he's melting down over the smallest thing. We had a two hour melt down yesterday because I "ruined his dreams" by telling him his great uncle, an uncle he has never met, isn't going to buy him a mansion. That started about 5 minutes after he got up. Then he went back to it later in the evening and had another over the same thing. Anyway, today we got tests back for PANDAS/PITANDS. It really doesn't look, to me, like it's that. The doctor said it might be a strep and he's not building antibodies (no positives at all on the extensive strep blood work and I've never known him to have strep) or it could be a viral response to hand/foot/mouth disease which he was positive for. Or it could be just "normal" OCD. The forever kind. I'm just so very, very devastated. I don't feel like we can handle this. I'm sad for my son because he already had so many challenges. Anyway, the doctor prescribed 10 days of an antibiotic to see if he responds. If he doesn't we'll try an anti-viral. If that doesn't do anything we'll move to SSRI I guess. But I've been doing NAC which, in studies, should be as good or better than an SSRI. For a week or so it seemed to help and then he got worse again. I can up the dose after we do the trials of other meds but I'm terrified nothing will help him. We just really needed a break (our family) from two incredibly tough years and now things got worse. Beyond that I am concerned for my son's future and it kills me to see my happy kid get taken over by this. :grouphug: Quote Link to comment Share on other sites More sharing options...
dkpalaska Posted August 31, 2012 Share Posted August 31, 2012 :grouphug::grouphug::grouphug: I'm so sorry that it's all hard right now. And you are right - the folks here know what "hard" really looks like when it comes to working with and worrying over our kids. My prayers are with you. Please let us know how it turns out. Whether a passing thing or not, support and knowledge are always here. Quote Link to comment Share on other sites More sharing options...
happycc Posted August 31, 2012 Share Posted August 31, 2012 (edited) My now 18yrs old around your son's age started getting really bad OCD symptoms on top of his already pdd-nos/adhd/ seizure like behavior/Bipolar stuff. He had always been a difficult child-very moody and had uncontrollable violent rages. He started having to take 6-9 showers a day and change his clothes a million times a day. He would become hyperfocused on certain topics and follow us around nonstop talking about it. Luckily we didn't have food, poison issues but he claimed that people were out to get him-to tease him, to hurt him, to punish him, to make fun of him. He started having tics-couldn't stop blinking his eyes, repeating himself over and over again. He had vocal tics where he would suddenly scream out or eek out or screech out or something like that or break out in a tap dance or swim stroke out of the blue. He started having to sniff people's behinds and feet-mere stranger walking on the street. He started telling me that he hated himself. He started saying he saw dead people walking out our front door. He started hearing things telling him to do bad things. He got upset because he thought someone was teasing him (which they were not) and ran into the busy street, lying down and wanting a car to run over him. (I have had to restrain him many times with bruises all over my body from him hitting and squirming and biting me-headbutting was the worst.) He got upset again for the same reason and locked himself in our car without telling anyone and nearly died of heat exhaustion. Academically, we just couldn't get a handle on it. (Not until he was more stable). As a teen he has broken my wrist, tried to hang himself twice, gotten a bunch of girlfriends who end up dumping him because frankly he is a little too overwhelming, struggles in school etc. Hospitalization came up a lot....I just wasn;t ready to go that route although when he tried to hang himself he was 5150 but released that day as the reason why he took that course was because he stopped taking his meds. (He has since learned that he HAS to take his medications. It nearly killed me when he tried to hang himself.) Those were some very very scary times for our family. I am not sure how he made it to 18 yrs old. He is doing much better now but still has his struggles. He remembers how hard it was. He now has two jobs one in child care at 24 hour fitness and another coaching gymnastics at a gymnastics place. He is in his junior year in high school and taking high school and going to a local community college for English and he is involved in church. He is a little neurotic about the whole religious thing too. Now he is seeing some kids somewhat similar to him at the places he works with and tells the parents I was just like your son but probably worse. So if my mom can do it, so can you. It gives the parents hope I guess. Things I have tried: Allergy testing Food sensitivity/GFCF/SCD diets Patterning Dealing with yeast issues as he always had GI issues-severe diarrhea and constipation and pain Therapy/birth trauma therapy early intervention Sensory therapy Speech therapy occupational therapy physical therapy antibiotic therapy cranial sacral therapy chiropractic homeopathy all kinds of educational curriculums out there.... Finally-medications. He is on THREE medications after a trial of a gazillion. He has been on it since he was 8-9yrs old. I had not choice but to put him on meds when he started getting suicidal. Sometimes I wish I had done it sooner so he didn;t have to suffer so much from his OCD symptoms. His siblings was also greatly affected by his behavior. But yet he was so young. I wish I can say the path will be easy but it is not. One day at a time and many days it is one step forward, two step backs. But if I can live through the above, you can too. It will build character and strength and stamina and resilience. COMPASSION. Keep a journal because someday you will look back and see how far he has come. Perhaps you can publish it and help others. You are not alone. There are others out there and others have walked your path. I will be here for you. Lots, lots, lots, lots of prayers. Edited August 31, 2012 by happycc Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted August 31, 2012 Share Posted August 31, 2012 :grouphug::grouphug::grouphug: You may want to consider trying inositol. I am going to be asking our integrative neurodevelopmental pediatrician about it next week in regards to my DS' anxiety/germ phobia. Quote Link to comment Share on other sites More sharing options...
freeindeed Posted August 31, 2012 Share Posted August 31, 2012 :grouphug: The hard times can be so hard, but I'm praying that there is a much brighter time in the near future. Lots of love being sent your way!:grouphug: Quote Link to comment Share on other sites More sharing options...
happycc Posted September 1, 2012 Share Posted September 1, 2012 who is your integrative neurodevelopmental pediatrician? I would be interested in having my 8yrs old seeing one. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted September 1, 2012 Author Share Posted September 1, 2012 Thank you every one who took the time to read and respond here. It's amazing how much it helped me to get this "out" and the responses make me feel so much less alone. Thank you! He slept through the night last night. It's the first time in a while and it's amazon how much some sleep can help me. So I got sleep last night finally and took a nap today too! I don't know how much of that was exhaustion and how much the desire to escape perhaps. :tongue_smilie: Thank you all. Quote Link to comment Share on other sites More sharing options...
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