Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hello. Its been awhile since I posted and have been lurking, but I am in need of your expertise. My name is Heidi Harmon and I have an 8 year old son, diagnosed with mitochondrial encephelomyopathy. He is nonverbal has uncontrolled epilepsy, on 3 seizure drugs and has the VNS. He uses a wheelchair for mobility. He has a G-Tube we use for feeding although he gets food by mouth as well. He has started to be "gurgling" all the time. At first he was on 3 rounds of antibiotics thinking it was a respiratory infection, then, when those didn't help, we saw an allergist to see if he had increased secretions. The tests were normal. We then had an upper GI to see if his Fundoplication had become unwrapped and he was having reflux. That was normal. We then had a sinus CT scan to see if he had a sinus infection. That was normal. We now have had a swallow study which showed alot of pooling of food and saliva. His swallow is not very quick. It sat there for a while. We have started to just give G-Tube feedings but it seems that's not our problem. His saliva is pooling and his Sats will drop to the low 80's. We have oxygen at home to give him, but its not solving the problem. Any ideas what to do when the disease progresses and muscles get weaker when it comes to controlling saliva? My husband and I had decided not to do a Trach although I can't say we won't if put in a position where we have to make a decision between that and life. I just know a Trach would be bad for him as he would pull it. He pulls his tube all the time now and when we have oxygen by a nasal canula we have to hold his arms down so he won't pull it. I am starting to feel like we have no options to help him. I know its progression of the mito but want to keep him comfortable as long as I can. Any ideas would be great.. Thanks in advance Heidi Harmon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Heidi, That is indeed a tough position. speaking as both the speech therapist and a mito mommy, i know the dilemma you are facing. If he is aspirating (or even just having pooling) of his saliva, your safest bet may well be a trach. but of course the counter-balance to that deals with your son's quality of life and his willingness/ability to leave the trach in place. Yours is not an easy place to be in. There are some meds that also may decrease his saliva production. Let us know if we can help in any way ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi Heidi, Has anyone suggested medication to reduce the amount of saliva? Emilie takes Robinul, and it's helped with saliva a lot. -- Mom to: Emilie (18), mito--complex IV, cp, ld Kaitlin (18), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 We are exploring Botox injections to the salivary glands. This treatment was just suggested recently, so we have not had a chance to research the pros and cons. But the doctors told us that it would decrease the amout of oral secretions and therefore pooling. We will be meeting with a specialist soon to get more info before making a decision. My daughter is exclusively g-tube fed she does not require saliva to break down food. Jen Mom to Lucas (3 and healthy) and Kira (16 month; suspected Leigh's Disease) -----Original Message-----From: hilandgang@... Sent: Thursday, September 23, 2004 6:20 PMTo: Mito Subject: Re: Saliva Pooling-HelpHeidi,That is indeed a tough position. speaking as both the speech therapist and a mito mommy, i know the dilemma you are facing. If he is aspirating (or even just having pooling) of his saliva, your safest bet may well be a trach. but of course the counter-balance to that deals with your son's quality of life and his willingness/ability to leave the trach in place. Yours is not an easy place to be in. There are some meds that also may decrease his saliva production. Let us know if we can help in any wayruth Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 Heidi, Chelsea has been dealing witht his issue her entire life. I actually noticed she sounded 'gurgly' before we knew she had issues. Her ped always said it was probably environmental allergies. At 2 1/2, she was dx'd with severe silent aspiration via swallow study, and she also pooled her food and saliva at the back of her throat. She was not getting sick yet, so we opted not to get a gtube. Shortly after she started phenobarb for epilepsy, which worsened her swallow to the point of pneumonia and she got a gtube. She sounded like a drowning victim she was so weak, I often had people ask me if she was. I also started doing chest pt with meds 2+ x's day to help keep her lungs clear. And lots and lots of suctioning. Gradually, her cough has improved, but she produces a lot of mucous and still benefits from daily treatments. She has been seeing a pulmonologist for 4 yrs, who has dx'd her with asthma. He has approved many med changes to help control her problems. Currently, she uses pulmicourt daily and albuterol as needed (nebulizer) and takes Rynatan, an antihistimine and decongestant, as well as nasal sprays. I still do the chest pt, suction as needed, and she recently got a cough assist machine, which is a non-invasive suction machine. It blows air in and sucks it out using a mask over her nose and mouth. Despite all this, she still sounds gurgly much of the time, and coughs quite bit bit on her secretions. Fortunatly, her lungs stay clear when she is healthy. Her greatest danger is illness wearing her down to the point of aspirating. While there is a lot of cencern over this among her drs and therapists (and parents!), a trach is being avoided at all costs. I hope this doesn't sound too scattered, it has been a busy week! Let me know if you have any more ?'s e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 , We can't get into a pulmonologist..The one here in Kansas City is not taking new patients. We have an appointment with another one but can't get inot till December and this is getting to be a real problem. I have a friend that is a pulmonologist that treats adults that said he would try to help me in the mean time. What dose does your daughter take of the Robinal? It seems some doctors tend to see the diagnosis and give up on us..So frustrating! Thanks for all your help! Heidi Harmon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 Heidi, Emilie takes 2mg of Robinul three times a day. She's 18 and weighs about 100 pounds. I have also heard of surgery to control saliva--something to do with the salivary glands. Sorry can't remember what exactly is done. I believe there are doctors who specialize in this at Cincinnati Children's, so perhaps you could search on their web site. We never looked into this very seriously because the Robinul does a good job for Emilie. Good luck, -- Mom to: Emilie (18), mito--complex IV, cp, ld Kaitlin (18), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
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